Hi all! I've been doing my research on treatments and my neurologist and I have decided to start with Avonex once a week then if not successful we will go with Betaseron. I can't really seem to find much difference in the two except for the dosing...of course let me throw in the disclaimer I'm not always the brightest star in the sky either! Ha!
My question(s): If you have taken both, why did you change/switch? Are there different side effects with each that you have personally experienced? What can I expect in general terms of side effects? Also, I now have Ulcerative Colitis and MS two auto-immune deficiencies? Anyone else have this issue, more than two? Really don't want anything else to go wrong with the ol' bod! Argh...
I will start in about a week, my insurance insisted that I use their lab or they wouldn't pay for it, I know it is expensive so I won't complain too much.
My last question has to do with the onset of symptoms. I understand that different people experience different side effects in different time frames, but would it be within the realm of possibilities to start with optic neuritis, onset about three months ago and then start experiencing "pins and needles" in arms and legs this soon afterward? Or is this symptom something different totally?
"Be yourself. An original is always worth more than a copy."
I haven't taken both Avonex and Betaseron. They are both interferons, though, and the side effects are similar. The issues as I see it with Betaseron are these: you experience the side effects more often (every other day, as you inject Betaseron every other day!)
and there is some limited evidence that, because you do inject B every other day, you maintain a more consistent level in your blood stream, and so it is somewhat more effective.
As for having more than one autoimmune disease -- unfortunately (and I haven't been able to find any statistics to back this up) it seems like when you have one autoimmune disease, others come along. Not always (like, I've had MS for 25 years and it's the only disease I have..), but sometimes. And sometimes some issues that were thought to be an autoimmune disease -- turns out that it was really MS from the beginning. But I don't know anything about ulcerative colitis, so can't even hazard a guess if that is true in your instance.
Optic neuritis is often a first early sign of MS. People will get that, recover, and have no further symptoms....until, somewhere down the road, other stuff occurs. Just like you suggested. So yes, it is well within the realm of possibility that you had the ON (I'm assuming it was diagnosed by a neuro or opthamologist), and now the pins and needles, tingling, etc., come along.
Hey mamana monster,
I just wanted to say hi. I know you are probably scared and worried about starting a progression therapy. I know I was. Once you start you will find that you feel really good about doing something to slow down this disease.
Please let us know how you are doing.
Love and prayers,
Hi Gretchen! You are right...as much as I hate to admit it, I am scared. I know deep in my gut I'm doing the right thing it's just not knowing how it will affect me. I'm sure it will be fine and I have to remember that things are never as bad as we think they will be.
HealingWell helped me so much when I was dx'd with UC and I know it will do the same for the MS. Thanks for the encouragement!
John, I'm surprised to see that you were told that the side-effects of B were to last only 2 weeks!! I was ALWAYS told that "the worst of them would last 2-3 MONTHS"...which they did. And most folks today find the 2-3 month "rule" still in effect. Even now, 15 years later, I still can experience them if I'm way overtired, or ill with somethng else (like a cold)..or sometimes for no reason at all. I've never heard anything about only 2-3 weeks!
I'm sorry that didn't work out for you.