Yes, there are good reasons(s) they (we) ALL want to know where our immunity levels are when it come to B and A, and to know it BEFORE we start our C therapy and it is not just to satisfy weird insurance people requirements. Knowing your A and B status, and knowing your degrees of immunity to A & B is important, not knowing your A & B immunity status and starting C therapy can hold potential for negative consequences.
What a rig-a-ma-role getting your 8 weeks of Harvoni!
I know you already said they have agreed to a 4 week blood draw for you (LFT's and a VL), make sure you get that on time, also ask for the same labs for EOT (an 8 week LFT and VL) - I would want my EOT VL drawnresults back and known.
That first pill down the hatch you are going to feel in better control fer sure. Starting therapy is a strengthening act. You'll likely gain some feelings of security as soon as you start, just knowing you are taking one of the worlds best designed drugs in the world, and knowing you are trouncing this virus forever, with each pill! You are about to be amazingly successful! C.
Observer said
Jan 8, 2019
Hey lil, I dont know why I didnt greet you yet, but I definitely want to say its nice to meet you. I hope your pills show up soon so you can get on your train and kick some dragon butt.
Remember your water and be consistent with your pill time...
Cheddy said
Jan 7, 2019
Hey Lil,
Hang in there and stay in their face until you get your goods. There can be so many snags along this journey, but we just deal with them one at a time to get to the finish line. Believe me, it's worth it. If you're feeling out of control, just think how much of it you will regain by ostracizing this virus.
Don't forget your water (we just keep saying it).
Best of luck and good health,
Cheddy
5-1-18 said
Jan 7, 2019
good luck getting your pills soon lil'
5
lilbrownie said
Jan 7, 2019
I hope everyone here had a wonderful holiday season.
I haven't posted in a while , mainly because I have been waiting. And waiting some more. In the meantime, I have been trying to take my mind off this completely. It got to be super annoying, especially since I have control issues
So here is the update. Blue Cross approves my Harvoni (eight weeks )
My Doctors office prefers a certain specialty pharmacy called Meijer. Meijer submits to OptumRX, the company who handles all the prescription end of our health plan.
OptumRX refuses to use Meijer, (who did all the legwork, submitted all paperwork, and kept in contact with me throughout the entire process) Meijer calls me and Doctors office to inform us that OptumRX uses ONLY Briova Specialty Pharmacy (OptumRX coincidentally OWNS Briova )
Briova takes over, everything gets confused and delayed. Briova Pharmacist says Blue Cross requires HIV test. Blue Cross says , "No , we don't, there is already an approved preauthorization, which is backed up and verified by OptumRX. Briova finally realizes all the necessary tests are done, pre-auth done, so FINALLY I get the green light, Briova applies my Harvoni COPAY coupon, (which the Briova customer service agent told me about, I didn't know!)
I went in today to pick up my pills at the Doctors office; and lo and behold, they are not there yet! So they call Briova, and were told they haven't shipped yet.
I called Briova again today, and they say it is in the pipeline to be shipped it MAY be at Doctors office tomorrow. I'll believe it when I see it heh.
In Briova's defense, they had this dumped in their lap WAY after the fact. If my doctor's office had simply called OPTUMRX first, they would have known that they ONLY use Briova for Harvoni. If anyone reads this that may be considering treatment, make sure you find out which specialty pharmacy your insurance plan is tied to. It may save time and frustration.
Big picture, and in all honesty, I am not complaining too much about all this. It is an expensive treatment. Many people have no access to it all ALL. I am grateful that I am even able to procure what should be available to everyone who has Hep C.
My train is delayed, but hell I waited this long to get treated, what's a few more days :)
PS: in answer to Canuck's question about immunity to HepB and A, I did ask, thanks to you! I was told I was immune, that was one of the tests required by Blue Cross to approve.
Thanks, everyone for support, and excellent advice!
-- Edited by lilbrownie on Monday 7th of January 2019 03:03:15 PM
Canuck said
Dec 22, 2018
LillB,
Tig said it all - especially about drinking lots of water (spread out over your waking hours). Just choose a time of day that is easiest for you to remember to take your harvoni, make it convenient to your normal daily schedule - although you are allowed to take harvoni on an empty stomache i would opt to take it with a meal (just what i would opt to do based on a few bits of data I have read about drug absorption/and or gastric tolerance). The monograph will state that you can take it with OR without food.
You can go here and read the same paper monograph insert that will come with your harvoni package. On page 27/28, about being able to take harvoni with or without food, interaction info, and much more in it's many pages. http://www.gilead.ca/application/files/6715/2589/0388/Harvoni_English_PM_e170097-GS-009.pdf
If it was me, I would stop the turkey tail now (perhaps wean it to nothing as soon as you can - I have no idea about what is advised as far as turkey tail cessation) as your DAA treatment is imminent. Stopping turkey tail sooner than later is only based on my uneducated opinion that there is likely less info available out there about turkey tail and possible things like accumulative effects than there is on some other supplements people might more routinely take. You and Tig already have it right though, discuss everything very thoroughly with your doc/nurse/treatment advisors about magnesium use (and any of your sups/meds period) when on HCV treatment.
Adopting a "general" rule of no sups period if possible while on HCV treatment IS easier, as far a sorting which ones might have some sort of unwanted effect. We are interested in seeing the reaction of your viral infection in response to the DAA and not to the influence of anything else
About hep a/b - just ask them if they did test your existing levels of immunity - it should be that they have already confirmed you own a sufficient hepb immunity level prior to starting hepc treatment.
As it appears you have increased from your prior F0 (I think you said in 2013 by biopsy) to your current F2 (by blood test method), it certainly would not hurt to have ongoing future Fscore assessments done by blood methods, but also determined by easy fibroscans (if these would be easy for you to access/procure). All of these things (fibroscans and ongoing comparative U/S's in future) are just very good following and info to see what and how your liver is doing and how it behaves/resolves after cure. In my perfect world i would have wanted a current U/S and a fibroscan before my treatment and for them to be repeated post-treatment, to see how things were just before and then to be able to see how things go after.
Thanks for filling us in on your hx so well.
Good that you already know that during your 8 week treatment you will be getting a week 4 VL done, ask if you could please also have an EOT one done - I would strive to have the EOT one drawn at least a few days shy of the EOT. Once you are planning your start date - mark your calendar so you know when exactly (what day) your 4 week VL draw falls on, and what the "open working lab" days are just prior to your EOT - so you can plan/arrange lab draws accordingly. When you are on a short treatment time - you have less room for being late with lab feedback, better to know your 4 week results and your EOT results a few days early than a few days late!
Rest easy, your harvoni help is on the way - it will not be long now, you will soon be freed from this virus. : ) C.
Tig said
Dec 21, 2018
Hi Brownie,
I’m glad you’re getting everything ready to slay that Dragon!
The time you take your medication is really up to you. Many people prefer to take it before bedtime, in the rare event that you have any side effects. That amounts to the occasional headache and increased fatigue. During the first couple of weeks, you may experience some peculiar feelings and they are entirely normal if you do. It takes that time for your body to adjust to the new drugs. The one thing to remember is, you must take the Harvoni at the same time each day and never miss a dose. The other thing to remember is the need to hydrate properly. You should be doing everything in your power to consume one gallon of water, everyday! I can’t stress the importance of that. If you notice a headache coming on or increased fatigue, you should drink more water! It’s magic with these DAA’s.
As long as your doctor knows what types of medication you are on and approves them you’re okay. Generally, the rule is no supplements while on treatment at all. There are some restrictions with most of these new drugs and antacids, PPI’s, etc., need to be taken carefully and at specific times, either with or 4 hours after the DAA. Be absolutely certain you discuss all medications and supplements with the Gastro doc when you meet up.
Good luck! Get ready to slay that Beast
lilbrownie said
Dec 21, 2018
Canuck wrote:
lillB,
Here, here I say to your thought of we want a zero VL! That IS all that matters, and you will get it.
I am glad you filled me in so thoroughly on your hx, that answers a lot of questions, nice to know you have had so many routine and regular U/S's, VL's, bloods and check-ups repeated since 2007. Excellent that was done. Sounds like your doc has been following you and the hepc well.
Very good to own an image hx, as well as a lab hx.
So, am I understanding correctly - that your "hep" doc (the one who has arranged the Harvoni for you and will be carrying this treatment out with you), is the SAME "gastro" doc you refer to now, the same gastro who you have been seeing for hepc following since 2007 - (no "new" hep doc has been brought into this picture)?
When is your next appointment with the treating doc?
Be sure they have told you, that confirmed by tests, that you DO have sufficient immunity levels to hep a/b. I'll assume you have already had any recommended flu immunizations? C.
Canuck, my Gastro, and my primary care doctor have been coordinating care for years. Actually, the very first gastro who I saw when I was first diagnosed has since retired from practice, the one I am working with now on my treatment plan is one I have only gone to since 2014. I chose him because he has in the past participated in clinical trials for the current DAAs. He knows A LOT about them. I guess he is kind of new, in that I don't have a 20-year history with him as I did with my Gastroenterologist that retired. My primary care doc, I have been going to for 30 years. He basically begged me not to treat with interferon years back. He promised new meds will come down the tubes later, and they did thank God.
My primary care doc is mainly the one who has been ordering my yearly viral load and liver enzyme tests. They use the same lab. I am able to keep track of my test results via my portal account, all my early tests were integrated into them. I love how nowadays, medical records are so transparent. In the old days, I had to really work to access and own my medical files.
My next appointment with my Gastroenterologist (who is in charge of treatment), will be when he receives the medication. He said he prefers to dispense himself instead of having them sent to patients. That is fine by me, saves me worrying about it getting lost. He has a special department that handles medication education, so they will go over information about the Harvoni, and answer any questions I have. The nurse in charge even gave me her cell phone number in case I have any questions along the way. So far everyone has been very supportive. This all helps since I am such a worrier.
He plans to do blood work in between both prescriptions (since I am on eight weeks)
Lastly, on the Hep A and B, was tested on both, with this current batch of tests and back a few years ago had hep A and B immunizations. Not sure, when and not sure if I need a booster ...should I put that on my list of questions to ask when I go pick up the Harvoni? I have had a flu shot this year, yes.
Here are a few of the questions I plan to ask when I pick up the magic pills:
What is the best time to take Harvoni? Will it keep me awake if I take it at night?
Any foods I should avoid?
Can I take magnesium and b12 with it? I actually listed ALL supplements on my records chart ( there were a LOT lol), but the only ones I am hesitant to stop taking are magnesium taurate and magnesium L-threonate ; for PVCS and PACs I have had all my life, and B12 because I eat very very little meat.
I did find this on the Mayo Clinic website: "US Brand Name. Harvoni ... If you are taking an antacid containing aluminum or magnesium hydroxide, take it 4 hours before or after taking" it makes sense, magnesium dampens acid in the stomach, and it could affect the absorption. To be safe, I will ask the specialty pharmacist, and the doctor, when I see him to dispense. I really really dont want to be without my magnesium. It is one supplement that truly has made a difference in my life, along with my B12.
I have been taking medicinal mushrooms (Turkey Tail specifically) for the immune boost but plan to stop that during treatment.
They told me already my beta blocker and Xanax would be fine during treatment. I only use the Xanax for full on panic, and have been on the same low dose for years.
So, now I wait, and enjoy the holidays. I called OptumRX, who handles our pharmacy stuff, they said they received everything they needed, and it is"pending". The people from Blue Cross have approved. Now I need more approval it seems heh.
Wishing everyone here a peaceful and hopeful holiday season!
-- Edited by lilbrownie on Friday 21st of December 2018 06:01:53 PM
Canuck said
Dec 19, 2018
lillB,
Here, here I say to your thought of we want a zero VL! That IS all that matters, and you will get it.
I am glad you filled me in so thoroughly on your hx, that answers a lot of questions, nice to know you have had so many routine and regular U/S's, VL's, bloods and check-ups repeated since 2007. Excellent that was done. Sounds like your doc has been following you and the hepc well.
Very good to own an image hx, as well as a lab hx.
So, am I understanding correctly - that your "hep" doc (the one who has arranged the Harvoni for you and will be carrying this treatment out with you), is the SAME "gastro" doc you refer to now, the same gastro who you have been seeing for hepc following since 2007 - (no "new" hep doc has been brought into this picture)?
When is your next appointment with the treating doc?
Be sure they have told you, that confirmed by tests, that you DO have sufficient immunity levels to hep a/b. I'll assume you have already had any recommended flu immunizations? C.
Tig said
Dec 18, 2018
Generally a followup ultrasound for diagnosed Hep C, is based on your Metavir score. Anyone with a F score of F4 is asked to have one done every 6-12 months, forever. That’s when Cirrhosis has occurred and the incidence of liver cancer rises. Compensated and decompensated cirrhotics follow individualized treatment plans as well. As an F2, no such annual requirement exists. It’s up to you and your liver specialist. If cost is no factor, then why not! It sure doesn’t hurt to know how things are doing.
lilbrownie said
Dec 18, 2018
Hah, I edited my subject line a bit, took out the "terrified " part . Thanks to my doctor and you all, I am not terrified anymore.
Canuck, good questions.
For the first five years I was diagnosed, I was asked to do both a yearly ultrasound (I thought that was a bit much, but I did it) and viral loads. Starting in 2007, to 2015, I had VL done once a year, along with liver enzyme tests and the aforementioned ultrasounds. About three years ago, my gastro decided that since I was not considering treatment at the time, and I had switched to a High deductible insurance policy, he would not suggest I have them done every year. The last time I asked how often I need an ultrasound now...he told me we would discuss it when I came in for my yearly blood work . Since that visit, I have gotten a much better insurance policy through my husband's employer, so that may have influenced my decision to ask for one every year.
In answer to your question, my viral loads stayed around 9mil for about 8 years. My last was three years ago. I can only guess why it went down, I have my very unprofessional theories, but the number I really want to see...is none. or Undetectable and I am praying I get that one day .
5-1-18 said
Dec 17, 2018
good to hear you are able to do the 8 weeks.
Canuck said
Dec 17, 2018
Good job on the signature line, getting all your lab info, verifying your 8 week Harvoni script.
Viral loads can fluctuate, and, quite a bit, or, they may not (like in your case where you thought you were always at around 9 million). Mind you, i do not know how many times you had your VL done since 2007? - there may have been plenty of time and room for your VL to fluctuate and you not knowing it was doing so. It is the nature of the hepc beast and the internal war we wage when we are carry hepc, that our defences keep trying to fight the virus and we can win a bit, but chronically infected is chronically infected, and the virus will succeed in surviving and replicating it's numbers despite any corrections our bodies attempt to make to address this viral hitchhiker, thus why we can see VL fluctuations
When I was first diagnosed and new to hepc, I did not know VL's "could" fluctuate, and "could" do so quite widely.
If your VL is under 6 million, your insurance may make the decision to give you only 8 weeks of harvoni. Over 6 million you would have got 12 weeks. Your VL at 3.7 million right now is probably what the insurance will go by.
If you have not had a fibroscan and an abdominal ultrasound, ask if you could have these done. Double check that your hep a/b immunity levels have been determined, and are at a sufficient level, find out if you need to have your Hep a/b immunizations started or repeated. Also ask if you need flu or pneumococcal immunization.
An abd. U/S's and fibroscans offer very good additional info, especially with long standing HCV, and with recent bloods showing F2.
So, how are you feeling about it all, you sound NOT terrified now, I certainly hope so anyway! Help is on the way - Harvoni to the rescue. You are doing the right thing! You are going to be OK. : ) C
lilbrownie said
Dec 17, 2018
Edit: I took Canuck's to advise and contacted the pharmacy. I have been prescribed 28 pills with one refill. ..I guess that equals out to be about 8 weeks? Yay I think? Below is my original post. Thanks to everyone for suggestions and support, still a bit nervous, but nothing like I was before I came here.
_______________
I was rather confused about my latest viral load. It has always since I was diagnosed, hovered around 9 million
If I am reading the numbers right (in my signature) the latest one is a bit over 3 mil? Odd. Hopefully, that means I get to do the eight weeks.
Alt and Ast levels are higher than they have ever been, maybe due to the fact I started both a beta blocker and Xanax for panic attacks. Those can't be easy on the liver.
When I took the tests, the lab tech was wondering why my doctor didn't want to wait until I fasted. I guess the Fibrometer test is more accurate after fasting. I asked him about it, and he said it was just a test the insurance company required, and that my last biopsy showed F0, and that was 4 years ago. He said the test did not influence his decision to test; it was just a formality. I posted the most pertinent parts of the tests and did not include the CBC , just a lot of numbers that were basically normal. 16 vials of blood geesh , but hey, if it got the insurance company to approve, so be it!
-- Edited by lilbrownie on Monday 17th of December 2018 02:56:31 PM
lilbrownie said
Dec 17, 2018
I was rather confused about my latest viral load. It has always since I was diagnosed, hovered around 9 million
If I am reading the numbers right (in my signature) the latest one is a bit over 3 mil? Odd. Hopefully, that means I get to do the eight weeks.
Alt and Ast levels are higher than they have ever been, maybe due to the fact I started both a beta blocker and Xanax for panic attacks. Those can't be easy on the liver.
When I took the tests, the lab tech was wondering why my doctor didn't want to wait until I fasted. I guess the Fibrometer test is more accurate after fasting. I asked him about it, and he said it was just a test the insurance company required, and that my last biopsy showed F0, and that was 4 years ago. He said the test did not influence his decision to test; it was just a formality. I posted the most pertinent parts of the tests and did not include the CBC , just a lot of numbers that were basically normal. 16 vials of blood geesh , but hey, if it got the insurance company to approve, so be it!
Canuck said
Dec 15, 2018
lil B,
Glad the prep is going seamlessly and FAST!, and that you will soon be able to start.
I bet it feels some nerve racking but ALSO reassuring, and sort of exciting, that you now have everything set up and ready to go, that you have taken the steps and finally have the right help to get rid of this virus forever which has had a long enough ride hitch hiking on your back and harming you!
Do confirm whether you got 8 or 12 weeks of Harvoni. As Tig mentioned, if your VL count is below 6 million they might have chosen 8 weeks for you. Just clarify these things so you know what length you are on, and can plan accordingly, anticipate timing dates for things.
When you first arrived you shared some of your medical data (that you knew of), and since added some, all those details could be included in a signature line for ease of reference - it makes it so much easier for discussion purposes (instead of scrolling within a thread to pick out bits of info here and there). If and when you can do up a signature line that would be good.
I wanted to get back to my first post to you (on the first day you arrived), where I was asking (other than that biopsy you had in 2013) if you had had a recent fibroscan or an abdominal ultrasound, and suggested (that if not), to inquire about getting those done. They are good to have under your belt, easy to do and easy to repeat in future - good info to have pre-treatment and then useful as ongoing feedback in the future after your cure. I also assumed they had already assessed fully your hep A/B immunity levels, and sussed whether you need any immunizations like those (or for flu). Double check on these things, that they have finished looking at these assessments, before you start your Harv.
Good that things are moving along - you will soon be cured, and you will feel good to have achieved this important accomplishment.
I am glad you found the visit with the hep doc informative and helpful, I hope you feel a bit stronger and more confident about things now, with him your other docs and all of us at your side, all supporting you to help get you to this wellness. You mentioned feeling nervous excitement versus anxiety per say, most of us can well relate to that - for me, i was SO relieved when i found out I was about to get my treatment (just knowing it was going to happen was such a comfort), but ya, we hear ya about the nervous - but you are going to do great, you'll see! C.
Cheddy said
Dec 15, 2018
Gosh. That was fast. Looks like you're up and running. Congratulations!
Tig said
Dec 14, 2018
Hello,
If they use the 9 Million viral load as current, you require 12 weeks of Harvoni. Below 6 Million and meeting all qualifications, they can give you 8. Given the choice and with the low side effects profile these DAA’s present, I’d do 12 weeks, every time.
See you over in the On Treatment section! Things are going to turn out great. Keep those updates coming!
5-1-18 said
Dec 14, 2018
bf yay annie!
lilbrownie said
Dec 14, 2018
I didn't think I would be back so soon....but guess what! I got a call by the specialist drug store (didn't know there WAS such a thing..) That they got the prescription from my doctor, that I had been approved for Harvoni by the insurance company. I forgot to ask if I am doing the eight weeks like he had thought I could, or if I am going to do twelve. I was told he wants all the meds sent to him, so he can do blood work at those intervals. Fine by me.
I am going to be moving my updates to the Harvoni "In treatment " thread... I was told I may even get to start next week... I think I am in a bit of shock right now
I will add my lab results to my signature as soon as they are all posted in my doctors portal.
Guess I'll be around a while ;)
Shemp said
Dec 14, 2018
Hey Lilbrownie,don't sweat the small stuff.Insurance companies know it's cheaper to treat someone now vs serious liver disease later.They're just being ins.companies.There won't be a problem.I know what you mean about nervous excitement,I felt the same way.Think of it as a quest with a life changing prize at the end.We're all rooting for you,kill that dragon!
5-1-18 said
Dec 14, 2018
lilbrownie the dragon slayer
LamontCranston said
Dec 13, 2018
In a couple of years you'll be saying to yourself, "that treatment was chicken-feed compared to losing my life to liver failure",... well maybe you will.
Some of us, depending on the severity of our liver disease and the treatment (cure!) we were prescribed have had some side-effects and surprises. I had a sudden outbreak of ocular (eye) herpes that looked like it might leave me blind, but eventually cleared up, and left me with very little loss of sight.
So it's true, anything can happen, but most of the really bad stuff is guaranteed to happen if you continue to suffer with HepC. My experience with Epclusa was a very easy one. The hardest part was remembering to Drink A Lot of Water. But people here in this Discussion Group reminded me a lot so I never forgot.
Can't wait to hear you are SVR!
Cheddy said
Dec 13, 2018
Good news, indeed. What a relief it must be for you to get this going. Can't wait to hear your test results - and to hear your progress.
I've never heard of taking SSRIs "just in case" but it's good to know they are available if you decide you would benefit. I don't see them as creating stress on your body but you can sort that out with your gastro.
Thanks for the wonderful news. We get pretty excited around here each time someone hits Delete on HCV.
Happy for you,
Cheddy
Iris Dragonfly said
Dec 13, 2018
How exciting!!! Here's to the insurance co expediting your request. Mine hemmed and hawed for years. I think you'll do fine without an antidepressant in the mix. Look for some of those you tube videos on meditation, and remember to breath, a few long slow deep breaths helps me tremendously.
We'll see ya soon!, bb, Iris
Tig said
Dec 13, 2018
Hi Anne,
That‘s a wonderful update, thanks for sharing! It is a big relief once you get all the questions answered and better yet when they are explained, so you can understand them. This whole process tends to get confusing and that has brought undue stress on an already difficult time. So I understand the relief you’re feeling and that will help immeasurably as you start treatment.
If you have a minute to add your lab results and genotype in your signature line, along with future updates, like treatment drugs and start date, it will keep your particulars front and center. Helps us when replying, too. You can do that from your profile page.
Stay in touch and let us know when you get the green light from insurance. Get ready to slay your Dragon! It doesn’t stand a chance...
lilbrownie said
Dec 13, 2018
Back with an update, finally got in with my gastro, and feel much more reassured after my visit. I had tons of questions, he answered all of them and more, it's amazing how real information can be key to overcoming fear.
After a crazy amount of blood tests , the insurance company came back with requests for even more tests. I was told the whole approval process could take up to three weeks, which I totally get, since it is so expensive.
The reality is finally setting in that I may actually have a life without HepC after all these years, and the anxiety is being replaced by a kind of nervous excitement.
I have decided against going on an SSRI prior to treatment. Someone here had a good point, in that my body will already be stressed by the treatment meds, and adding an antidepressant to the mix may complicate things.
I am curious to see my test results, last one I had, I was at a VL of 9 million, with 90 ALT and 69 AST, with a 1A genotype. I was told I didn't need another biopsy ,as my last on in 2013 was F0. Apparently liver damage comes slowly, especially if one takes care of themselves, which I have.
Now , I wait, no big deal , been waiting for many years.
lilbrownie said
Dec 5, 2018
Thank you all SO much for your kind and helpful words. It comforts me more than you know !
Oh and Tig, your photo made me smile, I WILL remember the water I promise!
I'll keep you all posted, and again, thank you all !!
5-1-18 said
Dec 3, 2018
yep, try to think about the water as being part of the treatment
Tig said
Dec 3, 2018
Listen to these wise folks! Here’s your pictorial guide
We are not kidding about the water. Fill a gallon jug and make sure you drink a full gallon of water a day when you are taking your Hep C medication. We all have learned from experience that the gallon of water a day is key to minimizing side effects. This is one area where our advice may differ from that of your treating physician.
Shemp said
Dec 3, 2018
Welcome lilbrownie,You couldn't have found a better place.I waited 18 years for the new DAA's but still had a lot of anxiety about treatment.I still work so I didn't know how TX would effect my job.What if I can't work?What about side effects?What if,what if,what if.I was making myself nuts.My Doc prescribed lorazapam.It really didn't do much for me.The thing that really carries me through are the good people on this forum.The good folks here have celebrated my highs and carried me through my lows.You have found a brotherhood(or sisterhood) if you will.I started Mavyret 11 1/2 weeks ago,3 days to go Yeaaaaa.Take it 1 day at a time.You can do this.After you start treatment and you get your first bloodwork back and you see that word UNDETECTED! It's a feeling you can't put into words.And, in case you havn't heard.DRINK LOTS AND LOTS OF WATER. All Aboard.
Hoodietree said
Dec 3, 2018
Hey Lil! Glad youre here. Drink a full gallon of water each day, get as much sleep as you need even if its 12 hours a day, and try to meditate if you can. Let us know any and all questions you may have. Please dont hesirate to bring us your questions and concerns.
polosilver said
Dec 2, 2018
Welcome lilbrownie!! You found the right place as you have most likely read and realized already. We are a great support group here, plus many folks that are knowledgeable on HepC and related illnesses. You will hear a lot about drinking plenty of water on a daily basis once you start your treatment. We are here to help --
ps
Iris Dragonfly said
Dec 2, 2018
Greetings Lil!
I understand having fear about the unknown, that is enough to really get one going down the scary road in our minds..I do it too. Hoodie and I try to meditate whenever possible, We've found that it really is a stress reliever. (check out you tube there are tons to choose from, start short though 2 to 5 minutes) One of the things that used to make me panic all the time was living in the next moment instead of this one right now. When I could break from that I started to feel better, so one of my favorite is active listening...just sitting and listening to the sounds around me, without putting too much analysis in what is making the sound, another one is Body scan)
Personally I wouldn't add another drug to the cocktail if you are getting treatment. But your hepatologist should know if it is safe to add. I wish you the very best on your healing journey, You got this!
BB, Iris
SeeTheLight said
Dec 2, 2018
Hi lilbrownie, Welcome to the forum and your new HepC free life ahead. You will find plenty of people to help you in your journey around here. Follow your instincts and try not to stress!
Cheddy said
Dec 2, 2018
Yeah, that's right, Canuck!!
5-1-18 said
Dec 2, 2018
hi lilbrownie, welcome to the new day of daa's
i too used to enjoy the drugs and now fear them , seems a bit odd but that's how it is.
i'm so happy you found us here and are ready to get rid of the hepC.
we are all here for you
5
Canuck said
Dec 2, 2018
Hi lilbrownie,
Welcome here.
Good for you to get things underway. You can make it right now. Your long awaited treatment. You will not be sorry you decided to dump this virus.
Work ahead, but it won't be bad - you WILL get through this, and be so much better for it.
Always listen to your instincts - you said .... "I am more anxious about being on an SSRI than any hepC meds ", heed this, do not get feeling "stuck"in a rx war between your docs, just remember YOU are also party to the decision, YOU DO have the deciding say-so about whether it is wise/best or necessary to take SSRI's now, in future, or ever.
Just see how things play out as far as the "consensus" about you starting a new drug at the same time that you would be getting rid of your HCV, decide how you feel about doing so, and go from there. And keep in mind, any decision can be changed in future should you all decide to do so.
I have found, that just the fact of oneself taking control of a situ, such as making the decision to go ahead and get rid of this HCV, the taking of this strong position and stance in making this decision, helps greatly in carrying us through to the end with strength and conviction, even when we have fears and doubts, the good gleaned will far outweigh any bad we are afraid of. You will find no shortage of folk around here who will remind you that what you have decided to do is correct and good. There is only one direction to go, forward, the direction you are already going in!
Be happy in your decision, be hopeful and brave - it will turn out good! You'll see.
If you have not had a fibroscan done, or, a recent abdominal ultrasound done, ask about getting those done as well (aside from getting the blood work you mentioned), also make sure they have tested and assessed your immunity levels for HepA/B and whether you might need an influenza shot and other immunization.
Do you know what GT you are, or what drug treatment choiced the doc has been thinking about for you (you mentioned Mav or harvoni)?
A signature line will be helpful once you can do one up.
Welcome again. Glad you found us and this place. It is a good place to find and come to! C.
lamassu said
Dec 2, 2018
Hi lilbrownie,
A big welcome to the forum! You are in the right place. Before I was treated earlier this year my Hep C was progressing more rapidly and I was having a terrible problem with anxiety which my psychiatrist handled. I had to take Xanax for panic attacks and the problem was severe to the point I was put on Valium daily. Since the Hep C was the major stressor in my life once I took Epclusa for three months and was cured I have been able to wean off the tranquilizers.
I almost never have a panic attack anymore but do have Xanax prescribed if I do. I had to wait until I was covered by Medicare to afford treatment or I would have gotten Epclusa a year ago. I do have a problem with depression and anxiety so have been taking Remeron for years. Not familiar with Lexapro but I agree the fewer drugs the better if you can get by with an occasional Xanax.
You are starting treatment at the best possible time because the new direct acting antivirals have a very high success rate. We need to know which one of the six genotypes of HCV you have and other test results like liver enzymes and viral load to let you have a second opinion (from the perspective of patients who have been cured) on what the best options for you are. The fact that you were F0 five years ago is good news, do you know if your treating physician is going to order a FibroScan to non-invasively check your F score or is ordering a FibroSure blood test?
I can tell you my gastroenterologist mainly prescribes Mavyret and Epclusa now rather than Harvoni. Great to have you here and waiting for you to be able to provide those test results.
Cheddy said
Dec 2, 2018
Welcome lilbrownie. Yes, this place has been of great help too many. It's hard for anybody who hasn't been through this to understand all of the personal nuances and variations.
I bet you will cut your anxiety way down when you get rid of this beastly virus. It's been nagging you for a long time. Do your doctors consult with one another? It seems that if Xanax has things under control that you may not need the Lexapro. Why not wait to see if it is needed before doling it out? I don't even play a doctor on TV but personally, I alway go with the least treatment necessary. There will probably be others here who can shed more light, and more research, on the matter.
The main thing is that you have decided to start treatment!!!!! Good on you. Let's get your doctors talking with one another. The gastro will probably have the final word.
Please fill out a signature line and give us more information to support any hep we may give.
Tig said
Dec 2, 2018
Hello Anne,
Welcome to the forum and your new group of friends! You’re very welcome here and after you get to talk with these good people, your anxiety will hopefully begin to melt away. We all know where your head is right now and I my best advice is to just take a deep breath and do your best to relax.... You’ve made a great decision and treatment now is a piece of cake. It’s short and extremely effective. Add to that the low side effects and you’ll be virus free in no time. I’m sure of it!
The anxiety is real and if it’s the thought of treatment causing it, let it go. Let your mind find that happy place. We will do our best to help you secure the confidence you need to sail through this, without fear of failure or judgement. You see, we know you’re going to be successful.
Get onboard the treatment train, first class accommodation awaits you! You’re going to do great. When you have the information on your tests, share them in your signature line. Knowing your genotype, viral load and liver function tests, help us when replying. You can see how we set ours up. There’s a link to instructions in mine if you need help. I’m glad you’re here. If you need anything, just holler!
lilbrownie said
Dec 2, 2018
Hi everyone, I'm so glad I found this site.
I was diagnosed in 2007, in 2013 I had a biopsy that showed F0 damage, only slight inflammation. Since I suffer from Panic Disorder and a drug phobia, I decided to forgo treatment, which at that time was Interferon and ribo.
It is ironic that I used to misuse drugs, and now I have a phobia I have come to the conclusion that living with HepC is actually adding to my anxiety and panic, as it is ALWAYS in the back of my mind. I just want it gone. I see commercials on the television, and finally realize I don't have to do Interferon, and why not give this a try.
My therapist wants me to go on Lexapro prior to treatment, for my anxiety, but my primary care physician adamantly disagrees. He notes that my panic is well under control with Xanax, and does not want me to have even more drugs to be anxious of, on top of whatever treatment option my Gastro discides on. (I assume Mavret or Harvoni). It is kind of disconcerting to be in the middle of their disagreement, although he is right. I am more anxious about being on an SSRI than any hepC meds.
At any rate, I go in for bloodwork next week, my insurance company has approved it. I will be on this site regularly for the foreseeable future, so.................Hello!
LillB,
Yes, there are good reasons(s) they (we) ALL want to know where our immunity levels are when it come to B and A, and to know it BEFORE we start our C therapy and it is not just to satisfy weird insurance people requirements. Knowing your A and B status, and knowing your degrees of immunity to A & B is important, not knowing your A & B immunity status and starting C therapy can hold potential for negative consequences.
What a rig-a-ma-role getting your 8 weeks of Harvoni!
I know you already said they have agreed to a 4 week blood draw for you (LFT's and a VL), make sure you get that on time, also ask for the same labs for EOT (an 8 week LFT and VL) - I would want my EOT VL drawnresults back and known.
That first pill down the hatch you are going to feel in better control fer sure. Starting therapy is a strengthening act. You'll likely gain some feelings of security as soon as you start, just knowing you are taking one of the worlds best designed drugs in the world, and knowing you are trouncing this virus forever, with each pill! You are about to be amazingly successful!
C.
Hey lil, I dont know why I didnt greet you yet, but I definitely want to say its nice to meet you. I hope your pills show up soon so you can get on your train and kick some dragon butt.
Remember your water and be consistent with your pill time...
Hey Lil,
Hang in there and stay in their face until you get your goods. There can be so many snags along this journey, but we just deal with them one at a time to get to the finish line. Believe me, it's worth it. If you're feeling out of control, just think how much of it you will regain by ostracizing this virus.
Don't forget your water (we just keep saying it).
Best of luck and good health,
Cheddy
good luck getting your pills soon lil'
5
I hope everyone here had a wonderful holiday season.
I haven't posted in a while , mainly because I have been waiting. And waiting some more. In the meantime, I have been trying to take my mind off this completely. It got to be super annoying, especially since I have control issues
So here is the update. Blue Cross approves my Harvoni (eight weeks )
My Doctors office prefers a certain specialty pharmacy called Meijer. Meijer submits to OptumRX, the company who handles all the prescription end of our health plan.
OptumRX refuses to use Meijer, (who did all the legwork, submitted all paperwork, and kept in contact with me throughout the entire process) Meijer calls me and Doctors office to inform us that OptumRX uses ONLY Briova Specialty Pharmacy (OptumRX coincidentally OWNS Briova
)
Briova takes over, everything gets confused and delayed. Briova Pharmacist says Blue Cross requires HIV test. Blue Cross says , "No , we don't, there is already an approved preauthorization, which is backed up and verified by OptumRX. Briova finally realizes all the necessary tests are done, pre-auth done, so FINALLY I get the green light, Briova applies my Harvoni COPAY coupon, (which the Briova customer service agent told me about, I didn't know!)
I went in today to pick up my pills at the Doctors office; and lo and behold, they are not there yet! So they call Briova, and were told they haven't shipped yet.
I called Briova again today, and they say it is in the pipeline to be shipped it MAY be at Doctors office tomorrow. I'll believe it when I see it heh.
In Briova's defense, they had this dumped in their lap WAY after the fact. If my doctor's office had simply called OPTUMRX first, they would have known that they ONLY use Briova for Harvoni. If anyone reads this that may be considering treatment, make sure you find out which specialty pharmacy your insurance plan is tied to. It may save time and frustration.
Big picture, and in all honesty, I am not complaining too much about all this. It is an expensive treatment. Many people have no access to it all ALL. I am grateful that I am even able to procure what should be available to everyone who has Hep C.
My train is delayed, but hell I waited this long to get treated, what's a few more days :)
PS: in answer to Canuck's question about immunity to HepB and A, I did ask, thanks to you! I was told I was immune, that was one of the tests required by Blue Cross to approve.
Thanks, everyone for support, and excellent advice!
-- Edited by lilbrownie on Monday 7th of January 2019 03:03:15 PM
LillB,
Tig said it all - especially about drinking lots of water (spread out over your waking hours). Just choose a time of day that is easiest for you to remember to take your harvoni, make it convenient to your normal daily schedule - although you are allowed to take harvoni on an empty stomache i would opt to take it with a meal (just what i would opt to do based on a few bits of data I have read about drug absorption/and or gastric tolerance). The monograph will state that you can take it with OR without food.
You can go here and read the same paper monograph insert that will come with your harvoni package. On page 27/28, about being able to take harvoni with or without food, interaction info, and much more in it's many pages. http://www.gilead.ca/application/files/6715/2589/0388/Harvoni_English_PM_e170097-GS-009.pdf
If it was me, I would stop the turkey tail now (perhaps wean it to nothing as soon as you can - I have no idea about what is advised as far as turkey tail cessation) as your DAA treatment is imminent. Stopping turkey tail sooner than later is only based on my uneducated opinion that there is likely less info available out there about turkey tail and possible things like accumulative effects than there is on some other supplements people might more routinely take. You and Tig already have it right though, discuss everything very thoroughly with your doc/nurse/treatment advisors about magnesium use (and any of your sups/meds period) when on HCV treatment.
Adopting a "general" rule of no sups period if possible while on HCV treatment IS easier, as far a sorting which ones might have some sort of unwanted effect. We are interested in seeing the reaction of your viral infection in response to the DAA and not to the influence of anything else
About hep a/b - just ask them if they did test your existing levels of immunity - it should be that they have already confirmed you own a sufficient hepb immunity level prior to starting hepc treatment.
As it appears you have increased from your prior F0 (I think you said in 2013 by biopsy) to your current F2 (by blood test method), it certainly would not hurt to have ongoing future Fscore assessments done by blood methods, but also determined by easy fibroscans (if these would be easy for you to access/procure). All of these things (fibroscans and ongoing comparative U/S's in future) are just very good following and info to see what and how your liver is doing and how it behaves/resolves after cure. In my perfect world i would have wanted a current U/S and a fibroscan before my treatment and for them to be repeated post-treatment, to see how things were just before and then to be able to see how things go after.
Thanks for filling us in on your hx so well.
Good that you already know that during your 8 week treatment you will be getting a week 4 VL done, ask if you could please also have an EOT one done - I would strive to have the EOT one drawn at least a few days shy of the EOT. Once you are planning your start date - mark your calendar so you know when exactly (what day) your 4 week VL draw falls on, and what the "open working lab" days are just prior to your EOT - so you can plan/arrange lab draws accordingly. When you are on a short treatment time - you have less room for being late with lab feedback, better to know your 4 week results and your EOT results a few days early than a few days late!
Rest easy, your harvoni help is on the way - it will not be long now, you will soon be freed from this virus. : ) C.
Hi Brownie,
I’m glad you’re getting everything ready to slay that Dragon!
The time you take your medication is really up to you. Many people prefer to take it before bedtime, in the rare event that you have any side effects. That amounts to the occasional headache and increased fatigue. During the first couple of weeks, you may experience some peculiar feelings and they are entirely normal if you do. It takes that time for your body to adjust to the new drugs. The one thing to remember is, you must take the Harvoni at the same time each day and never miss a dose. The other thing to remember is the need to hydrate properly. You should be doing everything in your power to consume one gallon of water, everyday! I can’t stress the importance of that. If you notice a headache coming on or increased fatigue, you should drink more water! It’s magic with these DAA’s.
As long as your doctor knows what types of medication you are on and approves them you’re okay. Generally, the rule is no supplements while on treatment at all. There are some restrictions with most of these new drugs and antacids, PPI’s, etc., need to be taken carefully and at specific times, either with or 4 hours after the DAA. Be absolutely certain you discuss all medications and supplements with the Gastro doc when you meet up.
Good luck! Get ready to slay that Beast
Canuck, my Gastro, and my primary care doctor have been coordinating care for years. Actually, the very first gastro who I saw when I was first diagnosed has since retired from practice, the one I am working with now on my treatment plan is one I have only gone to since 2014. I chose him because he has in the past participated in clinical trials for the current DAAs. He knows A LOT about them. I guess he is kind of new, in that I don't have a 20-year history with him as I did with my Gastroenterologist that retired. My primary care doc, I have been going to for 30 years. He basically begged me not to treat with interferon years back. He promised new meds will come down the tubes later, and they did thank God.
My primary care doc is mainly the one who has been ordering my yearly viral load and liver enzyme tests. They use the same lab. I am able to keep track of my test results via my portal account, all my early tests were integrated into them. I love how nowadays, medical records are so transparent. In the old days, I had to really work to access and own my medical files.
My next appointment with my Gastroenterologist (who is in charge of treatment), will be when he receives the medication. He said he prefers to dispense himself instead of having them sent to patients. That is fine by me, saves me worrying about it getting lost. He has a special department that handles medication education, so they will go over information about the Harvoni, and answer any questions I have. The nurse in charge even gave me her cell phone number in case I have any questions along the way. So far everyone has been very supportive. This all helps since I am such a worrier.
He plans to do blood work in between both prescriptions (since I am on eight weeks)
Lastly, on the Hep A and B, was tested on both, with this current batch of tests and back a few years ago had hep A and B immunizations. Not sure, when and not sure if I need a booster ...should I put that on my list of questions to ask when I go pick up the Harvoni? I have had a flu shot this year, yes.
Here are a few of the questions I plan to ask when I pick up the magic pills:
What is the best time to take Harvoni? Will it keep me awake if I take it at night?
Any foods I should avoid?
Can I take magnesium and b12 with it? I actually listed ALL supplements on my records chart ( there were a LOT lol), but the only ones I am hesitant to stop taking are magnesium taurate and magnesium L-threonate ; for PVCS and PACs I have had all my life, and B12 because I eat very very little meat.
I did find this on the Mayo Clinic website: "US Brand Name. Harvoni ... If you are taking an antacid containing aluminum or magnesium hydroxide, take it 4 hours before or after taking" it makes sense, magnesium dampens acid in the stomach, and it could affect the absorption. To be safe, I will ask the specialty pharmacist, and the doctor, when I see him to dispense. I really really dont want to be without my magnesium. It is one supplement that truly has made a difference in my life, along with my B12.
I have been taking medicinal mushrooms (Turkey Tail specifically) for the immune boost but plan to stop that during treatment.
They told me already my beta blocker and Xanax would be fine during treatment. I only use the Xanax for full on panic, and have been on the same low dose for years.
So, now I wait, and enjoy the holidays. I called OptumRX, who handles our pharmacy stuff, they said they received everything they needed, and it is"pending". The people from Blue Cross have approved. Now I need more approval it seems heh.
Wishing everyone here a peaceful and hopeful holiday season!
-- Edited by lilbrownie on Friday 21st of December 2018 06:01:53 PM
lillB,
Here, here I say to your thought of we want a zero VL! That IS all that matters, and you will get it.
I am glad you filled me in so thoroughly on your hx, that answers a lot of questions, nice to know you have had so many routine and regular U/S's, VL's, bloods and check-ups repeated since 2007. Excellent that was done. Sounds like your doc has been following you and the hepc well.
Very good to own an image hx, as well as a lab hx.
So, am I understanding correctly - that your "hep" doc (the one who has arranged the Harvoni for you and will be carrying this treatment out with you), is the SAME "gastro" doc you refer to now, the same gastro who you have been seeing for hepc following since 2007 - (no "new" hep doc has been brought into this picture)?
When is your next appointment with the treating doc?
Be sure they have told you, that confirmed by tests, that you DO have sufficient immunity levels to hep a/b. I'll assume you have already had any recommended flu immunizations? C.
Generally a followup ultrasound for diagnosed Hep C, is based on your Metavir score. Anyone with a F score of F4 is asked to have one done every 6-12 months, forever. That’s when Cirrhosis has occurred and the incidence of liver cancer rises. Compensated and decompensated cirrhotics follow individualized treatment plans as well. As an F2, no such annual requirement exists. It’s up to you and your liver specialist. If cost is no factor, then why not! It sure doesn’t hurt to know how things are doing.
Hah, I edited my subject line a bit, took out the "terrified " part . Thanks to my doctor and you all, I am not terrified anymore.
Canuck, good questions.
For the first five years I was diagnosed, I was asked to do both a yearly ultrasound (I thought that was a bit much, but I did it) and viral loads. Starting in 2007, to 2015, I had VL done once a year, along with liver enzyme tests and the aforementioned ultrasounds. About three years ago, my gastro decided that since I was not considering treatment at the time, and I had switched to a High deductible insurance policy, he would not suggest I have them done every year. The last time I asked how often I need an ultrasound now...he told me we would discuss it when I came in for my yearly blood work . Since that visit, I have gotten a much better insurance policy through my husband's employer, so that may have influenced my decision to ask for one every year.
In answer to your question, my viral loads stayed around 9mil for about 8 years. My last was three years ago. I can only guess why it went down, I have my very unprofessional theories, but the number I really want to see...is none. or Undetectable and I am praying I get that one day .
good to hear you are able to do the 8 weeks.
Good job on the signature line, getting all your lab info, verifying your 8 week Harvoni script.
Viral loads can fluctuate, and, quite a bit, or, they may not (like in your case where you thought you were always at around 9 million). Mind you, i do not know how many times you had your VL done since 2007? - there may have been plenty of time and room for your VL to fluctuate and you not knowing it was doing so. It is the nature of the hepc beast and the internal war we wage when we are carry hepc, that our defences keep trying to fight the virus and we can win a bit, but chronically infected is chronically infected, and the virus will succeed in surviving and replicating it's numbers despite any corrections our bodies attempt to make to address this viral hitchhiker, thus why we can see VL fluctuations
When I was first diagnosed and new to hepc, I did not know VL's "could" fluctuate, and "could" do so quite widely.
If your VL is under 6 million, your insurance may make the decision to give you only 8 weeks of harvoni. Over 6 million you would have got 12 weeks. Your VL at 3.7 million right now is probably what the insurance will go by.
If you have not had a fibroscan and an abdominal ultrasound, ask if you could have these done. Double check that your hep a/b immunity levels have been determined, and are at a sufficient level, find out if you need to have your Hep a/b immunizations started or repeated. Also ask if you need flu or pneumococcal immunization.
An abd. U/S's and fibroscans offer very good additional info, especially with long standing HCV, and with recent bloods showing F2.
So, how are you feeling about it all, you sound NOT terrified now, I certainly hope so anyway! Help is on the way - Harvoni to the rescue. You are doing the right thing! You are going to be OK. : ) C
Edit: I took Canuck's to advise and contacted the pharmacy. I have been prescribed 28 pills with one refill. ..I guess that equals out to be about 8 weeks? Yay I think? Below is my original post. Thanks to everyone for suggestions and support, still a bit nervous, but nothing like I was before I came here.
_______________
I was rather confused about my latest viral load. It has always since I was diagnosed, hovered around 9 million
If I am reading the numbers right (in my signature) the latest one is a bit over 3 mil? Odd. Hopefully, that means I get to do the eight weeks.
Alt and Ast levels are higher than they have ever been, maybe due to the fact I started both a beta blocker and Xanax for panic attacks. Those can't be easy on the liver.
When I took the tests, the lab tech was wondering why my doctor didn't want to wait until I fasted. I guess the Fibrometer test is more accurate after fasting. I asked him about it, and he said it was just a test the insurance company required, and that my last biopsy showed F0, and that was 4 years ago. He said the test did not influence his decision to test; it was just a formality. I posted the most pertinent parts of the tests and did not include the CBC , just a lot of numbers that were basically normal. 16 vials of blood geesh , but hey, if it got the insurance company to approve, so be it!
-- Edited by lilbrownie on Monday 17th of December 2018 02:56:31 PM
I was rather confused about my latest viral load. It has always since I was diagnosed, hovered around 9 million
If I am reading the numbers right (in my signature) the latest one is a bit over 3 mil? Odd. Hopefully, that means I get to do the eight weeks.
Alt and Ast levels are higher than they have ever been, maybe due to the fact I started both a beta blocker and Xanax for panic attacks. Those can't be easy on the liver.
When I took the tests, the lab tech was wondering why my doctor didn't want to wait until I fasted. I guess the Fibrometer test is more accurate after fasting. I asked him about it, and he said it was just a test the insurance company required, and that my last biopsy showed F0, and that was 4 years ago. He said the test did not influence his decision to test; it was just a formality. I posted the most pertinent parts of the tests and did not include the CBC , just a lot of numbers that were basically normal. 16 vials of blood geesh , but hey, if it got the insurance company to approve, so be it!
lil B,
Glad the prep is going seamlessly and FAST!, and that you will soon be able to start.
I bet it feels some nerve racking but ALSO reassuring, and sort of exciting, that you now have everything set up and ready to go, that you have taken the steps and finally have the right help to get rid of this virus forever which has had a long enough ride hitch hiking on your back and harming you!
Do confirm whether you got 8 or 12 weeks of Harvoni. As Tig mentioned, if your VL count is below 6 million they might have chosen 8 weeks for you. Just clarify these things so you know what length you are on, and can plan accordingly, anticipate timing dates for things.
When you first arrived you shared some of your medical data (that you knew of), and since added some, all those details could be included in a signature line for ease of reference - it makes it so much easier for discussion purposes (instead of scrolling within a thread to pick out bits of info here and there). If and when you can do up a signature line that would be good.
I wanted to get back to my first post to you (on the first day you arrived), where I was asking (other than that biopsy you had in 2013) if you had had a recent fibroscan or an abdominal ultrasound, and suggested (that if not), to inquire about getting those done. They are good to have under your belt, easy to do and easy to repeat in future - good info to have pre-treatment and then useful as ongoing feedback in the future after your cure. I also assumed they had already assessed fully your hep A/B immunity levels, and sussed whether you need any immunizations like those (or for flu). Double check on these things, that they have finished looking at these assessments, before you start your Harv.
Good that things are moving along - you will soon be cured, and you will feel good to have achieved this important accomplishment.
I am glad you found the visit with the hep doc informative and helpful, I hope you feel a bit stronger and more confident about things now, with him your other docs and all of us at your side, all supporting you to help get you to this wellness. You mentioned feeling nervous excitement versus anxiety per say, most of us can well relate to that - for me, i was SO relieved when i found out I was about to get my treatment (just knowing it was going to happen was such a comfort), but ya, we hear ya about the nervous - but you are going to do great, you'll see!
C.
Gosh. That was fast. Looks like you're up and running. Congratulations!
Hello,
If they use the 9 Million viral load as current, you require 12 weeks of Harvoni. Below 6 Million and meeting all qualifications, they can give you 8. Given the choice and with the low side effects profile these DAA’s present, I’d do 12 weeks, every time.
See you over in the On Treatment section! Things are going to turn out great. Keep those updates coming!
I didn't think I would be back so soon....but guess what! I got a call by the specialist drug store (didn't know there WAS such a thing..) That they got the prescription from my doctor, that I had been approved for Harvoni by the insurance company. I forgot to ask if I am doing the eight weeks like he had thought I could, or if I am going to do twelve. I was told he wants all the meds sent to him, so he can do blood work at those intervals. Fine by me.
I am going to be moving my updates to the Harvoni "In treatment " thread... I was told I may even get to start next week... I think I am in a bit of shock right now
I will add my lab results to my signature as soon as they are all posted in my doctors portal.
Guess I'll be around a while ;)
Hey Lilbrownie,don't sweat the small stuff.Insurance companies know it's cheaper to treat someone now vs serious liver disease later.They're just being ins.companies.There won't be a problem.I know what you mean about nervous excitement,I felt the same way.Think of it as a quest with a life changing prize at the end.We're all rooting for you,kill that dragon!
lilbrownie the dragon slayer
Some of us, depending on the severity of our liver disease and the treatment (cure!) we were prescribed have had some side-effects and surprises. I had a sudden outbreak of ocular (eye) herpes that looked like it might leave me blind, but eventually cleared up, and left me with very little loss of sight.
So it's true, anything can happen, but most of the really bad stuff is guaranteed to happen if you continue to suffer with HepC. My experience with Epclusa was a very easy one. The hardest part was remembering to Drink A Lot of Water. But people here in this Discussion Group reminded me a lot so I never forgot.
Can't wait to hear you are SVR!
Good news, indeed. What a relief it must be for you to get this going. Can't wait to hear your test results - and to hear your progress.
I've never heard of taking SSRIs "just in case" but it's good to know they are available if you decide you would benefit. I don't see them as creating stress on your body but you can sort that out with your gastro.
Thanks for the wonderful news. We get pretty excited around here each time someone hits Delete on HCV.
Happy for you,
Cheddy
How exciting!!! Here's to the insurance co expediting your request. Mine hemmed and hawed for years. I think you'll do fine without an antidepressant in the mix. Look for some of those you tube videos on meditation, and remember to breath, a few long slow deep breaths helps me tremendously.
We'll see ya soon!, bb, Iris
Hi Anne,
That‘s a wonderful update, thanks for sharing! It is a big relief once you get all the questions answered and better yet when they are explained, so you can understand them. This whole process tends to get confusing and that has brought undue stress on an already difficult time. So I understand the relief you’re feeling and that will help immeasurably as you start treatment.
If you have a minute to add your lab results and genotype in your signature line, along with future updates, like treatment drugs and start date, it will keep your particulars front and center. Helps us when replying, too. You can do that from your profile page.
Stay in touch and let us know when you get the green light from insurance. Get ready to slay your Dragon! It doesn’t stand a chance...
Back with an update, finally got in with my gastro, and feel much more reassured after my visit. I had tons of questions, he answered all of them and more, it's amazing how real information can be key to overcoming fear.
After a crazy amount of blood tests , the insurance company came back with requests for even more tests. I was told the whole approval process could take up to three weeks, which I totally get, since it is so expensive.
The reality is finally setting in that I may actually have a life without HepC after all these years, and the anxiety is being replaced by a kind of nervous excitement.
I have decided against going on an SSRI prior to treatment. Someone here had a good point, in that my body will already be stressed by the treatment meds, and adding an antidepressant to the mix may complicate things.
I am curious to see my test results, last one I had, I was at a VL of 9 million, with 90 ALT and 69 AST, with a 1A genotype. I was told I didn't need another biopsy ,as my last on in 2013 was F0. Apparently liver damage comes slowly, especially if one takes care of themselves, which I have.
Now , I wait, no big deal , been waiting for many years.
yep, try to think about the water as being part of the treatment
Listen to these wise folks! Here’s your pictorial guide
We are not kidding about the water. Fill a gallon jug and make sure you drink a full gallon of water a day when you are taking your Hep C medication. We all have learned from experience that the gallon of water a day is key to minimizing side effects. This is one area where our advice may differ from that of your treating physician.
Welcome lilbrownie,You couldn't have found a better place.I waited 18 years for the new DAA's but still had a lot of anxiety about treatment.I still work so I didn't know how TX would effect my job.What if I can't work?What about side effects?What if,what if,what if.I was making myself nuts.My Doc prescribed lorazapam.It really didn't do much for me.The thing that really carries me through are the good people on this forum.The good folks here have celebrated my highs and carried me through my lows.You have found a brotherhood(or sisterhood) if you will.I started Mavyret 11 1/2 weeks ago,3 days to go Yeaaaaa.Take it 1 day at a time.You can do this.After you start treatment and you get your first bloodwork back and you see that word UNDETECTED! It's a feeling you can't put into words.And, in case you havn't heard.DRINK LOTS AND LOTS OF WATER. All Aboard.
Hey Lil! Glad youre here. Drink a full gallon of water each day, get as much sleep as you need even if its 12 hours a day, and try to meditate if you can. Let us know any and all questions you may have. Please dont hesirate to bring us your questions and concerns.
Welcome lilbrownie!! You found the right place as you have most likely read and realized already. We are a great support group here, plus many folks that are knowledgeable on HepC and related illnesses. You will hear a lot about drinking plenty of water on a daily basis once you start your treatment. We are here to help --
ps
Greetings Lil!
I understand having fear about the unknown, that is enough to really get one going down the scary road in our minds..I do it too. Hoodie and I try to meditate whenever possible, We've found that it really is a stress reliever. (check out you tube there are tons to choose from, start short though 2 to 5 minutes) One of the things that used to make me panic all the time was living in the next moment instead of this one right now. When I could break from that I started to feel better, so one of my favorite is active listening...just sitting and listening to the sounds around me, without putting too much analysis in what is making the sound, another one is Body scan)
Personally I wouldn't add another drug to the cocktail if you are getting treatment. But your hepatologist should know if it is safe to add. I wish you the very best on your healing journey,
You got this!
BB, Iris
Hi lilbrownie, Welcome to the forum and your new HepC free life ahead. You will find plenty of people to help you in your journey around here. Follow your instincts and try not to stress!
Yeah, that's right, Canuck!!
hi lilbrownie, welcome to the new day of daa's
i too used to enjoy the drugs and now fear them
, seems a bit odd but that's how it is.
i'm so happy you found us here and are ready to get rid of the hepC.
we are all here for you
5
Hi lilbrownie,
Welcome here.
Good for you to get things underway. You can make it right now. Your long awaited treatment. You will not be sorry you decided to dump this virus.
Work ahead, but it won't be bad - you WILL get through this, and be so much better for it.
Always listen to your instincts - you said .... "I am more anxious about being on an SSRI than any hepC meds ", heed this, do not get feeling "stuck"in a rx war between your docs, just remember YOU are also party to the decision, YOU DO have the deciding say-so about whether it is wise/best or necessary to take SSRI's now, in future, or ever.
Just see how things play out as far as the "consensus" about you starting a new drug at the same time that you would be getting rid of your HCV, decide how you feel about doing so, and go from there. And keep in mind, any decision can be changed in future should you all decide to do so.
I have found, that just the fact of oneself taking control of a situ, such as making the decision to go ahead and get rid of this HCV, the taking of this strong position and stance in making this decision, helps greatly in carrying us through to the end with strength and conviction, even when we have fears and doubts, the good gleaned will far outweigh any bad we are afraid of. You will find no shortage of folk around here who will remind you that what you have decided to do is correct and good. There is only one direction to go, forward, the direction you are already going in!
Be happy in your decision, be hopeful and brave - it will turn out good! You'll see.
If you have not had a fibroscan done, or, a recent abdominal ultrasound done, ask about getting those done as well (aside from getting the blood work you mentioned), also make sure they have tested and assessed your immunity levels for HepA/B and whether you might need an influenza shot and other immunization.
Do you know what GT you are, or what drug treatment choiced the doc has been thinking about for you (you mentioned Mav or harvoni)?
A signature line will be helpful once you can do one up.
Welcome again. Glad you found us and this place. It is a good place to find and come to! C.
Hi lilbrownie,
A big welcome to the forum! You are in the right place. Before I was treated earlier this year my Hep C was progressing more rapidly and I was having a terrible problem with anxiety which my psychiatrist handled. I had to take Xanax for panic attacks and the problem was severe to the point I was put on Valium daily. Since the Hep C was the major stressor in my life once I took Epclusa for three months and was cured I have been able to wean off the tranquilizers.
I almost never have a panic attack anymore but do have Xanax prescribed if I do. I had to wait until I was covered by Medicare to afford treatment or I would have gotten Epclusa a year ago. I do have a problem with depression and anxiety so have been taking Remeron for years. Not familiar with Lexapro but I agree the fewer drugs the better if you can get by with an occasional Xanax.
You are starting treatment at the best possible time because the new direct acting antivirals have a very high success rate. We need to know which one of the six genotypes of HCV you have and other test results like liver enzymes and viral load to let you have a second opinion (from the perspective of patients who have been cured) on what the best options for you are. The fact that you were F0 five years ago is good news, do you know if your treating physician is going to order a FibroScan to non-invasively check your F score or is ordering a FibroSure blood test?
I can tell you my gastroenterologist mainly prescribes Mavyret and Epclusa now rather than Harvoni. Great to have you here and waiting for you to be able to provide those test results.
Welcome lilbrownie. Yes, this place has been of great help too many. It's hard for anybody who hasn't been through this to understand all of the personal nuances and variations.
I bet you will cut your anxiety way down when you get rid of this beastly virus. It's been nagging you for a long time. Do your doctors consult with one another? It seems that if Xanax has things under control that you may not need the Lexapro. Why not wait to see if it is needed before doling it out? I don't even play a doctor on TV but personally, I alway go with the least treatment necessary. There will probably be others here who can shed more light, and more research, on the matter.
The main thing is that you have decided to start treatment!!!!! Good on you. Let's get your doctors talking with one another. The gastro will probably have the final word.
Please fill out a signature line and give us more information to support any hep we may give.
Hello Anne,
Welcome to the forum and your new group of friends! You’re very welcome here and after you get to talk with these good people, your anxiety will hopefully begin to melt away. We all know where your head is right now and I my best advice is to just take a deep breath and do your best to relax.... You’ve made a great decision and treatment now is a piece of cake. It’s short and extremely effective. Add to that the low side effects and you’ll be virus free in no time. I’m sure of it!
The anxiety is real and if it’s the thought of treatment causing it, let it go. Let your mind find that happy place. We will do our best to help you secure the confidence you need to sail through this, without fear of failure or judgement. You see, we know you’re going to be successful.
Get onboard the treatment train, first class accommodation awaits you! You’re going to do great. When you have the information on your tests, share them in your signature line. Knowing your genotype, viral load and liver function tests, help us when replying. You can see how we set ours up. There’s a link to instructions in mine if you need help. I’m glad you’re here. If you need anything, just holler!
Hi everyone, I'm so glad I found this site.
I was diagnosed in 2007, in 2013 I had a biopsy that showed F0 damage, only slight inflammation. Since I suffer from Panic Disorder and a drug phobia, I decided to forgo treatment, which at that time was Interferon and ribo.
It is ironic that I used to misuse drugs, and now I have a phobia
I have come to the conclusion that living with HepC is actually adding to my anxiety and panic, as it is ALWAYS in the back of my mind. I just want it gone. I see commercials on the television, and finally realize I don't have to do Interferon, and why not give this a try.
My therapist wants me to go on Lexapro prior to treatment, for my anxiety, but my primary care physician adamantly disagrees. He notes that my panic is well under control with Xanax, and does not want me to have even more drugs to be anxious of, on top of whatever treatment option my Gastro discides on. (I assume Mavret or Harvoni). It is kind of disconcerting to be in the middle of their disagreement, although he is right. I am more anxious about being on an SSRI than any hepC meds.
At any rate, I go in for bloodwork next week, my insurance company has approved it. I will be on this site regularly for the foreseeable future, so.................Hello!