Finished Sovaldi/RIBA 1 year ago, still feel lousy

[GrammaSue]

Hi, this is my first post. I was diagnosed with HCV genotype 3a in Jan. 2006. Began treatment with Interferon/Ribavirin for 24 weeks, virus undetectable at week 4, but relapse after completion. I did a second treatment of Interferon/Ribavirin with a higher dose for 48 weeks. I had problems with blood counts & I got shots of Neupogen which caused bone pain.

Again, I cleared at 4 weeks, remained undetectable throughout, but relapsed when treatment stopped. There wasn't mush else to do, so I just took good care of myself and waited...

Began Sovaldi/Ribavirin in 2014 for 24 weeks and have maintained a SVR! Cured at last! But...its been one year since I finished treatment. I feel lousy. I have 2 primary issues: constant headache and neuropathy in my lower extremities. My PCP is very "anti-drug" which is ok, but this is ridiculous. NOTHING takes my headaches away - Ibuprofen & Advil do nothing, so I suffer through them with ice packs, hot packs, massage, etc.

Pain from neuropathy varies; some days it's mild, but other says it's unbearable (and I have a high pain tolerance). I take gabapentin 100 mg. three times a day with no relief. Can someone tell me if I'll ever feel well? I don't think I'd even recognize it. I'm open to ANYTHING at this point. Help!

[KimInTheForest]

Hi GrammaSue. Welcome to the forums, and congrats on finally being cured of HCV - although I know the thrill of that is diminished when, 1 year post-tx, you still feel lousy. Quite a few of us are in that boat. Many theories floating around about the unexplored consequences of rapid removal of virus from body, possible effects on immune system, the impact of the drugs themselves, etc.

I am afraid I don't have any good suggestions for the headaches or neuropathy. But I am sure others here will. There is also a search function on these forums (located top left on my screen, on a menu bar). You can plug in "neuropathy" and find lots of other people posting about it - many of them developing it post-treatment.

You are not alone with post-treatment health problems lasting so long after treatment.

kim

[GrammaSue]

Thank you, Kim. Overall I am feeling better. I appreciate the welcome!

[KimInTheForest]

Pain from neuropathy varies; some days it's mild, but other says it's unbearable (and I have a high pain tolerance). I take gabapentin 100 mg. three times a day with no relief. Can someone tell me if I'll ever feel well? I don't think I'd even recognize it. I'm open to ANYTHING at this point. Help!

Hi again, GrammaSue. On another forum I am on, there has been quite a bit of discussion of B12 deficiency causing peripheral neuropathy. Not sure if that is the type of neuropathy you are experiencing. But peripheral neuropathy is an almost universal symptom among people with serious B12 deficiency (i.e., pernicious anemia). Have you had your B12 level checked recently?

best,
kim

[GrammaSue]

No, I haven't had it checked. Thank you for the info!

[kimharvest]

Me too gramma! Over a year now and I am not functioning normally. Very little energy, confusion, high blood pressure, tiring easily and worthless after 5 pm. After being in some health limbo for 5-10 years, the last 3 a deathlike existence, then 4 months of horridness from Sol/RIBA, then a year of feeling barely alive. I asked for a Epstein Barr Virus test run and I had mono. Now six months of that. EBV may be the hepc culprit but it amazes me that after the bombardment of the cure, how could that spawn a release of a connected virus? Plus that can become chronic. It is hard. Constantly bolstering ones moods trying to overcome daily the worrying, pain and deprecated life.we are all heros!

[AussieRosa]

KimHarvest, I tested positive for EBV many years ago. Since EOT I have suffered from fevers, hot sweats, muscle pains etc etc. I'd like to know more about what you're saying. Do you have any links or more info you could provide on this?

[Shaphere]

No, I haven't had it checked. Thank you for the info!

Hi am new to forum sorry I am not exactly sure if I am using it correctly. Been on sovaldi second week in.  I have no side effects yet.
I feel like I am counting the days waiting to feel something. I don't see doctor for a month to do blood work. Is that odd?

[GrammaSue]

I wish I could answer you, but I can't. I had been through 2 rounds of IFN/ Riba and was nearly on my death bed when I began Sovaldi.

I can tell you, however that I had blood tests every week for the first month along with weekly doctors visits. So yes, that part seems odd.

[Lynn K]

Hi Shaphere and welcome

What are you taking with Solvaldi? Solvaldi cannot be taken alone. What is your genotype? If you are taking Ribavirin I was having my CBC checked weekly as ribavirin can cause anemia (low RBC count)