Hep C Discussion Forum

Fireman Rob · Senior Member

RE: Life after Sovaldi/Oylysio

basser · Senior Member

am coming up to 6months till i took my last meds.am virus undetected.really great news.like most though am going through post tx aches and pains.seems if its not one thing its another.still such early days. when i think what my system has gone through its amazing im still here.have accepted now that its eating healthy getting exercise and good sleep is the most i can do this time.there is no hurrying it.have had some great advice from people on this forum.it has helped greatly.just wish everyone a speedy recovery and good health william smile

Cinnamon Girl · Guru

Hi there Howard,

Sorry to hear things haven`t improved for you since you last posted. Wonderful though it is to be given a clean bill of health it doesn`t make the pain and discomfort go away and it must be very frustrating for you.

Post treatment health issues and lingering side effects are a neglected areas by most doctors and also we just don`t know yet the possible long term effects of the newer drugs like Sovaldi and Oylysio.

We are seeing a number of people here who are taking some months to recover, and I suppose with no definite diagnosis of anything wrong all you can do is wait and be patient. It`s still less than 5 months since you finished your treatment which really isn`t that long.

Best of luck to you, hang on in there and do keep us updated.

Take care. ~ Jill

Drug Out · Member

Hi, thought I'd give an update. Still no certain improvement, although the aches and pains move around some. Stomach pains persist; at first they were strong enough that I checked in w/PCP who did a urine and blood tests, no sign of infection, everything normal. Neurologist gave me a clean bill of health. Since then, since the pains continued, had a CT scan with contrast, nothing apparently wrong. As of now my heart has been checked (nothing wrong); nervous system okay; stomach okay; liver okay; head okay; colonoscopy/endoscopy okay. No reason can be found for pains, fatigue, flu-like symptoms...only advice I can get is, take tylenol up to 2000 mg/day (which works, as far as pain is concerned but doesn't give back any energy). So, day after day, I wait...None of the doctors have seemed to find anything to say except probably some kind of side-effects, no way of knowing how long it will last; but we have certainly eliminated a lot of things that are not wrong with me...some comfort in that (and not a little expense).

mallani · Guru

No offense taken, Duane!

I know my Hepatologist very well, socially and professionally. He ran the Victrelis Trials in my state, but really had little interest in Sx. He just wanted SVR for his patients, and damn the Sx.

He wasn't really interested in my post- Interferon problems and just referred me on.

These guys just want good results for their patients i.e. SVR. Harvoni seems to be pretty Sx free, so hopefully that will be the same, post-Rx.

Rubye · Senior Member

I'm at 14 weeks after EOT with Sovaldi and Olysio and am doing so much better. I had a terrible time while on treatment, mostly nausea and fatigue, and these side effects along with increased arthritic problems continued through around 10-12 weeks after EOT. However, now I'm pretty much back to normal and feeling the same as I did before treatment. I am hoping to get better with time but think my cirrhosis could go either way still. It just may be that my liver is getting better since these side effects have gone away, and Duane, it could be that because you're decompensated that your body has not been able to get over the problems the S/O caused.

As far as doctors go I've been extremely lucky to have great PCP's and I have the best rheumatologist and dermatologist in the world. But, when it comes to gastroenterologists or hepatologists I've had the worst. Maybe it is because I have Medicare with Extra Help. I don't know. I just know these specialists have been some of the more arrogant and uncaring people I've ever been. Or, maybe it's been the states where I've had care -- Oregon and Oklahoma - not the most attractive places for doctors.

Tig · Admin

Hi Gary,

Good to hear from you again! Congrats on the EOT +30 SVR! I have no doubt that your 1 year VL will put the concern of relapse out of future consideration. You got this dude!!!

drexelpbp · Member

Hi my name is Gary and i thought i would throw in my 2 cents . I started Sovaldi/Oylysio in March 2014. Thank God, I was UNDETECTED 30 weeks EOT in January 2015. Will do 1 year EOT test in June.

I had very few side effects on treatment. Maybe a few headaches and maybe some fatigue the first few weeks of treatment. So far post treatment I have had no problems that i didnt have before. Hope fully none will crop up.

Just keeping my fingers crossed for UNDETECTED in June.

Goodluck to everyone

Dzdayscomin · Senior Member

Very good points, again I don't want to come off neg. towards Dr's at all, I have a great team and respect them very much.

I just think you hit the nail on the head when you said they are just getting the info and have not had enough time to digest it to share opinions.

People like me have to realize that the Dr's are not experiencing what we are, so it's got to be difficult to have a full understanding based on the plethora of different symptoms and problems people bring to them, mix in a few hypochondriacs and well you get the picture.

Duane

Drug Out · Member

I'm sure not all patients are the same--i.e., some really prefer to know, can deal with it, and others don't and can't. I know doctors are caught between a rock and a hard place, what with litigation and tort lawyers being what they are on one hand, and some patients perhaps not being in the most stable of places. But I personally do much better with doctors who can be as straight forward and forthcoming as possible. Given all these things, I have been put in a very awkward place at times, and I have probably put them in one as well when I tried to press them for information they were perhaps just coming into possession of themselves and had not yet been vetted as to "what to say." On the other hand, I often have someone behind me pressing me to get answers, such as my wife who is becoming freaked out and let's face it, being somewhat a hostage to my personal limitations...

Dzdayscomin · Senior Member

I am a bit surprised at Dr's (No offense Malcom) I think they hear a lot more than they take the time to tell us about, I mean many don't have the time to deal with the actual illness so I'm not surprised they don't share anything they are hearing on these side effects, look at our small sampling of population here on this board who have reported these sides..... I'm telling you all there is more to the story, but being it was prescribed off label and did what it was supposed to do...I really have no place to complain.

Gator Man · Senior Member

Hi Howard and Debra,

I join everyone in welcoming you to the forum. Like Barnacle and Dzdays, I am a S/O veteran just over a year from EOT (waiting for my one year EOT lab results). Before tx, I was a relatively asymptomatic, undiagnosed F4 cirrhotic, running 30-35 miles a week and otherwise living in ignorance of ongoing liver damage. Prior to tx, there were subtle physical symptoms of Hepatitis C that I attributed to advancing age rather than the disease or liver problems.

Post tx, I've had some stiffness, tendinitis in my elbow and hip soreness with running. I can't really pin any of this on S/O since most of my complaints started several months after tx and I had them to some degree in the past.

I talked to my hepatologist last week regarding some of the concerns shared on this forum about S/O post tx. He has prescribed S/O to dozens of patients and hasn't noted any substantial issues post tx. He did add the same caveat mentioned by Mallani that these drugs are new and there are still unknowns with long term effects.

Debra, regardless of its possible association with S/O, Tig is correct that any problems relating to possible cardiac issues should be checked out asap. Keep us posted.

john

sunrise · Member

Hi Tig

Thank you for your response, and I will let the doctor know soon. I understand I need to rule things out. Yes I agree being some of the first to experience side effects in real time, not clinical trials. I do pray they subside as it affects every day life. Hope you are doing well... Goodnight on this side of the pond

Tig · Admin

Hi Debra,

I'm sorry you're still dealing with the tendonitis, but I hope in time you will begin to experience some lessening in symptoms. We just don't know how long it will take for these post treatment issues to resolve. You are all some of the first to experience them. So it's valuable information to pass on to your doctor. It may help those to follow.

Now the issue with your chest pain and palpitations is concerning when I hear it. I want you to let your doctor know about it at your first opportunity. Please let them rule out anything else cardiac related. That's nothing to either deny or avoid. A quick EKG and maybe a blood test will put your mind at ease and mine. Let us know when you have any news on that and keep us informed on your progress. Good luck!

sunrise · Member

Hi everyone,

It has been almost 4months since I finished S/O tx. Still having tendinitis in Achilles, using support socks for.work and good shoes. It has helped some. One thing that has creeped up is pain in heart area with palpitations. Kinda scarey, but hate to report to doctor as I really am so sick and tired of tests and doctors. Guess if it continues I will have to report it. Has anyone else had this side effect?

diagnosed 6/14

contracted 1991

geno 1a vl 5mil

treated S/O 12weeks 9/14> 12/14

SVR 12 week post tx!

mallani · Guru

Hi Howard,

Sorry to hear your post-treatment problems.

I hope things settle down. These drugs are so new, and long term effects remain unknown. Best wishes.

Tig · Admin

Hello Howard,

Thanks for sharing your transplant history. It's interesting to hear the experience firsthand. Duane is a long time member and has shared much of his story as well. I'm glad you both have had the opportunity to touch base.

I saw your comment regarding the abbreviations we use here and want to offer you some information on that. There is also some info on adding history to your signature line if desired. Wishing you the best!

http://hepcfriends.activeboard.com/t58862021/forum-abbreviations-link-and-help-with-creating-your-signatu/

Groupergetter · Guru

Hi Howard, as others have said you are not the only one experiencing side effects after treatment (tx) SVR is sustained viral response usually taken to mean you haven't relapsed 12 weeks after finishing treatment. While technically not "cured" closest thing to it. I did the Sovaldi and Olysio and relapsed after 4 weeks. Thankfully now on Harvoni with 17 days to go.

Like you I have had many different issues after treatment. Pains, arthritic symptoms, tendonitis, and headaches. I try not to pay much attention to these but sometimes is difficult. I do take naproxen occasionally before bed to help with sleep. I have a high level of tinnitus which is also very difficult to deal with. Hopefully in time your symptoms will get better. Being so new, it's difficult to know whether there will be long term affects from treatment meds. Even the doc's can't be sure of this. At least you are rid of the virus. Give it some time, try and stay active, and positive. I've found focusing on a hobby and family help.

Take care, and be well.

Drug Out · Member

I appreciate your response. I am not sure what "tx" means, I'm not very good with jargon or acronyms or initialisms. Not even sure what SVR means--I need a dictionary or glossary. I had my transplant 15 years ago and almost immediately went to stage 2, level 2 fibrosis. I was 56 at the time, had been on the list for 3 years, stable enough that I wasn't as needy as some but not well, either. Finally developed liver cancer, shot to the top of the list; got called in one night, x-rayed and put in a bed. They came in twice to say the donor liver "didn't look good," the 2nd time told me to go home. A tiny spot appeared on that x-ray which resulted in me being put on hold for a month while they took follow-up x-rays--the idea was that they couldn't proceed if the cancer had mutated or something. Sent to oncologist who was going to start a sort of chemo but one morning I was awakened to come down, another liver--I said, "I thought I was on hold?" they said, well...no one really thought that was anything, we just had to observe the rules" or something to that effect. Well, that liver was not good either; don't know if the issue in either case was a mis-match or a sick liver. Went home again, a couple of days later called at 5:00 am, get down here now...don't dally around. Went down, got into a bed while I think someone had to go get the liver in another state, not sure. Awhile later, I was prepped, IVs inserted, wheeled off for a 5-hour procedure. But the transplant doesn't get rid of the Hep C, tried the Pegylated Interferon twice, made me very anemic (7 bags of blood in 5 weeks). Then along came the Sovaldi/Oylysio treatment, to which I was a little slow in responding but had no ill effects at all, so they extended the duration just a little bit to be sure I cleared it. Seemed rather undramatic; no bad feelings during or after until 2-3 weeks later when I started having back pain on the left side which was odd, thought should be checked out in case of heart issue. No heart problem. That pain then began to travel around. Then the headaches started, with ear aches. Went to PCP, no results...had a CT scan just to be sure. But the headache won't go away, or the random earaches (which has moved to the other side)...while not fun, hearing it's "normal" has helped because otherwise I'd begun to feel doctors were not going to be any help, they seemed to be at a loss. They scheduled me for colonoscopies, ultrasounds, neurologist...but I believe they're doing due diligence to be sure there isn't anything other than just getting over the meds. I do wish they had told me this might happen, but doctors sometimes don't tell you everything...

Dzdayscomin · Senior Member

You are not the only one that is dealing with these issues, and I'm going to bet that long term outcomes are going to show that there is something significant that has or happens to the body from these treatments, way to many people have said they never had these issues prior to tx and now for some reason we(dr's and other commentators) want to say it's just t he damaged liver causing these symptoms, and it'll get better.

I had some stiffness etc prior to tx a year ago but wholly donuts nothing like I am experiencing these days , i really hope I'm just the random case where these things all fell into place this way.....and I to wou ld love to hear about how many people have done this tx course and are not suffering some of these side effects a year o r so later.

But at least we don't have the Hep C any longer

Best wishes to you, like to know more about your transplant as well as im looking at being up for that procedure around Dec.

Tig · Admin

Hi Howard,

First, welcome to the forum, I'm glad you're here. It's not uncommon to have lingering side effects from any round of treatment. Since you have just finished in December, I would give yourself some time to recover. I took the old triple and know it's different, but it took over a year for me to get back on my feet. We have many here on these newer DAA all oral protocols that are/have experienced some of the same issues.

I'm glad that you have achieved SVR, that's great! A good step in the right direction, right after your transplant of course. You've been through a lot and I think your body is worn out from all the excitement. Give it some time and try to not expect too much in the short term. If your doctors have concluded that there is nothing else wrong, I would do my best to not worry that there is. You may even consider another opinion if you're not satisfied with the information you have received thus far.

I'm including a couple of links to some information. I'm sure you've already gone over most of it but in case you haven't, here it is. The FDA information is for professional and personal reporting of side effects and adverse reactions to any medication. If you feel like discussing these possibilities with them, I'm sure they would spend the time to document everything. These drugs are so new, they are still documenting all of the short and long term reactions to them. It's good to let your healthcare team and the FDA know if you choose.

I wish you the very best and hope these issues diminish and leave "your" building sooner than later! But I feel that it will take some additional time to happen. In the meantime, keep hydrating and eating well. Get out and do some exercise, even if it's just a walk to the corner and back. It really helps to get things moving. I had to take prescription anti inflammatory medication because my joints and muscles were killing me over a year out. If your doctor approves, it may help greatly. Just do your best and keep us informed. Good luck Howard!

"Use with sofosbuvir: The most common (> 10%) adverse reactions reported during 12 weeks treatment with OLYSIO^® in combination with sofosbuvir without RBV were fatigue (25%), headache (21%), nausea (21%), insomnia (14%) and pruritus (11%). Rash and photosensitivity were reported in 11% and 7% of subjects, respectively. During 24 weeks treatment with OLYSIO^® in combination with sofosbuvir, dizziness (16%), and diarrhea (16%) were also commonly reported."

OLYSIO

"FDA Adverse Event Reporting System (FAERS) is a database that contains information on adverse event and medication error reports submitted to FDA. The database is designed to support the FDA's post-marketing safety surveillance program for drug and therapeutic biologic products."

FDA (FAERS) INFO

Drug Out · Member

The thing that seems significant is that prior to the treatment, while still having Hep C, I was very healthy in other ways; rarely got sick, got over things quickly. Now that I'm Hep C-free I can't seem to get over any of these various things, and the timing seems to suggest that not only are they related (having one common cause) but that they cropped up after the S/O treatment. Not saying anything bad about the S/O, certainly glad to be Hep C-free, just wondering if there's a connection. I generally feel pretty drug out, still having headaches/earaches/random aches and pains/tiredness for 2-3 months since the onset. The hospital that did the transplant, for whom I have the highest regard, have said nothing like "Yes, there can be a time of feeling badly." They are having colonoscopies, neurology consults, ultrasounds...but avoiding (seemingly) saying why. My PCP is having nothing to do with it; even the GI I've enlisted as a go-between has little to say. Time is passing, spring is upon us, and I'm going through day after day feeling the same. Am I the only one?

Barnacle · Senior Member

I had/have aches and pains post treatment with S/O. They have mostly diminished now after almost (holy crap!) a year. Most of my issues were arthritis like pain in joints and some muscle pain. There have been several threads about this and the general consensus is that liver disease affects many systems in your body and there is all kinds of damage to repair. My body seems to be doing a fair job of that because other than minor joint stiffness when I have been inactive for a few minutes I am feeling pretty darn good. Hopefully your body will adjust to your new and now healthy liver and everything else will fall in line after a time.

Drug Out · Member

I have had Hep C for who knows how long, diagnosed in 1992. Transplant in 2000, still had Hep C of course which continued to damage the new liver. Tried PegInt/Riba 2x, no luck. Did the Sovaldi/Oylysio, ending dose 12/26/2014. Hep C continues to show "not detected." But in mid-to-late January started having random, varying health issues such as back ache on left side that led to EKG/treadmill, heart fine; pains began to drift around in body. Then started having headaches (which I rarely have), then earaches, general weakness, tiredness, malaise. Doctors seem to be treating all these things as separate unrelated incidents but what I'm concerned about is, are there known ongoing effects of this treatment that fit my symtoms?

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