[AfterMyNap]

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

[SallyC]

Hi AMN.

I was only on Avonex for less than a year, but all the effects I had were bad.. 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..

[jena1225]

Originally Posted by SallyC

Hi AMN.

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.

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"

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

[SallyC]

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. Hey some of you are still skeptical than LDN is keeping my MS stay stable, huh?

Love,

[jena1225]

Hi Sally

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

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 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!

[AfterMyNap]

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.

[SallyC]

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.

Originally Posted by jena1225

Hi Sally

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

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 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!

[greenapple]

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

[AfterMyNap]

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.

[doydie]

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.