Hep C Discussion Forum

sunrise · Member

RE: 7 1/2 months after Sovaldi / Ribivirin

Rubye · Senior Member

Hi Sean, My situation is a lot like your's. I had Hep C for around 40 years and am 1a but I treated with Sovaldi/Olysio for 15 weeks and had a miserable time of it. I often wondered why I was having such a hard time when others were saying how easy these drugs are and think it indeed may have been having had the virus for so very long and having cirrhosis. I'm undetected now after 7 weeks since eot.

I kept feeling miserable for a good 3-4 weeks after treatment and then started feeling better but not like myself before treatment. As much as I push myself to walk each day, I can still only walk about 8 blocks in a day. I had been thinking that this was the way it was going to be now and was telling myself to accept this low energy and painful way of being as this is how my life is from now on. However, this last week I've had a bit more energy and again have hopes things will get better. I don't know though. It seems like the arthritic type stuff is not going anywhere because I think I had so much inflammation during tx that the damage is permanent. Regardless, I keep pushing myself because I figure if I can get to walking a lot again then the fatigue will lift. Who knows.

I'm also older - 67, and have cirrhosis, two things that don't help any. However, I would definitely do it all over again. I hope things come round for you and that you get your old energy back before too long. Take care.

beingsassy · Senior Member

Swampy,

i was also on Sovaldi and Ribavirin but for only 12 Weeks. I had the disease at least 20 years and this was my first treatment. I didn't start feeling like my old self for about 6 mos after tx. But I did eventually start feeling better. Take care, drink lots of water, eat healthy and you will feel better. I just kept telling myself that this too will pass and it did. I never felt sick from the disease but the ribavirin kicked my butt. But in the end I was SVR and the meds were worth it. We all heal in our own time so just take it easy and you will feel better. I can't promise you cause everyone has a different experience but it's normal for you to still feel sick until the meds are completely out of your system. Six months is a long time to be on ribavirin so it will take a while for the effects to go away. Keepng you in my prayers.

gigi

mallani · Guru

Hi Sean,

Anyone who has had chronic HepC for 30 years will have trouble 'bouncing back to my old self'. For me, I couldn't remember what life was like 30 years ago. Remember you're older, and HepC affects a lot of tissues.

Hepatologists want you to tell them you feel wonderful after SVR. With the new treatments, that may be the case, but anyone who had to endure Interferon/Ribavirin will know life suddenly doesn't become wonderful.

Keep your expectations low, and be thankful you won't die from liver failure. Cheers.

Zlikster · Guru

Hi Sean,

30 weeks since you have finished treatment? You should be back to your pre treatment energy levels soon. Your blood levels are all ok? Hgb/RBCC? It takes a lot of time to flush Riba from your body. In my experience, for first 2 weeks EOT i was still like on tx, after that it started to get better rapidly. Psychologically i still find myself anxious have i taken my pills on time, do not know how to call it. Phantom pill alarm? :)

Look on the bright side, at least you skipped PegInterferon in your treatment. Belive me, i would take 5x200mg of Riba pills for 1 year rather than have a single shot of interferon ever again :)

hope you gain your energy back soon!

Cinnamon Girl · Guru

Hi Sean, just want to welcome you to the forum!

I understand your concerns about not bouncing back post treatment, and it`s something a lot of people experience. We all expect to feel amazing within a short space of time after treatment has finished but in fact that`s often not what happens. Ribavirin comes with some very unpleasant side effects even though it`s still such a valuable addition to many treatment protocols, and it does takes a good 6 months to clear from your system.

By the time I finished my own 24 week treatment with Peginterferon and Ribavirin I felt a physical and emotional wreck for weeks afterwards and it was about 6 months before I started to feel more energy coming back and I continued to recover for quite a while after that. So basically I agree with what Tig said, that you really need to give it more time. I know it`s easy for us to say that, and I do understand how frustrating it is for you.

Getting through a difficult stretch of treatment and reaching SVR is a big achievement and you should be proud of that, so well done!

Tig · Admin

Anytime Sean, that's what we're here for! Good luck, it will get better but takes time. Hang in there....

Tig

Swampy · Newbie

That is really good to know, I've been starting to think that I am going feel this way permanently.It gives me inspiration to keep working through it. Thank you.

Tig · Admin

Hi Sean,

Welcome to the forum my Florida brother! Really glad you introduced yourself.

The symptoms/side effects from HCV and treatment alike can have some long term effects. I'm also having issues well over a year after EOT (12/14). Even though you believe you had no ill effects from the disease, studies will prove that you likely have one or more "Hepatic manifestations" from the disease. You can use the search function above and find more info on it. Things like the chronic fatigue, joint and muscle pain, arthritis, the list is long. So while you think you made it 30 years without problems, you may want to revisit that idea.

The good news is you will likely see improvement over time, but it won't happen overnight. The Ribavirin is also another culprit in getting back to normal. It took an easy 6+ months to clear my system and I had issues with shortness of breath, fatigue, rashes, moodiness, etc., for months after that. It's not a pleasant drug to take for many reasons, but it does the job it's meant to do pretty well. When the day comes and it will be soon, we won't have to deal with these types of issues anymore. We're seeing less and less of it now but it still holds a purpose, especially for those that still are taking the old Peg IFN protocols.

I'm sure you'll hear from others here, we've got a great group. I hope to see you around and want to congratulate you on making it through Tx and achieving the coveted SVR! Good luck...

Tig

Swampy · Newbie

I believe I carried hep c geno type 1 for 30 years. I never had any ill effects from the desease. I completed 6 months of Sovaldi and Ribivirin 30 weeks ago. I had a pretty rough time with it especially at the end. I was successful in killing the virus. I had expectations of "bouncing back' to my old self after a month or two, I was wrong. Even after all this time I have some days where I feel exhausted or a lack of energy along with a shortness of breath. Although nothing like I experienced during treatment. All my bloodwork and cardio is fine. I just feel like that crap won't leave. I am wondering if anyone else out there has had a similar experience. I have even begun to doubt myself, but I know am not back to my old energy level.

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