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Old 02-23-2008, 11:52 PM #21
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Default Interferon

Hi There, I'm a 40 yr old female (41 in a few days, but who's counting, lol), amyway, I am on interferon for therapy, as are a whole host of others. I was raped last year by an IV drug user and contracted hepatitis c. I was fortunate in that I tested for anything he might have given me about seven weeks after the incident just to be safe, and I was positive for Hepatitis C. But at least I caught it early.

But moving on, I don't really even think about that stuff anymore, and quite honestly, I just gave it as background. I've been treating with interferon and an antiviral for about twenty weeks now, and I am still not certain whether I will have to go 24 weeks, or 48 weeks. I am on a pegilated(sp)? interferon, which is peginterferon alfa-2a, or as the drug company likes to call it, pegasys. It's a Roche product I believe, and I take 180 units per 0.5 ml, subq per week. I think I got that right anyway

What I can tell you for SURE is that after the very first shot, I had horrible pain in my joints, and I soon became aware that I had rheumatoid arthritis that has gotten worse with each shot. I've also had nausea and vomiting. There are many, many users on my medical help board who are taking some type of interferon or who have taken some type of interferon, and they report everything from multiple sclerosis, to lupis, to diabetes, to complete destruction of their thyroid. Rheumatoid arthritis is an oft-mentioned malady as well. The common denominater in all of these issues always appears to be that they are auto immune issues in one way or another.

So many of you talk of having taking Beta for your diabetes for a period of years. You know, I didn't even know that Beta was an interferon based medication. I am going to tell my best friend, who takes the medication for her diabetes, because I sure don't want her to end up like me.

Twenty weeks into treatment and I have rheumatoid arthritis that I'm afraid may last post treatment, and I have tremors in my legs that I can't explain. They are getting worse, and since I can't control them, they are difficult to hide from others. Often I drape my coat over my legs. But they just seem to jerk around for no apparent reason. I'm hoping it will resolve after treatment...
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Old 02-24-2008, 12:41 AM #22
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I can't help you with the long term question AMN, sorry.

I tried the "interferons" back in the late 80's as part of a drug trial here in OZ.
I suffered rather nasty migraines for the first time in my life, while I was on the trial, so that put an end to me going on those.

When I went to Copaxone in 2001, I had different... and even nastier side effects. I ended up taking fits and being admitted to hospital.

Needless to say I am now drug free, and have been since the Copaxone incident.

Big hugs coming your way AMN, and hope you find peace of mind soon.

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Old 02-25-2008, 05:58 AM #23
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I took Copaxone as a first choice, mainly because i wanted to avaoid the flu like symtoms (expericence had taught me that fever affects my symptoms very badly). I was on copaxone for about 5 months with no side effects other than injection site itchiness- then all of a sudden i had a massive and very nearly fatal anaphylactic reaction, very scarey!


I changed over to betaferon a bit over 4 and 1/2 yrs ago, I did get the flu like symptoms to begin with- but this was well managed by taking tylenol about 1 hour pre the shot and having the shot late at night to that i slept through the worst of the symptoms. Gradually over the next 4 to 6 months, the flu like stuff eased off and now is not an issue at all.



The only other side effect i have had is injection site reaction. Each injection site becomes red and slightly inflammed for approx week to 10 days, so my abdomen always looks red and blotchy. These reactions are minimised by making sure that there is not a droplet of medication on the needle prior to administration (this was a suffestion of the MS society nurse- she believes that direct skin contact makes the reactions worse
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Old 02-25-2008, 09:39 AM #24
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Haven't read all the others but it's been 5 years now with no ill effects from interferons. Can't say I love them, but no issues.
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Old 02-25-2008, 09:45 AM #25
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Hey Cindy Lou Who! I recently quit taking my Rebif because even on it I too went downhill and was diagnosed SP. I am currently fixing to give Tysabri a go and see how that works for me. I too have wondered about the long term issue as it doesn't seem like I can make it thru the "short term!!"

For those who questioned the length of time on The chemo drugs...the simple reason for that is it will chew your heart valves to smithereens if you stay on it more than the recommended doses!

back to Cindy...what are your side effects on the Copax? Doc had mentioned that to me as well if the tysabri wasn't good for me.
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Old 02-25-2008, 11:13 AM #26
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I just started Avonex last week. I am wondering besides the ugly Flu like effects, does it affect your skin, hair, weight....those sorts of things? Just wondering.


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Old 02-25-2008, 12:28 PM #27
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You all realize that Nappy asked this question in May of 2007???? I don't think she is on any DMD now.

It's still an interesting subject, though.
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Old 02-25-2008, 12:33 PM #28
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Quote:
Originally Posted by SallyC View Post
You all realize that Nappy asked this question in May of 2007???? I don't think she is on any DMD now.

It's still an interesting subject, though.
ROTFL! I thought she quit but then I thought "Well, maybe she went back on them?" ROTFLMAO!!!
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Old 02-25-2008, 04:26 PM #29
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Hee hee! Almost a year old thread... Interesting subject though.

Beta-1b - Betaseron. Made from e coli...
Beta-1a - Avonex/Rebif. Made from chinese hamster ovaries.
COP-I - copaxone. Chemically derived.

Do any of these work? I don't know. I don't take one, and at the rate I'm progressing, MS is the least of my worries medically. I've had it for 20 years.

I remember vividly when beta-1b got FDA approval in 1993. We were shocked (a group of MS'ers all over the country who were following the trials closely). A 30% chance of a 30% reduction in relapses and lesions... It wasn't a miracle drug. Far from it.

I still entered the lottery for beta-1b. Drew such a high number it was an additional 15 month wait from August 1993. I lost interest.

My bets were on Dr. Ted Yednock's work with monoclonal antibodies. Nope. Not then. I've heard the first two letters of TYsabri, however, are the initials of its founder...

Tom
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Old 02-25-2008, 08:32 PM #30
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How long is a long time?

snicker* Is Cindy on any of them? Only her Dr. and the drug company might know. snicker* (she just might slap me hard for remembering all of that story. Hand over mouth. snickers* more)

I have been using Rebif for 6 years. Do you think it has effected me?

Ah shut-up the bunch of ya now! (the masses snicker*)
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