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Does anyone else get sick on Copaxone?
Recently, I posted that I only had injection site reactions to Copaxone- but that has changed. I have taken a few days off, because of severe headache, nausea, and HUGE injection site reactions. They seem to keep getting bigger the longer I take the injections. The pain wakes me up, if I happen to roll over onto one. My neuro says the headache and nausea are "normal" as are the reactions I have been having. They did have me see my regular doctor, just to make sure I didn't have an infection in any of the injection sites. Nope, no infection. I am also starting to see tissue atrophy, I now am the proud owner of several 3+ inch craters under my skin on my thighs. I'm still waiting to see what will happen to my arms, hips and stomach.
What do you recommend? I am frankly at a loss... Constant severe headache, nausea, intensely painful and huge lumps that become depressions under my skin- what's the "upside" again? Oh yeah, it might delay further disability. I don't know if I can tolerate this much longer... The thing is, I am allergic to the interferon drugs. What would you do? I'd like to get lots of opinions. because I really don't know what to do next. The situation is freaking out my husband too. We just don't know enough to make an educated decision.
Thanks,
Tammy
What do you recommend? I am frankly at a loss... Constant severe headache, nausea, intensely painful and huge lumps that become depressions under my skin- what's the "upside" again? Oh yeah, it might delay further disability. I don't know if I can tolerate this much longer... The thing is, I am allergic to the interferon drugs. What would you do? I'd like to get lots of opinions. because I really don't know what to do next. The situation is freaking out my husband too. We just don't know enough to make an educated decision.
Thanks,
Tammy
Thank you so much for the support! And for the good/helpful advice. My next step should definitely be physical therapy. I can barely walk right now, and I'm anxious to know if that can be improved (the part that's caused by deconditioning anyway).
I'll let you know what happens with the new meds...
XOXOXO,
Tammy
I'll let you know what happens with the new meds...
XOXOXO,
Tammy
Yeah, that sounds good that they're going to switch you. You should let us know if you do start taking Gilenya, how you like it.
Well, it looks like I might be going to taking Gilenya. They want me to see their top MS specialist first though. They are going to call me when they can fit me in.
Thanks for your support everyone. Hopefully I'll be able to tolerate it better.
-Tammy
Thanks for your support everyone. Hopefully I'll be able to tolerate it better.
-Tammy
I don't blame you. It's like you're trading the possibility of one bad thing, for another. It's kind of a lose, lose situation right now.
-Kelly
-Kelly
I chickened out tonight. I just can't do it anymore. I am going to call my neurologist again about it.
Tammy
Tammy
Site reactions often seem to escalate right around this point in time after people have started taking Copaxone BUT your experience is far outside the average expectation! Call Shared Solutions and report what is happening to you. Call: 1-8-0-0--8-8-7--8-1-0-0 I think they pick up 24/7.
You will still be referred back to your neuro in the end but you may get enough info from the SS nurses to find out if you even want to give it anouther go-a-round. In case you aren't sure.... it is acceptable to let the doc know you aren't interested in particular therapies. You are doing the right thing to be prepared with a workable alternative.
Good luck with whatever you decide.
Mary
You will still be referred back to your neuro in the end but you may get enough info from the SS nurses to find out if you even want to give it anouther go-a-round. In case you aren't sure.... it is acceptable to let the doc know you aren't interested in particular therapies. You are doing the right thing to be prepared with a workable alternative.
Good luck with whatever you decide.
Mary
Hello,
I'm sorry, I just didn't feel well enough to get online yesterday. I have only been on copaxone for about 7 weeks. I didn't think that this was really normal. I have taken a break from the medication since last Thursday. After a couple of days, the headache and nausea got better. I still have lumps, but they are starting to go down. It looks like a couple of them are already becoming depressions. If I have the same kind of reactions this week, I may just quit taking it. I guess I will begin to research Gilenya, just in case.
Thank you for all the support.
Tammy
I'm sorry, I just didn't feel well enough to get online yesterday. I have only been on copaxone for about 7 weeks. I didn't think that this was really normal. I have taken a break from the medication since last Thursday. After a couple of days, the headache and nausea got better. I still have lumps, but they are starting to go down. It looks like a couple of them are already becoming depressions. If I have the same kind of reactions this week, I may just quit taking it. I guess I will begin to research Gilenya, just in case.
Thank you for all the support.
Tammy
I've been on Copaxone since 2008 and have had some small lumps for a couple of days following each injection but once 24hrs has passed my nurse told me to use Bio Oil and rub the bumps away.
I dont do this too often - only if i get a particularly sore bump and want rid of it.
I find some parts of my skin are getting "tough" is the only way to put it, but considering the time i've been using Copaxone that's not too bad.
Also try injecting manually - it's far easier in the long run and you can make sure you inject into an area that's comfortable. The autoject can inject onto a spot that will hurt but it's too late once you've pressed the button. I also use the small ice pack directly onto the skin for 10-15 mins after each injection. (I know you shouldn't apply these direct to the skin but you can let off a bit so as not to burn the skin).
Hope your situation improves on the Copaxone or you can find something that works for you.
Al.
I dont do this too often - only if i get a particularly sore bump and want rid of it.
I find some parts of my skin are getting "tough" is the only way to put it, but considering the time i've been using Copaxone that's not too bad.
Also try injecting manually - it's far easier in the long run and you can make sure you inject into an area that's comfortable. The autoject can inject onto a spot that will hurt but it's too late once you've pressed the button. I also use the small ice pack directly onto the skin for 10-15 mins after each injection. (I know you shouldn't apply these direct to the skin but you can let off a bit so as not to burn the skin).
Hope your situation improves on the Copaxone or you can find something that works for you.
Al.
How long have you been on Copaxone?
I was on it for 2 years before switching to gilenya, not by choice, but only have some minor scar tissue.
Seems this drug is not agreeing with you and it may be time for a change otherwise you can call the Shared Solutions nurse and see what she thinks. Like Lu said, these are not normal reactions. Please don't delay in getting help with this.
Let us know how this all turns out.
Julie
I was on it for 2 years before switching to gilenya, not by choice, but only have some minor scar tissue.
Seems this drug is not agreeing with you and it may be time for a change otherwise you can call the Shared Solutions nurse and see what she thinks. Like Lu said, these are not normal reactions. Please don't delay in getting help with this.
Let us know how this all turns out.
Julie
Hi Tammy,
I am so sorry you are having such an awful reaction to this ;( I have been on Copaxone since February I have never had any significant problems with it. It really helps to heat the site area before injecting and then use the cool pack immediately after. I hope this helps you. Have you discussed these reactions with Shared Solutions? Their nurses are usually very helpful :) I hope you find help soon! Good luck!
Xxx Deb
I am so sorry you are having such an awful reaction to this ;( I have been on Copaxone since February I have never had any significant problems with it. It really helps to heat the site area before injecting and then use the cool pack immediately after. I hope this helps you. Have you discussed these reactions with Shared Solutions? Their nurses are usually very helpful :) I hope you find help soon! Good luck!
Xxx Deb
I also wanted to mention that Lulu had mentioned to me before about using Witch Hazel afterwards on the injection site. I use that, and it seems to cut down on the inflammation.
I can definitely see how you are at a loss right now. The Copaxone sounds miserable, but you can't take the interferons. If it can stall future disability I'd say try to keep on it and maybe use your arms, hips, & stomach more often (with neuro or shared solutions permission). Does the interferons also give you flu-like symptoms, or what type of allergic reaction do you get when you use them?
How about Gilenya, Novantrone, or Tysabri - are those all out of the question? I don't think they're interferons.
After about a year of Copaxone, I'm still getting the 3-inch size welts and strange 4-5 inch long raised lines that go down my legs after I inject. I don't have 3-inch craters, but I do have some craters. I also had the wonderful experience 6 months in of the heart-attack like reaction.
Good luck finding the right answer!
Kelly
How about Gilenya, Novantrone, or Tysabri - are those all out of the question? I don't think they're interferons.
After about a year of Copaxone, I'm still getting the 3-inch size welts and strange 4-5 inch long raised lines that go down my legs after I inject. I don't have 3-inch craters, but I do have some craters. I also had the wonderful experience 6 months in of the heart-attack like reaction.
Good luck finding the right answer!
Kelly
Tammy, these are not normal reactions to copaxone and the doctor should not be telling you to tough it out. I'm not going to guess what might be the cause of your reactions but this is definitely not the norm. How long have you been on copaxone?
Lulu
Lulu
Tammy,
That sounds awful and I feel for you. I've only been injecting since August so haven't had any of what you are experiencing.
If you've tried heat packs, cold packs after injection, then massage sites in the shower or later on plus Aloe Vera rubbed on the injection sites then my only suggestion is to try another drug, either oral or injectable to see if you can get some relief but don't give up the DMD. In addition to a DMD I have read good things about LDN - low dose naltrexone in 1.5 - 4.5mg oral doses.
Best of luck, hope you can find some relief.
Blessings
Alex
That sounds awful and I feel for you. I've only been injecting since August so haven't had any of what you are experiencing.
If you've tried heat packs, cold packs after injection, then massage sites in the shower or later on plus Aloe Vera rubbed on the injection sites then my only suggestion is to try another drug, either oral or injectable to see if you can get some relief but don't give up the DMD. In addition to a DMD I have read good things about LDN - low dose naltrexone in 1.5 - 4.5mg oral doses.
Best of luck, hope you can find some relief.
Blessings
Alex
I'm sorry to hear that you're strugglingnwith this. I have been on Copaxone since Aug 2009.. I can't do injections in my arms or legs anymore.
My arms would get these baseball size welts on them, my skin is all dented on my stomach, flanks and thighs. I am told not to inject into the flattened areas which leaves very few places.
My hips have a lot of scar tissue so it's very hard to find places. I am not anxious to switch to the others because of the side affects.
I have had so many post injection reactions. My neuro mentions that I may want to start thinking about a different med but for now I'm staying put.
I'm sure you asked your Dr already what options you have. I hope they find one that will work for you. It's stressful enough just having this disease but to have to go thru all the reactions from different meds and we have to inject on top of it just adds to everything.
Take care and I hope you find something that works. Sorry I couldn't be of more help.
Hugs,
Kristi
My arms would get these baseball size welts on them, my skin is all dented on my stomach, flanks and thighs. I am told not to inject into the flattened areas which leaves very few places.
My hips have a lot of scar tissue so it's very hard to find places. I am not anxious to switch to the others because of the side affects.
I have had so many post injection reactions. My neuro mentions that I may want to start thinking about a different med but for now I'm staying put.
I'm sure you asked your Dr already what options you have. I hope they find one that will work for you. It's stressful enough just having this disease but to have to go thru all the reactions from different meds and we have to inject on top of it just adds to everything.
Take care and I hope you find something that works. Sorry I couldn't be of more help.
Hugs,
Kristi
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The process of switching may take a little time. Tell your hubby not to freak too much. This isn't cancer chemo we're talking about. MS is generally much slower in progression and the chances are good that this delay and break in therapy won't make any significant difference. In fact, it will be a wonderful thing if you end up feeling better instead of worse!
There are several good disease modifying drugs out there for MS but none are perfect and it is clear that people vary in how well they tolerate any of them. Fortunately, there are many advances headed our way in the near future. I hope Gilenya takes you far down the treatment journey.
Oh, please don't consider yourself "chicken" for not resuming the Copaxone. I look at that as taking care of yourself. You have been making a steady return to baseline sans Copaxone. That's proof enough. Sometimes it isn't wise to take an experiment one final step just to prove the offender (Copaxone) will take you back to misery.
Good luck and let us know how it goes. While you're waiting for Gilenya, you could concentrate on healthy lifestyle changes and PT. There are plenty of alternatives that can help improve life with MS today and it's always good to utilize as many weapons as you can.
Mary