A board to discuss the Multiple Sclerosis modifying drug Copaxone
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drr314
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by drr314 » Tue Jul 24, 2012 2:06 pm
I now have these itchy bumps all over my hands and fingers. And itchy patches on several spots on my body. My neuro wants me to stop the copaxone and start an interferon? I don't want to go that route. I don't know what to do. I am so sick of this, i can't take much more. can someone please give me some advice?
thanks, Dave
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patticake66
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by patticake66 » Tue Jul 24, 2012 4:05 pm
Hi...I have been on Copaxone for 3 years. For the past two, I have been getting red, itchy patches/bumps/hives on my legs...especially my calfs. They come and go. Sometimes I get 4 to 5 at a time and then I will just get 1. I take Copaxone every other day along with LDN. I didn't know what to do about the red bumps/hives etc. so I went to a skin specialist at NYU in NY city. After a number of tests to rule out everything else, he told me it definitly was a reaction to the meds. It turns out to be the Copaxone. I saw my neuro in January after an annoying breakout and she told me that if that is the least of my reactions on the medication, that I am ahead of the game. I asked her if I was developing an allergy to Copax and she said I would have experienced this in the beginning if it was an allergic reaction. She pretty much told me that I needed to live with the skin reaction. I will not take any other meds anyway so I am dealing with the reaction. But she did not recommend me changing meds. She did not seemed concerned about the skin reaction. How about getting another opinion?
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drr314
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by drr314 » Tue Jul 24, 2012 4:14 pm
I probably could live with a few hive here and there. but I cannot take these itchy bumps all over my hands. I just got out the shower, and it is driving me insane! My neuro is at Johns Hopkins Hospital, one of the best in the country. If this is from the copaxone, there is no way I can put up with this. And i have a high tolerance for pain, etc!!!
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patticake66
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by patticake66 » Tue Jul 24, 2012 4:24 pm
Maybe there is a chance that all of this will subside over time. Maybe it is your body's way of getting used to the medication. I can't say I know how you feel but copaxone doesn't start working until it is in your body for at least 7-9 months. My advice....I don't know how bad your physical state is but before I try the other drugs, I would try LDN. Also, keep in mind that BG-12 is on the way....soon. If you really don't want to stay with copaxone, go LDN and hang in there until BG.
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drr314
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by drr314 » Tue Jul 24, 2012 4:42 pm
Please forgive me but I do not know what LDN is. I was only diagnosed on April 27th 2012, with MS and I am still learning. It is so overwhelming.
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patticake66
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by patticake66 » Wed Jul 25, 2012 5:54 am
sorry....I know how overwhelming it can be. Google LDN for MS and read all about it. There is plenty of info out there to give you an idea of what it is. There is also an LDN board on thisisms. I know it is not an easy time but I found that the more I educated myself on MS and everything about it, the better I felt but it sometimes became a little confusing. You do what is best for you....
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shaight
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by shaight » Wed Jul 25, 2012 10:26 am
seems like you could develop and allergy to copaxone over time, right? i have no idea, but my wife became allergic to shellfish in her twenties...she had eaten it her entire life up until that point.
LDN is Low Dose Naltrexone. the whole thing is overwhelming when you are first diagnosed. it's overwhelming for those that have been diagnosed for years! the reports and trials contain so much information and so many subtle conflicts that you just don't know what to think. then there is constantly new information coming to light...which there apparently has been for years...but then the end result seems to stay relatively the same. everyone is different and reacts differently to the treatments.
good luck!
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Cholderby
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by Cholderby » Sun May 26, 2013 5:51 pm
I realize this is a year old, but just in case someone stumbles accross this and says "I have that too..."
I had allergic reactions to copaxone from the beginning (and it's only been 5 weeks). They had me coat the injection area with diphenhydramine gel, cover it with plastic wrap for 10 minutes, wipe it off (no alcohol), inject (manual is way better than autoject because it goes in more slowly), and then top it off with more diphenhydramine gel.
The whole process makes it even more of a time-consuming pain than before, but it really reduces the hives.
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cfarris412
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by cfarris412 » Mon Jun 10, 2013 11:20 am
I just started Copaxone and have had no bad side effects, but only been on it for 16 days. Very little site reaction whats up with the itching and bumps you talk about having?
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