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Life after olysio and sovaldi treatment
I am very perplexed.  I finished 12 wks of the combo sovàldi and olysio with undetectable still at 12 wks.  However, since stopping I am weak as a newborn, ache all over and cant do anything.  Thinking is even difficult. From what others say I should feel good.  Any ideas? Anyone?  
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ago, the blood draw was at the 2 month point - probably went undetectable some< Back to Communitywhere around 4 weeks….and oh, my God, this is the greatest feeling EVER! It actually took a few days to sink in. But wow!

Maybe it is just knowing that, but I only have 9 more days in this 3-month trial of O/S and it has been pretty easy overall, now that I look at it in perspective. My platelets did go up at first, then down, but now they are back up again, almost as high as in the beginning. I do take really good care of myself. Frankly, I have been having more energy lately. I have more stamina. More of me left at the end of the day!!!!

Yes, I have been very photo sensitive, but it did not kick in until week 6, which was when they then said "oh yes, that is about right" Hmmmm…they never said anything about week 6.

Anyway, for anyone having problems with photosensitivity - like myself - I would highly recommend accupuncture. It was a kind of miracle. I went from constantly icing down my chest and neck, to my skin aging overnight and actually peeling from the heat, to taking antihistamines - the highest dose overnight to trying not to scratch cause, oh brother you will be sorry! To ahhhhhh…… accupuncture good…. ;)
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475555 tn?1469307939
This is a very depressing thread for those of us who have not yet begun therapy but have committed to S+O. If I had known that the sides were so bad I would not have applied for S+O. Likewise re the after-effects.

I'm really beginning to wonder if the treatment isn't worse than the disease. I[m a symptom-less F3, and I sure don't want to end up virus-free but physically and mentally destroyed by therapy.

It looks like Olysio is the main culprit. However, I wouldn't put it past both companies to have under-reported side effects. But the bigger danger is lasting after-effects. Maybe S+O shouldn't have been approved so fast. Abbvie triple-therapy had no side-effects in Phase III trials and 100% SVR rates, but hasn't been approved yet. I wonder why?

Mike

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683231 tn?1467326617
Probably because they asked for approval later? They were not ready to submit. I agree with Livelife777 the reason why some have a harder time than others is because some have multiple conditions other than hep c anxiety, depression, RA, immune system issues I would be surprised if having those did not make therapy harder to handle.

I personally find hope in these pages. How many of us have been cured so far that had absolutely no hope before. How many of us had ticking time bombs in our bodies waiting to take us out that are now quiet.

Hopefully soon these pages will only be a memory of what it was like before there was a cure for hepatitis c and we can all go forward with our lives not waiting for the next symptom or liver disease. bleeding from esophageal varicies, massively swollen abdomen making it difficult to breath and eat and hoping you don't develop an infection in the aceitic fluid, or becoming confused and forgetting everything due to hepatic encephalopathy and falling into a coma.

Thankfully if we cure those fears will be forgotten. Where there is life there is hope

Good luck everyone
Lynn
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If you think long and hard each and everyone of us wants this ugly beast that dwells in us to be eradicated! Gone so we no longer have to have a communicable virus hanging on our backs. We research and research but end up treating with the strong drugs that our doctors suggest. We're all just trying our best to live and not let this virus do any more damage. When we agree to take these drugs we also agree to the not so good side affects that come along with the treatment. I guess what I'm trying to say, is we really don't have a lot of options. I am 1a, tx before with interferon and RIBA. Three months in had to stop. I was a slow responder. Now today, it's my 80th. , day tx with Sovaldi/Olysio. I have RA and this hasn't been fun with the autoimmune issues but doable. I knew the risk going in and DO NOT like what these drugs are doing to me but understand why I agreed to do them. I just want this beast gone! I see others post on here and it makes me cry that they are having transplants, had transplants, fighting cancer, and just purely fighting just to stay alive. I pray for their souls just to have the strength to keep fighting. I haven't had to miss any work. Some days I come home and just drop. I thank God for this community of such awesome people that we all can go and ask anything. I just felt like posting this. In the end of it all, I pray we all made the correct decisions for each and everyone. Sticking together is one of the best things we can do. Holding someone's hand along the way can't hurt. God Bless each and Everyone!
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I think GoGG said it all, but I just wanted to remind you of a few things. One, this thread was started because so FEW people were talking about sides with S &O that Rubysky decided to talk about her experiences, and I'm very glad she did, because it gave those of us who do have worse sides (which, let's face it, is actually pretty rare...MOST people on this regimen report very little sides, comparatively speaking.) I have some idea because I go to a few boards looking for posters who report about harsher sides, so I can get a bead on whether I'm doing pretty poorly - and if I'm the only one? So I think you're going to get a pretty skewed viewpoint if you want to know what the general population of treaters is experiencing...We are not the general population of treaters (for the most part) We are the relatively few people who have harsher sides than most and we're just sharing our own experiences. Please don't take away our experiences emblematic of what EVERYBODY who treats with this regimen will experience. As mentioned in this thread...my own hepatologist who is the head of the Liver Dept at supposedly one of the 10 best hospitals in the US (according to Forbes Mag) A patient perhaps will do worse with symptoms of Hep c and the treatments depending on gender (she says women do report more symptoms and sides to treatments, (perhaps because of hormonal and other factors)

Remember, the liver is the general of the hormone processes. Many of us are in menopause, and many of us have other conditions, immune and otherwise. All this might have an impact on the general picture. I myself have underwent a bone-marrow transplant due to leukemia a few years ago, of course I might have a harder time with the hep and the treatment. Then there is amount of liver disease (my liver is mostly okay but my doc told me I was prolly being so symptomatic of the hep itself because I was one of the patients where the virus itself was wreaking havoc on my immune system, if not my liver itself, that happens with some people.

That's why it was incumbent on me to get rid of this, and soon I will know if it worked, and, like I said...I'm only a stage 1 liver fibrosis, barely nothing. But I couldn't take this disease anymore, I had enough! I feel like it's gone...that weird type of cloud of depression is gone. The water retention, a whole host of symptoms that I know I can at least attribute some of them to the Hep. But no, not all people manifest symptoms.

One thing I have noticed though, a lot of people who SVR report that they haven't felt this good in years! It can be subtle how the dragon takes one over. So please realize that a lot of people hardly report any symptoms on this regiment, or they are negligible. The older SOC treatments I remember from people talking about them, they were brutal to a lot of people. And it took almost 6 months to a year to get over that stuff, so we're lucky if we're just complaining about a few months.  Most people say they feel better in a few weeks! So I just wanted to talk about some perspective here. I'm very glad for this thread as I said, it's been a life saver for me. Thanks!
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one more thing (sorry) my age. I bet I could fly through this treatment if I was 45 or younger. I'm 60 though.
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683231 tn?1467326617
Well said Sovaldi13Newbie and GoGG

I would much rather face side effects than the alternatives of decompensated liver disease.

And if you go to a place where people can voice their concerns and problems that is what you will find there.

Wishing you both long healthy lives and all our comrades in the fight
Lynn

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I'm new to this community and finished the S/O treatment in May. The side effects that have bothered me (& hubby) the most was the change of my temperament (grouchy & emotional) and mental slowness. I was always fast in the word games I play online and now not so much. I am not as unbearable as I was but I hope my quick thinking returns. Has anyone here experienced one or both of these symptoms? Please tell me it's temporary!
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I have been for foggy for quite a while, but my mental alacrity seems to be slowly coming back as I get further and further away from treatment (S & O) --if that's any help. I was foggy from the hep, as well. Now I'm getting much more clarity. Just my own experience.
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Hello , I did 12 weeks of the solvaldi olysio treatment too , I cleared the virus in the first month actually the  first two weeks , everything looked good . BUT AFTER I STOPPED IT CAME BACK !  I was stunned to say the least . The Dr. said I was the only one whom it came back on so far ? I am 1a have had hep C for 43 years . i NOW HAVE THIS AWFULL RASH all over my stomache neck elbows groin area and back near my waist thias is awfull got meds ointment went away for a week came back. When I was on the treatment I had no appetite and EXTREME INSOMNIA It was awfull I wasnt sleeping at all one week I was up for three days with no sleep . I also had mouth sores and one awfull night I felt like my chest was getting smashed and I could take deep breaths VERY SCARRY I almost stopped the treatment . antway now I have to wait for october again to try solvaldi and ledipesfer i belive its a one pill treatment I hope this rash goes away this is nuts . again I guess I have a "mutated form of hep c "
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683231 tn?1467326617
Hi Alexandra

Welcome to the forum.

Sorry to hear you did not make SVR you are not alone unfortunately others also failed with the same treatment.

I am week 11 post treatment today next week I will do my 12 week post treatment viral load test I have not tested since I stopped on 6/10 so I have no idea of my status. I am (or hopefully was) GT 1a, cirrhosis DX in Jan 2008, MELD 7, 3 time TX non responder.

Sovaldi ledipasvir is rumored to be approved on October 10th but will take a month or 2 more before patients will be able to get the meds by prescription. I also have heard it will be a single pill and the results have been great for genotype 1.

You did not say what is your genotype or if you have treated before and with what treatment or the condition of your liver for example if you have cirrhosis. Those are all factors in what treatment is the best for you and your own individual likelyhood of success.

If I can make a suggestion if you have a question for the group, instead of adding a comment to an existing thread, click the orange button at the top right of the page that says "Post a Question" that way more people will see your question and respond to your concerns.

good luck
Lynn
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How long have you been off the meds? I reached SVR-12 this month, 6 months will be in Nov.  I am cirrhotic, 1b. And you?
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10175413 tn?1427173851
I HAVE NEVER HAD SO MUCH SUPPORT AND POSITIVE FEEDBACK AS I HAVE ON THIS WEBSITE. ITS BEEN SO NICE TO BE ABLE TO SHARE MY CONCERNS, FEARS AND QUESTIONS NO MATTER HOW SILLY I THOT THEY SOUNDED AND REC'D SUCH SUPPORT FROM YOU ALL. I FINALLY FEEL LIKE I HAVE FOUND A GROUP OF PEOPLE WHO ARE WARRIORS JUST AS I AM AND WE UNFORTUNATELY HAVE THE SAME ENEMY...HCV...WE WILL BEAT THIS, EVERYONE OF US WILL ATTAIN SVR BECAUSE WE ARE SURVIVORS...EVEN THO I HAVN'T SPOKEN TO ALL OF YOU I  WISH GOOD HEALTH AND A LONG SVR
DEBBIE
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7510956 tn?1411675017
As afraid as I am of meds an sides I too rather deal with the sides and avoid liver decompensation.
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Hi there and just checking in.  I do see that the misty dark cloud is starting to wither and fade.  Happy that you are starting to see blue sky's.  it's only really a matter of time.
Continue to keep the faith
....Kim
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Couldn't agree more with your 'cure' percentages.  I'm 3A like you.  Finished treatment 7/15.  After two weeks viral load back up so the 90percent cure I think is over optimistic. The only difference I feel now is I don't have the rashes or itching.  That and my hair still continues to fall out six weeks after.
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I just had a thought (amazing I'm able to think?), how many people on here are on an anti-depressant med during treatment and then, when they stopped the treatment, they went off their anti-depressant??  If one is on an anti-depressant during treatment, they need to be careful coming off of them, when the Hep C treatment stops.  Many antidepressants can't be stopped suddenly and have to actually be 'weaned' off of them.  I didn't use antidepressants on most of my Hep treatments including this one.  Bascially, because many years ago when I was 30 yrs old and having had a hysterectomy, I went through a deep depression period of time and was on a lot of different types of antidepressants. My Christian psychiatrist would start me on one A/D and I'd be on it awhile to see if it would work and then, when it wasn't and/or I was having side effects, I'd be weaned off of that one and a new one was tried.  I did several different ones and this went on for months. I finally, decided to give up on anti-depressant meds and try something different.  For me that was talk therapy and exercise. But, I say this to you all about the anti-D's because I know on at lot of them, there are warnings or recommendations about not stopping them suddenly.  I'm thinking that if one was to stop their Hep C meds and their antidepressant at the same time, that would be really bad.  I just wanted to throw that out there for anybody getting ready to be at the end of their treatment and thinking that they could just stop their anti-D's...  better check with your doctor first on that.  Susan400
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Livelife, thank you for your inspiring post.  I also am worse eot which is going on 6 weeks now. If I don't bounce back within the next few weeks so I can get back to work and back to being my old self and mother, things are going to get grim personally and financially.  It's criminal that the pharm companies get away with 100% withholding information and misleading the public on the severity of it's side effects and eot recovery.  I would have waited until the new drugs come out next year.   Not that I am overlooking the huge milestone of curing this disease but certainly would have made a different decision on when and what I pursued.  If this goes beyond the next month, I feel legal action is warranted.
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I just want to thank you all, this thread has been a lifesaver for me, I smile when I see it pop up again and hope you all are doing better...and my heart goes out to the relapsers and I wish them strength to take tx again soon.

It will be 2 months out of EOT the 16th of this month and yesterday I called the on call nurse (think my brain goes on little journeys sometimes, but I'm also post menopausal, hah!) because I was almost convinced I was anemic....then I had the sores on the sides of my lip to prove it to myself (hadn't gotten those since I did chemo therapy 2 years ago) Nurse told me that I had great blood work, that with my red blood work there could be little chance I was anemic, but I have been inside a lot (light sensitive - though the Olysio was to blame for that, I also had a bone marrow transplant which makes me a bit sun sensitive) so I'm a bit stir crazy as well, LA gets hot in September....It's just so good to talk to people who are either treating or doing the waiting game, before and after. I just don't know anyone with this illness, at all. You're my "support group" and you all really help. If Hector is reading this, thanks for all your help and I wish you the best outcome for your tx...Few people here help as much as you do. Be well everyone!!!
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I have had to address this issue.  My gastro/liver Dr. told me HepC has been known to hide in the intestinal tract.  The way I view S/O treatment is it kills (an operative term) the virus where ever it is hiding.  My IBS kicked up after treatment (been finished and on week 3 of afterward).  However, the subject was brought up about the possibility of my IBS actually being caused by the HepC inflammation.  Follow your IBS diet, take it easy.  From what I can tell from many of the comments it takes a while for your body to equalize after treatment, then you can figure out if other steps need to be taken.
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I am one of the rare people born with HepC.  3 years ago I was "pronounced" and had two months to get a transplant due to autoimmune hep deciding to appear - it is believed due to the stress of a gall bladder removal.  Went through the battery of tests - got on the transplant list and, lo and behold, the HepC and autoimmune finished their battle (not without leaving me with 1/5 operational liver).  Then I started getting a little better.  Two month moved to three, three to four.    Treated the autoimmune briefly since treatment for autoimmune may let hepC flourish (which it did) however, the cocktail is not an option for my level of autoimmune hep.

Treatment is a hard decision to make.  You may be right, we are the forerunners of a new protocol.  It is the risk you take.  Having HepC is also a risk.  The decision is yours, but progressive liver disease is just that, progressive.
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Finished Sovaldi/Ribavirin on May 10th. Felt terrible during treatment and continue to feel terrible 4 months later. Several weeks after treatment I continued to have pain in liver region. Had CT and was told I had gallstones. Had my gallbladder removed and liver biopsy. Biopsy showed mild fibrosis. Following the surgery I still felt terrible! Another CT was performed and they found fluid around my liver and a lesion.Was subsequently hospitalized for 3 days. They thought I might have a bile duct blockage following gallbladder surgery but found no evidence of blockage. No explanation for fluid around my liver. Saw GI doctor again for persistent pain and fullness in abdomen and he ordered an endoscopy and gastric emptying study which came back "delayed." Endoscopy showed inflammation in various parts of my gut that still hurt.. Now I have a diagnosis of gastroparesis. Changed my diet and still feel terrible!  Finally saw my PCP and suggested he check my thyroid levels as I have hypothyroidism. I can't believe that it didn't occur to my GI Dr. to check my thyroid levels, especially since hypothyroidism is a common indicator of motility issues (gastroparesies.) Sure enough, my TSH and T3 were off the charts! I have no doubt that the Hep C treatment destroyed my thyroid, which in turn caused the gastroparesis. Saw a endocrinologist and they increased my thyroid med drastically. Switched me from levothyroxine to Armour and I am having problems with insomnia and extreme hot flashes. I'm sure my thyroid is freaking out from being so depleted to being overdosed with thyroid hormone. My Eosinophils are high and I noticed that that is common with many people that posted.  Most recently I have a burning sensation in right lung. Still feeling terrible. I wonder if I will ever feel better. At this point I really regret doing the treatment and would discourage anybody doing treatment unless they were having serious symptoms! Felt so much better before I started this journey!  
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Please don't feel alone, going on 2 months and a few weeks and I still feel yucky. I became a little deconditioned on treatment (did a lot of lying around) so now I'm trying to take longer and longer walks to get my stamina back up but I feel pretty out of it some days and still feel like I'm in the withdrawal stage. I wish I was one of those lucky ones who felt better a month or two months out but I have to be patients, considering all I've been through I guess I'm doing okay. But NO WAY do I feel as well as I did before I started this treatment. Guess with some of us it just takes more time. Tomorrow I'm going to ask for them to check my thyroid, but I realize that with some people meds, even for just 3 months as compared to a year...Is still going to be debilitating. I was still undetected on my last draw so maybe I'm FINALLY going to beat Hep C, and that's a lot. I try to keep telling myself that.

I also think it threw my hormones out of whack and am going to see my gyno soon. But then I see the people who have gone on with this disease to end stage and transplant, and I tell myself I should feel lucky. Perhaps  some of your conditions will level out over time?, I'm so wishing this for you. I've seen this happen with people. The insomnia and hot flashes (night sweats) it's hard, I realize. But that is better than having your liver
go, because once that's goes, you need a transplant. Just my own thoughts. Be well and thanks so much for this thread!
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Thank you so much for the reply. It is encouraging (and sad) that so many people feel unwell following treatment. I had such high hopes! I would strongly encourage you to have your thyroid levels checked. It seems to me that this treatment wreaks havoc on the endocrinology system. Again, thank you so much for your reply! Have a blessed day.
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Hi, thanks so much for bringing the thyroid issue up.  About 6 yrs ago I had a thyroidectomy due to tumors (benign) on both lobes. I was told by surgeon to always take synthroid ( brand) an not levothyroxine. In January, my new PCP switched to generic ( levo)  even though I told him endocrinologist said otherwise.  I'm about 2 wks. Post tx. On sol/RIBA . I'm on 200 mcg. Which I think is a high dose, an now I'm wondering if my thyroid levels are out of wack because of EXTREME fatigue off an on.  One day,a little energy, the next, down for the day.  Maybe this is not related to treatment, I'm hoping. Wondering if the change from brand to generic in Jan. Then starting treatment in june has something to do with it.  I will be getting TSH checked ASAP.  thanks for the insight an sharing.   Take care.  Mary
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Hi Mary. So glad to hear that you are going to get your TSH levels checked.It's astounding to me to hear of how many people still struggle with fatigue following treatment. I would also encourage you to have other markers measured like B12 and folic acid. While the treatment does eradicate the virus (hopefully) it seems to also deplete our bodies of essential ingredients that lend to feeling well. Let me know how your tests turn out. Also, I don't know if you've considered Armour thyroid, but this med treats T3 as well as TSH. You may want to have a discussion with you PCP/Endo about it. Thanks for the post. Dee Dee
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131114 tn?1380086790
hello y'all I have not been on in a while, i spent the entire year gearing up for insurance and treatment with S&O. My doc was the lead guy on the trials and so i was able to get started in may. i am 2x relapser from the old days and was ready to do it again.

i found out i was 1B and stage 1/ 6/18 inflammation. So i started may 21.
i must say compared to the I/R this was a walk in the park, and i went UND at week 2.5. I was UND at EOT and FU4. My next test in on NOV 6th which is FU12 and will be considered cured as long as i am still UND.

This was some good stuff. i did have some major insomnia and ate like a horse the entire time. i could feel the virus leaving! yay. In general i had good health aside from some left over weirdness from the I/R tx (which i did twice for 72 weeks). But none of that flared up any worse.

It is weird tho, I too felt better on tx. I wonder what's in those pills that causes that? Also like some of you i feel off in the brain dept. not sure what the deal is with that? it's kinda of like it's moving slow and i am having some trouble typing. it's been less that 2 months tho so i am giving my self some time. one great thing is i am feeling like sleeping again!! i missed that all summer. i did not have the light problem, but the heat was killer.

so just thought i'd chime in and say hi, since i've been off the board. i found some groups on facebook and that was more immediate so i've been there a lot.

hi to all my old friends here! <3
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Hi all post tx, I'm posting this since approval of patent July 2014 http://www.pat2pdf.org/patents/pat20090042822.pdf   reply: for more info, It will only get better!
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I am new here and I am glad I saw this. I am 5 days off treatment today. I was scared and thought it was just me. I have been UD since week 4 and my blood work has been perfect. But the day after I took the last pills I felt like if I ate I would throw up. I am so weak and so tired. I am irritable at everyone and everything. I can barely stay up to do anything even watching TV is a tiring task. I have called the pharmacy and my docs and they all said there must be something else going on because ending treatment does not do this to anyone. Yet here you all are saying otherwise. What in the world is going on with us? You are not alone. They acted like I am crazy. I know I should feel great like I did when taking the meds.
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317787 tn?1473362051
I am sorry you are going through this, unfortunately the doctors all act as if we are cured, there are no symptoms after finishing tx.  In fact many do not want to even see most patients afterwards.
Everyone is different, some will have no problems others it takes time.
Doing some form of exercise helps.  I believe that our body gets depleted of vital nutrients while on tx so we should supplemen.  Checking with doctors first of course.
Continuing to drink water also helps.

I pray that everyone will recover, take care, Dee
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I had to stop S/O at 6 weeks due to frequent heart flutters. At day 18, my VL was < 15 but detected and UND at 4 weeks (It was probably UND at 3 weeks but I did not test then. EOT + 3 weeks and 1 day I was still UND. The frequency of my heart flutters have dissipated but not stopped and I have this near constant slight pain around the heart area that I never had before.

The chemical half-life of these drugs is relatively short, but the actual clearance and any associated damage caused by them may take as long as a year or more. Of course, the latter is just my opinion but the fact is NOBODY really knows--certainly not the gastroenterologist or hepatologist or even the research scientist that developed these drugs. These drugs simply block biological processes that trillions of cells, bacteria, viruses, etc use including the heart, brain, kidneys, etc.
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First off good luck to each and every one of you! My question is this. Has anyone had these butt-kicking headaches after their treatment is finished? I finished my Olysio/Sovaldi combo on Oct 18th 2014. And on night in mid-November this migraine hit me and has been off and on since. I've heard of the headaches during treatment but that wasn't when I experienced them bad-boys. Funny or not so funny that is the doctor said to me after 8 weeks so tell me about "the Headaches" ? I said I have had zero. Man I sure wish that was still the case. I'm going to ask my PCP for a MRI just to rule out the scary stuff and you all know what letter I'm talking about it rhymes with "P". I don't want to even say it. Childish maybe but that word has scared many a man/women. So hopefully that test turns out zero but these headaches are driving me nuts! What say any of you on this subject. Please anything will help me not worry so damn much. And thank you and Merry Christmas and have a Happy New Year!!!
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I have had minor headaches post treatment--but no migraines. I drink a large combination of water/gatorade when this happens and that seems to help a bit.
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1583549 tn?1308753062
I am not familiar with the drug Olysio/Sovaldi combo.   Is this similar to Harvoni???
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683231 tn?1467326617
Sovaldi was approved as a treatment with interferon and Ribavirin Dec 2014. Olysio with interferon and Ribavirin was approved Nov 2014. Per the AASLD (American Assn to the Study of Liver Diseases) guidlines Sovaldi and Olysio used together was the recommended treatment for Genotype 1 patients even though the usage at that time was "off label" meaning not per the prescribing information. Sovaldi and Olysio are two separate pills.

Harvoni was just approved by the FDA Oct 2014. Is is a single poll combo of Sovaldi and Ledipasvir. This is the same med Sovaldi but a different second drug Ledipasvir.

Simeprevir (Olysio) is a NS3/4A hepatitis C virus (HCV) protease inhibitor.  While Ledipasvir is a potent inhibitor of HCV NS5A, a viral phosphoprotein that plays an important role in viral replication, assembly, and secretion. These drugs do not work in the same way as each other they are not the same class of drug.

Hope that helps


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Lynn, wasn't that supposed to say 2013.   Pat
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Oops, I meant for Nov & Dec for Sovaldi and aolysio.  The Oct (Harvoni was Oct 2014.
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683231 tn?1467326617
Yeah ya got me how time flies lol
Correction
Sovaldi approved December 2013
Olysio approved November 2013

Also should have been pill not poll
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1583549 tn?1308753062
thanks, that clears up my questions.  Were you on this drug and now taking Harvoni?  Or anyone else for that matter.
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I'm not happy that so many are having such a hard time, but I am glad that you all are posting. I got Harvoni and started on the 26th of this month. I had to stop after two days. The itching was unbearable. I've been off for two days and this morning I woke up with a headache so painful that I couldn't open my eyes. It hurt that much. I went back to bed and slept until after it got dark.

I truly think the sides are under reported. I don't think they really know enough yet. I'm worried I won't be able to work. I have only myself. I can't miss a single paycheck and if I turn down a freelance gig, the offers will stop. I have students who started two weeks ago. Two of them have 50 hours each and usually take classes together. They have 4 hours per week. and the other has 22 hours, she has 2 hours per week. If I had such incredible sides after two days, I wonder... I also think it causes flare ups of autoimmune diseases.

I'm wondering if I should wait until they finish, and not take students for 3 months. If you pull out on a student, they take it personally and the school is almost unforgivable.

I really don't know what to do. I can try to talk to my doctor and explain and hopefully I can still get month 2 and 3 of Harvoni.
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683231 tn?1467326617
Hi cakes

Quick rundown
GT 1a diagnosed 1990
Probably got hep c 1979
3 time null responder to interferon based treatments
Cirrhosis diagnosed Jan 2008
Treated Sovaldi / Olysio March 2014 to June 2014
Relapsed determined at 12 week post treatment viral load test Sept 2014
Started Harvoni Nov 18th 2014 for 24 weeks
Asked doctor about adding Ribavirin doctor said ok waiting for express scripts to approve.
Will be done with Harvoni May 4th and tested for SVR late July 2015.

No noticeable sides from Harvoni maybe an occasional mild headache. Same for Sovaldi Olysio no noticeable side effects.

Best to all
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1583549 tn?1308753062
Just wondering how the itching is feeling and did you stay on the Harvoni.  Sounds like the side effects are doing a big number on you.   Have to wonder if you are allergic to something in the drug.
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Rubysky,
I feel exactly the same. In fact, I have been searching the web for 4 months to find out if anyone else felt like their doctors were treating them like herding cattle rather than patients. Perhaps Sovaldi is a miracle drug, but the way it is being administered has reduced the level of medical care to rock bottom.
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I am G3a and on 6 month tx of Sovaldi and Riba. This I've been on Hep mag forum throughout my tx. I'm on 800 mg daily of the Ribavirin and have 7 days left. I decided it was time to research the "after tx" life. Now I'm depressed because there's only 1 positive post! So, my question is, is the Olysium (sp?) different, older than the Sovaldi that I'm on? I'm looking for hope my fellow dragon slayers, hope that Sovaldi is newer and that I will recover and feel better after tx, not worse as most of these posts are saying.
My heart goes out to all of you suffering though and I appreciate any response.
LisaBlue
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Ok. Feeling dumb now. Olysio is what most on here are taking rather than Riba with your Sovaldi. So, I suppose my question should've  been do you all feel SR tx is different than SO tx? Is there hope for me to feel better? I've done very well on tx, better than I had imagined. Goid and bad days, but nothing that stopped the world from turning. I am tired and blue today and was looking for hope on this community site.... I am 50, F3 and treatment naive. Virus free at week 5 and won't be tested again until week 25 and then of course the final tell all lab at 12 weeks post tx in early December...
I've skipped a few labs, they really like me doing labs every week.... I've skipped last 3 weeks because I'm sick of it all and the 15 labs I've done have all been stable. Just ready to be done, but Nurse called and said even though I have 1 week left I still need labs done. (I'll go tomorrow....)
Anyway, any positive thoughts on post tx would be greatly appreciated.
I've gained some weight.
Lots of "liver aches" , every day, and septiated complex liver cyst which is stable. Other than that I'm doing ok. Lots of water. Excercise as I can, 30 minutes 5 days week. Stay busy,work high stress job, feel crazy half the time, but winning the battle. Thank I'll make it?
I'm tripping on the posts that I won't recover and I felt just fine before tx....much love and respect to all.
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Welcome to the Forum!  stop worrying about post treatment and THINK POSITIVE about treatment!  

I WAS Gt3, also F-3.  I took Sol/RIBA for 24 weeks!  Those two sentences should tell you enough to totally cheer you up!  Was is the key word there.

I was not even treatment naive - treated with INF for 7 months in 94/95, which did not do the job.  By the was I was 72 when I started The 24 weeks and 73 when I finished.  Also overweight.  Those are all negative factors for tx for female gt3s - and I STILL SVR'd.  

Yes, we all had blue days on treatment, so get on your computer, tablet, cell phone or whatever, and type in jokes, and read some to start cheering you up.  Watch an old comedy or musical, back when movies had happy endings.

As for after tx, yes, it takes time for the meds to clear your system, but PLEASE DON'T ANTICIPATING PROBLEMS!  Some people do have problems BUT MANY MORE OF US DON'T, beyond the period when the meds are clearing your system.  I started feeling better by about 3 weeks after taking the last RIBA as my body started rebuilding from the anemia.  By the time of my 12EOT Labs, I felt --most of the time -- like I have not felt in years!  Yes, there were days when I felt that I might be relapsing, but I would come on here and somone would cheer me up, either by what they said to me, or to someone else, or what I could share.  I even had times when I had 3 or  4 days in a row like that, so I rested, cut myself some slack and kept my mind busy.  I am now almost 10 months EOT and really feel like a new person.  Does that mean I never have a bad day?  NO, but read the paragraph again, I just rest and go on.

Yes, there are people on here who have some problems, post Sol/RIBA, but many of those are people who are Cirrhotic, and/or have treated several times, so ther could be other things contributing to their current situation.

Are there people who were treatment naive and healthy who have problems?  Again, yes, these are strong meds, so anything is possible.

But why you have seen only one positive statement and many concerning problems is probably because so many get healed, and go on th other things and don't keep returning to the site, although we have a group who do to share as others shared with them (us).  

Basically I am saying to say, in my wordy way, that while some have problems after treatment others don't and it is far better to be positive - I truly believe that actually helps your body do its job - than to look for the negatives.

I knew that some were having post tx residuals - and as others have said, have other medical conditions that might aggravate the situation, but i laid that aside and did everything I could to make the tx work.  It might not have.  If that had happened, I would have done as others on here are doing, but while on tx I had to tell myself not to think about that possibility, to think positive, drink lots of water, eat a liver friendly diet, gave up alcohol when Dax's in 94 so that was no problem, and exercised when I could and what I could.

You have said you are doing those things, too.  

Take those blood tests, Girl!  Let the Drs have something to monitor how your body is doing.  You are so close to finished!  Sorry to sound preachy - just trying to give you a pep talk to help you keep on keeping on.  

YOU can do this.  Oh, and remember to keep on drinking water, eating the liver friendly diet, etc after meds are complete as that will help your body to rid itself of the meds.


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Oops, hit submit but for I put the ending.  I am praying that you will finish well and have a light time clearing your system of the meds,AND not have residual problems!  You are young (well under the point where age in females is considered a negative, and, sine you are only on 800mg of the RIBA, I believe that you are not over the weight above which it is harder.  Also, you are female and that is one advantage.

blessings and prayers and on to SVR and without residuals!

Pat
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Lisa.   Doing treatment was worth every single post side effect imaginable.
As Pat mentioned your on a lower dose of RIBA ( I was 1,200 and only weigh 110).  When you finish treatment you may feel a little run down as the drugs are accumulative, but given time you will feel stronger every day.
Being cured from this virus is a life altering event.  When you are cured you will look back and say treating was the best decision you've ever made. There are many of us that had no side effects post treatment and you likely will be one of them.  Don't worry if you feel sluggish for a few weeks after as everyday you will also feel better.  We are so very lucky to live in a time and place where curing this deadly virus was possible.
My best to you
......Kim
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Might add, my hats off to all the predecessors that went before us and had to endure those very outdated toxic drugs of yesteryear.  They paved the way so that we eventually were introduced to the current treatments that are now effective and less invasive.
They are the true stars in all of this.  Because of them you will be cured with limited down time.  The payoff is truly extroidinary.
Embrace this opportunity
.....Kim
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Hi,
My mother has undergone the same treatment 2.5 year ago and is feeling pain in bones and fatigue since then.
I think thus far everyone is just ignoring these signs bc the treatment is effective and very profitable. what all these symptoms mean and what will eventually happen as a result t of the treatment only time will show, but so far this feels more like suffering than cure.

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683231 tn?1467326617
Hi MiraE

This post was started in July 2014 you might want to start a new thread so more people will see your comments.

I think there is also a post treatment thread of some sort.

Has your mom seen a doctor for help with her symptoms what has her doctor said about suspected cause or any treatment to help?
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