Side Effects - Suggestions and Cures and Concerns

[NYgirl]

It seems there are a lot of people that are new to or deciding on treatment so I thought perhaps we could do a thread for them on some cures to the things they will be experiencing.

While we don't know what will happen to anyone we can advise from our own experiences.

I know I've had really ODDBALL things happen (to the fact that I gave away my brand new antipersperant yesterday because quite simply I do NOT sweat at ALL any longer LOL) and have come running in here for help. I thought maybe it would be easier this way.

So I'll start with some sides and things that have helped.

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The Infamous RIBA RASH

Compared to the side effect everyone is always worried about (shot night) this seems small however my body is completely scarred from the itching before I found a solution.

riba rash is little tiny bumps that start out very very small and then  begin to itch as if you have chickenpox. in fact that is what I think of them as. If you itch them alot they can get infected and then scar. Yuck that is what happened to me.

I found that using a GOOD moisturizer (such an Gold Bond Extra Strength Tiple Action Relief for Dry & Itchy Skin in the green bottle with a red top) has worked WONDERS. But you must realize the most important thing is to moisturize CONSTANTLY = when your body is covered constantly with moisturizer it seems to kill off the rash. Doing it once won't work.

As the treatment completely and totally dehydrates us drinking water constantly and moisturizing repeatedly is a NECESSARY thing to

Next.......

[strator]

Welcome- Sounds like your doing pretty well and thought tx out before you began. I'd hoped to save up to insure against not working through fatigue level but well... I'm still working construction type stuff at least a few days a week. I actualy feel better when I'm at work usually. It's great that your posting positive and doable reactions to tx. It was suggested to me my first week or so on here just what you said..that it provides a balanced look for those preparing for possible tx. Some are not as fortunate with lesser sx but the one consistent thing about this disease and tx seems to be it's inconsistency nto how people react. One note of  advice: I didn't start paying attention to sx like the rash or mood swings until I started experiencing them. Sometimes sx have a way of popping up even temporarily when you least expect it. Now I try to keep notes about tips on handling sx even if I haven't experienced them yet.
Best thoughts out your way and keep us posted on how your doing-even if it's just to let everyone know your your doing well.
Don

[lionesss]

Hey, I heard a rumor that they were considering droppping the 24 week course for 3a down to 16 weeks, Studies are currently been done.  I was offered to have my PCR done at 4 weeks to assess if It was likely that I would respond by 16 weeks (out of interest sake, as not yet approved) I declined as I dont want to get a bad reading which could mean nothing but zap my spirit and motivation.

[lionesss]

Thanks for your reply.  Yes, I am hoping I cruise through the rest of it too. I am a genotype 3a so I am on the 6 month course.  My HB has dropped from 135 to 131 last check (values seem to be different here in Australia). So, so far so good.  It seems hemolytic anaemia is a real risk.  I am more worried about becoming neutropenic.  I was so worried about fatigue levels that I saved up some  money and quit my job! (I had a physically and mentally demanding job) So maybe not working and slowing my life down has helped too.  I am still at uni though.  It seems the majority of people on this site are still working, I think that would zap the energy somewhat.  I read on another thread that someone had right hip pain.  That is wild, 'cos for the first few days that is where I experienced pain, What is it with that site?!  It felt like a deep bone ache.  I thought that was where my crazy immune response was getting mobilised from.  I have just got online at home, so I am very excited about that.

[lat36]

Hi Lioness, there's a lot of useful info - and humor - on this forum, I hope you get as much out of it as I have. I'm on shot 45, and although there have been some rough patches, it hasn't been as bad as it could have been (or is for some). It affects different people different ways. You've still got a while to go though - not sure if you're on for 24 or 48. I started to notice my energy dropping fast a few weeks after starting from anemia. I started on AD's for the first time after 7 or 8 months of tx, never had prior problems with depression either, have to say it has been much more tolerable since then. I've had most of the side effects you hear about, but not badly. Hope tx continues to go well for you.

[PKCO]

You want to know why treatment was reduced from 48 to 24 weeks ?  Same exact reason testing went from 24 weeks to 12 for geno 1's. Follow the money.

3's have a very good SVR rate. 80 plus %.

It was the Europeans who did the big study first illustrating a small  difference in SVR rates by treating 2's and 3's for 24 instead of 48 weeks. Other studies have been done since that support this finding. That said, whenever you reduce tx time or set conditions and target dates for clearance you automatically exclude some people from being successful who otherwise would have been if allowed to continue their tx.

Best regards,
PK

[GoofyDad]

I rant once and a while myself about the lack of stats and  national/global database. I think it's an issue of collecting the data in controlled environments, as with studies. As soon as you let clinics and practices submit uncontrolled data, your database becomes tainted and scientifically speaking, invalidated.

Kalio, I have a feeling that treatments are cumulative. My doc likes to think of interferon therapy being a matter of 'training' the immune system. Thus after a relapse, one may be half way trained, making the second session more effective than the first. Note the link Cuteus posted on controlled interuptions. That strategy called for back to back treatments, withdrawing the drugs when un-D was reached. Older study though, and the technique didn't seem to get any traction.

Do you have a source on EU treating geno 3 for 48 weeks? Everything I'm finding points to 24.