Gamma Interferon Question

[Magnum]

My doctor wants to know if I'm interested in the Gamma Interferon clinical trial. The only disturbing comment he made was that the side effects are worse than the traditional Intrerferon & Ribavirin treatment. Anyone have any input or experience with this treatment?

Thanks,

Magnum

[Magnum]

Thanks for taking the time to respond. I will make a decision based on my recent test results when I see the doctor on the 14th. If I'm not progressing at all, I will most likely wait because of my work schedule. I'm an entertainer and it's hard to entertain when you feel like going to bed. I'm also worried that if a drunk in the audience gets under my skin, I may react in a way that would reduce his chances of standing up, and see him lying prone on the club floor. There's a lot of things to weigh before diving into this. I was very fortunate the doctor said, in the fact that I never needed anything to qualm my psychotic freakouts while on treatments.

Magnum

[Southernboy]

Hi magnum,

Was online and caught your question on gamma interferon.  I have been on this since November 2003.  Here is my schedule:

Interferon Gamma 1-b (Actimmune),3 times/week, MWF, 100 mics.
Interferon Alfacon 1 (Infergen),7 times/week, MTWTHF, 15 mics.
Ribavirin, weight based, 7 days a week, started at 600mg. morning and 600mg evening.  Am on reduced dose due to anemia.
Neupogen, 150 mics, 3 times/week, MWF.
Procrit, 80,000 units, 1 time/week.

I was also on Peg/Riba combo before this tx starting in January of 2003.

I have found the sx to be more difficult then the Peg/Riba combo.  This could be because of the tx, the length of time I have been on various meds, or the fact that my RBC levels are so low (Procrit does not seem to work well for me).

I have severe muscle cramps and bone pain (could be from the Procrit, I have intermittent fevers and rigors, I am very limited in the energy department, I can only eat periodically and have a hard time keeping anything down (have lost 55 lbs).

I know this must sound like a lot of fun to you and you are looking forward to trying it.  There is only one thing I can say to you.  IF IT WORKS, IT IS WORTH IT.

Many of my sx may be due to the extent of my liver damage.  The sx of the gamma are not that severe, however, when taken in combination with the alfa interferons they seem to enhance each other.  This enhancement seems to take place at the antiviral level also.

It is not that bad.  I would try it (on the advice of your dr) and see if you can tolerate it.  Let me know if you would like any other information or....encouragement........(sorry, had to stop laughing).

Best to you and all,
Steve

[Magnum]

Thanks for the response. I'm in Las Vegas and although the city is very rapidly growing, the accessibility to drugs and medical advances unfortunately are not like CA or NY. However, the doctor is scouting for a trial for me. I have very mixed feelings about all this. I went through three brutal treatments with no response and I spoke to one doctor who in essence said "If it's not broke, don't fix it". I think what he was trying to convey was that if I'm holding steady, why suffer? I will give this some deep thought but I would like to see some results first before once more subjecting myself to torture, temper tantrums and the like...

Magnum

[Nann]

The e-mail address that I reached Miles on in March is
hepc@mkandrew and he responded with that address.  I just tried it and got the beginning of his blog but no more than that.  So I guess he is still working on it. At that time he said he was not yet on gamma.  I don't know if he started or not.

[susan400]

I am starting on Gamma 3 x a week and the Infergen daily + Riba next weekend.  Heck, I've already tried everything else without getting undetected, I might as well try this, too.  I've been trying to get Miles email address.  My computer lost it's functioning capacity for a few days and I lost all my email addresses in Microsoft Outlook when I got my computer up and running again.  Also, I lost all of my favorites and had to search everywhere to be able to add some of them back in again.  In that process, I lost the web site for Miles.  I tried the one that was listed above, which I thought was where I always followed his blog before and now it seems all different. Maybe he's updating it again, but I couldn't get into his blog to read anything.  Anyhow, I have no idea how I'll do on the Gamma.  I've tried Infergen several years ago and at that time I was doing the daily 15mcg for 1 month and then put on 3 x a week.  That was the standard routine back then.  Every time I've treated, I have had just about every side effect imaginable.  I'm used to being that way at this point after treating 5 different times.  I know what to expect, I don't like the sides, but I'm used to it. Some people get no sides, I am not one of those people.  God Bless.   Susan400  www.bystillwaters.net

[Nann]

I was supposed to start three-times weekly injections of gamma this spring as well as the one shot of peg, but my doctor suddenly decided to wait.  The nurse said he wants the FDA approval.  Gamma interferon is called Actimmune and is produced by Intermune in Brisbane Ca. It has been used successfully for reducing lung fibrosis.  However, the results were not the same for liver fibrosis in the trials. I have learned about it by searching the Google site.  The address for the home page is www.actimmune.com/wt/act/home.  Also, Miles Andrew was supposed to go on it and his website is www.mkandrew.com/Miles. He will e-mail you.
    I don't know how strong its side effects are and the nurse said most people say it is not bad. Southernboy is on infergen, peg and ribavirin, I believe, and he can describe what he thinks about it. I have never got it straight if actimmune is the same as infergen or not.  
    I have a months supply of actimmune in the refrigerator since March.  It costs $75 with insurance and is only from Priority Pharmacy.  The nurse in my doctor's office said that most insurance co.'s are not approving it.  But Intermune has a program to help in that case.
    If I started it, I could tell you about sides but I was not given the impression from the doctor or nurse that it was that bad.  Of course, if ribavirin is added that will be the difference.  By the way, where are you located--I'm in So. Calif. and my doctor's in Pasadena.    

[itsnotover]

I heard different information.  Saw my doc last week (I am currently in a different trial)  He was very excited about the gamma inf - if used in conjunction with peg inf - each one is FDA approved sep - but not together for combo therapy - but word has it thru the industry doctors saying that these two together will be better of course with the riba.  I questioned the sides and he said, to his knowledge they were less (for the gamma).  He is also hoping that by the beginning or middle of next year these will be approved.  He felt this very positive in my case. Hope this helps.