Coming off Copaxone for pregnancy, terrified.

A board to discuss the Multiple Sclerosis modifying drug Copaxone

Coming off Copaxone for pregnancy, terrified.

Postby Wonderfulworld » Thu May 10, 2007 12:34 pm

I'm very stressed.
I had 2 miscarriages in the last 2 year, and probably an early 3rd one too.
Each time I was on Copaxone until I got a positive test, then I gave it up.
Myself and my DH have been tested for EVERYTHING in the last 6 months, and they can find nothing up with either of us.
So all the miscarriages are unexplained - I know that they are common alright.

But this time I think I should give up the Copaxone before conceiving, just in case it is having an effect. My obs/gyn said he didn't think it would have an effect, but it is the only thing left that may be having an effect on the pregnancies.

Copaxone has been my one respite from the MS. Off it, when on Rebif my MS was very active, so much so that theh neuro was insistingn on Mitoxantrone, but I said no. During one attack I was paralysed, lost my hearing, balance and was EDSS 9, but I recoverd ok except for no hearing came back in one ear, and slightly weak right side.

I'm TERRIFIED that being off Copaxone, my MS will rev up again and hit me with full force. I know I can't see the future, I know it might be ok, or not. I just need to share how crap MS and the threat of it can feel sometimes..................

If anyone has been through this, or has any advice about coping with the stress, or pregnancy or anything, I'd love to hear from you. Sorry for long post :oops:
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Postby Toyoterry » Thu May 10, 2007 1:21 pm

I'm so sorry to hear about your miscarriages. My wife had a late miscarriage and I know how hard it can be. Don't give up hope, we now have two healty children despite her Rheumatiod Arthritis and my MS. For what it's worth, I have been off Copaxone for two years and have not had a relapse. I'm not sure how long it stays in your system after you quit.
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Postby connieb » Thu May 10, 2007 4:12 pm

No words of wisdom WW, but I just wanted to let you know that my thoughts and prayers are with you-- I also had two miscarriages in the last 2 years (and one years ago as well) so I can well imagine the depth of your sadness and fear. So yes, the whole pregnancy thing can be beyond stressful... put MS into the mix and one truly starts to envy those "other" women for whom it all seems so easy! But I also have two wonderful children-- although when I was pregnant with my younger, I was at one point told with great certainty that I was having another miscarriage. I was so afraid and so stressed during what turned out to be a very healthy and easy pregnancy and I really regret it now-- for no reason whatsoever I robbed myself of so much joy. So for whatever it's worth-- happy outcomes are not only possible but also very likely! And being positive (easier said than done I know) can only help-- both pregnancies and MS.
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Postby Loriyas » Fri May 11, 2007 5:58 am

Just a couple of thoughts-I had to stop Betaseron for a while before I started Copaxone. During the time I was on nothing I was worried also that I would have an MS exacerbation. But I didn't, and everything was fine. In fact, I remember feeling great during that time. And remember that stress doesn't help with MS so worrying about an exacerbation won't help. Try to think positively-you won't have anything happen!!!

Secondly, Dr. Rhonda Voskuhl at UCLA is currently doing a study on MS and estriol which you might want to read about. Estriol is a hormone produced during pregnancy that researchers are looking at it as the reason why women who are pregnant typically have a large decrease in MS symptoms. So you may have that to look forward to once you do become pregnant!

I wish you the best of luck!

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Postby Wonderfulworld » Sun May 13, 2007 1:31 pm

Hi Terry, Connie and Lori, thanks to all of you for your kind replies.

Terry, I'm so sorry to hear of your loss, that is very hard for you and your wife. Your words do bring me hope, wonderful that your 2 little ones are healthy...

Connie, beyond stressful is exactly what I feel! You know how bad the whole thing feels. I will try to focus on the likely positive outcomes, like you say! Hard to though, but it's time to draw on inner strengths here :lol:

Lori, I too have been interested in the Estriol trial. And sure enough during the two short pregnancies I did have the MS was quiet. Afterwards though it made it's presence felt!

I am touched that you all replied, it is heartening to feel other people understand. I

I was thinking a lot this weekend, and I wonder if my improvement may have been as much to do with getting married (around the same time that I went on Copaxone)). My life has been so good with my husband, and we are very very happy together. The miscarriages have brought us closer, if anything, in our sadness. But getting married has been one of the best things ever for me, and maybe being happy has as much to do with the MS being more co-operative..........I don't know. :wink: MS is a hard beast to fathom..........
Thanks again x
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