Restarted copaxone yesterday afternoon; reaction last night
 

I restarted copaxone yesterday afternoon after more than a year off. I manually inject and did not even feel the needle. I thought -- great! I experienced the normal burning and pain for about 30 minutes, but did not have an IPIR. Last night about 6:00p.m. (3 hours after the injection), I began to experience cold chills and shaking. After about 90 minutes of this (uncontrollable shaking), I called S.S. and they told me to take tylenol or advil and to keep injecting. They said this might just be a temporary reaction and maybe it would help if I predosed with tylenol or advil. They were aware of my past problems. The nurse did not seem to understand why I stopped the last time. Perhaps they need to simulate an IPIR in each one of them.:rolleyes: She did say she understood why I was so frustrated and that she would be screaming and cursing.

I said I was going to call my neuro today considering the problems I have had with copaxone in the past. At 8:30 I went to bed and took my temp, it was 101.2. When the nurse took it prior to my injection it was 97. I usually run low. About 11:30 I got up to take some more tylenol and it was 99.5. The shaking stopped around 10:00.

My temp seems to be back to normal today, but I am now aching all over. I am sure this is due to the shaking. I called my neuro's office at 8:00, but they have not returned my call.

I am so upset, disgusted, and depressed. I do not think I am going to inject that "stuff" one more time regardless of what my neuro says.

Flu like symptoms is not a normal reaction to copaxone like it is for the interferons. I also experienced a similar shaking/cold chills after the IPIR's I had in the past. But they "only" lasted about an hour.

I'm sorry, Barb :hug:. I totally understand why you don't want to inject again. See what the neuro says. I've had problems with all of the CRABs too :(. So far so good with LDN for me. I was just so fed up with the traditional meds that I had to get off of that lousy merry-go-round. I hope it gets better for you SOON. :hug:

Barb, that sucks!

I never had any IPIR's while using Copaxone, it just didn't work for me.
Your reactions sound extreme. I'd be talking to my neuro quicklike!

Let us know how it goes!

Darn it, Barb. Im sorry the C isn't working for you...I'd say you gave it the old college try.

:hug::hug:

hey Barb... I stand in solidarity with you.

I understand how you feel about de CRABs.

:hug:

coming up on 21 years of MS (next month), and at this point, I am on no meds... as I couldn't tolerate them either.

:hug: Barb, that very reaction is why I decided to stop Copaxone. My last one was all you described plus I did have the IPIR as well. The last year on the stuff I was miserable. I'm trying Betaseron now.

S.S. nor my neurologist could never explain why the flu like symptoms. I kept asking if it could possibly be caused by the meds if they had been frozen. Mine were shipped with the ice packs directly against one side of the box and I always wondered if those syringes on that side were frozen.

Aw Barb, :hug: :hug: :( It sounds like some kind of allergic reaction. I wouldn't take a med every day that caused that. I understand how you feel, and I hope your neuro will have a good alternative. :hug:

Barb that sucks. I'm sorry you are not feeling good. I started Copax around the first of the year. For two days I ran a fever had the chills and had what I called lightening flashes in my head. It was like someone tapping a nerve in my brain every 10 minutes. A flash of pain and then nothing. My neuro convinced me to keep on the copax for a week and if it didn't stop he would switch me to something else. Fortunately after a couple of days it stopped. Hopefully yours will get better. I also discovered that applying heat to the injection site before injecting actually made it worse for me. Without heat, it burns and itches for about 10 minutes but with the heat it took my body a lot longer to recover. Hope this helps.

I just talked to my neuro and he thinks that this reaction combined with the IPIR's I experienced the last time with the shakes and chills equals an allergic reaction. He is calling Teva to see what they think. He mentioned trying a 1/2 dose with benadryl, but then seemed to change his mind. He then mentioned filling out a report for the FDA.

I am so tired of making these decisions on my own so I asked him what I should do. He also had mentioned imuran or something similar at one point. He is now recommending no treatment as long as I remain stable in hopes that an oral med comes on the market in the next two years. He said that imuran/similar drugs could also increase your chances of a viral infection/PML and could disqualify me from an oral med in the future.

He is also going to give my name and phone number to MS Society so they can contact me for someone that can use the copaxone.