Thank you Tig, and Rubye,

  Yes it is awsome. Of course I am a worry wart , and will not feel sure until 24week post tx test. I do however feel like I cleared it. Best wishes on the test Rubye, I know you will be UD also . Yes these side effects are plaguing me, but I did get a script for mobic and valtaren so hopefully that will help my ankles.. My doctor seems alittle perplexed . I told him how others have had similiar side effects  We shall see blessi.gs Sunrise.

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   

I knew it!!! Congrats Sunrise. 

I was going to go test today but got side tracked. Hopefully, I'll make it in Thursday, but it's kind of like I already know I'm clear. I'm so glad to hear this for you. 

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 Rubye, and fellow warriors,

Thats a good idea, See the doctor next week and will ask about the voltaren. Icing it seems to help quite a bit as well. Got VL done today. Thats all they wanted to test this time. I hope that is a good sign, as my doc seems to think I cleared. I am praying.

How are you doing Rubye? I hope better each day. Thanks so much for your insight, and kindness, as well as the folks here on the forum. Your labs be here in no time. This last eight.weeks, except for joint pain and other sides, time went pretty fast. Good day all, and goodnight..Sunrise

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. 

Hi everyone,

    Yes, that sounds like an idea. Rubye, my bloodwork is Monday. I'm alittle nervous. Hope I am still UD. I will see my GE on the 24th, so I will discuss these issues then. In the mean time, I will do what is best. Although for example, I worked this morning. Got slammed, and by noon I could hardly walk. I am icing ankle now and took aspirin. Really it is annoying, but one must deal with it. Will let you know probably next weeks on results. Thank you both for your advice and care, Sunrise

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

Hi Sunrise

You may want to see a rheumatologist - mine is great and understands treatment drugs can cause problems. Did you get your 12 week labs yet?

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

Hi Sunrise,

The joint pain is a real problem for many of us, but I'm seeing more and more improvement in mine. I've improved since my last reply to you. The Naproxen really helped and now I've decreased it to as needed. It takes time and you need to treat yourself right in the meantime. You can tell your doctor to keep thinking that way, but you know better! We all know better. This joint pain is real and many of us experienced increased problems with it during and after treatment! I didn't think it would ever improve but it has and I hope will for you soon. Keep up your walking program. It's good for the bones and your dog loves you for it! Good luck!

Tig

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

Rubye and Sunrise,

I realize we didn't use the same protocol but we all seem to share the same joint pain. It took me a full year after my EOT. But during that time my doctors started me on Naproxen in larger than the OTC brands and it has helped tremendously. Now that it's resolving some, I have cut the dose in half and still feel good. It can be hard on your liver at times, so my docs have run the appropriate test to monitor that. So far all is fine. It has helped me a lot and if that doesn't work, there are other medications available that can help you through this period like Meloxicam (Mobic). Ask your doctor for advice! Good luck...

Tig

PS: Sunrise, I want to welcome you to the forum! You have found a wonderful group of people that will do their best to help you through these issues. In return we get the opportunity to learn from you as well. I hope you stay and share your experiences with treatment, while helping others. I'm glad you're here!

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.

I should update how it's going since I sounded so bleak there for the first 5 days after treatment ended.  I have had two much better days!  Worked without issues and am turning a corner.  I woke on Monday feeling less anxious and more like myself.  I am still having liver area pain quite often but my stomach issues have settled down nicely with my Zantac.  Insomnia has returned but I had that before treatment.  Sure will miss that wonderful restful sleep Harvoni provided!  I am off to do my 2 mile hike in the woods with my dog and have done that for two days now.  Yes I am very tired but that walk is my valium.  It cures whatever ails me.  I have more muscle pains than joint pain.  But again had that prior to treatment as well.  And I just take one advil and it helps me out enough to get by.  Not good for my stomach or liver. 

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

Could you update how you doing, I am very interested in seeing if my back pain and other pains are the same as you, I also did 8 weeks and started about when you did.i am male 45 years old geno 1a und.as of now. But more pain then usual. 

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!

I completely agree about the need to be very cautious with Valium, even at low doses.  In the late `70`s I was prescribed them while I was going through a difficult divorce and because they made me feel so much better I stayed on them for longer than I should have done, and my GP was more than willing to keep prescribing them to me.  I was only taking 5 mg most days but when I was coming off them after about 6 months I had dreadful withdrawal symptoms of heightened anxiety and panic attacks which was a nightmare. 

I do understand where you`re coming from, Skewed, about needing an occasional crutch, but just be careful with them.  I`m sure you will anyway and hopefully you`ll feel less need for them, even occasionally, as you recover from tx more.

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.

Hi All,

When I was first prescribed Ambien (I'll get to Valium in a moment) I immediately did what I always do; researched the hell out of it. And this is what I found: The people who were addicted to Ambien and tried to get off of it were very miserable people. They suffered from horrible insomnia and terrifying night terrors. I found several forums like this one, full of these miserable people. Despite my doctor's well meaning assurances that Ambien wasn't so bad I vowed never to take it for more than a week, and at greatly reduced dosages. That strategy has worked remarkably well. I only use it when I travel to get over jet lag, I hardly take any at all (2.5-5mg), I only use it for about six days,  I taper off slowly. I go months and months without taking it.

I would recommend researching Valium withdrawal before taking it (after researching its effect on the liver). It looks like the benzodiazapine people are even more miserable than the Ambien people!

Here are two links to get you started.

The first: Symptoms of benzo withdrawal:

http://www.bcnc.org.uk/symptoms.html

The second: How long does it take to get addicted?:

http://www.benzo.org.uk/FAQ1.1.htm#3

For me they are very tempting. Two of my liver biopsies were done with IV Valium. Both times I immediately felt as if suddenly everything in my life was OK. I was relaxed and joking...I had suddenly become the person I wanted to be. That was enough for me...if it seems to good to be true.........

I won't touch 'em.

BTW...I'll mention LDN (low dose naltrexone) again. It helps with me with the post Sovaldi and Olysio aches and pains. I take 2mg in the mornings. It is hard to find a doc to prescribe it though. 

Here's a link about LDN again:

http://www.ldnscience.org

Happy curing and cure recovery to all!

Peter

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.

Hi skewed,

I second what Tig has said. 25 mg is a high dose of Valium. It's more than 'a couple of valiums here and there...'.

Valium causes depression so be very careful. I played with it after I gave up the booze, but never had more than 10 mg. If you need 25 mg to have an effect, you've developed tolerance and should give them away.

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. 

Hey Skewed,

It's good to hear from you! Sounds like you've had the highs and lows many of us have experienced after treatment. I'm glad that you're having more good days than bad and believe with time, the lows will get fewer and fewer. It has  been over a year EOT for me and I'm still experiencing some issues. Different protocol but they all take time to recede. For some they can nag you for extended periods. If that's the case, I hope you're talking to your doctor about any difficulties.

All I will say about the Valium is to be very cautious with it. Benzodiazepines aren't to be taken lightly, they can cause a lot of problems. A dose of 25 mg at once is a huge dose at one time, especially for someone that doesn't take them routinely. A maximum dose over 24 hours is 40mg. 25 at once should be avoided. (You said someone would chew your butt, so consider it chewed...)

http://www.rxlist.com/valium-drug.htm

Hang in there old friend and stay in touch. If you need to talk, you can get ahold of me anytime. Be well...

Tig

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. 

Rudi you have been through it all.  I am grateful that having hep c for 40 years didn't cause more damage.  It is only in the past maybe 10 years looking back that I had issues related to it and didn't know I had it.  I thought everything was just old age.  I will be so grateful for anything remotely like the life I had returns.  I can deal with fatigue since I tend to climb into my robe right after dinner and chill out.  I enjoy the simple pleasures of life and am grateful for each day.  My heart goes out to you for your kindness to me and for all you have been though.  As far as the Valium goes, I haven't taken it yet.  Not sure if I will because I don't want to add to the foggy feeling I have the first half of the day already!  But knowing it's there if I need to use it is enough for now. 

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

Matt you mentioned women having more problems than men.  I thought it was interesting that we all take the same dose.  Regardless of our weight.  So it makes sense some women would get hit harder.  I am 5'2 and 133 lbs.  Imagine a man double my weight and a foot taller on the same dose!  I had no hormonal changes during or after treatment and if anything I have the chills all the time.  I mean teeth chattering chills.  I never take my coat off!  I still have them everyday.  Summer can't come soon enough for me. 

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!

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.

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.

I concur with Roey, I have read and heard of more physical issues with Women that men starting even in the ION Clinical (Harvoni) trials that we followed here on the forum.

It has also been very typical that 2 weeks and 4 weeks and 6 months after end of treatment (EOT) are windows or thresholds of noticeable improvement or recovery in most treatment protocols.

Give theses windows the time needed and you should notice a improvement.

matt 

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! 

Hi fourlocos,  I'm on my eighth day of taking Harvoni, i noticed that most of our fellow Harvionians who contribute to this chat are men, and luckily for them,  they say it's smooth sailing.  I really don't want to complain, but I haven't had a real good night's sleep since I started taking harvoni, and I feel like biting someone's freak'in head off.  SOOO, I am really coming to the conclusion, that it effects men and women differently.  Thank G D I do not have any pain, or nausea.  I pray for all of us that this medication works for all, and that the next couple of months go by really quickly!  Take Care,    Roey

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.

I have been curious about the other treatment as well.  Hoping to hear about peoples experiences on it soon.  I am so aware of the danger of Valium.  That is why I said I would take maybe a small piece of it and only here or there.  I stay clear of all medications.  I was just thinking it might take the edge off once in a while because I can't operate at this anxiety level everyday right now.  But I won't take it and leave my house anyway! 

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.

Thank you all.  I do wine and spirit demo's on the weekends.  Usually only 3-4 hours each.  Most assume then that I drink but honestly I don't and never have.  Bothers me so much to sell to people that often abuse alcohol.  I say nothing but I want to scream to them sometimes about my liver issues and how they should stop.  But I just do my job.  Because of how I am feeling today was rough going.  I can only call it a feeling of almost panic.  I breathe through it but that is the feeling.  I met my son for dinner afterwards and he could see that I was gulping for air and sighing a lot to get control of myself.  I felt much better once I ate something light.  He reminded me how my first few days of treatment were rough and that I just have to hold on and ride it out.  I have no choice LOL.  I love my life and family and my work.  I will find my way through this but I never expected issues after treatment.  I know others will have problems afterwards and hopefully they will see this and realize they aren't the only one.  And that I can report back soon that I am back to myself and they can have some hope too.  Depression isn't my thing and my emotions are all over the place.  I don't know what I would do if I didn't have you guys to talk because my close friends just don't understand my feelings of "not being myself" right now.  The ER sent me home with ten valium in case I find I need something to sleep etc.  I don't like to take medication other than Tylenol or advil.  But I wondered if it would be okay to just break off a small piece once I am home and chilling and see if it doesn't relax me a bit.  Help me ride it out here and there?  Thoughts?

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!

Hi 4L,

This is such a new protocol, I don't think enough is known about the EOT side effects and/or how long they might last. I oddly felt better during periods of my treatment too, but there were many, many side effects from the old Int/Riba/PI triples, so the comparison with Harvoni likely doesn't exist. But I do understand how differently you can feel during and after treatment is finished. I'm not aware of any long term clearance issues with either Sovaldi or Ledispavir (Harvoni), so you might ask your doctor what s/he knows about it. I will add that even though your doctor doesn't want to hear about side effects outside of fatigue and headache, you TELL him/her, regardless of what s/he thinks, you want this documented in your file as a possibility of treatment. They don't know enough yet, so get it documented. 

Do your best to hang in there and explain to your sons that it may take some days, weeks or months for you to return to the norm. I don't think it will be too extended, but none of us, on any protocol, returned to normal overnight. It takes time and many of the problems will hopefully diminish soon. Many of my EOT sfx just disappeared and one day I realized how much better I was feeling. But some have persisted and I'm learning to deal with them one day at a time. Try to treat the headaches and fatigue in the same manner you did during tx. As you clear these meds, your body will react as if you were still taking them. Continue to hydrate well, eat properly and keep addressing the constipation problems you learned about in the ER. That is going to cause much of the abdominal/RUQ pain you're experiencing. Once resolved and things are moving right, that discomfort will go away. Do your best to stay positive, easier said than done, but try! We're here for you...

Tig

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. 

Hey Greg -

People here have that same thing and it does last about a month. Nothing touches it. I've been downing daily goldenseal, washing my hands frequently and doing everything I can to avoid it. I work for myself and and can't afford to be sick anymore.

I'm really wondering if there is an RA effect from Olysio? I don't know much about RA and haven't had time to research. I have never had any arthritic symptoms prior and now my knees hurt - mild throbbing pain for no reason. So many complaining of post tx arthritic symptoms. Hmmm....

Interesting that I was exposed to a household full of flu - 4 kids and other family members with flu while on tx and I was the only one who didn't get sick! Also never got the dreaded chikungunya virus that has debilitated so many here, despite multiple bites while the disease was at it's zenith on our rock. Most peculiar, but very happy about it!

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

Hi Duane, Well, it's good to hear you made svr anyway. I also think it's the Olysio. I remeber when I first started reading posts of people on Sovaldi/Olysio that no one was complaining of side effects. It may be that the first people treated were more savvy about treatment or had the money to treat right away (via good insurance) and so more healthy and then as the months passed those of us not as healthy came on the band wagon and started complaining of the side effects. Who knows? I'm obviously prone to speculation.

Anyway, the problem you're having in your toes/foot sounds like neuropathy. Hep C can cause neuropathy. You may want to see a neurologist for testing because there are meds that can help -- Neurontin, Lyrica. I tried these and they didn't work so now I take old school pain meds and they do help immensely.

Take care.

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

I'd like to think it's a cold or virus. The problem is I have no fever or chills. Ah well...

There are a number of different viruses going around.  I wonder if some may have been brought across the border and we aren't being made aware because of the cost to test.  I've had 2 different viruses this year.  I don't recall ever having 2 within a 3 month period.  The first was a real doozy, took nearly a month to be fully rid of it.  Wasn't the flu as I had no fever, few chills or body aches.  A lot of chest congestion, coughing and some wheezing.

In other threads, people have mentioned arthritic symptoms after tx with Sovaldi/Olysio, and other meds as well.  I still have arthritis in my hands, also in my knees, and tendonitis in my elbows.  Didn't have this before tx.   I also noticed shoulder and hip pain after lying in bed.  I bought a gel foam mattress cover which helped a bit with this.  You've probably got a cold/virus.    Hope you get feeling better