Considering re-treatment

[Lill]

I am new to this board but not to the treatment.  Geno 1a with persistently normal ALT, 46y/o F, six months post Peg Intron (a responder).  I had to stop treatment after only 6 months due to severe hearing and balance problems.  I have permanent hearing loss (mild), tinnitus (severe) but the balance issues from cochlear damage have resolved.Obviously, the dragon is back.I expected no less.I realize with the minimal damage I have coupled with apparently mild disease,that I could probably die with and not from this.  However, the thought of being a cootie carrier is abhorent to me and I would like to once and for all slay this beast. End stage liver disease ain't pretty and I hope to never have to go there. Since I was negative at 10 weeks the last go around but couldn't stick with it, I know I can do it again.  I need to have something to show for the seemingly permanent damage I have already incurred.Has anyone on this board done both peg-intron and pegasys that may be able to compare the side effect profile for me?  I have spoken to a few who have done one or the other but not both.  I am hoping the molecular size of Pegasys will be of benefit by sticking to the organs it needs to and leaving my nerve cells alone.  Any advice? Lil

[mikesimon]

I've done both and find Pegasys much easier to tolerate than Pegintron. Just my experience but the difference is quite significant. Good luck. Mike

[Lill]

Thanks for your input.  Can you tell me in what ways the sides seem milder to you?  Do the neurological sides seem milder? Things like headache, brain fog, fatigue, etc? Lil

[CARUU]

I was interested to read your comments about hearing loss.  Is it a result of tx?  I have hearing loss in my left ear that has only been explained as "nerve related".  It happened overnight and no cause was ever determined.  Also have some tinnitus.  I have not started tx yet and wonder if the hearing loss could be related to hepc.  Any thoughts?? caruu

[susan400]

I've done both Peg-Intron and Pegasys.  Although my sides were much less on the Pegasys, it did not work on me, my viral load and LFT's actually increased.  However, a lot of people do great on Pegasys with minimal sides.  Susan400

[mikesimon]

The flu-like symptoms have been much milder. I don't have the nausea and headaches that I did with Pegintron. The blood chemistry is similarly affected by both. I've had the same problem with hemolytic anemia that I experienced with Pegintron. But, overall, I feel much much better on Pegasys and I am taking a bigger dose of ribavirin than I did when I took Pegintron - 1000 mg as compared to 800 mg. If your hearing loss is a result of tx I wouldn't expect that Pegasys would be much different in this regard. I believe someone on this board - britgirl - did Pegasys and experienced hearing difficulties as a result. I hope this helps you. Mike

[britgirl]

I took Pegasys which caused hearing loss in my left ear and tinnitus. It also gave me hypothyroidism. Nothing I can't live with, but Pegasys can cause permanent damage too.

[Lill]

Thank you all for your comments.  I was a walking physician's desk reference of side effects with the peg intron so it is with great trepidation that I even consider this fight again.  The hearing issues were the worst and still linger 7 months after stopping, but at least my world isn't spinning anymore.  Maybe with a little luck I can weather treatment again.  I had the symptoms right away with the peg-intron so maybe I will try to see if I can wade in once again.  If I hear that freight train in my head after starting, I'll just stop. Nothing ventured, nothing gained. Caruu, I did not have hearing problems before treatment.  Just during and now after.  They say drug induced tinnitus (ototoxicity) actually continues to peak for about six months after the toxin is removed.  Perhaps I have turned the corner.  Lil

[layla]

When are you going to tx again? Will you get a VL? LL

[Lill]

I have to do the unimaginable first LL: I must find a way to grow some cajones. (sorry, I don't know how to say balls in french).  If I do this again, I think I will wait til the holidays are over.  That will give me a couple of months to once again get therapeutic on an antidepressant.  Ick.  Life without meds has been great. I finally have my energy and drive back and here we go once again.  Like I said, Ick.  How do you say ick in french?  I will have to get all my labs and quantitative VL done again since all I did last week was LFTs and the qualitative VL.  I think I have plenty of time to grow those things.Lil

[layla]

Couilles! I don't know about ick. After the holidays is a good idea. Get togethers and parties stress me out while on tx. I guess you must have had depression on the last tx. I read that so many people do. I haven't had it. I have gotten weepy once or twice early on but not for awhile. I've been lucky so far. LL