Will anyone care to share their experience with copaxone?

[Aliveinme]

Would anyone like to share their experiences with copaxone with me?

I started injections 4/3/09 and continued for 8 days after which I had what I would call severe reactions.  I woke in the middle of the night with chills, nausea, stiffness and weakness.  Decided I wouldn't be able to make it to the bathroom so doubleled up my comforter and tried to lay as still as possible.  It worked.  I went back to sleep.  When I awoke my vision was double I was still nausious and so weak I could barely get out from under the covers.  I did finally manage to get my legs over the side of the bed only to find out that I was so weak I couldn't stand.  The weakness gradually subsided over the course of the day and my vision also improved.  The drug people said that part of this was copaxone related and possibly part of it was MS related.  I have never had an experience like this from ms before.  The doctor said skip an injection and resume.  I didn't untill yesterday.  I was too scared.  Yesterday I did inject the drug again and what do you know?  4-5 hours after the injection the same thing only  a milder version happened again.  Of course now I suspect the drug is the problem.  

[Lulu54]

hi and welcome to the MS forum - there are quite a few copaxone users here, including me.  I have had no problems so far, but we do have some community members who had to stop using copax because of their reactions.  I'm sure they will be happy to share their troubles with you.  

Being the weekend it gets kind of slow around here so you might not get the answers you want until Monday or so.  

Have you contacted your doctor about these reactions again?  I would make that a priority and be thinking about making the switch to a different drug if need be.

welcome again,
Lulu

[Aliveinme]

Thanks Lulu.  I did contact the dr.  Her nurse called and said to skip 1 dose then resume.  It seemed like a case of "the cure is worse than the curse".  I didn't contact the dr a second time because I didn't think I would get any better advise the 2nd time.  
How long have you been injecting?

Aliveinme

[Lulu54]

I started my shots on Sept 26, 2008 - so I have a little over 6 months in so far.  I had one welt experience just last week, but I think it was  because I didn't let the rubbing alcohol dry completely first.  It was a softball sized lump that latest for almost a day.  ouch

I'm trying to remember who it was recenlty that described the same type experience with copax that you are having - hopefully they will see this and jump into the conversation.  you are so right - in your case the cure is worse. I'm sorry it is giving you such fits.

Lu

[HVAC]

Man that is rough! Keep right on it with your Doctor.

I am sure there are other folks with more experience than I.

I am nine days on copaxone. I was great until today. I have not been able to see where I injected the next day. Today when I woke up every injection site was swollen to plum size, hurt and itches like mad. I called the SS nurse she said this is normal. Sometimes you inject for months and then the body reacts. After tonight's injection my throat is itchy like an allergic reaction.  I take zyrtec and and a breathing medication everyday so I think that is helping my reaction some.


A board certified MS nurse explained last week these drugs are designed to produce what normal people's bodies make but MS patients do not. The rub is we still have enough of an immune system so our bodies recognize them as foreign substances and that where the side effects occur. I take zyrtec and and a breathing medication everyday so I think that is why I am not having more trouble. I am hoping my body will adjust.

As each MS patient is different no two people will have exactly the same level of side effects.  

Alex

[Khiba]

I had a similar reaction after 10 days on copaxone without any previous problems at all

Did my 11th  injection and within an hour I started having chills and headache like I was getting the flu. Temperature ran up to 102. I went to bed because I figured I WAS getting sick and shivered and sweated for the next 15 hours. An advil brought the temp down gradually and then I felt fine. No runny nose, no headache no more fever. I skipped the next day of copaxone and felt fine then resumed the shot in the morning the day after. Wham, same reaction. headache, fever, chills etc and another 15 hours in bed.

I called the neurologist and she suggested taking 2 Tylenol and an antihistamine (benedryl, but I am allergic to it so substituted hydroxyzine Atarax which I can take) an hour before the copaxone injection and 2 Tylenol an hour after the shot. Ok, so I took the Tylenol and the atarax and was asleep in 30 minutes and slept the rest of the day. Missed the copaxone shot altogether! The neurologist said she had other patients with this reaction to copaxone.

Called Shared Solutions and they were baffled and said that is not a copaxone reaction. I reported the event to the FDA.

I have not taken an injection since, needless to say. Cannot afford to sleep my life away or have flu for 15 hours out of ever 24. For the time being I am taking LDN and feel so much better. Will see the Neurologist again mid May and rehash the drugs.

This is a RARE reaction to Copaxone however.

Jessica

[Salamander2]

Hi,
I took Copaxone for a couple of months and discontinued due to site reactions.  There is another member who had similar reactions.  The medication does help with the MS symptoms, but it was too harsh for my body.  Everyone is different and many have used Copaxone successfully for a long time.  One thing I have found is that the Shared Solution Nurses are trained and paid to help patient through problems.  My issue was that they would tell me that my reactions were normal and my Neuro said they were not.  So I chose to take the advise of my doc and change med.  It is ultimately your decision which med to use.
Blessings,
Sally

[rendean]

I have had reations similar to what you have experienced. The SS nurse I spoke with today said it is a reaction to Copaxone and the new prescrbing info from April of this year DOES list the chills, fever , etc to  the copaxone in 3% (If I remember correctly) of patients. I have just spent the last two days miserable after waking in the middle of the night with chills and a a fever which only served to aggravate the pre-existing bone pain in my legs. Fatigue and lethary the rest of the day would be an understatement.

I was told to call my neuro tomorrow and by happenstance I also have an appt. with my internal med doc tomorrow afternoon so he can rule out infection as well.

The suggestion from SS was to take today's dose earlier to see if it occurs in 4-5 hours, and before bedtime, to try to differentiate it from an infection. She also suggested taking an analgesic pre injection.

Will see how tonight goes. Need to be able to function at work tomorrow so I hope SS is correct.