Interferon Maintenance Side Effects

[doggone]

I am going to start on Interferon Maintenance and would like to know if the side effects are similar to the treatment?  
I completed interferon/ribaviron in 2004 but did not have a SVR.  I just finished a week of Infergen/Ribavirin and quit the treatment.  It was just too intolerable.  Anyone need Infergen?

[mikesimon]

I can't really be sure of too much these days Scott. Maybe the 180 was worse but it doesn't seem that way. I did 180 for 73 weeks so I am sure I can do a long time on this dose but I sure don't want to. I got labs drawn today so I will see my CBC and LFTs tomorrow and the Heptimax by Thursday. I'm more intested in the LFTs than the Heptimax and that is a first for me. Stay well. Mike

[mikesimon]

Hey Scott, I hope you're doing well. I was hoping that I wouldn't even notice being on 90 mcg Pegasys but it hasn't been that way. I don't notice any difference on the interferon side (90 or 180 - seems the same to me) but the big reduction of ribavirin has made that aspect a whole lot easier thus far - no anemia and I don't expect any. I don't know what 200 mg. of ribavirirn daily is going to accomplish but I am tired of trying to figure it out. The approach seems to be: increase anti-rejection drugs to suppress my immune system and then feed it interferon to boost it. It's just too complicated for me. Mike

[doggone]

Thanks for the information regarding the maintenance program.  I wish I could have tolerated the infergen as I think it works....but I couldn't cope with the side effects and get my ass to work, much less do anything else.

I am planning on moving to Southern Utah in a month, does anyone know of a good hep doctor in St George, UT or LAs Vegas?

[FlGuy]

you wrote 'the only good that I could find from the whole experience was my liver functions improved drastically and stayed pretty good for two years'  I what way was the improvement demonstrated? lab tests? the way you felt? bx, scopes, ultrasounds? I relapsed and I was wondering how much, if at all the, the odometer was turned back by tx.

[Petey7]

Thanks for the encouragement willow. I'm sure my liver is in better shape now than it has been for quite a while. My liver enzymes have been great the whole time on Tx. Monotherapy is MUCH less toxic as far as side affects compared to combo Tx. Hopefully something "new and improved", as the advertisers used to say, is coming soon.

[FlGuy]

Glad your appetite is returning. Given everything else going on, it's difficult to run on an empty tank.

[FlGuy]

While you were cleaning how may popsicle sticks and wrappers did you find?

[NYgirl]

LOL it's not funny.  I actually had to bring up a special garbage bag that I hang on my bedroom door doornkob to throw them in then bring it down to the garbage once a day.

I've gotten MUCH better and am down to two a day.  Now that I don't feel so rotten (except some fever shot NIGHT only) I am eating again (and gainning weight back) so I don't JUST eat them.

I have to be REALLY careful with those pop sticks because my dog doesn't get it and he will eat anything on the floor that reminds him of food.

You know how bad it is to be a fudgicle addict = and there is my one favorite special one that i like and they are SO HARD to find...they sell out really really fast and just went from $2.99 a box to $4.99 ( so it's not just ME).

I tell you I worry about running out - it's sick! ;)

[FlGuy]

Haven't seem much from Beagle.  Last week he said he was heading home today

[willows]

Maintenance sounds a bit easier to do than regular combo tx, I have about three more weeks until I see my new doc and find out what he thinks is the best. I am sorry you became detectable again, when I non-responded to Pegasys, the only good that I could find from the whole experience was my liver functions improved drastically and stayed pretty good for two years.  So I'm thinking if I need to do maintenance every two years until a protease inhibitor is marketed, well, thats what I'll do.  I had a serious, serious time with sx from INF.  I'm hoping smaller doses will not kick me around so much.  Smile, Petey, your liver is most likely in better shape and will work for you a while longer.  Take care.
Willow

[Petey7]

I was on Combo Tx for 48 weeks, cleared at week 12 and relapsed soon after completeing Tx. I am male, 52, 1A. I am currently on about week 72 give or take on maintenence ( 90 mcg. now, started at full dose and only started cutting the dose back after becoming undetectale again on 180 mcg.) and will continue until my current batch of Peg runs out, about 14 more weeks. After cutting back to 135 mcg. I became detecatable again and never did get back to undetectable at that dose so we went down to 90mcg and I stayed about the same ( somewhere around 100-200 copies the whole time.The only side affects I have experienced on Mono therapy are the dry skin patches on face and maybe some fatigue and morning aches, but then again the aches may just be aging also .I think I am also more apt to get sunburn now, the same as on combo Tx. The fatigue could possible be from my lack of exercise since being on therapy to begin with. I guess the answer is it is a piece of cake compared to combo Tx, even though I had a very easy time (relatively) on combination Tx. Best of luck.

[NYgirl]

(Sorry side post here)

BEAGLE...where are you are you DONE for GOOD FINALLY?

I cleaned like a lunatic this weekend to find my computer discs, the only good thing is I threw out about five big leaf bags of old "stuff"...but no discs.

There is only one place left to look - of COURSE...nightmare land of a closet...but I will do it since I have to.  Maybe eventually I can talk on the weekend and find out how it feels to be DONE.

At least my bedroom is ready for painting now - I threw out so much it's almost empty.  From a great big clutter room to sparse...wow no wonder I am sick there was so much STUFF to catch dusts it's beyond words!

:)

[Karay]

I failed the 1st time around (about 2 yrs ago) and have taken the infergen/riba route this time.  NOT easy however my v/l went from 34 million to undetectable for my 12, 24 and 36 week results - I'm 7 weeks away from finishing (YEAH!!)

[doggone]

I will look at 'Alina'.  I do have insurance and it took 4 months to get the approval for the infergen treatment.  The new order for interferon was placed this past Friday but I haven't heard from the pharmacy as yet.  I was wondering if the reduced dose and not having to take the riba alleviates most of the side effects??

[Upbeat]

A phase II, double-blind, placebo-controlled clinical trial of Alinia as oral monotherapy in patients with chronic hepatitis C was initiated in early 2005 at the Romark Digestive Disease Research Center in Egypt. The patients were infected with HCV genotype 4. Approximately 10% of the patients had previously failed pegylated interferon and ribavirin combination therapy.
An interim analysis of the first 20 patients enrolled in the study showed that 50% of patients receiving Alinia administered orally as one 500 mg tablet twice daily with food had undetectable HCV RNA in serum at the end of 24 weeks of treatment compared to none of the patients in the placebo group (P=0.03). Importantly, the drug has been well tolerated by the patients with no significant side effects. The study is continuing with patients being followed up to evaluate the durability of response off-treatment

The Good thing about this drug is you can get it now.

                                                          Ron

[willows]

I also failed tx two years ago and am looking at the possibility of Infergen vs. maintenence.  If I have my druthers, I vote for maintenence, but have heard that it is an "off-label" use of interferon.  Did your doc say anything about this and do you have ins. that is paying for your maintenance?  I go to new doc in three weeks and am going crazy speculating about what options they might give me.  I am going to ask my doc about adding Alinia to my maintenance if given the option, it is an interesting drug, not too many sx, research it if you can.  It is made by Romark Labs and there is limited info on their web site.  Sounds like the perfect combo to me, smaller doses of IFN and an anti viral with less sides than Riba.  Good luck to you.  I will be reading and watchin for how you are doing on maintenance with much interest.
Willow