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.
Hi - thanks so much for your reply. What you tell me about the Betaseron is helpful. I've been out there looking around and find the general concensus is to hang in through the side effects because it really does help the disease process.
My course of disease for 21 years was optic neuritis (about 30 times probably) along with only sensory symtoms - tingling, numbness etc... sometimes up to twice a year. My recovery every time was just about 100%, no symptoms... I was fortunate. My brain MRI's showed no progression for 10 years at one point and I did go once for 5 years without an attack... never could figure out why. Otherwise I carried on with a modified lifestyle - rest, good diet, vitamins for a long time. It got more frequent after I had babies. Then they put me on Copaxone... it worked really well and I had no problems for over 2 years. It was a relief for me. But the last two years really, it seems to have changed. I had one exacerbation where my hands got involved, and they didn't recover so well. Then I had another one last year that left more deficit and less recovery - in June I had another one and again more deficit and less recovery. I still only have sensory problems and maybe some mild weekness (hard to tell). The sensory stuff never seems to go away now, it just ebbs and flows... and it's enough to drive me nuts. The Dr. says pre-menopause hormone fluctuations have alot to do with why this is happening... along with axonal breakdown of old lesions that were quiet for all these years. Fun... I'm scared. I feel like I'm on the edge of a cliff about to fall off...
Anyway from what you told me, it sounds like what I'm going through now should almost be the normal course for relapsing remitting instead of the piddly stuff I went through for 21 years. Having this happen is like being diagnosed all over again for me. The Dr. insists that I'm still RRMS and not secondary Progressive... which I guess is good news.
Now that I've told you my whole medical history... and whined about my sort of insignificant problems to someone who has dealt with some of the bigger stuff that MS can dole out... I just needed to get that off my chest.... thanks.
I hope the betaseron works for me. When I start it I'll take your advice about the ibuprofen. I'm also really prone to depression and I'm concerned it will cause be some big problems in that department... did that happen to you? Have your MRI's shown progression since you've been on the Betaseron? Also do you know of anyone else who had to change therapy from copaxone because it failed?
Thanks again so much for your answer I appreciate it...
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!
Hi - thanks for the reply... I'm so glad to hear you say that about the pre-menopausal stuff. It really does get confusing. I don't know what symptoms are MS, what's pre-menopause and what's age-related!! It makes me nuts. I like the idea about the low-dose birth control. That's very interesting. I have alot of problems with mood swings and bouts of depression. I'm on an herbal supplement that helps some... but I don't know that it's helping with the MS. The Copaxone worked for me really well for two years. I was so happy. I felt better and more robust - it even helped with heat tolerance. It was amazing how well it worked. ...and then it just quit working...? I have to wonder if this pre-menopause business has something to do with it.
Optic neuritis has been my primary issue. All this time, any time I have an exacerbation, it starts with optic neuritis. My left eye is pretty beat up from it. I've lost neurons in the nerve there. I once had it in both eyes at the same time and was pretty well blind for a while - until the steroids kicked in. For all that my visual accuity hasn't suffered too much. I am somewhat mild for all this time. I often have wondered if I actually have MS... although the neuro I go to is affiliated with a top-notch MS Center. She is top in her field and has alot of experience and doesn't bat an eye at it and is convinced I have MS.
The big thing she says is that they're finding folks who have been benign for a long time start to have axonal breakdown in existing lesions that have been silent for many years and these folks start to have more symptoms as the nerve tissue begins to break down. Sounds logical I guess. It would kind of go along with what seems to be happening to me. My bladder gives me problems now... but if I think back, that really started like 4 or even 5 years ago. It's been a very slow and steady thing... I would deny it, or say it was from having babies or something, but it really got worse this past year to the point where I couldn't ignore it anymore. So it falls in line with what she's saying about axonal breakdown. They're starting to do alot of studies on that now from what I understand.
Anyway, thanks again for your response... I really appreciate it so very much. God Bless...