Well done, Chuck! We can all find a similarity in your poem. I can attest to many, but I'll just let people guess. No sense pointing out my flaws, lol! You know, you might have a future in this writing thingy! Thanks, your continued contributions are very appreciated. You are "Numba-One" in my book!
Syd,
We love ya Sis! Stick with us, kid. We'll help you find that light at the end of that tunnel or we'll join you and help light the way. I'm looking forward to coffee under the Pergola. I know we'll have some good stories to share!
Pamela,
There will be good days and bad, but the "first is the worst". The first part of treatment will deliver you the worst of the adjustment period. You're asking your body to join forces with some very powerful medication. They both place great strain on you, physically and emotionally. I believe if you look at personal experience among members on the new DAA's, you'll see the first 2-3 weeks take it out of you. After that it should smooth out. That's my wish for you and all people just starting. Take care of yourself right now. It's a good time to baby yourself. You're battling a Dragon and it really dislikes a well fed, hydrated and rested foe. It's up to you to deliver it all the grief possible!!
Phoenix17 said
Oct 23, 2016
Right on with the poem Canuck! There are so many symptoms that people think is just due to ageing, but it's not. That's what i thought anyway.
It is scary Syd, but I do believe relief is around the corner!
Every now and then I have a sense of clarity which makes me believe that it's getting healing, but then I am all over the place again. I know it will get better. After having this for so long it will take some time for the body to heal. I do enjoy feeling the little things that are getting better. It gives me hope.
Pamelaben said
Oct 23, 2016
Oh excellent poem! You got some giggles from me for sure. Thank you for sharing so openly. I'm cold today. Can't get warmed up. Feels like an interior thing. But it is October in Virgina lol. So possibly that.
Sydhanrahan said
Oct 23, 2016
Ahhhh Canuck,
youve pressed the right buttons there. I walk into a room and stand there staring, trying to remember what I wanted. Can't remember the names of my favourite authors, politicians etc. not much long term memory either so I feel like a little bug crawlingbalong a piece of string with no memory of the last inch and no idea what the in store on the next inch.
Scary
syd
wendyo said
Oct 23, 2016
Canuck - you are the best. That poem was fabulous. I bet we all relate to some/part/most? of it
Pamela - you may want to also use the search button and type in before and after as there are many threads about that subject. As we have been on different treatments and are at various stages of age and health, it is not the same for us all. But you will find some some info, reassurances and know you are not alone.
Canuck said
Oct 23, 2016
Dif. regime and dif. conditions (before and after), so I can't really compare myself to you. But in an attempt to answer your question about how I feel at EOT+24 weeks? compared to before? .... some better - my profound fatigue and fog has started to improve. (Why is it always "in retrospect" with me!!), but, in retrospect, when I finally found out I had unknowingly been packing HCV for over 40 years (just got diagnosed 2015) it explained a lot, as to why I had these building long-standing unexplained symptoms (fatigue/fog, and a long list of other things) for many decades.
I spiraled a lot the last decade and exponentially for the last years/months just prior to my diagnosis in 2015, even on treatment I was spiraling! I am SO relieved now, to be able to sense I am getting a break from some of these things I have been living with for so long, and I can piece together that many things I had been experiencing prior were a result of my HCV and resultant health situ.
I am really excited about my "head" starting be be returned to me, and, loosing the huge amounts of required sleep and naps (of which I had no absolutely no say in the matter of avoiding, but would still awake bagged). I am less weak, gaining strength back again, I tackled a walk up a hill the other day that I would have never attempted or managed a year ago, I felt as happy about it as if it had been Mt. Everest! It was a hill walk I used to be able to do, and now, have improved enough, I could do it again!
Experiencing those things areREALLY nice, and I so look forward to seeing how I do over the next year, and see what and how much more improves!
I have said it a couple times before, about watching out for those side effects to these drugs, they can creep up on you, some of the most insidious and strong ones are hope and relief. May just take a bit to recognize them at first. Can you think of any ways at home or work to try to take some of the pressure off? At my worst, my partner actually stopped letting me drive, and to tell you the truth I was glad, that how discombobulated I was! (I got my keys and fob back now!)
LOL Phoenix, about your car door key fob thing, that's me all over!! Talk about forgetting - poem at bottom I wrote a while back (before I realized some of my senior faux pas might not have been early "aging" alone, but were likely being well helped along by HCV)!
I think it was Linux (smoothie creator extraordinaire) who threatened to invent a patented drink called "Fog Begone", wonder what he put in it?! hee hee.
I hope my poem makes you giggle at me Pamela. C.
Never was no good at math
nor speelin much either.
Uncoordinated,
sports, dance not learned neither.
So you'll hardly notice,
my counting's worse.
Disguised are my deficits
when I swing an empty purse.
My memory is going,
teeth following soon I fear
I smile at ya on the street
figure later who yer were.
Armed with reader glasses
sporting two pairs on head,
while hunting for my lists,
lost treasures found instead.
Can't read the shampoo bottle
no lather in conditioner,
my hair is dirty but oh so soft
whatever's left up there.
How did I ever get so much done,
like in the past,
my lists are not working,
things are going way too fast.
Like a sucking vortex
too soon all things do pass,
Yesterday a babe
now I ignore my ass.
Rush about the room
missing paper in hissy-fit,
in humbled rage I find it
tucked under my armpit.
What a deal, what a steal
off to the Friday sale!
Pay full price, it's Saturday,
bargain days derailed.
Periodically memorize
my age, I tend to forget,
just in case someone asks,
I dread these deficits.
Warm up stiff legs,
three trips from house to car,
before the keys are found,
right where they are!
My hearing is all wonky,
we fight about mumbling ways.
Tastebuds worn and wanting,
the kitchen's stale to play.
Hide my collection of burnt rice pots,
steam veggies dry,
eat crisp pork chops, a lot,
he doesn't ask me why.
Milk in the cupboard,
cereal in the fridge,
who the hell did that I say,
damned synaptic bridge!
If I could just remember
a name when I demand,
list a title, author, date
I'd feel some command.
Pamelaben said
Oct 22, 2016
Hey friends. How's everyone? I'm still up and down alot but more good than not yesterday and today. Can someone tell me what changes in how you felt after completing treatment?
Tig said
Oct 20, 2016
It has happened to most of us, don't be hard on yourself. This will be over soon and you'll notice the improvements that SVR brings. You have the support of everyone here, let us help you get to the finish line. The first 2-3 weeks seem to be an adjustment period due to the changes your body experiences. Consider what your system is dealing with, there's a battle going on, between a nasty virus and some powerful drugs. Hang in there!
Canuck said
Oct 19, 2016
Ya, hate days like that! Sorry for this one. There is a lot of pressure on us, just getting and then going through HCV treatment, never mind EVERYTHING else!
If only we could drink the tears, to at least keep up the H20, recycle them sort to speak, then the release of them would not be such a waste!! Getting cured is a time fraught with emotional upheaval. We come pre-loaded to this journey and I believe tears, frustration and feeling disappointments are natural part. Hang in there, there will be MANY good days to come. Chase your tears down with a big glass of water, comfort yourself, you will steel yourself again tomorrow.
My bro would say ... some days are diamonds and some are glass. C.
Phoenix17 said
Oct 19, 2016
Don't worry about it Pamela. I just started week 6 of Epclusa and tonight I tried to open the front door to my house with my automatic car lock which is on my key chain. I pushed the unlock button and aimed it to the door, then I thought what the @#$#@ am I doing? That is something that I have never done before!! The brain fog needs to go away now! Don't beat yourself up about it. It will all work out in the end.
Pamelaben said
Oct 19, 2016
Hey guys. I spoke to soon. Today I felt awful. Exhausted and my brains not working. I forgot an appointment for my son which never happens and now can't stop crying about it. I feel sad because I'm used to keeping everything together and I messed up today. But tomorrow is a new day. Thanks for listening. I'm grateful for all of you. I'm glad I joined. So if I don't answer questions that people have directly I just seem to forget them by the time I get to the post a reply page.
Tig said
Oct 18, 2016
Hi Pamela,
I'm happy to hear you are feeling better. Having digestive nasties is never fun. The first few weeks seems to be the adjustment period and for most, things smooth out. I hope that's the case for you. It certainly sounds pretty good right now!
Let us know when you get your results back. I'm sure you'll be pleased!
Pamelaben said
Oct 18, 2016
I have blood work scheduled next week.
Pamelaben said
Oct 18, 2016
Hey guys
Just wanted to update. I'm feeling better. I was feeling pretty icky for maybe 5 days. My hair was coming out again. I also have a bad tummy ache and diarrhea. It feels like a cleanse. Anyhow, feel on the mend. How's everyone?
Canuck said
Oct 15, 2016
Hi Pamela,
You were asking .... "Is it usual to hv such an array of things?" .
Just off the cuff, I would say yes! Ragdoll recounted she did not feel too much, but I recall some others on your regime felt things. I think it might be par for the course, and, dif. for everyone. You are on a "mix" including NS3/4A's, (and I do not know this for a fact), but I am thinking maybe one can feel being on NS3/4A's more?? Question for Tig I think.
I am still hoping that what you feel will just be the first couple weeks, a short duration, that is leaving you wondering, is it me, the drugs, the internal warfare being waged, sides, or what? - just like quite a few people do (feeling something, especially in the beginning), no matter what their regime is!
I too felt so grateful to receive my treatment drugs and relieved I did not pass it on to my partner of 30+ years. How long had you been waiting for treatment? It may be an unknown, when exactly you got hepc, but when did you get diagnosed? Can you give us an idea of your prior VL, ALT's, F-score, etc? At your young age perhaps your level of fibrosis is not great.
Your work sounds as though it must be very interesting. I guess, with two little ones, and work, you must be feeling spread out a little thin. Try to do what you can to treat yourself well, especially while you are feeling "off/not yourself". PLENTY of water, good food, and getting enough rest are number one. I was especially lucky through treatment as my partner was such a good support for me.
Glad the oatmeal seemed to help a bit. You might explore some of the ideas Tig and wendy brought forth if the pruritis continues. What do you have lined up for dr. appointments and blood tests? C.
Pamelaben said
Oct 15, 2016
Hey friends
I can't say enough how grateful I am for all the kind words, guidance and support. I tried the packs and that really helped. I'm definitely feeling a little odd. Not bad necessarily because I'm to grateful for the medicine to feel bad. But definitely not myself. Tired and cranky lol but I have two young kids and work as a drug and alcohol counsler so the cranky tired could be from any number of things. I thought my hair was coming out a bit much but tht lasted like one day. Is it usual to hv such an array of things?
I'm filled with such thankfulness that I was able to get the medicine. It took a long time.
Canuck said
Oct 14, 2016
Hi again Pamela,
How is it going all in all, otherwise?
The itchy tatoos is kind of curious alright, but, i guess not really, as skin itchiness is a common complaint with some drugs, and or with just having HCV! I had pruritic areas for years that would come and go, mostly came, but with SVR I am pleased to say, I darn well think some of it might just be abating now!! The jury is still out on that.
The only other thing I can think of, that you could try, aside from all the other good advice the others have offered up re: drinking LOTS of water, lotions as mentioned, or possibly antihistamines if needed (if you are still having pruritis), are good ole-fashioned cooling wet poultices of sloppy porridge mash, directly on the tattoo. Tie up some little cheesecloth bags, or maybe a thin washcloth, full of fine soaked oatmeal or cooked porridge itself, and apply the cool wet satchels to the tattoo, rinse after, pat dry gently, and apply the lotion Tig recommends. Oatmeal poultices might help. Guess it is "logistics", where and how big your tattoos are. Might not be a very convenient area or method to poultice!
Linux (I believe) gave himself some oatmeal baths! (Another riba lad). I've only tried that myself once, not for riba reasons, and it was kinda messy/weird, but I think it did kinda help me.
My default for really troublesome, intense, protracted/intractable (make you stark raving mad, scratchin' your own skin off) variety of severe pruritis was a prescription of a short course of topical 2% hydrocortisone ointment applications/and at times antihistamines too, but yes, those would have to be cleared by your doc as Tig mentions.
Let us know how you are making out, when your next bloods are., etc. Hope all is going well otherwise. C.
wendyo said
Oct 13, 2016
Funny Pamela and Tig mention that about the tattoos itching as I am covered and I did not itch at all! Lucky me. I realize different TX though.........Pamela make sure you are drinking plenty of water and moisturize your skin, sunscreen as well.
Tig said
Oct 12, 2016
Hi Pamela,
The only way to subscribe to email notices is via the Full site page. Go to the bottom of this thread and you will see a "Subscribe" selection. By selecting that you should then receive notices regardless of mobile or full site use. Try that and see if it works for you.
Aside from proper hydration, you could ask your doctor if using an antihistamine like Benadryl or Zyrtec is okay. I have plenty of tatts and they itched too. The Zyrtec worked for me. I was on Ribavirin though and that stuff will make a rock itch, lol! A good itch relief lotion like Gold Bond or Eucerin may be beneficial too.
Pamelaben said
Oct 12, 2016
One really weird thing I'm noticing is that my tattoos are itching really really badly. Maybe ink interaction with the medicine? Anyone else experienced anything like that?
Cinnamon Girl said
Oct 10, 2016
Hi Pamela,
Just wanted to say hi and welcome to the group! I'm glad you found the mobile version, I know it's not the easiest way of posting here but seems like you're managing it ok. I'm usually on my laptop and it's easy to see the option to get email notifications when anyone posts a reply to the thread but I'm trying to figure it out on my mobile, without success so far but I`ll try and find out for you. Or maybe someone who posts via a mobile will chime in.
Good to hear your that your kids and your husband are in the clear, I know how much of a relief that is, we all worry about who we might have passed the infection on to when we`re first diagnosed.
About the side effects, make sure you`re drinking enough water or other liquids all through the day to keep yourself very well hydrated, it makes a big difference when you`re on such strong medications. Quite often people find that the side effects settle down after the first couple of weeks or so anyway, once your body has adjusted to deal with them.
Best of luck as you go along...
Pamelaben said
Oct 9, 2016
Not real sure how long I have had it. My biological mother had it when she had me but then years later I was a intravenous user so that's more likely the cause. Neither one of my kids nor my husband got it from me which I'm so thankful for.
Pamelaben said
Oct 9, 2016
Ohhh I got it to mobile-friendly thank goodness. So can someone tell me how to get email or text notifications when someone posts in this thread?
Pamelaben said
Oct 9, 2016
Hey guys
Sorry I take so long to respond. I'm not finding it to be very mobile-friendly lol
I'm on day 5 now and feel pretty good. Yes I have gt1 and I'm happy to share anything. Two things I do notice is I was very tired today and a weird one, itchy. Not sure what that's about. I just also want to say wow, thank you all so much for the warm welcome! It was so kind.
JimmyK said
Oct 6, 2016
Greetings,
The only thing I would like to stress, try and stay as consistent with the time you take your daily dose. Pick a time that is best for you and do everything you can to take your med at the same time throughout treatment.
This allows for the most efficient and sustained level of treatment.
I am convinced consistency = compliance.
All the best!
JimmyK
RAGDOLL said
Oct 6, 2016
Hi Pamela, Welcome to forum. I had same treatment almost 2 years ago. I basically had no side effects. It was like taking vitamins everyday. You should do great. It goes by fast. Best wishes , Chris
-- Edited by RAGDOLL on Thursday 6th of October 2016 10:15:15 AM
Canuck said
Oct 6, 2016
Hi Pamelaben,
Welcome to the forum from me too.
I am glad you have started your treatment!
It is a 12 week long treatment you have been given, right?
I am glad, if you did not have to have the ribavirin additionally, as riba is one that people do feel varying degrees of side effects from.
I am hoping you will sail right through this with not too much trouble at all. Jimmy is right, and, as many here will testify, pouring on the water really does help prevent them (and minimizes sides if you do detect any). Work hard to make sure you are trying to get a gal. of water a day into you, regardless of whether you detect sides or not.
Did you have any other questions? There are nice people here who will offer help as we can.
Please do, share a bit more, if you are comfortable doing so. I assume you are a GT1, according to your treatment drugs. Do you know if you are a GT1a or a GT1b? Do you know how long you may have had HCV, or what your F-score is (F1, F2, F3, F4, etc)?
Have a good "day 2"! C.
-- Edited by Canuck on Thursday 6th of October 2016 03:58:14 AM
JimmyK said
Oct 5, 2016
Greetings,
Water applies to all of us, yes, Helps keep things moving.
If only on V-Pack, effects will be small, But do keep in mind, Water is your friend. ;)
Jimmy
-- Edited by JimmyK on Wednesday 5th of October 2016 11:04:44 PM
Pamelaben said
Oct 5, 2016
Hi
I am not on the other one. Just the viekira pack. I think I'm seeing in the posts that the r one is the one that has side effects. Is that right? And does the lots of water thing apply to me as well?
JimmyK said
Oct 5, 2016
Hi Pam and welcome.
We need a bit more information such as are you also taking RBV?
Start a new thread in New Members. Tell us what you are comfortable with and we will do all we can to assist.
JimmyK
Pamelaben said
Oct 5, 2016
Hi I'm new here. I just started my medicine yesterday. I was wondering if anyone could tell me about timing for side effects. When I start feeling them right away?
Cinnamon Girl said
Aug 15, 2016
Cathy62 wrote:
Hi out there! Started on Harvoni on Aug 1st 2016. I see Gastro doctor for 1st time on the 18th. What question's should I ask? I'm feeling tired and insomnia. I know the good out weighs the bad it's taken me over a year to get insurance to pay for my treatment. Feeling grateful to have a chance to heal my poor liver. Haven't drank in over 10 years. Well 27 all together being a recovering alcoholic has put me on a good out come I believe. My Higher Power was getting me ready for the physical healing I believe.
Hi Cathy, welcome, I`m glad you found us!
Congrats on starting your Harvoni tx (treatment), and also on staying sober for such a long time, that will certainly have been very beneficial to your liver and to your general health and well-being.
You`ve actually landed on a thread for people who are on tx with Viekira Pak, so I`d like to direct you to this thread which is specifically for our members who are doing Harvoni tx...
You`re also very welcome to introduce yourself in our New Members Area, where you`ll be greeted by lots of other people.
Thanks, and good luck!
Cathy62 said
Aug 14, 2016
Hi out there! Started on Harvoni on Aug 1st 2016. I see Gastro doctor for 1st time on the 18th. What question's should I ask? I'm feeling tired and insomnia. I know the good out weighs the bad it's taken me over a year to get insurance to pay for my treatment. Feeling grateful to have a chance to heal my poor liver. Haven't drank in over 10 years. Well 27 all together being a recovering alcoholic has put me on a good out come I believe. My Higher Power was getting me ready for the physical healing I believe.
Linuxter said
Aug 8, 2016
Hi Patrick,
Can't stress enough to drink a LOT of water, I carried a water bottle with me everywhere while on Riba and it helps a lot. Great job on understanding what emotions are the Riba, knowing what's happening is a big part of the battle.
Do keep your eye on the prize and find ways to help you control the rage. Exercise and diet helped me a lot and just changing my surrounding (even briefly) helps (e.g. go outside or into another area).
Keep up the great work ... you'll do well.
Linux
Tig said
Aug 7, 2016
Hey Patrick,
Good job! Be sure and let us know what those test results are. I'm impressed by your ability to work so hard, but don't overdo it my friend. It's easy to do and even easier to exhaust yourself so much it takes days to recover. As Cheddy mentioned, be absolutely sure to stay adequately hydrated. That's vital!
Find time to relax, even at work. Go hide in a bathroom stall if you have to and try to clear your mind. Do some quick meditating and always stay positive. Avoid the things that tick you off and keep striving for the best in everything you do. Good luck!
Cheddy said
Aug 7, 2016
Greetings Patrick,
Good job on keeping the riba in check. I haven't kept up on treatment protocols, but am surprised that riba is still included. Must be due to the the high success rate. As far as mood, you probably have plenty of opportunity to be set off so it's good to keep the treatment in mind and the mood in check. If your liver is in good shape, it will probably benefit you in succeeding in treatment.
As for working overtime, please be sure to get the rest you need, and as everyone will tell you, drink tons of water.
I'm glad you found this forum and have had a chance to read up. I'm sure you're finding lots of experience, empathy, and thoughtful advice. Please let us know what your tests reveal as you go. We're here for you. Pretty cool, huh?
Best,
Cheddy
pbr35586 said
Aug 7, 2016
It's a long weekend for me. I went to the doctor on Friday. A little late on my 4 week checkup. Started on July 3rd. Waiting for my first results since starting treatment. I did find out my liver biopsy results and I have a score of 2.2 she says my liver can heal itself once the virus is gone. My support nurse from the drug company is a blessing no rash have had some itching and insomnia. I have been working a lot of overtime I stay exhausted a lot. I have experienced the Riba rage but being aware of it has helped me not to give into it. It's one thing at home and another at work. Being a correctional officer it could be very easy to just give into it. But I must say that this board is a blessing. There are a lot of very caring and wonderful people here, Haven't had much of a chance to post any but I have been doing some reading. Thanks
Mike77 said
May 7, 2016
Ok Jimmy I think kind did everything going this is all I know. It all happened real fast. But I am happy that I am on treatment so quick. Just nervous about all of this. I know I got it back in my teen years. Probably about 14 years ago using drugs. Clean and sober 3 1/2 years now. Just ready to put that life behind me. Thought it was all gone then this. But God is going to get me through this.
JimmyK said
May 7, 2016
Mike77 wrote:
o I never asked my doctor about Bynadryl. I told him that I take it at night to sleep and he never told me not to does anyone on here take it with viekira pak +riba
Hi Mike and welcome.
It would be very helpful if you could go to the new member area and tell us a bit more about yourself. Some questions are hard to answer in that we are llacking some basic information.
Geno Type is important when taking the V-Pack. If a 1a it is with RBV if a 1b it may be alone. Prior experience, length of Tx, viral load and the like are helpful in your sig line.
The more information the more solid the responses.
Again welcome to The Family here!
JimmyK
Tig said
May 6, 2016
Hey Mike,
You want to always discuss the addition of any medication with your doctor. That said, Benadryl and Zyrtec are often used for the itching related to treatment without difficulty. But again, you should first give the office a call and get the okay. When I was on treatment, I had to give a detailed list of medications I was taking and the doctor went over the list while I sat there. If you did the same thing and it sounds like you did, there should be authorization given. Lots of people take it for itching and sedation. If Benadryl makes you sleepy, it does affect me that way, ask about Zyrtec during the day. It worked very well for me. It can be purchased as a generic under the name Certirizine, OTC.
Here's a link I want you to review from Drugs.com. It's very comprehensive regarding the medications that interact with V Pak. I think you'll find it informative.
o I never asked my doctor about Bynadryl. I told him that I take it at night to sleep and he never told me not to does anyone on here take it with viekira pak +riba
Tig said
May 6, 2016
Hi Mike,
Welcome to the VPak train and the forum! You're on an excellent protocol and some experience the side effects you have read about and others only experience them mildly. As I'm sure you've read, the key to keeping them manageable is to drink 3-4 liters of water per day and keep up a liver healthy diet.
We have a lot of knowledgeable, caring folks here that will support you along the way. If you have any questions, be sure to ask. Our search function above will open conversations we've had based on a key word or two. There is a lot of new and old discussions that will expand your understanding of this disease and treatment. The Recent Posts link will show you the currently active sections, if you're interested in joining the conversation.
If you have any additional information you would like to share in your signature line, you can access the instructions to do that, as well as the terminology abbreviations we use here, in my signature line link (in red). That will allow us to reference your history at a glance when replying to your posts and questions. Take your time and look around, there will be others come along to welcome you as well. Good luck, you'll do great!
RAGDOLL said
May 6, 2016
Welcome to the forum Michael, You came to the right place as you start your journey to SVR. It will go by faster than you think. Most important thing for you to do is drink lots of water. I did not have the RIBA so I had no side effects. But plenty of people on the forum have experienced RIBA and can coach you thru your treatment. You will do fine. Best wishes and keep us posted on your progress. Chris
Mike77 said
May 6, 2016
Today I stared Viekira pak +riba. Trying to tell myself not to worry about the side effects. They might not even cone but by reading so many other story I thinks I'm psychin myself in to them. I am excited to get started today. Looking for the end. July 29th will be my last treatment day!
lilbit said
May 5, 2016
Yes Mike I still go for the next three years for blood work once a year. It was a part of the study and god willing I will make them all. heheh Linuxter it took me almost 6 months to totally rid myself of that jerk Riba. He is gone now and I can't blame it on him anymore when I get pissed about something. hehehe
lilbit said
May 5, 2016
Hey Tig and Mike. Glad to hear from you. So excited to hear you did Harvoni Mike. My husband has almost EOT24 undectected now with Harvoni and he didn't do Riba. I also heard from LC the other Gal doing the same study as me and she is still undected also. Guess you could say we are pretty high on Abbvie. hehehehe I hope everyone starting or on the way to starting stays the course and gets through it all. So very worth it in the end.
Hugs everyone. Just remember nothing to fear but fear itself. That's how I got through with lots of friends on here.
Tig said
May 3, 2016
Hey Lilbit,
I'm so glad you stopped by to say hi! It's great to know that things are back on track and Mike is right, you showed everyone how well this treatment worked and has maintained a viable SVR. That's always good news and we love it when our Veterans come back to encourage the rest working to achieve the same goal. These are some fabulous treatments and I really enjoy seeing the R&D continuing to make new options available. I'm waiting to witness the one day and done protocol, lol! Won't that be great! It's amazing to see how much has been accomplished in the 3 years since I started treatment. Night and day differences.
We've got a great bunch here. Of course we always have had a great membership and we're thrilled to see that continue. I do enjoy it when people from back in the days of the old SOC's and then the introductions of the new DAA's in trials check in and let us know that life is good and recovery does happen. Once we can eliminate our old friend Riba from the mix, then we'll be celebrating! That stuff is still serving an important function, so I think we'll see it for awhile. But hey, if it helps kill this beast, I'm all for it. I'll be ready to send it to it's final resting place when the time comes though. Such great memories though huh? Now that's my piece of sarcasm in return!
Stay in touch and keep smiling, it looks good on you!!
wmlj1960 said
May 3, 2016
Hi Lilbit.
Thanks for stopping by. You were one of the pioneers of this protocol and showed everyone how effective it was going to be when you went from 15,762,523 vl to undetected in 2 weeks. Nobody was used to seeing an RVR like that back then. You and I were dealing with our "friend" at the same time in 2014 and I'm glad it worked for you. I needed a better 'friend' and I found it in Harvoni and achieved SVR-12 last month. Are you still having lab work done to study long term Sx's from your trail? I 'm glad your doing well!
Thanks for dropping in, always good to see a HCV-Free face around ...
Congrats on a year or so past EOT ... Nice Job!
I too am glad to be done with my friend Riba ... he's hangin' on for the ride but I'll shake 'em loose somewhere down the line. (EOT Apr 12, 2016) I find most days now are fine but every 3-4 days I have a Riba day where rage and shortness of breath still rule ... in a few more weeks I hope it's 5-6 days before he rears his ugly head ... LOL
Wonderful that you feel so much better, just what we like to hear around here, as you well know.
Thanks for sharin' this, it's appreciated!!
Dave
lilbit said
May 3, 2016
Hey everyone. Just checking in to see how everyone is. I am feeling fantastic now and my friend Riba( I am being sarcastic) and treatment are now just memories. Sounds like a lot of you are nearing the end and the dragon is long gone. happy for everyone.
Well done, Chuck! We can all find a similarity in your poem. I can attest to many, but I'll just let people guess. No sense pointing out my flaws, lol! You know, you might have a future in this writing thingy! Thanks, your continued contributions are very appreciated. You are "Numba-One" in my book!
Syd,
We love ya Sis! Stick with us, kid. We'll help you find that light at the end of that tunnel or we'll join you and help light the way. I'm looking forward to coffee under the Pergola. I know we'll have some good stories to share!
Pamela,
There will be good days and bad, but the "first is the worst". The first part of treatment will deliver you the worst of the adjustment period. You're asking your body to join forces with some very powerful medication. They both place great strain on you, physically and emotionally. I believe if you look at personal experience among members on the new DAA's, you'll see the first 2-3 weeks take it out of you. After that it should smooth out. That's my wish for you and all people just starting. Take care of yourself right now. It's a good time to baby yourself. You're battling a Dragon and it really dislikes a well fed, hydrated and rested foe. It's up to you to deliver it all the grief possible!!
Right on with the poem Canuck! There are so many symptoms that people think is just due to ageing, but it's not. That's what i thought anyway.
It is scary Syd, but I do believe relief is around the corner!
Every now and then I have a sense of clarity which makes me believe that it's getting healing, but then I am all over the place again. I know it will get better. After having this for so long it will take some time for the body to heal. I do enjoy feeling the little things that are getting better. It gives me hope.
Ahhhh Canuck,
youve pressed the right buttons there. I walk into a room and stand there staring, trying to remember what I wanted. Can't remember the names of my favourite authors, politicians etc. not much long term memory either so I feel like a little bug crawlingbalong a piece of string with no memory of the last inch and no idea what the in store on the next inch.
Scary
syd
Canuck - you are the best. That poem was fabulous. I bet we all relate to some/part/most? of it
Pamela - you may want to also use the search button and type in before and after as there are many threads about that subject. As we have been on different treatments and are at various stages of age and health, it is not the same for us all. But you will find some some info, reassurances and know you are not alone.
Dif. regime and dif. conditions (before and after), so I can't really compare myself to you. But in an attempt to answer your question about how I feel at EOT+24 weeks? compared to before? .... some better - my profound fatigue and fog has started to improve. (Why is it always "in retrospect" with me!!), but, in retrospect, when I finally found out I had unknowingly been packing HCV for over 40 years (just got diagnosed 2015) it explained a lot, as to why I had these building long-standing unexplained symptoms (fatigue/fog, and a long list of other things) for many decades.
I spiraled a lot the last decade and exponentially for the last years/months just prior to my diagnosis in 2015, even on treatment I was spiraling! I am SO relieved now, to be able to sense I am getting a break from some of these things I have been living with for so long, and I can piece together that many things I had been experiencing prior were a result of my HCV and resultant health situ.
I am really excited about my "head" starting be be returned to me, and, loosing the huge amounts of required sleep and naps (of which I had no absolutely no say in the matter of avoiding, but would still awake bagged). I am less weak, gaining strength back again, I tackled a walk up a hill the other day that I would have never attempted or managed a year ago, I felt as happy about it as if it had been Mt. Everest! It was a hill walk I used to be able to do, and now, have improved enough, I could do it again!
Experiencing those things are REALLY nice, and I so look forward to seeing how I do over the next year, and see what and how much more improves!
I have said it a couple times before, about watching out for those side effects to these drugs, they can creep up on you, some of the most insidious and strong ones are hope and relief. May just take a bit to recognize them at first. Can you think of any ways at home or work to try to take some of the pressure off? At my worst, my partner actually stopped letting me drive, and to tell you the truth I was glad, that how discombobulated I was! (I got my keys and fob back now!)
LOL Phoenix, about your car door key fob thing, that's me all over!! Talk about forgetting - poem at bottom I wrote a while back (before I realized some of my senior faux pas might not have been early "aging" alone, but were likely being well helped along by HCV)!
I think it was Linux (smoothie creator extraordinaire) who threatened to invent a patented drink called "Fog Begone", wonder what he put in it?! hee hee.
I hope my poem makes you giggle at me Pamela.
C.
Never was no good at math
nor speelin much either.
Uncoordinated,
sports, dance not learned neither.
So you'll hardly notice,
my counting's worse.
Disguised are my deficits
when I swing an empty purse.
My memory is going,
teeth following soon I fear
I smile at ya on the street
figure later who yer were.
Armed with reader glasses
sporting two pairs on head,
while hunting for my lists,
lost treasures found instead.
Can't read the shampoo bottle
no lather in conditioner,
my hair is dirty but oh so soft
whatever's left up there.
How did I ever get so much done,
like in the past,
my lists are not working,
things are going way too fast.
Like a sucking vortex
too soon all things do pass,
Yesterday a babe
now I ignore my ass.
Rush about the room
missing paper in hissy-fit,
in humbled rage I find it
tucked under my armpit.
What a deal, what a steal
off to the Friday sale!
Pay full price, it's Saturday,
bargain days derailed.
Periodically memorize
my age, I tend to forget,
just in case someone asks,
I dread these deficits.
Warm up stiff legs,
three trips from house to car,
before the keys are found,
right where they are!
My hearing is all wonky,
we fight about mumbling ways.
Tastebuds worn and wanting,
the kitchen's stale to play.
Hide my collection of burnt rice pots,
steam veggies dry,
eat crisp pork chops, a lot,
he doesn't ask me why.
Milk in the cupboard,
cereal in the fridge,
who the hell did that I say,
damned synaptic bridge!
If I could just remember
a name when I demand,
list a title, author, date
I'd feel some command.
It has happened to most of us, don't be hard on yourself. This will be over soon and you'll notice the improvements that SVR brings. You have the support of everyone here, let us help you get to the finish line. The first 2-3 weeks seem to be an adjustment period due to the changes your body experiences. Consider what your system is dealing with, there's a battle going on, between a nasty virus and some powerful drugs. Hang in there!
Ya, hate days like that! Sorry for this one. There is a lot of pressure on us, just getting and then going through HCV treatment, never mind EVERYTHING else!
If only we could drink the tears, to at least keep up the H20, recycle them sort to speak, then the release of them would not be such a waste!! Getting cured is a time fraught with emotional upheaval. We come pre-loaded to this journey and I believe tears, frustration and feeling disappointments are natural part. Hang in there, there will be MANY good days to come. Chase your tears down with a big glass of water, comfort yourself, you will steel yourself again tomorrow.
My bro would say ... some days are diamonds and some are glass.
C.
Don't worry about it Pamela. I just started week 6 of Epclusa and tonight I tried to open the front door to my house with my automatic car lock which is on my key chain. I pushed the unlock button and aimed it to the door, then I thought what the @#$#@ am I doing? That is something that I have never done before!! The brain fog needs to go away now! Don't beat yourself up about it. It will all work out in the end.
Hi Pamela,
I'm happy to hear you are feeling better. Having digestive nasties is never fun. The first few weeks seems to be the adjustment period and for most, things smooth out. I hope that's the case for you. It certainly sounds pretty good right now!
Let us know when you get your results back. I'm sure you'll be pleased!
Hi Pamela,
You were asking .... "Is it usual to hv such an array of things?" .
Just off the cuff, I would say yes! Ragdoll recounted she did not feel too much, but I recall some others on your regime felt things. I think it might be par for the course, and, dif. for everyone. You are on a "mix" including NS3/4A's, (and I do not know this for a fact), but I am thinking maybe one can feel being on NS3/4A's more?? Question for Tig I think.
I am still hoping that what you feel will just be the first couple weeks, a short duration, that is leaving you wondering, is it me, the drugs, the internal warfare being waged, sides, or what? - just like quite a few people do (feeling something, especially in the beginning), no matter what their regime is!
I too felt so grateful to receive my treatment drugs and relieved I did not pass it on to my partner of 30+ years. How long had you been waiting for treatment? It may be an unknown, when exactly you got hepc, but when did you get diagnosed? Can you give us an idea of your prior VL, ALT's, F-score, etc? At your young age perhaps your level of fibrosis is not great.
Your work sounds as though it must be very interesting. I guess, with two little ones, and work, you must be feeling spread out a little thin. Try to do what you can to treat yourself well, especially while you are feeling "off/not yourself". PLENTY of water, good food, and getting enough rest are number one. I was especially lucky through treatment as my partner was such a good support for me.
Glad the oatmeal seemed to help a bit. You might explore some of the ideas Tig and wendy brought forth if the pruritis continues. What do you have lined up for dr. appointments and blood tests? C.
Hi again Pamela,
How is it going all in all, otherwise?
The itchy tatoos is kind of curious alright, but, i guess not really, as skin itchiness is a common complaint with some drugs, and or with just having HCV! I had pruritic areas for years that would come and go, mostly came, but with SVR I am pleased to say, I darn well think some of it might just be abating now!! The jury is still out on that.
The only other thing I can think of, that you could try, aside from all the other good advice the others have offered up re: drinking LOTS of water, lotions as mentioned, or possibly antihistamines if needed (if you are still having pruritis), are good ole-fashioned cooling wet poultices of sloppy porridge mash, directly on the tattoo. Tie up some little cheesecloth bags, or maybe a thin washcloth, full of fine soaked oatmeal or cooked porridge itself, and apply the cool wet satchels to the tattoo, rinse after, pat dry gently, and apply the lotion Tig recommends. Oatmeal poultices might help. Guess it is "logistics", where and how big your tattoos are. Might not be a very convenient area or method to poultice!
Linux (I believe) gave himself some oatmeal baths! (Another riba lad). I've only tried that myself once, not for riba reasons, and it was kinda messy/weird, but I think it did kinda help me.
My default for really troublesome, intense, protracted/intractable (make you stark raving mad, scratchin' your own skin off) variety of severe pruritis was a prescription of a short course of topical 2% hydrocortisone ointment applications/and at times antihistamines too, but yes, those would have to be cleared by your doc as Tig mentions.
Let us know how you are making out, when your next bloods are., etc. Hope all is going well otherwise.
C.
Funny Pamela and Tig mention that about the tattoos itching as I am covered and I did not itch at all! Lucky me. I realize different TX though.........Pamela make sure you are drinking plenty of water and moisturize your skin, sunscreen as well.
Hi Pamela,
The only way to subscribe to email notices is via the Full site page. Go to the bottom of this thread and you will see a "Subscribe" selection. By selecting that you should then receive notices regardless of mobile or full site use. Try that and see if it works for you.
Aside from proper hydration, you could ask your doctor if using an antihistamine like Benadryl or Zyrtec is okay. I have plenty of tatts and they itched too. The Zyrtec worked for me. I was on Ribavirin though and that stuff will make a rock itch, lol! A good itch relief lotion like Gold Bond or Eucerin may be beneficial too.
Hi Pamela,
Just wanted to say hi and welcome to the group! I'm glad you found the mobile version, I know it's not the easiest way of posting here but seems like you're managing it ok. I'm usually on my laptop and it's easy to see the option to get email notifications when anyone posts a reply to the thread but I'm trying to figure it out on my mobile, without success so far but I`ll try and find out for you. Or maybe someone who posts via a mobile will chime in.
Good to hear your that your kids and your husband are in the clear, I know how much of a relief that is, we all worry about who we might have passed the infection on to when we`re first diagnosed.
About the side effects, make sure you`re drinking enough water or other liquids all through the day to keep yourself very well hydrated, it makes a big difference when you`re on such strong medications. Quite often people find that the side effects settle down after the first couple of weeks or so anyway, once your body has adjusted to deal with them.
Best of luck as you go along...
Sorry I take so long to respond. I'm not finding it to be very mobile-friendly lol
I'm on day 5 now and feel pretty good. Yes I have gt1 and I'm happy to share anything. Two things I do notice is I was very tired today and a weird one, itchy. Not sure what that's about. I just also want to say wow, thank you all so much for the warm welcome! It was so kind.
Greetings,
The only thing I would like to stress, try and stay as consistent with the time you take your daily dose. Pick a time that is best for you and do everything you can to take your med at the same time throughout treatment.
This allows for the most efficient and sustained level of treatment.
I am convinced consistency = compliance.
All the best!
JimmyK
Hi Pamela, Welcome to forum. I had same treatment almost 2 years ago. I basically had no side effects. It was like taking vitamins everyday. You should do great. It goes by fast. Best wishes , Chris
-- Edited by RAGDOLL on Thursday 6th of October 2016 10:15:15 AM
Hi Pamelaben,
Welcome to the forum from me too.
I am glad you have started your treatment!
It is a 12 week long treatment you have been given, right?
I am glad, if you did not have to have the ribavirin additionally, as riba is one that people do feel varying degrees of side effects from.
I am hoping you will sail right through this with not too much trouble at all. Jimmy is right, and, as many here will testify, pouring on the water really does help prevent them (and minimizes sides if you do detect any). Work hard to make sure you are trying to get a gal. of water a day into you, regardless of whether you detect sides or not.
Did you have any other questions? There are nice people here who will offer help as we can.
Please do, share a bit more, if you are comfortable doing so. I assume you are a GT1, according to your treatment drugs. Do you know if you are a GT1a or a GT1b? Do you know how long you may have had HCV, or what your F-score is (F1, F2, F3, F4, etc)?
Have a good "day 2"!
C.
-- Edited by Canuck on Thursday 6th of October 2016 03:58:14 AM
Greetings,
Water applies to all of us, yes, Helps keep things moving.
If only on V-Pack, effects will be small, But do keep in mind, Water is your friend. ;)
Jimmy
-- Edited by JimmyK on Wednesday 5th of October 2016 11:04:44 PM
Hi Pam and welcome.
We need a bit more information such as are you also taking RBV?
Start a new thread in New Members. Tell us what you are comfortable with and we will do all we can to assist.
JimmyK
Hi Cathy, welcome, I`m glad you found us!
Congrats on starting your Harvoni tx (treatment), and also on staying sober for such a long time, that will certainly have been very beneficial to your liver and to your general health and well-being.
You`ve actually landed on a thread for people who are on tx with Viekira Pak, so I`d like to direct you to this thread which is specifically for our members who are doing Harvoni tx...
Harvoni Treatment Train
You`re also very welcome to introduce yourself in our New Members Area, where you`ll be greeted by lots of other people.
Thanks, and good luck!
Hi out there! Started on Harvoni on Aug 1st 2016. I see Gastro doctor for 1st time on the 18th. What question's should I ask? I'm feeling tired and insomnia. I know the good out weighs the bad it's taken me over a year to get insurance to pay for my treatment. Feeling grateful to have a chance to heal my poor liver. Haven't drank in over 10 years. Well 27 all together being a recovering alcoholic has put me on a good out come I believe. My Higher Power was getting me ready for the physical healing I believe.
Hi Patrick,
Can't stress enough to drink a LOT of water, I carried a water bottle with me everywhere while on Riba and it helps a lot. Great job on understanding what emotions are the Riba, knowing what's happening is a big part of the battle.
Do keep your eye on the prize and find ways to help you control the rage. Exercise and diet helped me a lot and just changing my surrounding (even briefly) helps (e.g. go outside or into another area).
Keep up the great work ... you'll do well.
Linux
Hey Patrick,
Good job! Be sure and let us know what those test results are. I'm impressed by your ability to work so hard, but don't overdo it my friend. It's easy to do and even easier to exhaust yourself so much it takes days to recover. As Cheddy mentioned, be absolutely sure to stay adequately hydrated. That's vital!
Find time to relax, even at work. Go hide in a bathroom stall if you have to and try to clear your mind. Do some quick meditating and always stay positive. Avoid the things that tick you off and keep striving for the best in everything you do. Good luck!
Greetings Patrick,
Good job on keeping the riba in check. I haven't kept up on treatment protocols, but am surprised that riba is still included. Must be due to the the high success rate. As far as mood, you probably have plenty of opportunity to be set off so it's good to keep the treatment in mind and the mood in check. If your liver is in good shape, it will probably benefit you in succeeding in treatment.
As for working overtime, please be sure to get the rest you need, and as everyone will tell you, drink tons of water.
I'm glad you found this forum and have had a chance to read up. I'm sure you're finding lots of experience, empathy, and thoughtful advice. Please let us know what your tests reveal as you go. We're here for you. Pretty cool, huh?
Best,
Cheddy
Ok Jimmy I think kind did everything going this is all I know. It all happened real fast. But I am happy that I am on treatment so quick. Just nervous about all of this. I know I got it back in my teen years. Probably about 14 years ago using drugs. Clean and sober 3 1/2 years now. Just ready to put that life behind me. Thought it was all gone then this. But God is going to get me through this.
Hi Mike and welcome.
It would be very helpful if you could go to the new member area and tell us a bit more about yourself. Some questions are hard to answer in that we are llacking some basic information.
Geno Type is important when taking the V-Pack. If a 1a it is with RBV if a 1b it may be alone. Prior experience, length of Tx, viral load and the like are helpful in your sig line.
The more information the more solid the responses.
Again welcome to The Family here!
JimmyK
Hey Mike,
You want to always discuss the addition of any medication with your doctor. That said, Benadryl and Zyrtec are often used for the itching related to treatment without difficulty. But again, you should first give the office a call and get the okay. When I was on treatment, I had to give a detailed list of medications I was taking and the doctor went over the list while I sat there. If you did the same thing and it sounds like you did, there should be authorization given. Lots of people take it for itching and sedation. If Benadryl makes you sleepy, it does affect me that way, ask about Zyrtec during the day. It worked very well for me. It can be purchased as a generic under the name Certirizine, OTC.
Here's a link I want you to review from Drugs.com. It's very comprehensive regarding the medications that interact with V Pak. I think you'll find it informative.
Viekira Pak
Hi Mike,
Welcome to the VPak train and the forum! You're on an excellent protocol and some experience the side effects you have read about and others only experience them mildly. As I'm sure you've read, the key to keeping them manageable is to drink 3-4 liters of water per day and keep up a liver healthy diet.
We have a lot of knowledgeable, caring folks here that will support you along the way. If you have any questions, be sure to ask. Our search function above will open conversations we've had based on a key word or two. There is a lot of new and old discussions that will expand your understanding of this disease and treatment. The Recent Posts link will show you the currently active sections, if you're interested in joining the conversation.
If you have any additional information you would like to share in your signature line, you can access the instructions to do that, as well as the terminology abbreviations we use here, in my signature line link (in red). That will allow us to reference your history at a glance when replying to your posts and questions. Take your time and look around, there will be others come along to welcome you as well. Good luck, you'll do great!
Welcome to the forum Michael, You came to the right place as you start your journey to SVR. It will go by faster than you think. Most important thing for you to do is drink lots of water. I did not have the RIBA so I had no side effects. But plenty of people on the forum have experienced RIBA and can coach you thru your treatment. You will do fine. Best wishes and keep us posted on your progress. Chris
Hugs everyone. Just remember nothing to fear but fear itself. That's how I got through with lots of friends on here.
Hey Lilbit,
I'm so glad you stopped by to say hi! It's great to know that things are back on track and Mike is right, you showed everyone how well this treatment worked and has maintained a viable SVR. That's always good news and we love it when our Veterans come back to encourage the rest working to achieve the same goal. These are some fabulous treatments and I really enjoy seeing the R&D continuing to make new options available. I'm waiting to witness the one day and done protocol, lol! Won't that be great! It's amazing to see how much has been accomplished in the 3 years since I started treatment. Night and day differences.
We've got a great bunch here. Of course we always have had a great membership and we're thrilled to see that continue. I do enjoy it when people from back in the days of the old SOC's and then the introductions of the new DAA's in trials check in and let us know that life is good and recovery does happen. Once we can eliminate our old friend Riba from the mix, then we'll be celebrating! That stuff is still serving an important function, so I think we'll see it for awhile. But hey, if it helps kill this beast, I'm all for it. I'll be ready to send it to it's final resting place when the time comes though. Such great memories though huh? Now that's my piece of sarcasm in return!
Stay in touch and keep smiling, it looks good on you!!
Hi Lilbit.
Thanks for stopping by. You were one of the pioneers of this protocol and showed everyone how effective it was going to be when you went from 15,762,523 vl to undetected in 2 weeks. Nobody was used to seeing an RVR like that back then. You and I were dealing with our "friend" at the same time in 2014 and I'm glad it worked for you. I needed a better 'friend' and I found it in Harvoni and achieved SVR-12 last month. Are you still having lab work done to study long term Sx's from your trail? I 'm glad your doing well!
Hi Lilbit,
Thanks for dropping in, always good to see a HCV-Free face around ...
Congrats on a year or so past EOT ... Nice Job!
I too am glad to be done with my friend Riba ... he's hangin' on for the ride but I'll shake 'em loose somewhere down the line. (EOT Apr 12, 2016) I find most days now are fine but every 3-4 days I have a Riba day where rage and shortness of breath still rule ... in a few more weeks I hope it's 5-6 days before he rears his ugly head ... LOL
Wonderful that you feel so much better, just what we like to hear around here, as you well know.
Thanks for sharin' this, it's appreciated!!
Dave