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Avatar universal

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?  
Best Answer
446474 tn?1446347682
Are you saying that you have had no viral load for 12 weeks after stopping treatment?
Or that you had no viral load at week 12 of treatment?

Thanks.
Hector
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Avatar universal
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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1 Comments
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?
Avatar universal
Might add, my hats off to all the predecessors that went before us and had to endure those very outdated toxic drugs of yesteryear.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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Avatar universal
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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Avatar universal
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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Avatar universal
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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Avatar universal
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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Avatar universal
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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Avatar universal
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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1583549 tn?1308749462
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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683231 tn?1467323017
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
Helpful - 0
Avatar universal
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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1583549 tn?1308749462
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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683231 tn?1467323017
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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Avatar universal
Oops, I meant for Nov & Dec for Sovaldi and aolysio.  The Oct (Harvoni was Oct 2014.
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Avatar universal
Lynn, wasn't that supposed to say 2013.   Pat
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683231 tn?1467323017
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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1583549 tn?1308749462
I am not familiar with the drug Olysio/Sovaldi combo.   Is this similar to Harvoni???
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Avatar universal
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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Avatar universal
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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Avatar universal
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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317787 tn?1473358451
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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Avatar universal
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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Avatar universal
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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131114 tn?1380083190
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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