Hi Everyone. Just wanted to let you know I'm going to be moving over to the Tx thread because I started my treatment yesterday morning.
Dave and Pablo, I thoroughly agree with your advice. My sig-other and I tend to eat a well balanced diet daily and have been for many years. We cook all our meals at home from scratch generally. I have abstained from any alcohol completely upon finding out about this disease in February.
We try to grow our own veggies and have several fruit trees on our property but we are not big fruit eaters. Never have been. I make fresh sauerkraut routinely and eat it daily for gut health.
We do not go out to eat meals of any kind but occasionally resort to prepared meals from Costco that we keep in the freezer when we are in between multi-night meals. I do 99% of the cooking and I'm a darn good cook if I do say so myself.
We buy 1/2 side of organic local beef about every 16 months although we mostly eat chicken, fish and pork. We do a lot of BBQ and grilling, making our own smoked meats and salmon. Bought an electric pressure cooker (great investment) last year plus just acquired a 21qt traditional pressure cooker and have many quarts of home canned tomatoes and vegetables that my sig-other put up.
I drink about 2-3 liters of water a day and have for a number of years. I increased my intake as of yesterday so staying hydrated has always been something I do.
So with that I'll see you all in the treatment thread.
Thanks again.
Rick
Pablito said
Jun 28, 2016
Linuxter wrote:
No alcohol, period.
I second that. This is why I like this forum so much. I flirted with a different forum for a while but left after seeing so many posts about it being OK to drink moderate amounts of alcohol on/after treatment. There's a whole thread dedicated to it, started by one of the mods nonetheless!
I couldn't believe my eyes.
And welcome to the forum Grayeagle. Don't fret too much about the meds. Sof and dac are a walk in the park. Some super-mild flu-like symptoms/headache/gastro upset for the first few days and then nothing.
As for ribavirin it's not much fun. But the bottom line is that it's do-able. I did it for 4 months a few years back and was able to keep working, travel abroad and go about my daily life on it. And that was with interferon. Anaemia was the main issue, but I'm told this is less of an issue without interferon. As recommended, lots of fluid and generally look after yourself. It takes a few weeks for your Hb to drop so you shouldn't feel the ribavirin for a while. Insomnia and emotional lability were two other issues. I was prescribed zopiclone for sleep. I um-ed an ahh-ed about this for a while because I was in recovery, but in the end I did use it and it helped.
Pablo
Pablo
-- Edited by Pablito on Tuesday 28th of June 2016 05:23:31 PM
Linuxter said
Jun 28, 2016
GrayEagle wrote:
OK. So my meds showed up this morning. I'm a lot more nervous than I anticipated about starting treatment.
I'm thinking about starting in the mornings (tomorrow) because I want to know how this stuff is affecting me. If I take it night, I run the risk of being asleep and missing any subtleties. That is... if I can sleep with these meds coursing through my system.
Any thoughts from you seasoned pros?
I don't even like taking advil if it's not necessary. And my diet concerns me about taking 1200mg of Ribavarin and enduring the Reba rage. I'm short tempered enough as it is. My poor wife might not be able to take it.
Hi again Gray Eagle,
I just wrapped up a round of Sof/ Riba. One thing above all is to STAY fully HYDRATED at ALL times, it makes all the difference. I learned and found that if I drink a full gallon of H2O per day I did just fine. If I slacked at all on that, the Riba would take control. (Much better when you are in control, not the Riba).
Also highly recommend proper nutrition. No alcohol, period, No suppliments (unless Rx'd by your doc). Watch your salt intake closely (I don't add ANY to anything and Read Labels so you know). No processed foods if possible (I relied on a Mediterranean Diet, see links below)
Fresh Greens help a LOT. They help remove toxins from your system via intestinal tract as well as supplying essential nutrients to help your body fight the virus, I got into a routine of making Green Smoothies daily, there are lots of ideas/ recipes over at our Green Smoothie Ranch and here at the HepC and Nutrition section.
Fresh fruits too, along with veggies help hydrate, provide nutrients to fight the virus and help your liver heal.
You will learn to control any Riba Rage, if you feel it coming on, First Hydrate MORE, change your environment (i.e. go outside, take a walk, get a little exercise if you feel up to it and/ or put on some headphones, listen to some good music, watch a movie etc.). Be in charge of all of the above and show the Riba who's boss, doing these things DOES help.
As for being nervous about initially taking the meds, that is a very normal and natural response, we ALL get it. Not to worry, you've got this Rick ... you'll do fine and we'll be here the whole time, use us to vent, ask questions, tell us about your day, use this site as a Full On Support Mechanism ... that's what we're here for and we're just a big family and everyone here cares ... so use that.
Sorry about the long winded response, I just went through this all so it's fresh on my mind. You'll do great! Won't seem like it at first but time will fly and before ya know it you'll be looking at SVR ...
Dave
-- Edited by Linuxter on Tuesday 28th of June 2016 04:50:54 PM
JimmyK said
Jun 28, 2016
It is an honor to help others so don't give it another thought. You will be amazed at the perfect stranger you end up aiding down the road some right here.
The love of my life. So that said, do what makes you comfortable.
JimmyK
GrayEagle said
Jun 28, 2016
Thank You so much JimmyK. You don't know how much it means to me to know that total strangers are willing to stand shoulder to shoulder with me facing something so insanely serious as this.
I have a long ways to go and a lot to learn about getting to the other side and achieving SVR.
My heartfelt gratitude and appreciation to all of you taking the time and effort to respond to me.
One question though. Once I board the train should I start posting in the Treatment thread?
Thanks Again Everyone,
Rick
JimmyK said
Jun 28, 2016
GrayEagle wrote:
OK. So my meds showed up this morning. I'm a lot more nervous than I anticipated about starting treatment.
I'm thinking about starting in the mornings (tomorrow) because I want to know how this stuff is affecting me. If I take it night, I run the risk of being asleep and missing any subtleties. That is... if I can sleep with these meds coursing through my system.
Any thoughts from you seasoned pros?
I don't even like taking advil if it's not necessary. And my diet concerns me about taking 1200mg of Ribavarin and enduring the Reba rage. I'm short tempered enough as it is. My poor wife might not be able to take it.
Greetings,
First of all most everyone is a bit apprehensive at start up. That is a normal feeling. The fact is you are going to start and you are going to win the battle you are going into.
168 days and how to manage them is the question. We know that compliance, (taking the meds at roughly the same time everyday is important.) The Riba I assume is twice a day.
If you can, making the process a wake up is a good way to stay compliant provided you wake up same time 7 days a week. At least for the next 168 days. A solid schedule is helpful in not forgetting.
Myself, I am the 5:55am guy here and it has served me well. Neither my wife nor I have been late nor missed a dose and in both cases we have managed to take the pills at exactly the same time everyday withing one minute per day.
Personally the mornings worked best for me.
The Riba will effect you yes. I found that it took about 7 weeks for me to not quite get along with the stuff but each person is different with the exception of the need to stay well hydrated.
It is Summer and the Sunshine is not your friend this season. Cover up, wear a hat whatever but try and avoid direct sunlight.
Keep an eye on your HGB and if it drops too low your Doctor may make an adjustment. That would be down the road some but be aware. You may get to a point where 1200 mg is simply too much. Don't sweat that as it can be adjusted to allow for a more comfortable ride.
If you have episodes of Rage, learn to have fun with it. There is a beloved Mashed Potato thread around here somewhere that may point you in how that can be done.
Lastly and believe it or not quite importantly. Rely on this place. Use it often and that will help. You are going to find folks doing a lot better than you. You are also going to find folks doing a lot worse. Over time that will assist you because it is a reminder you are not alone. We are all n this together and there certainly is worse things in life than treatment of HepC.
But if under treatment you do feel alone that will mess with you. So don't allow that to happen. Come in here and play some music, write thoughts and observations. Need someone to yell at, well I volunteer. Yell at me and I promise to listen and at all times be honest.
The time goes incredibly fast and the road beyond treatment is pleasantly waiting and far more promising than you can imagine right now.
As others have mentioned, Do drink LOTs of water during Tx, (VERY important to drink 3-4 liters per day)
Dave
Thanks a bunch Dave. Good grief, that's a lot of abbreviations. No wonder I'm sitting here scratching my head.
GrayEagle said
Jun 28, 2016
OK. So my meds showed up this morning. I'm a lot more nervous than I anticipated about starting treatment.
I'm thinking about starting in the mornings (tomorrow) because I want to know how this stuff is affecting me. If I take it night, I run the risk of being asleep and missing any subtleties. That is... if I can sleep with these meds coursing through my system.
Any thoughts from you seasoned pros?
I don't even like taking advil if it's not necessary. And my diet concerns me about taking 1200mg of Ribavarin and enduring the Reba rage. I'm short tempered enough as it is. My poor wife might not be able to take it.
As others have mentioned, Do drink LOTs of water during Tx, (VERY important to drink 3-4 liters per day)
Dave
GrayEagle said
Jun 28, 2016
robertsamx wrote:
Hi Rick, big welcome to the forum from me also. I'm in the pacific Nortwest also. Living the Dream on the Columbia/Yakima river junction . Salmon fishing is just around the corner, and the walleye fishing is good now!! "O" ****-there I go again off on a fishing tyrant!!!
Oh how I love fishing. Tyraid on...
Rick, Jimmy has a good point. The P-A will schedule all the blood work to monitor you during treatment. The schedule Jimmy put up is spot on. 24 weeks of RIBA is the stickler here. The other two meds are no big deal. With your drugs aproved you should move forward with your treatment. Looking forward to watching you KUNG FU the dragon. RC
Linuxter said
Jun 28, 2016
Hi Rick,
I'm from the Pacific Northwest as well, Welcome to the forum. We're all very glad you're here!
As far as HCV Tx goes, I wouldn't dwell too much on the Gastro doc, as long as they signed the Rx and make sure you get the meds.
My doc (Infectious Disease) saw me once as initial visit, once at 6 weeks and that's it. No visits at blood draws, no visit at EOT, nothing.
That bothered me too but in the long run, what I needed was to get the meds (in my case Sof/ Riba). She signed the Rx.
Labs were done at my GP's office and only sent to the ID doc's office and that was at 4 wks only. ID doc pretty much washed her hands of me at the 6wks visit and said if I was Negative at EOT +12 I'm cured. I thought it was unprofessional and rude but that's just the way lots of docs roll.
Establish a rapport with the Gastro's nurse if possible. See if they have a system where you can get in touch via online ... here they call it "MyChart", you can ask questions and get lab results and answers provided by nurse. If that's not available, do it via call to the office and ask for your docs nurse to call you back (establish a rapport that way).
Get your GP involved as much as possible. They can do some labs (CBP or Comprehensive Blood Panel) to monitor ALT/ AST etc which are good indicators of how the HCV meds are working too.
So Congrats on getting this far, getting approved for 24 wks of meds is HUGE and just what you need.
If you have questions, you can ask them here too, we'll do our best to point you in the right directions. We can help decipher the lab results (try to always get a hard copy of those for your records).
Welcome, my friend, you've come to the right place
Dave
p.s. You may want to get your GP to refer you to a hepatologist re: your cirrhosis, first thing is to get rid of the Dragon (HCV) but the cirrhosis and liver damage should be closely monitored to ensure further complications.
-- Edited by Linuxter on Tuesday 28th of June 2016 03:05:05 PM
GrayEagle said
Jun 28, 2016
Sydhanrahan wrote:
Hi Rick,
just start the treatment and worry about who's monitoring you along the way latter. You'll have heaps of time to find out. No doubt the head honcho is off on a long holiday or taking as many statistical details as he can get hold of to the next International Liver Conference. Seems the louder they sing at those, the less likely they are to actually spend much time with the real people who are their patients.
Im a G2 but because of decompenstated cirrhosis I did 24 weeks of the same combination you are on. It's supposed to be very effective.
Good luck and start drinking that water!
Syd
Thanks Syd. Looking forward to making some new friends here.
GrayEagle said
Jun 28, 2016
Shadowfax wrote:
Welcome Rick
Glad you found us.
I as well as a few others had a similar experience as you are speaking about. My Doctor whom I have seen for 12 years prescribed my treatment but in fact I did not see him from that time until I had completed it. There was a NP who actually spoke with me and did up the lab Req's and honestly they have more time to explain things. As long as someone is monitoring you along the way, I would not worry too much about it
That's pretty much how this is going roll. The PA will be running the show.
If required at anytime, I am sure the doctor would intervene but hopefully that will never happen. It seems to be the way things are being done these days instead of the specialist taking his time to meet. As long as you can get answers on your results then you are good to go.
It's a sad state of affairs when Dr.'s work a couple of days a week and treatment protocol is left in the hands of less expensive and less educated staff.
Cheers and welcome aboard
Thank you very much. I'll be chiming in regularly. Seems like this will be the place where I'll be getting some well needed advice and encouragement.
SF
GrayEagle said
Jun 28, 2016
Tig56 wrote:I'm not happy that your doctor hasn't made time for you either. How did they determine your level of fibrosis? Biopsy, Fibroscan or the blood test, Fibrosure? I would want an accurate determination of that and not a guess by some phantom doctor. Just my opinion. The length of treatment varies based on the accurate fibrosis score. This protocol can be given for 12, 16 or 24 weeks.
There has been no diagnosis given to me about what level of fibrosis or cirrhosis I may have.
Is it possible to contact your doctors office and state that you want to see him/her before you start treatment? You should have an idea of what lies ahead, a testing schedule and some contact information in case you need to see them in a hurry outside of your regular appointment schedule.
I was told by the PA that the Dr. wasn't available until sometime in August and he's already booked for that month.
Not seeing your doctor before starting something like this is unusual. If you can't get any assistance before treatment begins, is there a chance you could request another physician?
He's the only Dr. that was accepting new patients at this office. No other options available.
Make some calls tomorrow and simply ask, why can't I see my doctor before I start? There really isn't a good reason for them to not get you in ahead of time. You'll have your medication on Tuesday and some contact by your doctor is more than reasonable. If they can get you in for a quick meet and greet (if that's all they can do), you'll feel better and we can help you with the right questions to ask, if you need them.
Stay in touch and let us know more about your testing to date. If you have any blood work you'd like to share, like your full liver profile, CBC, etc., it will help us get a better idea of where you stand.
I'm so new to this and the medical information has been so poorly disseminated to me I'm not really sure what all these test results are.
We're always here to answer your questions and will look forward to your help advising and supporting us as well. We're all one big family and look forward to watching you progress to the coveted SVR. Good luck!
Thanks so much Tig56.
GrayEagle said
Jun 28, 2016
Iris,
There's no fill-in Dr. Looks like the pA will be running the show. I'm pre-scheduled for blood draws week 1, 3, 5 post start date. Thanks for the warm welcome.
Shadowfax said
Jun 27, 2016
Welcome Rick
Glad you found us.
I as well as a few others had a similar experience as you are speaking about. My Doctor whom I have seen for 12 years prescribed my treatment but in fact I did not see him from that time until I had completed it. There was a NP who actually spoke with me and did up the lab Req's and honestly they have more time to explain things. As long as someone is monitoring you along the way, I would not worry too much about it
If required at anytime, I am sure the doctor would intervene but hopefully that will never happen. It seems to be the way things are being done these days instead of the specialist taking his time to meet. As long as you can get answers on your results then you are good to go.
Cheers and welcome aboard
SF
GrayEagle said
Jun 27, 2016
Wow... I wasn't expecting such a vibrant welcome. I'm a little short on time right now but I will came back and reply to each and every one of you as I can.
Thank You all for such a warm welcome and advice.
Sydhanrahan said
Jun 27, 2016
Hi Rick,
just start the treatment and worry about who's monitoring you along the way latter. You'll have heaps of time to find out. No doubt the head honcho is off on a long holiday or taking as many statistical details as he can get hold of to the next International Liver Conference. Seems the louder they sing at those, the less likely they are to actually spend much time with the real people who are their patients.
Im a G2 but because of decompenstated cirrhosis I did 24 weeks of the same combination you are on. It's supposed to be very effective.
Good luck and start drinking that water!
Syd
wendyo said
Jun 27, 2016
Welcome to the family and aboard the train Rick! My experience was pretty much what Jimmy described. I saw the doc at the beginning and end. The NP heads up all the HCV treatments at that practice, has been that way the entire time I have been their patient (16 years, 3 treatments) I do see Tig's point and not sure what would have happened if I asked to see doc. BUT you are on your way, tomorrow you board the train. And since no one has said it yet, I will.....HYDRATE!!!
wendy
Tig said
Jun 26, 2016
You know everyone makes a good point. There are lots of qualified medical personnel out there that can do this. However, the cost of this triple for 24 weeks is just shy of $280,000 dollars (retail). That's for the meds alone. Now dial in medical care, testing, personal effort, etc and maybe that jacks the total up to $300-350K. How much is the good doctor pocketing? In my mind, s/he owes me at least an introductory hello, how are ya and see you maybe in 9 months, so I can give you the good news. It's the principle. If I want to see my doctor, I should be able to see my doctor. If a PA or Nurse Practitioner is all we need to obtain treatment, why are they making people wait months to see a specialist that they don't even get to meet? Open this up to GP's and Internists. If a specialist isn't necessary and it seems if a PA can do it, any licensed MD or DO should be allowed to get involved. But hey, that's just me.
I get into those moods too, today's it...
robertsamx said
Jun 26, 2016
Hi Rick, big welcome to the forum from me also. I'm in the pacific Nortwest also. Living the Dream on the Columbia/Yakima river junction . Salmon fishing is just around the corner, and the walleye fishing is good now!! "O" ****-there I go again off on a fishing tyrant!!!
Rick, Jimmy has a good point. The P-A will schedule all the blood work to monitor you during treatment. The schedule Jimmy put up is spot on. 24 weeks of RIBA is the stickler here. The other two meds are no big deal. With your drugs aproved you should move forward with your treatment. Looking forward to watching you KUNG FU the dragon. RC
JimmyK said
Jun 26, 2016
Greetings,
I am going to take a little different approach regarding the Doctor.
The key at this point of the process is a good assistant to the Doctor. This is the person that will be scheduling your blood work and periodic office visits.
You should be scheduled for CBC, BMP, and a Liver Panel at week two.
Week four HCV RNA and a short Panel.
Other Blood draws weeks, 8, 12, 16, 20, and 24. 12 weeks later is the deciding HCV RNA.
If they have not done this as a minimum, then I would reconsider caregivers.
You have to have close monitoring through the process. If they are going to do that then not seeing the Doctor specifically is not so bad. But the MUST have a schedule like the above based on your start date.
I would also ask for copies of all paper they have on you. Blood tests, MRI, the works. See if they use an online reporting service like "My Chart".
Lastly, Welcome to The Family!
JimmyK
Loopy Lisa said
Jun 26, 2016
Hi GreyEagle,
A big hello from me. I am a fellow G3 but a b, a lone wolf amongst you a's, I'm 5% different :P
I am so happy to hear you are getting on treatment, it seems like it is the right time and its a good combo. The Dak and Sof are not much bother, I've been on them 5 days now, nearly reaching my first week. The riba does has some issues so you really need to make sure your doctor is onboard as you will need checks for anemia. I can only suggest you chase him up or find another fast.
Other than that, a big fat welcome, we are going through a radical change in Hep C and we are all apart of that history. :D
Tig said
Jun 26, 2016
Hi Rick,
Welcome aboard! You're joining other members from the Great Pacific Northwest. They'll be along to welcome you too. We do have a great bunch of people and you're going to fit right in, you already are! I'm glad you found us and have had an opportunity to look around and soak up some of the information. If you need any additional direction or information, don't hesitate to ask.
24 weeks of Sov/Dak/Riba is one of the recommended protocols for GT 3, and there are others available and in the pipeline as well. According to trial figures, the SVR rates for 24 weeks with cirrhosis, is about 90%. I'm not happy that your doctor hasn't made time for you either. How did they determine your level of fibrosis? Biopsy, Fibroscan or the blood test, Fibrosure? I would want an accurate determination of that and not a guess by some phantom doctor. Just my opinion. The length of treatment varies based on the accurate fibrosis score. This protocol can be given for 12, 16 or 24 weeks. Is it possible to contact your doctors office and state that you want to see him/her before you start treatment? You should have an idea of what lies ahead, a testing schedule and some contact information in case you need to see them in a hurry outside of your regular appointment schedule. Not seeing your doctor before starting something like this is unusual. If you can't get any assistance before treatment begins, is there a chance you could request another physician? Make some calls tomorrow and simply ask, why can't I see my doctor before I start? There really isn't a good reason for them to not get you in ahead of time. You'll have your medication on Tuesday and some contact by your doctor is more than reasonable. If they can get you in for a quick meet and greet (if that's all they can do), you'll feel better and we can help you with the right questions to ask, if you need them.
Stay in touch and let us know more about your testing to date. If you have any blood work you'd like to share, like your full liver profile, CBC, etc., it will help us get a better idea of where you stand. We're always here to answer your questions and will look forward to your help advising and supporting us as well. We're all one big family and look forward to watching you progress to the coveted SVR. Good luck!
Iris Dragonfly said
Jun 26, 2016
Hi there! Congratulations on getting approved for treatment. ..does seem strange the dr. is not more involved, that would be unsettling for me...does he have a fill-in or someone you can contact while on the meds?
In any case welcome to the forum, Iris
GrayEagle said
Jun 26, 2016
I'm new here but have been reading a lot of info in here. Seems like a bunch of really nice folks in here.
Really nervous about this whole Tx thing. Just went for my first physical in many years back in Feb. and one test result lead to another and before I knew it I was being subjected to one major test (MRI, Sonogram, etc) after another.
Guess back in my twenties when I was heavily involved in full contact martial arts, guess I was exposed to someones blood that was infected. Never injected drugs or any of the comon infection vectors. That was ~35 years ago.
The end result, I was diagnosed with HCV Gt 3a. It took three months to get an appointment with a gastro which lead to attempting to get approved for treatment.
To my delighted surprise, It only took about three weeks for approval from the insurance company. That was last Thursday and Saturday 6/25/16, I was contacted by the dispensing pharmacy and my first shipment of six will be arriving 6/28/16. 24 weeks of Daklinza, Solvoldi, and Ribavarin.
Seems my liver is a bit cirrhotic but don't know the extent yet. I've only seen my Gastro doc once back on 5/17 and haven't seen him since. I was told he's unavailable until sometime in August.
Just doesn't seem right that your doctor has never once called me in to go over any of the test results and has no plans to do so to my knowledge. Matter of fact, I feel abandoned by him.
Not sure about going through this treatment without the support of my gastro doc along the way.
Anyways, got my boarding pass on the Dragon Slaying train. All Aboard!
Dave and Pablo, I thoroughly agree with your advice. My sig-other and I tend to eat a well balanced diet daily and have been for many years. We cook all our meals at home from scratch generally. I have abstained from any alcohol completely upon finding out about this disease in February.
We try to grow our own veggies and have several fruit trees on our property but we are not big fruit eaters. Never have been. I make fresh sauerkraut routinely and eat it daily for gut health.
We do not go out to eat meals of any kind but occasionally resort to prepared meals from Costco that we keep in the freezer when we are in between multi-night meals. I do 99% of the cooking and I'm a darn good cook if I do say so myself.
We buy 1/2 side of organic local beef about every 16 months although we mostly eat chicken, fish and pork. We do a lot of BBQ and grilling, making our own smoked meats and salmon. Bought an electric pressure cooker (great investment) last year plus just acquired a 21qt traditional pressure cooker and have many quarts of home canned tomatoes and vegetables that my sig-other put up.
I drink about 2-3 liters of water a day and have for a number of years. I increased my intake as of yesterday so staying hydrated has always been something I do.
So with that I'll see you all in the treatment thread.
Thanks again.
Rick
I second that. This is why I like this forum so much. I flirted with a different forum for a while but left after seeing so many posts about it being OK to drink moderate amounts of alcohol on/after treatment. There's a whole thread dedicated to it, started by one of the mods nonetheless!
I couldn't believe my eyes.
And welcome to the forum Grayeagle. Don't fret too much about the meds. Sof and dac are a walk in the park. Some super-mild flu-like symptoms/headache/gastro upset for the first few days and then nothing.
As for ribavirin it's not much fun. But the bottom line is that it's do-able. I did it for 4 months a few years back and was able to keep working, travel abroad and go about my daily life on it. And that was with interferon. Anaemia was the main issue, but I'm told this is less of an issue without interferon. As recommended, lots of fluid and generally look after yourself. It takes a few weeks for your Hb to drop so you shouldn't feel the ribavirin for a while. Insomnia and emotional lability were two other issues. I was prescribed zopiclone for sleep. I um-ed an ahh-ed about this for a while because I was in recovery, but in the end I did use it and it helped.
Pablo
Pablo
-- Edited by Pablito on Tuesday 28th of June 2016 05:23:31 PM
Hi again Gray Eagle,
I just wrapped up a round of Sof/ Riba. One thing above all is to STAY fully HYDRATED at ALL times, it makes all the difference. I learned and found that if I drink a full gallon of H2O per day I did just fine. If I slacked at all on that, the Riba would take control. (Much better when you are in control, not the Riba).
Also highly recommend proper nutrition. No alcohol, period, No suppliments (unless Rx'd by your doc). Watch your salt intake closely (I don't add ANY to anything and Read Labels so you know). No processed foods if possible (I relied on a Mediterranean Diet, see links below)
Fresh Greens help a LOT. They help remove toxins from your system via intestinal tract as well as supplying essential nutrients to help your body fight the virus, I got into a routine of making Green Smoothies daily, there are lots of ideas/ recipes over at our Green Smoothie Ranch and here at the HepC and Nutrition section.
Fresh fruits too, along with veggies help hydrate, provide nutrients to fight the virus and help your liver heal.
You will learn to control any Riba Rage, if you feel it coming on, First Hydrate MORE, change your environment (i.e. go outside, take a walk, get a little exercise if you feel up to it and/ or put on some headphones, listen to some good music, watch a movie etc.). Be in charge of all of the above and show the Riba who's boss, doing these things DOES help.
As for being nervous about initially taking the meds, that is a very normal and natural response, we ALL get it. Not to worry, you've got this Rick ... you'll do fine and we'll be here the whole time, use us to vent, ask questions, tell us about your day, use this site as a Full On Support Mechanism ... that's what we're here for and we're just a big family and everyone here cares ... so use that.
Sorry about the long winded response, I just went through this all so it's fresh on my mind. You'll do great! Won't seem like it at first but time will fly and before ya know it you'll be looking at SVR ...
Dave
-- Edited by Linuxter on Tuesday 28th of June 2016 04:50:54 PM
It is an honor to help others so don't give it another thought. You will be amazed at the perfect stranger you end up aiding down the road some right here.
I have started a few threads I consider home.
http://hepcfriends.activeboard.com/t61269039/test-results-appreciate-input/
^That one is kind of tbecoming the never ending Saga and..
http://hepcfriends.activeboard.com/t61373210/the-wife/
The love of my life. So that said, do what makes you comfortable.
JimmyK
I have a long ways to go and a lot to learn about getting to the other side and achieving SVR.
My heartfelt gratitude and appreciation to all of you taking the time and effort to respond to me.
One question though. Once I board the train should I start posting in the Treatment thread?
Thanks Again Everyone,
Rick
Greetings,
First of all most everyone is a bit apprehensive at start up. That is a normal feeling. The fact is you are going to start and you are going to win the battle you are going into.
168 days and how to manage them is the question. We know that compliance, (taking the meds at roughly the same time everyday is important.) The Riba I assume is twice a day.
If you can, making the process a wake up is a good way to stay compliant provided you wake up same time 7 days a week. At least for the next 168 days. A solid schedule is helpful in not forgetting.
Myself, I am the 5:55am guy here and it has served me well. Neither my wife nor I have been late nor missed a dose and in both cases we have managed to take the pills at exactly the same time everyday withing one minute per day.
Personally the mornings worked best for me.
The Riba will effect you yes. I found that it took about 7 weeks for me to not quite get along with the stuff but each person is different with the exception of the need to stay well hydrated.
It is Summer and the Sunshine is not your friend this season. Cover up, wear a hat whatever but try and avoid direct sunlight.
Keep an eye on your HGB and if it drops too low your Doctor may make an adjustment. That would be down the road some but be aware. You may get to a point where 1200 mg is simply too much. Don't sweat that as it can be adjusted to allow for a more comfortable ride.
If you have episodes of Rage, learn to have fun with it. There is a beloved Mashed Potato thread around here somewhere that may point you in how that can be done.
Lastly and believe it or not quite importantly. Rely on this place. Use it often and that will help. You are going to find folks doing a lot better than you. You are also going to find folks doing a lot worse. Over time that will assist you because it is a reminder you are not alone. We are all n this together and there certainly is worse things in life than treatment of HepC.
But if under treatment you do feel alone that will mess with you. So don't allow that to happen. Come in here and play some music, write thoughts and observations. Need someone to yell at, well I volunteer. Yell at me and I promise to listen and at all times be honest.
The time goes incredibly fast and the road beyond treatment is pleasantly waiting and far more promising than you can imagine right now.
Welcome to The Family.
JimmyK
Thanks a bunch Dave. Good grief, that's a lot of abbreviations. No wonder I'm sitting here scratching my head.
OK. So my meds showed up this morning. I'm a lot more nervous than I anticipated about starting treatment.
I'm thinking about starting in the mornings (tomorrow) because I want to know how this stuff is affecting me. If I take it night, I run the risk of being asleep and missing any subtleties. That is... if I can sleep with these meds coursing through my system.
Any thoughts from you seasoned pros?
I don't even like taking advil if it's not necessary. And my diet concerns me about taking 1200mg of Ribavarin and enduring the Reba rage. I'm short tempered enough as it is. My poor wife might not be able to take it.
Oh, in case you happen to need it, HERE's a list of abbreviations used here.
As others have mentioned, Do drink LOTs of water during Tx, (VERY important to drink 3-4 liters per day)
Dave
Hi Rick,
I'm from the Pacific Northwest as well, Welcome to the forum. We're all very glad you're here!
As far as HCV Tx goes, I wouldn't dwell too much on the Gastro doc, as long as they signed the Rx and make sure you get the meds.
My doc (Infectious Disease) saw me once as initial visit, once at 6 weeks and that's it. No visits at blood draws, no visit at EOT, nothing.
That bothered me too but in the long run, what I needed was to get the meds (in my case Sof/ Riba). She signed the Rx.
Labs were done at my GP's office and only sent to the ID doc's office and that was at 4 wks only. ID doc pretty much washed her hands of me at the 6wks visit and said if I was Negative at EOT +12 I'm cured. I thought it was unprofessional and rude but that's just the way lots of docs roll.
Establish a rapport with the Gastro's nurse if possible. See if they have a system where you can get in touch via online ... here they call it "MyChart", you can ask questions and get lab results and answers provided by nurse. If that's not available, do it via call to the office and ask for your docs nurse to call you back (establish a rapport that way).
Get your GP involved as much as possible. They can do some labs (CBP or Comprehensive Blood Panel) to monitor ALT/ AST etc which are good indicators of how the HCV meds are working too.
So Congrats on getting this far, getting approved for 24 wks of meds is HUGE and just what you need.
If you have questions, you can ask them here too, we'll do our best to point you in the right directions. We can help decipher the lab results (try to always get a hard copy of those for your records).
Welcome, my friend, you've come to the right place
Dave
p.s. You may want to get your GP to refer you to a hepatologist re: your cirrhosis, first thing is to get rid of the Dragon (HCV) but the cirrhosis and liver damage should be closely monitored to ensure further complications.
-- Edited by Linuxter on Tuesday 28th of June 2016 03:05:05 PM
Iris,
There's no fill-in Dr. Looks like the pA will be running the show. I'm pre-scheduled for blood draws week 1, 3, 5 post start date. Thanks for the warm welcome.
Welcome Rick
Glad you found us.
I as well as a few others had a similar experience as you are speaking about. My Doctor whom I have seen for 12 years prescribed my treatment but in fact I did not see him from that time until I had completed it. There was a NP who actually spoke with me and did up the lab Req's and honestly they have more time to explain things. As long as someone is monitoring you along the way, I would not worry too much about it
If required at anytime, I am sure the doctor would intervene but hopefully that will never happen. It seems to be the way things are being done these days instead of the specialist taking his time to meet. As long as you can get answers on your results then you are good to go.
Cheers and welcome aboard
SF
Thank You all for such a warm welcome and advice.
Hi Rick,
just start the treatment and worry about who's monitoring you along the way latter. You'll have heaps of time to find out. No doubt the head honcho is off on a long holiday or taking as many statistical details as he can get hold of to the next International Liver Conference. Seems the louder they sing at those, the less likely they are to actually spend much time with the real people who are their patients.
Im a G2 but because of decompenstated cirrhosis I did 24 weeks of the same combination you are on. It's supposed to be very effective.
Good luck and start drinking that water!
Syd
Welcome to the family and aboard the train Rick! My experience was pretty much what Jimmy described. I saw the doc at the beginning and end. The NP heads up all the HCV treatments at that practice, has been that way the entire time I have been their patient (16 years, 3 treatments) I do see Tig's point and not sure what would have happened if I asked to see doc. BUT you are on your way, tomorrow you board the train. And since no one has said it yet, I will.....HYDRATE!!!
wendy
You know everyone makes a good point. There are lots of qualified medical personnel out there that can do this. However, the cost of this triple for 24 weeks is just shy of $280,000 dollars (retail). That's for the meds alone. Now dial in medical care, testing, personal effort, etc and maybe that jacks the total up to $300-350K. How much is the good doctor pocketing? In my mind, s/he owes me at least an introductory hello, how are ya and see you maybe in 9 months, so I can give you the good news. It's the principle. If I want to see my doctor, I should be able to see my doctor. If a PA or Nurse Practitioner is all we need to obtain treatment, why are they making people wait months to see a specialist that they don't even get to meet? Open this up to GP's and Internists. If a specialist isn't necessary and it seems if a PA can do it, any licensed MD or DO should be allowed to get involved. But hey, that's just me.
I get into those moods too, today's it...
Hi Rick, big welcome to the forum from me also. I'm in the pacific Nortwest also. Living the Dream on the Columbia/Yakima river junction . Salmon fishing is just around the corner, and the walleye fishing is good now!! "O" ****-there I go again off on a fishing tyrant!!!
Rick, Jimmy has a good point. The P-A will schedule all the blood work to monitor you during treatment. The schedule Jimmy put up is spot on. 24 weeks of RIBA is the stickler here. The other two meds are no big deal. With your drugs aproved you should move forward with your treatment. Looking forward to watching you KUNG FU the dragon. RC
Greetings,
I am going to take a little different approach regarding the Doctor.
The key at this point of the process is a good assistant to the Doctor. This is the person that will be scheduling your blood work and periodic office visits.
You should be scheduled for CBC, BMP, and a Liver Panel at week two.
Week four HCV RNA and a short Panel.
Other Blood draws weeks, 8, 12, 16, 20, and 24. 12 weeks later is the deciding HCV RNA.
If they have not done this as a minimum, then I would reconsider caregivers.
You have to have close monitoring through the process. If they are going to do that then not seeing the Doctor specifically is not so bad. But the MUST have a schedule like the above based on your start date.
I would also ask for copies of all paper they have on you. Blood tests, MRI, the works. See if they use an online reporting service like "My Chart".
Lastly, Welcome to The Family!
JimmyK
Hi GreyEagle,
A big hello from me. I am a fellow G3 but a b, a lone wolf amongst you a's, I'm 5% different :P
I am so happy to hear you are getting on treatment, it seems like it is the right time and its a good combo. The Dak and Sof are not much bother, I've been on them 5 days now, nearly reaching my first week. The riba does has some issues so you really need to make sure your doctor is onboard as you will need checks for anemia. I can only suggest you chase him up or find another fast.
Other than that, a big fat welcome, we are going through a radical change in Hep C and we are all apart of that history. :D
Hi Rick,
Welcome aboard! You're joining other members from the Great Pacific Northwest. They'll be along to welcome you too. We do have a great bunch of people and you're going to fit right in, you already are! I'm glad you found us and have had an opportunity to look around and soak up some of the information. If you need any additional direction or information, don't hesitate to ask.
24 weeks of Sov/Dak/Riba is one of the recommended protocols for GT 3, and there are others available and in the pipeline as well. According to trial figures, the SVR rates for 24 weeks with cirrhosis, is about 90%. I'm not happy that your doctor hasn't made time for you either. How did they determine your level of fibrosis? Biopsy, Fibroscan or the blood test, Fibrosure? I would want an accurate determination of that and not a guess by some phantom doctor. Just my opinion. The length of treatment varies based on the accurate fibrosis score. This protocol can be given for 12, 16 or 24 weeks. Is it possible to contact your doctors office and state that you want to see him/her before you start treatment? You should have an idea of what lies ahead, a testing schedule and some contact information in case you need to see them in a hurry outside of your regular appointment schedule. Not seeing your doctor before starting something like this is unusual. If you can't get any assistance before treatment begins, is there a chance you could request another physician? Make some calls tomorrow and simply ask, why can't I see my doctor before I start? There really isn't a good reason for them to not get you in ahead of time. You'll have your medication on Tuesday and some contact by your doctor is more than reasonable. If they can get you in for a quick meet and greet (if that's all they can do), you'll feel better and we can help you with the right questions to ask, if you need them.
Stay in touch and let us know more about your testing to date. If you have any blood work you'd like to share, like your full liver profile, CBC, etc., it will help us get a better idea of where you stand. We're always here to answer your questions and will look forward to your help advising and supporting us as well. We're all one big family and look forward to watching you progress to the coveted SVR. Good luck!
Hi there! Congratulations on getting approved for treatment. ..does seem strange the dr. is not more involved, that would be unsettling for me...does he have a fill-in or someone you can contact while on the meds?
In any case welcome to the forum,
Iris
I'm new here but have been reading a lot of info in here. Seems like a bunch of really nice folks in here.
Really nervous about this whole Tx thing. Just went for my first physical in many years back in Feb. and one test result lead to another and before I knew it I was being subjected to one major test (MRI, Sonogram, etc) after another.
Guess back in my twenties when I was heavily involved in full contact martial arts, guess I was exposed to someones blood that was infected. Never injected drugs or any of the comon infection vectors. That was ~35 years ago.
The end result, I was diagnosed with HCV Gt 3a. It took three months to get an appointment with a gastro which lead to attempting to get approved for treatment.
To my delighted surprise, It only took about three weeks for approval from the insurance company. That was last Thursday and Saturday 6/25/16, I was contacted by the dispensing pharmacy and my first shipment of six will be arriving 6/28/16. 24 weeks of Daklinza, Solvoldi, and Ribavarin.
Seems my liver is a bit cirrhotic but don't know the extent yet. I've only seen my Gastro doc once back on 5/17 and haven't seen him since. I was told he's unavailable until sometime in August.
Just doesn't seem right that your doctor has never once called me in to go over any of the test results and has no plans to do so to my knowledge. Matter of fact, I feel abandoned by him.
Not sure about going through this treatment without the support of my gastro doc along the way.
Anyways, got my boarding pass on the Dragon Slaying train. All Aboard!