Hep C Discussion Forum

Hi Sunrise,

That's wonderful news! You did it!! Another Dragon goes down in flames, yay! The sides from Tx will diminish, but will take some time as you're aware. I look upon each ache or pain as the last reminder of this disease and it gives me pause to remember that SVR was the prize. That makes you the winner, congratulations! 

Tig   

Hi fellow warriors,

  Update on bloodwork, 12week post tx. Sovaldi Olysio, UD!Next labs in 11weeks. Doc said at this point he considers me cured! I am very grateful. I am having a few issues which I think is from tx. , but guess I will just take one day at a time.Brief run down on my history: Geno 1a since 1991, vl 5million, am now 58,was tx. naive, did 12weeks S/O . SVR BABY!! Praise God...

Hi Sunrise,

I just talked yesterday with my rheumatologist and she agrees with Tig. She said to take two Naproxen 500 mg a day and that for only a few months, it is not going to hurt the liver. (She knows I have cirrhosis.) They definitely work for me. Also, she has ordered new xrays to see if there is added damage since treatment. 

I totally understand about the pain. Oh yeah, she also gave me a script for Voltaren Gel - you rub it in at the spot of the pain, like an ankle, and it helps a lot. It doesn't have an odor so you can easily use it at work. By using it at the source, your liver does not have so much to process because you are using less. My Gastro will not help me with any of this kind of stuff and just says talk to your pcp. 

You will be undetected. 

That's an excellent suggestion Rubye! If you have an insurance plan that allows you to make an appointment without the need of a referral, you can just seek an available specialist without going through a difficult GP first. That's worth checking out if necessary.

Sunrise, it's always best to be diplomatic. But as long as you have a valid question or concern, you should never be construed as a troublemaker. Remember, you are always your own best advocate! Keep up the good fight, you matter!

Tig

That is so great to hear you are feeling improvement everyday Tig, I am praying for relief as well. I think I will do just that on my next visit to my doc. Of course I must be diplomatic, as I do not want to be known as a trouble maker ,but I will get my point across. Thank you for your responses, they are greatly appreciated. Sunrise

Thank you Tig, and Rubye. 

   I appreciate the feedback. Glad to hear this will subside. I figure with these new and powerful drugs, it has to affect us in strange ways. I tried the muscle relaxer the doctor had prescribed before I started tx. It seems to be helping a bit. I walk for 20minutes with my dog every morning, so hopefully time will diminish this joint issue and pain. I am a bit disappointed with my doc, as he is adamant about this problem NOT being from tx. Standing on my feet for work seems to aggrevate the pain. Hope this note finds you feeling better and better

     Have a great weekend Sunrise

Hey there Sunrise. Good to see you. April 5 for me. I am basically recovered from the side effects and each day is a new and better day for me. I wish the same for you.

I'm doing much better also - 5 weeks now since EOT. I actually think my joint pain now is less than before I started treatment. Before treatment, I had a hard time walking around the block and now I can walk 8-12 blocks with no pain. Most days. I have high hopes my peripheral neuropathy will get better also. Before treatment I had a lot of shooting pains and I no longer have those.

Thanks for the fact sheet CG. Maybe the Hep C is why I never had menopause symptoms/sides. Who knows really. However, I do still have the hot flashes each day when I go out and from the cool outdoors to the warm indoors - never had this before treatment. Hopefully, they will fade away with time. I do believe my arthritic stuff and neuropathy is from the HCV though. No one else in my family has these problems.

You know, I can't believe I'm saying "5 weeks now since EOT" now. There were some days during treatment when I thought it would never end or that I wouldn't make it. So, for anyone else that may have problems with the Sovaldi based treatments, hang in there. It does get much better.

Hey rltan,

I'm not a Harvoni vet, but have been following the members that have been on the Sovaldi backbone protocols. Seems there is a similar complaint of arthritic/joint pain amongst people during and following treatment. There is mention of it in the Gilead literature as well. For the time being, make sure you notify your doctor and get these issues documented. If you aren't recommended something by your doctor for the pain and inflammation, I would start with something like Advil provided your doctor is okay with it. I'm taking large prescription doses of it because I developed similar symptoms following my treatment. It does help reduce the discomfort. I hope and believe that in time, as these drugs leave the system and your body has time to heal, you'll begin to notice a lessening of these issues. Good luck!

Tig

Rubye wrote:

---

I've heard people mention that a difficult treatment could be related to hormonal issues. Or, maybe it is just that men have more muscle mass than women.

One thing I've noticed that indicates a change in my hormones is that I have developed a dark area above my lip like a mustache. I never had this before treatment. Also, I now have hot flashes and never had these before either - even during menopause. If I go from the cool outdoors into a warm store, then my whole head starts sweating profusely to the point that my hair gets all wet. I sure hope it goes away cause it is a real drag.

---

 Interesting that you`ve mentioned hormonal issues, Rubye.  I started getting hot flashes towards the end of my tx and they carried on for a few weeks afterwards, and I`d finished going through the menopause many years beforehand.  And that was with Peg/Riba treatment.  I do remember other women mentioning the same thing in the past too, as well as irregularities in their monthly cycle.  I sympathise, it`s not at all pleasant.

I haven`t been able to find much written about this but I did come across this fact sheet from the HCV Advocate website, on women and Hep C treatment, which includes a section on this subject...

http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Wm_treatment.pdf

Hang in there, I`m sure they won`t last too much longer!

That's why I find the benzos so insidious -- the more I'd take them, the more they started to backfire as depression and so I learned to take them for only 2-3 days at most.

In the early 80's, I remember taking 100 of the 5mg Valiums from the time I got off work one Friday at 5:00 pm until Sunday night at 10:00 pm. I was taking 20 at a time. I actually showed up for work the next day and my boss sent me home he said, "I looked like I was in slow motion". The next day, however, I was fine. I would not dare try that again but since the subject came up I guess I've always had a high tolerance for Valiums but I'm not a fool and I know that 25 years of alcohol abuse and having the hep c virus for probably 35 or more years have taken its toll on my liver and I'm sure if I tried that stunt that I did in my 20's it would probably take me out.

5 Valiums back then would barely have buzzed me, but now 5 of them buzz me out pretty good, but like I said I try to avoid them as much as possible, but it's nice to have a crutch that works.

Strange that I also have had since stopping treatment on Harvoni the chest issues.  I went to the ER on doctors advice a few days ago and had it checked out.  They put me on Zantac for it but that hasn't really helped.  Its a bad gnawing and only food seems to stop it.  So I carry pretzels and crackers with me and my water.  I just nibble here and there as needed to get through work.  I have liver area pains all the time now as well.  I have to say that Xanax years ago when I tried it caused me terrible depression.  So being the same drug class as Valium be careful with that.  In the past I only used Valium once in a blue moon if my back went out.  I took one 5mg and it would do the job.  I couldn't imagine taking four or five that amount!  I might not wake up.  I have a super low tolerance for drugs.  Kind of bummed to hear your still having issues that far out but I will hope I improve.  I feel like the honeymoon is over now LOL.  Had such high hopes for a better quality of life.  I didn't want to just trade one issue for another one. 

Ok, I have to chime in. I still feel rather crappy most of the time and it's been EOT+16 weeks for me. However, I have had more good days in the last 16 weeks than I did in the last 16 years. When I'm really feeling bad I take 25mg of Valium. That's 5 of the 5 mg and every bit of the stress instantly goes away and I sleep like a baby. I don't do this every day, in fact, it's been over a month since I've taken any but it is sure nice to know there is something that helps. I'm sure others will probably chew my butt for saying this but Valiums are much, much easier on the liver than alcohol. When I drink too much alcohol, I get mean and crazy, but if I take too many Valiums, I get super mellow and sleepy. 

It's the better of the two and I've watched my liver enzymes closely and while on Valium or Xanax or Ativan my liver functions were always well within the normal range. Think how much worse that horrible virus was on the liver than a couple of Valiums here and there. The only downside for me is that my job requires deep thinking and Valiums prevent me from concentrating the way I need to, so that's why I try to take as few of them as possible.

One other note: recently I've been really depressed and so I started hanging around in the sun for about 30 minutes each day and it has helped me tremendously, so if that's an issue for anyone--try that.

I still have an ache in my chest area that started during treatment and my heart still flutters, but not nearly as bad as it did during treatment which caused me to have stop after only 6 weeks of therapy. Ironically, compared to most members, my bone and joint issues are getting better and I'm not having any muscle issues either after working out with dumbbells. 

4L,

We all need a little comfort. It is important that the comfort gives, rather than takes from us. Each of us must find this balance for ourselves. If the valium helps you get through this, and does not exact a price, then I don't see the harm. 

I do a meditation I found on iTunes called "The Cocoon of Light". It helps me relax, release stress/anxiety feelings, and create a sense of comfort. It works for me. 

I have a fear of flying disorder, and took Valium during TX so I could fly home. It did me no harm, and thanks to good advice from forum members, I was able to make a rough double flight without a panic attack. The meditation couldn't have done that for me.

It is good of you to alert others to potential post TX issues. I know when I was researching TX options I really appreciated folks who kindly shared their experience and found it a helpful way to learn and make decisions about my own journey. 

To that end, I'd like to add this. I had (did have?)  hep C for 32 years. Hopefully, in May, I will learn that it is gone for good. In the mean time, I watch my body for clues. It has been sharing some happy information. While my liver was miraculously pretty healthy, I've endured four rounds of spinal meningitis. One bacterial that very nearly killed me. Happily, nearly dead is not the same as all the way dead. (Princess Bride fans), Hashimoto's, diabetes and some bizarre metabolic issues no one could figure out, frustrating and painful intestinal issues, Raynaud's, Sjogren's and a host of weird, intractable infections and rashes. Unrelenting, and so discomforting H. Pylori, and probably some stuff I've thankfully forgotten.

During the past few weeks I've watched my eyes, which for the last few years have looked bloody and gross from Sjogren's, get clearer each day. There is a film of dust on my Visine bottle and another on the Biotiene. My eyes are very nearly white again. I feel shocked when I look in the mirror. And then I feel so happy. The weird rash I've had for a year,  which has failed to respond to a menagerie of creams and salves, healed spontaneously and completely last week! The infection in my left ear that has managed to resurface after each of 4 rounds of antibiotics, gone since early December with no assistance beyond hep c TX. The weight I gained during 12 weeks of eating little else but mint milano cookies, crumb cake and matzobrei (helped the TX nausea) is falling off my body with no more than a normal healthy diet and exercise routine. When I lost weight before, I had to live on 800 calories and walk 6 miles a day and feel grateful if I lost 2 lbs in a month. My glucose lab tests were amazingly normal towards the end of TX - even though I would eat cookies for breakfast and go for blood tests an hour later!!!

I am healing. It is clear. And I am grateful, even if it is not permanent. I do feel some transient joint pain, but if it means hep c is in the rearview mirror, for me, fair trade.

Our bodies are wonderfully resilient. Once relieved of active disease, time, comfort, rest and nourishment can heal much, if not all. If it goes beyond a few weeks, you may want to reach out for help from a naturopath or physician.

Being Sassy - completely agree with you RE: talking to doc. No level of professionalism relieves us of our humanity. Docs have their own slant, often developed as a result of professional info which is in part, influenced by drug companies. We have to be strong, and advocate for ourselves when our bodies are not reacting as the professional literature they read describes. When we do, we act as educators, and our influence can help our docs learn and hopefully help others to heal.

Health to all,

Rudi

I had no choice but to work during my treatment.  Some might recall that I never expected to get my Harvoni approved in six days after my first visit with the Liver/GI doctor.  He told me figure a few months of fighting.  I am a retail merchandiser and most of my work load is the fourth quarter of the year and I started treatment the first week of Dec.  I freaked out.  Asking them can I wait a couple weeks to start.  They said no must be today.  So I just did it.  I dragged my fatigued spaced out arse through work.  And I climb ladders and dress mannequins etc.  I worked 7 days a week but only about 4-5 hours a day.  Then had to hike in the woods 2 miles a day because my irish setter (love of my life) has to get his exercise time.  I remind myself that I am strong during times like this.  If I just knew a time frame LOL.  I am very scheduled and would like to know.... post treatment week 1 will feel like this.  week 2 like this.  And it's the unknown that is hard.  I don't think we will know for sometime if Harvoni won't have some lasting effects on us.  I had to treat regardless.  The alternative isn't an option.  I love life to much!

For whoever was asking about Viekira Pak I completed it a little over 8 weeks ago.  The first couple weeks after treatment I felt worse than I did on it.  But all that has pretty much gone away.  The only problem I have now is insomnia and a conversation in my head that won't shut up when I try to sleep.  Do not think it has anything to do with treatment.  Just did not have it until after treatment.  At first I thought it might be clearing the Riba but since it never happened while I was on it I have pretty much ruled it out.  Other than that feeling better than I have in a long time.

Hi 4L, so sorry you`re still feeling bad and having these difficulties, I really feel for you. 

Everyone is different and we all respond to medications in different ways and I`m sure you`ll start feeling more like yourself again soon, just give yourself a bit more time.  I think you`re very brave going to work feeling like you do and you should be proud of yourself for doing that, it must take a lot of strength and determination.

I do remember my emotions were all over the place during my treatment and for a while afterwards too but gradually I began noticing that I was recovering and getting back to feeling like myself.  It`s very upsetting to feel like that, I know.

As for the valium, yes it is very addictive if taken over time, but my feeling is that if a short course on a low dose will help get you through this bad patch and make you feel a lot calmer then it`s probably worth doing.  There are various anti-depressants which would also help smooth out your emotions, and they are often prescribed for anxiety and not only for depression. 

I`m glad your son is being supportive, that`s lovely to hear.

You`re obviously a strong woman and you`ll get through this, I`m sure! 

I was on a different protocol than Harvoni but I felt horrible for the first few weeks after tx. I was fatigued, insomnia was bad and I had the worst headache I ever had. I have never been one to get headaches but this one had me in a dark room with a wet cloth on my head and Advil at my side. But, after about six weeks I started feeling better. Still have a lower energy than I did prior to tx, it takes me longer to get moving but I am much better off than with the disease. Also, we do slow down a bit after 50 or so, it could just be normal signs of aging. I notice that if I force myself to be active I feel better. Anyway, what I am trying to say, in my long winded way, is that we do start feeling better after a while and that not everything is connected to the Hep or tx. But consult your doctor if you are concerned. Insist that your doctor talk with you. You are the patient and have the right to discuss whatever is going on. Doctors tend to forget, not all but some, that we are the experts in how we feel and we know when something just doesn't feel right. My doctor told me one day that he wanted me to help make tx decisions. I was on a bit of a riba rage and reminded him that the decisions were mine to make since I was the patient and that his job was to advise me, mine was to make the decisions. Sometimes ya got to be tough and put your foot down.

FL, I don't know how you work and do tx at the same time. I sure could not have but then I guess most people work. Anyway, I think Valium is a very bad drug in that it is so insidious in that you don't feel "high" but do feel relaxed and the dependence sneaks up on you. However, a lot of people take it or Xanax and seem to do okay. I'm sorry that you are needing it, but as long as you are careful it should be alright. Feel better.

It's now a little over 4 weeks since EOT for me and I can't tell you how much better I am feeling. I'm still low energy and have the arthritis pain but that's to be expected since I had it before tx.

I don't think the arthritic pain is limited to Sovaldi/Olysio because I keep reading about Harvoni people having the same sort of pain.

I wonder why there's no one on this forum, or the others for that matter, talking about the Viekira Pak. I guess most people are fighting for Harvoni. I would.

Hi 4L,

I have a bit of advice on the foot issue. I had a similar problem & learned that my tight calf muscles were pulling all the muscles/tendons/ligaments in my foot & caused the pain the ball of the foot. By stretching the calf muscles 10 minutes a day & wearing sneakers, the pain resolved.  Don't wear high heels or tight shoes until this pain goes away or it may become permanent.

congrats on completing treatment, I hope you are feeling better soon!

I am five days post treatment with Harvoni.   I am having a very hard time and have a different thread about it.  I was wondering if the common thread is the Sovaldi?  I started having problems with my feet a few weeks before treatment ended.  I have pain in the ball of my foot shooting some nerve type thing into the toes.  It is worse in one foot but I have it in both now.  My GI doctor won't discuss any side effects as being from treatment unless it's headache or fatigue.  The first few days this week I was having horrible joint and muscle pain that has settled down.  But I have depression and anxiety that at times make me think I am losing it.  I had an EKG a couple days ago at the ER because I was having really bad gnawing in my chest.  I am having the upper quadrant liver area pains also.  I felt better on treatment!!  I feel like something is wrong with me now that it stopped.  My head is a saturated mess and I told my boys more than once today how much I love them because seriously I think they will put me in a straight jacket any day now.  What the hell happened to me?  I had to treat of course but at what cost?  And why am I feeling like the only Harvoni lab rat to suffer this? I barely made it through work today. 

Hi Duane,

I have Raynaud's from Hep C - hoping it self heals post tx, but a recent visit to the freezer section of my local grocery says not yet.

I used to have terrible burning and tingling in my fingers and toes when I lived near you. It was so bad I would rush into the tub and run lukewarm water over my toes, gradually warming them until the feeling came back - sometimes it would happen in the house with my socks on! It was bad enough that sometimes I cried. You can try the lukewarm water method and see if it helps. I hope so. Take care, Rudi

I am 8 months post tx with the S/O combo and i am an arthritic mess, not to mention have developed diabetes as well, of course I can't blame the tx for this either as there is no way to know, and with the new med replacing this off label tx there will likely never be enough study or evidence to show cause and effect....my guess is it is the Olysio and not sovaldi or the combination, because I'm not reading the same from harvoni tx....yet anyway.

Either way I'm  glad i got the chance to rid myself of the C virus, and all of my problems could be directly related to the poor condition of my liver etc...

One thing that is really bothering me is this numbness tingling loss of sensation across my toes and the end of my feet with occasional sharp needle pain, and being cold all the time,my Dr. says it is because cirrhotics with high portal hypertension ...their blood vessels don't contract well thus the poor circulation and cold feet.

Duane