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Copaxone concerns


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Old 01-30-2011, 08:19 PM   #1
teb79
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Copaxone concerns

Hello everyone.
I have recently started Copaxone and have been taking it for 3 wks and I have some concerns. I am getting horrible site reactions including bruising, nodules under the skin, and discomfort. Will this ever go away? My legs look the worst with bruises and the nodules under my skin are palpable and then start to itch. Err.... so annoying!
Also, for about 5 mins after I inject myself, there is a HORRIBLE stinging that occurs. Will that go away with time? It is so uncomfortable and the worst part of the injection. I hear that is very common and hoping it goes away over time.

Thank you all in advance!

 
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Old 01-31-2011, 08:24 AM   #2
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Re: Copaxone concerns

Teb, I started copaxone in May of 2010 and yes the site reactions will improve but mine have not gone away. I also bruise, get hard nodules, itchy, red, and sting. The stinging is pretty much gone and the itch/pain only happens if I touch the area so I just avoid touching it--seriously. But, overall it's improved and I just ignore the best I can. I take the ice pack 20-30 seconds before and ice hard afterwards until sting stops-- 20-30 seconds. I also hope it continues to improve for us! I do not use the alcohol pads and I inject manually. Sometimes it looks like my thigh may have a permanent indent but it could just be my cellulose.

 
Old 01-31-2011, 08:51 AM   #3
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Re: Copaxone concerns

Thank you JodiH. It is awful and I hope it improves for us!
My legs look horrible with bruising and nodules. The rest of my body is fine- it seems to irritate my legs the most. I also have noticed that when I start scratching the sites, I can't stop!!!! When I leave them alone it gets better but it is so irritating.
Glad to hear it does improve- thank you for your input! I really appreciate it!

 
Old 01-31-2011, 01:30 PM   #4
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Re: Copaxone concerns

Serious, try not to touch the area. I notice I don't even feel them anymore as long as I don't touch the area. It seems to be taking 3-4 days for the spot to heal before the process starts all over again. Are you doing manual or autoinject? I wish I could do the auto for the arms as it's so hard to poke under there so I lean my arm over a chair in this ackward position. Sometimes it's hard to get the shot moving too...like it gets stuck.

 
Old 01-31-2011, 01:39 PM   #5
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Re: Copaxone concerns

I do the autoinject. It is fast and easy and so simple. For my arms, I have my fiance do it because of the awkward position.
My legs look HORRIBLE!!! I know I need to stop touching it and hopefully it will not bother me! Thank you for your input. This whole thing is so new to me and hearing others stories really helps me!!! Thank you!

 
Old 04-24-2011, 09:42 AM   #6
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Re: Copaxone concerns

Been quite a while since I posted and being my neuro started me on Cop, I thought I'd add to this topic instead of starting a new one. First injection went well, no immediate adverse effects, but 7 hrs later, my body and joints started to ache and stiffen immensely. This subsided by day 3 but returned with a vengeance on day 6. Neuro said that this was not really common with Cop, but nonetheless, it is happening. I stopped taking it 3 days ago and I am still getting the aches and stiffness. Any ideas how long it takes to get out of the system? Has this happened to anyone else?

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Old 04-24-2011, 04:44 PM   #7
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Re: Copaxone concerns

Hello old friend! How the heck are you and Happy easter!
Hey, when I started Copaxone - I did fine for the first two shots. And the 3rd one ended up with me stopping breathing. That included a 911 call and a trip to the ER. 4th shot, was given to me in the hospital, where it happened again. Enough of that. I never did another shot of Copaxone....it took about 2 weeks for it to get out of my system...and about 6 weeks before they would let me try Rebif. Which as you know, Ive been on ever since without anything unusual to report (and in fact almost ALL good things to report).

This muscle thing...any chance its just you? I seem to remember you hit the gym regularly and heavy...is that still true? or, is it possible that you have picked up the common Flu, which is DEFINATELY going around and the symptoms you are describing are also on target with that.....are you having any fevers? Rashes? Unusual other symptoms. I have to agree Ive never heard of anyone having the symtoms you describe with Copaxone...flu like symptoms usually accompany Interferons, which Copaxone isnt.

Id love to hear whats next for you...you have certainly been thru the gauntlet of meds and such....how are you feeling overall? How was your last MRI? Is there a reason we are trying Copaxone now, after not being on anything for so long? Whats the latest? Please relax...you do know that humidity has entered our part of the country- and along with that is the transition from cold to hot....you should be a pro at this, but in case you forgot- Tis the season. Relapses and feeling like crap are upon us for a few weeks...
hang tough pal.

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Old 04-24-2011, 06:04 PM   #8
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Re: Copaxone concerns

Hey sweetie, happy Easter to you and yours also. Doing some research I have discovered that Cop can cause joint pain and overall pain in general. Of course, it happens to me.(go figure). My last MRI came back excellent actually and I sat with my neuro bantering back & forth for 2+ hours over not putting me on any DMD. Well I gave in and agreed to do Cop due to the minimal level of side effects that their Marketing Dept spins to consumers. (I must admit my neuro's rationalization made too much sense to me not to at least try.) Otherwise, I'm doing rather well with this monster. Fatigue does get to me more than before, but as you well know, stressful careers may have to be factored into that entire fatigue equation. After I get through these current side effects, I'm pretty much resigned to not doing any DMD. Immunomodulators and I just don't seem to get along.

I hope you are doing well and yes summer is coming. If it ever stops raining. Take care XOXO
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Last edited by PghGuy00; 04-24-2011 at 06:11 PM. Reason: typo

 
Old 04-26-2011, 05:22 AM   #9
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Re: Copaxone concerns

The stinging gets better, but the lumps stay under the skin for a long time. I took Copaxone for 7 years. It ended up causing severe anemia and I almost died from it, so I quit using it. It's taken my body over a year to recover from all the effects such as anemia, nail fungus, hair loss, reduction in the lumps under the skin. I know Copaxone and Avonex are the only treatment for MS, but I'm not sure their toxic effects on the body are worth it.

 
Old 04-26-2011, 05:03 PM   #10
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Re: Copaxone concerns

Julperr, I am concerned to see your post as I never heard of all of those long term symptoms with cop, such as anemia, hair loss etc.... that is alarming.

I hope you recover and find something that works. I am going to ask my dr. about it next month.

 
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