Hep C Discussion Forum

Butcheeyboy · Veteran Member

RE: EVERY BAD SIDE EFFECT HAPPENED TO ME - TX STOPPED

2oldman · Member

believernmiracles wrote:
I developed aplastic anemia, peripheral neuropathy (severe case),....

Wow.. that's quite a laundry list of problems. Sorry to hear it, but there is some good news anyway.

I've been considering treatment because I have peripheral neuropathy (pn). A story like yours, plus the doctors telling me treatment may exacerbate pn makes me think more than twice about tx.

Good luck to you and thanks for posting your story.

lauralou57 · Senior Member

Interferon can produce many really rough side effects. I know people with HCV that went on treatment with interferon and it damaged their kidneys so they had to stop treatment - one lost her kidneys and had to have a kidney transplant. I also people with HCV who went on treatment with interferon and the interferon damaged their thyroid so they had to go on thyroid medication permanently.

When I was on interferon in 1999 I had a migraine every day. Migraines do run in my family but I usually do not get a migraine every day. I tolerated the ribaviran well but the interferon was rough.

Then, after being on treatment for 4 months, my viral count did not go DOWN, it started going back UP!

So my hep C doc took me off of the interferon and ribaviran.

So please do not be too hard on yourself!

Tig · Admin

Hello and welcome to our group! Could you share some information with us? If you could tell us what your treatment medications are, lab results, etc., etc. would be very helpful when answering your questions and giving advice. I'm going to go out on a limb and say you're probably on triple therapy (which one) or perhaps on a study program. The standard triple therapy medications are all hard on your body. I'm starting my 13th week and feel like I get pulled through a keyhole backwards, twice a day! The side effects are terrible and for me they're getting more intense (worse) each week. I'm so tired now that I have days when I literally have trouble getting out of my chair. I've developed severe vertigo (dizziness) and have fallen down several times, be careful of that one! Hit your head wrong one time and nothing else matters! I'm very curious why your doctor would want you to go out to 48 weeks, particularly after you RVR'd at 3 weeks!! Come to think of it you must be on Incivek, right? RVR after 3 weeks with GT 1a seems to happen more often with that treatment, but anything is possible. Have you ever been on any kind of treatment before? That is most often a reason for extended treatment periods, that and those with cirrhosis. Let us know what's going on and I'm sure you'll get some helpful information. Good luck, eat right, hydrate X2 and be positive!!

m0c0y · Newbie

^^^

I am wondering the exact same thing right now. I am currently on week 13 of treatment and the side effects are starting to really give me problems. My work performance is suffering, massive head aches, extremely delirious at times, can't sleep and intense anger outbursts.

My viral load was extremely low when I started. 107,000. I achieved RVR at 3 weeks. I have genome type 1A. My dr is recommending 48 weeks of treatment. I am pretty sure all I need at the most is 24 weeks. I am wondering what my chances of SVR with 16 weeks? I really want this whole ordeal to be over with

Matt Chris · Guru

Tiff

Thats a great place to put your trust, perhaps you might find his words at Phillippians chapter 4: verses 6,7 of great help

Continue to give your body all the possible healthy foods and so you can to build up your spirit and vision of the future for your immunity system.

You have come a long way Tiff , this is the year 2013 to slay a many of Dragons

Matt

-- Edited by Matt Chris on Friday 22nd of March 2013 06:18:23 PM

believernmiracles · Newbie

Congrats on your good news! It's so hard to wait on the dr's to give you that "official" word. Thank you so much for sharing your experience with me. I remain optimistic, since, from what I can find out, people who test UND at week 4 have better odds than those who don't. I also found a few articles that say people who become anemic during treatment have a higher chance of achieving SVR. I was initially suppose to be on a 28 week treatment plan, but when the Pegasys started doing more damage than good, my dr. and I decided the risks were outweighing the benefits. He says he can't tell me that he thinks I'll be fine in 6months, but he did say it wouldnt' surprise him at all if I was still UND when I come back then. That made me feel a bit better. Thanks for your encouraging words. There's a part of me that just knows everything will be fine. But then there's the other, logical side of me that wants to look at statistics....My only peace is knowing that God has this, and it's entirely in His hands.

hrsetrdr · Guru

Hi Tiff,

Welcome to the forums. I had to stop at 16 weeks(click on the links in my sig), because the interferon was damaging my right eye's optic nerve. I got my 6 month post treatment labs done recently, and I am still UND. As this is "highly irregular" in HCV treatment, my case nurse is reluctant to utter the "SVR" word until after another UND result, in 6 months. I don't have any specific advice, except to keep on believing and having faith in God.

Take care, Tim

believernmiracles · Newbie

Hello everyone! I'm new to this forum, and like many of you I came in search of hope and answers after having to stop treatment at week 16. I developed aplastic anemia, peripheral neuropathy (severe case), was in early renal failure, and started having over-the-top, terrifying, indescribable panic attacks all within a single week. I honestly thought that I had officially lost the last shred of sanity I had left, and I was going to die a slow miserable confusing death due to all the bad things that was happening to my body all at once. I think I came close to going into shock. It was all such a system overload. I was hospitalized for 2 days while I found my sanity and my body started to regroup, and dr. says we have to stop. On the brighter side, results have been UND for the virus for around 4.5 to 5 months. He says all we can do is wait and see and keep faith in the meantime. He did tell me that he had a patient who stopped treatment at 8 weeks, not because of side effects, but because he simply didn't want to continue...and he has actually achieved SVR on such a short treatment period. That gives me hope. My HCV was detected within 4 months of my contracting it, so my initial viral load was extremely low, with no liver damage when I began treatment. he says there is a chance that SVR is still possible in my case, but I remain concerned....Has anyone here ever heard of someone stopping treatment around week 14-16 and still acheiving SVR? I believe in miracles...so for now, I pray, and trust God....It's out of the dr's hands and now placed in His. Any advice? I've been reading about some new drugs that should become available in the coming years...Does anyone know where those new meds stand as of right now with the FDA. Apparently they aren't so toxic to your body and are more effective than the current combination therapy drugs being used. Ideas? Thoughts?? I appreciate any input anyone in this group can offer.

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