Copaxaone issues?

Hi all,

I'm hoping for some insights.  Here's the summarized version:

8/2/14 - I was trained and started my Copaxone 20mg daily injections.   Everything was great until 8/7/14. Previous to 8/7/14, I had little or no site reactions after about an hour and no other side effects.  However, about an hour after the injection (injection taken at 11am) on 8/7/14, I started to feel very cold, followed by violent shaking and ended up with a fever of 103.6, even after taking Tylenol.  That lasted for several hours and finally the fever broke around 9:30pm. Throughout this whole episode, I had a massive headache, bordering on migraine.

I called Shared Solutions and also the Neuro resident on call and both advised that flu like symptoms are a potential side effect.  Ok, so I give myself a shot on Friday.  Well, the chills and violent shaking were worse.  I had taken tylenol prior to giving the shot, just in case.  After an hour or so of shaking, the fever hit 102.8.  More tylenol, lots of fluids.   Called Shared Solutions and they advised me not to take another shot until I talk to the doctor. Several calls when unreturned but that is a whole other issue. 

On Friday at some point, all my previous injection sites developed welts but they were small and not too bad, maybe an inch or so and just slightly red.  But on Saturday, the site from Thursday started to get bigger and was warm and itchy.  By Sunday the area grew to about 6"x6" with an area of 3"x3" that was kind of purple, not just red.  

Has anyone else had issues such as this?  I haven't had a shot since Friday and will be calling my neuro today, all day, if I have to in order to talk with someone.  I guess I'm afraid that I'm not going to be able to take Copaxone, just when I was starting to feel better. I should mention that last Monday - Wednesday, was the best that I've felt in a very long time!  

I look forward to hearing any experiences and suggestions.

 

Many doctors will tell you that copaxone isn't working at its full potential until 6 + months. I had one of my worst flares 7 months into copaxone. I was sure it wasn't working. I hurried to my neurologist assuming I would have to be switched to a new med. she assured me that even on a disease modifying medication, there will be some flares and progression.

I have been on copaxone now for almost 8 years. It doesn't really do anything for my symptoms. It doesn't make me feel better. I have had very few flares and minimal progression. I am very sure it is working for me.

That doesn't mean it works for everyone unfortunately. A rare few are allergic to it and cannot tolerate it. Luckily, there are several choices out there now for attempting to modify disease progression. You and your doctor can choose a new medication and try again.

Let us know what your doctor says. Best of luck to you! Keep us posted.

I'm sorry! That's a huge bummer. Does your neurologist have any suggestions or is he leaving it up to you?

I am sure you will find something that will work for you. Best of luck.

I would be emotional too!!! I was also given the choice although there were fewer choices when I made mine. I'm sorry I can't be more helpful. I have only been on copaxone.

At one time I considered switching to tecfidera when it came out. It seems that once you get past the adjustment period, it is a well tolerated medication. But one may experience 6 weeks of stomach and intestinal issues.

Take your time and do your pro/con lists. You sound like you have a good head on your shoulders. I am thinking of you. Keep me posted.

I was on copaxone but had a really bad episode in 2011. My neuro switched me to Tysabri. It is an infusion taken every 28 days. I've been on it for about 3 years now. I've had 2 small episodes in that time and fully recovered from both (still have the symptoms from the bad relapse though). Some patients get symptom relief right after the infusion, then slowly regress until they receive the next one. Not me though--my symptoms remain the same 24/7. I do prefer the infusion over self injecting. No needles or medicine in the fridge--yay!

Tysabri is expensive and there are some dangers associated with it. But I like it and plan to stick with it. Give it a look.