Effects from long term interferon use?
 

Hi all, I'm wondering if anyone has experienced any effects from several years of using any interferons. Any input is welcome. Thanks.

Hi AMN.

I was only on Avonex for less than a year, but all the effects I had were bad..:p I presume you are asking about bad effects, but maybe not?

How long have you been on your particular poison and what good effects have you had?

I'm really wondering if any of the ABCRs are really helping at all. It seems that they only work for people with early onset RRMS and not people who are further along, like me (SPMS now). And we all know that early RRMS heals itself and nerves re-mylinate..right...so maybe it's just the natural way of RRMS and not the meds at all.

For instance, I was in a 17yr remission between my 1st and 2nd exacerbation, without Meds.(they didn't have any back in the dark ages).

So, anyway that's my feeble thoughts and I realize that I really didn't answer your questrion..:rolleyes:

I just wanted to say I was on Beta for about 6 yrs and had no problem after the initial flu stage.
I then became allergic to the interferons.. But as soon as I stopped it no long term effects.
Hope that helps

Geez Sally, it's all so familiar. 10 years between 1st and 2nd for me, Beta first, and it beat me up. Now Copax and I feel like I've gone downhill since I started it.

Another friend of mine has recently had a lot of blood and bone marrow issues after nearly 14 years of Beta and short trials of C & R. I wondered it anyone else has tales like this. Pretty scary when the population of long-term users is kind of slim.

I started Avonex May 1997. My MRI last December was the same as it was in 97. Who knows whether that is a coincedence or not but I'm not willing to chance going off of it. I occasionally have some bad dreams on the night of injection.

Just adding my 2 cents
 

Next week is my 10 year anniversary of using Avonex. I do have regular blood tests and all is well.

I am only one person, but I feel its been a good, safe choice for me.

Hi there :)

I have to say that this is incorrect. RRMS only means that you go down, and get back up, go down and get back up, etc.. It has nothing to do with the condition of the lesions at all.

Some lesions DO heal, some partly heal, some never go away, and some turn into "black holes" :eek:

Also, from what I understand, the CRABS are more for RRMS and not PPMS or SPMS. Only because they are to help "reduce" the amount of "relapses" (RRMS). Therefore once you are SPMS, you are that way b/c of the lesions you "already have". The CRABS do not help with actual sx's

I hear what you're saying, Jena and yes, that could also be true. I'm hoping that the ABCRs are helping PwMS for the long term.:)

I just have to remain skeptical, because my common sense forces me to do so.:D Hey some of you are still skeptical than LDN is keeping my MS stay stable, huh?:rolleyes:

Love,

Hi Sally :)

What part of that are you skeptical about though? since all the information out there says the same thing... Just curious :D

Also, I don't dount for a minute that LDN is helping you feel better. I am just not sure about it keeping you from relapsing :confused: But then, I have not done enough research on it yet.

Also, I have always been curious - what do you do when your lifetime supply runs out? Thanks!

I'm in that "we'll never know" boat myself right now. Last Oct. my neuro mentioned the possibility that I'm SP now, but is not ready to say so for the record. I haven't had a major exacerbation since starting C, but I have gone steadily downhill the entire time. I hate the not knowing part and my world would most certainly not fall off its axis if I had to quit the shots.

I have legions of lesions and my MRI looks like Vegas from the plane.

I'm not skeptical of the science of it, Jena. The Scientists have worked hard to find something to help us and I so appreciate it. I'm skeptical of the proposed outcome for all PwMS. Are the DMDs really keeping you from having exacerbations and if so, is that helping to slow the progression of the Disease?

My guess is that, they are not, and the MS just keeps progressing along. LDN has stopped my the progression of my MS...IMHO. I am the same as I was 4yrs ago, when I started LDN and maybe a little better.

I didn't notice anything helpful at all, when I was on Avonex for 8 months and then Copaxone for 10 months....only nasty side effects from A and progression the entire time I was on them. I was RR then and progressed to SP, while shooting myself silly with these drugs.:D

Sally, you only have a lifetime supply for a certain medicine? What does that mean?

Oh thanks Dodie, I missed that question. I'm guessing that she means a lifetime limit as with Navatrone.

Naltrexone is NOT Navatrone and is NOT a Chemo drug. LDN (Low dose Naltrexone) is perfectly safe and therefore has no lifetime limit.

Yes, I did get the 2 mixed up, my apologies. Indeed, LDN has a very positive picture. This link is a good example of that:

http://www.lowdosenaltrexone.org/ldn_and_ms.htm

Sally, did you experience increased lesion load while on those CRABS?

I can't say that the CRABS are a guarantee for everyone, no. But I wouldn't go so far as to say they just don't work at all. Especially not after all the research involved, and the almost 20 years it has been around.

Also, if they are working for someone, they don't claim to be 100% effective. The best we can get is 33% :( But being that they are the only proven ones at this point... I can only hope... Also, the se's are very over exaggerated, The worst one for me are occassional hot flashes, as the same for most people I have spoken to.

But, again, for it not to have any scientific proof, I can say that almost everyone I have talked to that is on LDN, only have great things to say :)

Sally, are you saying that your body can only take so much of a drug then it is ineffective?

Huh? I don't understand your question, Doydie.

I was just explaining the difference between Navatrone and Naltrexone.

I guess I was asking about the Navotrone. I didn't know that your body could only take so much of it. I guess that's what you mean by life time limit. I think I'll stick with my Avonex. But I'm RRMS so for now I don't have to worry about that.

Hi Doydie :) Navotrone is a chemo for SPMS or worse, with a lifetime limit:

"In multiple sclerosis, the usual dosage is 12 mg/m(2) through IV every 3 months. Ordinarily, patients should not receive Novantrone treatment for more than two years at a time, and should not receive more than 140-160 mg/m(2) in a lifetime"

http://ms.about.com/od/immunomodulat...ovantrone1.htm

thanks Jena.

You are welcome, and I apologoze for my error earlier :wink:

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...

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.

http://dl6.glitter-graphics.net/pub/...lyfbfqxffr.gif

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

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.

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.

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.


LA

You all realize that Nappy asked this question in May of 2007???? I don't think she is on any DMD now.:p

It's still an interesting subject, though.

ROTFL! I thought she quit but then I thought "Well, maybe she went back on them?" ROTFLMAO!!! :p:p:p:p

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

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?:confused:

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