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03 April 2007 @ 01:50 pm
Welcome again! (And my MS/Copaxone experience.)  
Whoa, new members!  Hi everyone.  Feel free to say hi and start chatting.  Also, if you know of anybody who might be interested in this community, please pass the URL along.

Here's a little bit more about me - well, not such a little bit, but less than I could write! I was diagnosed in early November after slowly degenerating since June.  I wasn't able to see my neuro until October, because my former workplace misled me about getting my medical benefits, and I couldn't afford to see a doctor.  I also had to move cross-country back to my mom's 'cause of financial trouble - in the worst of all this.  I had gotten to the point where I couldn't walk unassisted, half of my left eye was blurry to see out of, I vomited up everything I ate because of a banding feeling around my stomach (so I'd dropped 1/6th of my body weight), I had trouble with holding my bowel and bladder, and below my neck it felt like I was wearing a thick bodystocking - no fine sensation at all, and even some pressure sensation was gone.  I also had horrible pain along the sides of my spine and in my neck.

When I got back home, I'm lucky that my diagnosis was pretty quick and easy - well, I had five MRIs and a spinal tap within a couple of weeks, if you consider that quick and easy.  There were two lesions in my brain and a whole score of them, still with swelling, in my cervical spine.  Once I knew what I had, I spent a week in the hospital on methylprednisolone, which really jump-started my body back into behaving. Then there was a month on prednisone - a lifesaver for me before, during my second bout of Bell's palsy (my first one went untreated and is therefore permanent) - and while I took the steroids I decided on a long-term therapy.

I was all set on Rebif until I realized the only reason I wanted to take it was that the promotional material I'd read seemed like it was trying to scare me into taking it.  I didn't want the flu-like side effects or the depression (no help needed there at that point) or the chance of becoming tolerant to interferons, but Rebif basically made it sound like if I didn't take it, I was definitely going to get sicker, all the while telling me how strong and brave I was.  And when my fiancée Michele read it, she told me that was no reason to take a medicine for the rest of my life.  I'm really thankful that she said that, because I was thinking it all along, but I'd already been so scared and confused by my diagnosis that I guess I needed someone close to me who knew me to tell me how they felt about it.  She really saved me there.

So I went back to the other material I'd gotten - the Copaxone - and I reread it and realized how much better I liked the sound of it.  Not just because this time there wasn't any doom and gloom disguised by images of people rock-climbing or anything, but because the statistical material impressed me more, and there was a comparatively smaller list of side-effects.  When I called the Shared Solutions people for more information, they were really nice on the phone and I liked the general attitude about the drug.  Of course, it took me another month to be able to start Copaxone, seeing as how I had to apply for Medicaid to be able to afford it.  That's one thing that doesn't sit well with me about it, but I don't feel like talking about the problems with drug companies - even nice ones - in this post right now.

I started Copaxone in the beginning of December and I've been taking it ever since.  I'm lucky that needles have never bothered me in any sense, and I don't mind giving myself injections every night - I've never missed an injection!  I've had some site reactions and sometimes they're painful - like some muscle pain afterward if I happen to go too deep, or sometimes a raised area around the site - but they're nothing compared to the stuff I've read and heard from friends about the stuff interferons could possibly do to me. I know some people who are very happy on their interferon drugs, but I just didn't want to take that chance for myself.

I'm very new in my diagnosis and I have had some fallbacks since.  At the end of December I was walking on my own again (with a cane), had regained most of the feeling in my body above my knees (my feet and calves going numb were the first signs I had MS, actually, and I know I might not get it back - I still haven't), my eyes had cleared up, and I was finally able to eat again!  But by New Year's I was starting to go numb up the waist again, and my gait imbalance had gotten a little worse.  So I went back on the methylprednisolone and then another round of prednisone.  I got even better that time, and was really hopeful until the end of this month, when my pain got worse and the numbness came back again to my waist.  So, last week was a hospital week for me and I'm currently on for another month of prednisone.  I'm doing much much better this week than last one - I really love my steroids, I guess.  I know it's bad to be on them for a prolonged period of time, but lucky I keep having longer breaks in between needing them.

I'm worried about people saying Copaxone isn't working for me because I seem to be having more exacerbations than I guess I "should" with the drug.  I'm going to the Trotter Center at Washington University in St. Louis this month (on my birthday - oh joy!) and I'm afraid doctors there will give me news I don't want to hear, since I'm happy being on the Copaxone and think it's really helping me.  Maybe I'm just going to have more exacerbations than other people.  I've only been diagnosed for six months now.  In the meantime, I have had more MRIs and no new lesions have developed since October, and every time I fall back, I end up coming back stronger than before.

So... I guess yay?

Well, that's an abridged story of my MS/Copaxone experience so far.  Please make a post of your own story if you feel like sharing!  I'm always interested in hearing how other people are dealing with this disease and their therapy.

Take care!

-Ruth
 
 
Current Mood: goodgood
 
 
 
(Anonymous) on May 13th, 2009 05:56 pm (UTC)
Thank you
Thank you for writing about your experience with copaxone. I was on Rebif for two and half years. I never got used to the side effects. I never had any new relapses either. They told me it will get better in time. It never did. In Jan. I had a mental break down. The doctor took me off of it but doesn't think it had anything to do with interferons. Well, I'm doing much better and My new doctor is about to put me on copaxone. I'm not looking forward to the daily injections, But it will be worth it if I don't feel sick all the time.
Needles have never been a problem for me.
Thanks again
oc_mom on January 14th, 2012 01:17 am (UTC)
Hi :) My 41 year old husband was just diagnosed today...finally. I could whine about the docs we've gone though and all of the testing, but I'm sure you all have very similar stories. It sucks, but I'm glad that we finally have a diagnosis so we can move forward. He has had a variety of symptoms, but the ones he had for about 6-8 weeks are what finally got the attention of the doctors (ending in a really bad day)....mostly because it looked like a TIA or stroke. He had facial numbness, right arm weakness, dizziness, walking like he was drunk, and badly slurred speech (that became almost complete gibberish). These episodes came in waves throughout the day.

His neuro has offered 3 injectable; Copaxone, Avonex, and Extavia. So far, Copaxone looks like the way to go for him. The doc is basically letting us chose which one to start. We are new to all of this, so some of the acronyms you all use are lost on me, lol.