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Copaxone, Long Term Side Effects?

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sedavis62
sedavis62 Posts: 18
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I've been on Copaxone almost as long as it's been on the market ... ~15 yrs. I'm having an issue right now with a swollen *something*, either a lymph node or what they're calling a Bartholin Gland in my groin. I've had it for a long time, but lately, it's gotten bigger and aches. I have seen two doctors for it and will be seeing a 3rd tomorrow along with an ultrasound. No one knows what it is, because it's hard and the shape and position aren't anything familiar to them. And these are doctors whose job it is to be familiar with the region. They also aren't familiar with Copaxone. I'm wondering if I'm presenting a side-effect that took years to make.

It's a long shot, especially on this really quiet board, but has anyone else had weird stuff after years on Copaxone, stuff doctors can't explain?

Thanks,
Sue

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  • CkepiJinx
    CkepiJinx Posts: 613 Member
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    I have only been on it for 5 years but I would be interested in what ever you find out. I hope it is not to serious and they can figure it out and help you feel better. Good luck!
  • Rensy2
    Rensy2 Posts: 9
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    Hi! I've had Lyme disease to begin with & they didn't dx it for 6 months. Then they treated it, but by then I'd had seizures, fibromyalgia, chronic fatigue etc. I still have latent Lyme. Then they dx'd Shogrens Syndrome & I've had a swollen gland in my goin armpit & both sides of my face. I've finally been dx'd with MS after 15 years of flare ups & being in wheelchairs, learning to talk & eat again. I couldn't even call my children by their right names. Then, I finally started on copaxone almost 4 years ago & now my mind is super. I can remember things I thought I'd never remember again! I love it. Yes, my groin still swells & then it goes back down. I have a problem with the sodium level in my blood. I've had it off & on for years. Sometimes they wouldn't let me out of the hospital until it was fixed. I'm having a problem with it again, but truly believe it has something to do with the way MS screws up out hormones. Think about the heat in the summer & how hot you get & can't get cooled down. It was soo hot this last summer, I could hardly ever go outside.

    I guess what I'm trying to say is, yes, I have the same problem. But I had it before I was even dx'd or on anything for MS. You are lucky to be dx'd right away. My family doctor thought in the beginning it was MS - that was 1990, and I just got treatment 3 years ago besides huge doses of prednisone - the reason I have so much weight to lose! :)

    Yes, I'd like to know why my body does some of the weird things it does. We lost 7 babies. An ectopic was the first & they told me I probably couldn't have kids. But I'm a fertile Myrtle - all the women in my family are :). We lost a son shortly after his premature birth, but went on to have a miracle son - premature by 6 weeks & lost another baby, then had a daughter 4 weeks premature & so far they've given me 4 grandchildren & my daughter wants to have more :)
    My son can't because his wife has Crohn's disease & has to have a hysterectomy. He want 5 or 6 children, but he has a girl & a boy. My daughter has 2 girls so far (& she wanted all boys). She loves football & would have played if we'd have let her :)
    Her husband loves his "3" girls!

    I'm willing to try to encourage anyone to lose weight. I need to lose weight for my ankles, knees & hips because I also have RA.

    But I love life & will live every day as though it's my last so I can enjoy the love of family & friends?
  • sedavis62
    sedavis62 Posts: 18
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    Five doctors later and now I know it's swelling of the Bartholin gland. The doctors don't know what is causing it as it's not behaving as a normal cyst or anything else on their radar. But they assure me it's nothing to worry about, and don't think Copaxone has anything to do with it. Personally, I don't know. How can they say they don't know what's going on but that it's definitely not this drug?? Regardless, I'm relived it's not cancer or needs surgery. I just wish I knew what is causing it.

    I will continue with the Copaxone as I believe it's the reason I can still work full time with MS. I suppose as time goes on, there will be more data that will help paint a picture of what the long term side-effects are. For now, it's worth the risk to me. Thanks for answering :)
  • charliesgold
    charliesgold Posts: 235 Member
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    My mom has been on Copaxone for just about as long as it has been out as well but she has no problem with swelling of any areas of her body. It's hard to distinguish for things like this though because she is on so many different medications to control symptoms that it would be hard to distinguish what causes any adverse reaction. Knock on wood to date she has no concerns.

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