changing from copaxone to betaseron... help

I have had multiple sclerosis since 1983.  So that's what...24 years.  Back then there was NO therapy available for people with MS, as you know.  At that time I was experiencing 2-3 exacerbations a year, each of which left me with greater and greater disability.  In around 1992 I started Betaseron and have been on it ever since. 

When I started it, the exacerbations stopped.  about 2 years into injecting it, I had one more serious exacerbation, then nothing since.  Obviously I still have MS...but no new exacerbations. The doctor was convinced in 1992 that I had moved from relapsing-remitting to secondary-progressive, but was convinced that the Betaseron would be helpful in slowing the progression, no matter what it was labeled.  At the time, you might remember, Betaseron was only being prescribed for people with relapsing-remitting, so he lied on the form to allow me to get on it. I'm very glad he did.  While I am significantly disabled from all those earlier exacerbations, I'm convinced I would be much more worse off had I not gone on it when I did.

I've not taken anything but the Betaseron, so can't help with switching medicines, though.

As for side effects, all the interferons -- Betaseron, Avonex, Rebif --have similar side-effects: headache, body ache, chills, fever -- that are strong when you first start, but subside after the first 2-3 months, and pretty much fade away entirely after that.  I started out at full dose. These days they sometimes start folks on 1/4 or 1/2 dose, and then "ramp up" over time. I don't know if that is better. From folks that I've read about on boards like this, that method seems to prolong the side effects beyond the 2 months or so. I wonder if it isn't better to just start out at full dose and deal with them for those first couple of months, and then move on!

Here's what I did: Before injecting, I took two ibuprofen. Then injected, then went to bed. That way, I slept through most of the side effects.  If I did wake up in the middle of the night (usually about 4 hours after injecting) and felt awful, I had a glass of water and 2 more ibuprofen by my bed, and I took those.  Then when I woke in the morning, sometimes I'd have a headache. If so, another ibu and I was "good to go". AT the time I was working full time (I'm retired, now), and never missed any work.  I must confess there were a few days where I felt "hung over", but another ibuprofen sometime around lunch time and I was fine.  This heavy dosing of ibuprofen lasted about 2 months, and tapered off considerably after that.

Now I still take the 2 ibuprofen at the time of injection, but never anything in the middle of the night, and only occasionally the next morning do I have any ill effects.

Of course it may be different for you...but generally that's what happened with me, and generally that's what I hear reported from other folks.

My experience isn't quite like yours, as I had serious exacerbations early on, but I hope what I've told you is helpful.

I'm sorry -- I really don't "know" anyone else in real life with MS, only what I read on the internet, on this and one other MS board I frequent. And what I read in in real life -- I do try to keep up with the literature... but I don't know anyone who has moved from Copaxone to Betaseron or one of the interferons.

I'm sorry the Copaxone didn't seem to work for you.  The folks that I know that are on Copaxone really like it, and like the relatively few side effects.

The pre-menopause and years leading up to menopause really can confuse the issue.  I know I went through a lot of problems, particularly bowel and bladder incontinence, and had increased MS symptoms the week before my period was due.  The only thing that I found that significantly helped was my doctor putting me on a very-low-dose birth control pill.  Almost immediately I noticed the difference:  mood swings and night sweats disappeared, bowels and bladder got back under control, cramping and irregular period flows evened out. I stayed on them for about 3 years, then went off. I had one more round of menstrual cycle, and then nothing.  And the weird MS symptoms that had evened out continued to be not a problem.

I can't tell you whether there are changes on an MRI. I did have an MRI prior to starting the Betaseron, and then one after that exacerbation -- which showed some change.  But I've had none since. I haven't been to a neurologist in 10 years. My primary care physician takes care of anything related to my MS, including prescribing and monitoring the Betaseron, and oxybutanin (ditropan, for bladder control). If I have any issues around the MS, she consults with a neuro and gets back to me..but that's only happened once in the 10 years that she's been my doctor.

But again -- I'm significantly more impaired than you. I use a wheelchair full time, now, although I went through a number of years cycling between wheelchair, walker, forearm crutches, a cane, and back again. I have bladder and bowel issues, weakness in my upper extremities, numbness and tingling from mid-torso to toes (which I've experienced all 24 years), some vision problems most evident when I am overtired and/or overheated, and other lovely ms-related stuff.  But also again -- it's not significantly worse than it was 14 years ago when I started on the Betaseron, and I'm pretty convinced I'd be bed-bound by now had I not gotten on it...

or one of the disease-modifying drugs.

 It does sound like you still have relapsing-remitting, and a relatively mild case, probably complicated by the pre-menopausal stuff.  22 years is a long time to go with just sensory stuff and optic neuritis...which can be scary enough (I'm a real wimp about my eyes!). I hope that the Betaseron works for you!