Have been on Copaxone for 15 years

[krystine]

Hi there,
I have been on copaxone for 15 years (minus a three year hiatus to rebif) and have been super healthy with little activity while on it of my disease. I switched to rebif because I was getting strange reactions where I would get extreme chills and my muscles in my abdomen, legs, arms and jaw would clench uncontrollably 20 minutes after my injection. The reaction would also last 20 minutes. It started happening once a year and had increased to several times a month before I switched to Rebif. While on rebif, I had several brutal relapses that made me stop working and became majorly anxious and depressed. I decided to go back on copaxone because I knew I had good results from it before.

Now, I have been back on it for a year and a half and last night I had the same reaction again. It was slightly less severe than before and my blood pressure didnt get as high as before with the reaction. Today I feel fine.

The reason for this blab is that I am bothered with the fact that my neuro and shared solutions say they have not heard of this reaction before. I dont want to switch meds because I feel I am super stable on Copaxone but just want info. If someone could tell me not to worry about it, I would learn to ride it out.

Anyone else with similar experiences? Any advise would be appreciated and welcome.

My neuro today when I called him said we could look at tecifedera, but I really dont want to switch anything. If someone told me 10 years ago I would be offered a pill instead of the injection and I would turn it down, I would have said they were crazy. but I dont want to mess with anything.

Krystine

[Jules A]

Hi,
Great to hear that you have done so well on Copaxone for so long. I have been on it over 10 years and for whatever reason am also blessed to be doing extremely well so far.

I haven't heard of the reaction you mentioned but I would bet if you add those symptoms in the title of a thread you might get more responses.

Although those symptoms sound very unnerving they don't sound like they were progressing to anaphylaxis which I would hope is a good sign. What is your physician saying about the risks of continuing?

Best of luck to you!

[krystine]

He says if it continues to be a once in awhile thing it is up to me but if it starts to happen more often, I should think about switching. Thanks for the tip about changing the title of the post.

[kathryn]

Pretty weird

Even Shared Solutions is forthcoming with the fact that's pretty much a classic reaction to the shot. They call it immediate post injection reaction and while it feels like you'r
going to die usually settles down. Now have them about twice a year but rather put up with them then go through the Tecfidera or 40 mg copaxone horror again.

[golfwidow]

Reaction

I had the same type of reaction when I was on Avonex -- it happened after every shot -- I thought I was going to die -- the neuro was nonchalant about it. I asked to try something else -- he put me on Betaseron and although I have the extreme reaction about three times a year -- otherwise it is what I call a "shot hangover" -- happens almost every shot even with Tylenol and lots of water every day.
It's a mystery -- wonder if docs would be so non-chalant if they were the ones experiencing the severe reaction -- it is scary to me.