chills and muscle spasms after injectioin

[krystine]

I am re posting this as per a suggestion...

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

[MSW1963]

I had similar reaction on Copaxone. When I started on C it was the formulation that had to be 'reconstituted'. I struggled with severe injection site reactions, but otherwise no other side effects.

2yrs later, Copaxone was re-formulated in pre-filled syringes, which was much easier than mixing viles etc. But within a short period of time I had chills, aches, and in a fetal position, taking several hrs for the reaction to resolve.

I was told the same thing 7yrs ago by my neuro and shared solutions. My MS doc switched med to Tysabri, but FDA approval was revoked the month I was scheduled for my first infusion. I started Rebif for 6 mos, but I was not very compliant with administering it. Then Tysabri for 2+yrs, and now Aubagio.

Sorry to hear you're having DMT problems and hope things settle down soon.

[Imagine]

Not True

This reaction happens in TWO % of pts on Copaxone. Look it up in a medical journal. 2% is a low figure but not for the 2% it impacts.

I also read that prolonged shaking (for the 2%) afterinjecting typically means ALLERGIC TO THE Rx! FYI: after an allergic reaction to anything- each additional exposure is worse.

Physicians who make statements like "never heard of that," enrage me! They can do their homework; if I found it, they certainly can. I also know when something like that is reported and the reaction cannot be found- by law, it's supposed to be reported.

Please take care of yourselves and never listen to erroneous statements that effect your health---PLEASE
Shalom, Suzanne

[kathryn]

IPIR reactions

After 14 years on the drug get them about 2x a year. Tight face, trouble breathing, chills, shake for 1/2 hour and now get 100 temp for 6 hours but fine next day. It IS a documented reaction but fine the rest of the time and after trying Tecfidera would rather endure them!

[krystine]

Well, i threw in the towel after my 3rd reaction in a month. I am now on a one month break from meds and then am going to try tecfidera and see how it goes. Thanks for the advice.

[charris1980]

It usually happens to me when I do the injection on the outside of my legs. It hits a blood vessel I think and after about 30 minutes I get the chills so bad I get a headache. Sometimes I just sit in the shower just to help my mind get off the chills.

I avoid the blood vessels around my legs now and haven't had one of those episodes since. But I am convinced if the medicine gets inside a vessel you either immediately get really hot and heart starts to race (had those happen too) or get the chills really violently in minutes.

I recommend avoiding that injection spot the next time that happens and see if that helps.