Patients Multiple sclerosis
Copaxone for relapsing MS
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Copaxone is one of the treatments for MS, which is aimed at preventing the relapses and slowing down the evolution of the disease and has not very significant side effects. Even though it is not a very strong drug, it is often prescribed for people with RRMS.
Have you had any experience with copaxone? What did you think about its effectiveness, side effects, etc?
If you have any advice for those who are just starting or are going to start on this medication, don't hesitate to give your opinion!
I started Copaxone in June 2006 -3 years after diagnosis (4 years after onset).My relapses were all lfe affecting and invariably affected my legs.
Since going on Copaxone Ive only had 1 bad relapse and that was at a time when I was both physically and emotionally burnt out ( Id been supporting my best friend in the latter stages of cancer throughout the year as well as working -she died 4 weeks before the relapse). Ive never made it to 5 years relapse free -but Ive got pretty close.
Recent relapses have been minor and 'sensory' only (2 in 3 years) so for me Copaxone is a winner
Site reactions are a major issue for some people and whereas many people's reactions calm down over time, mine haven't and the leg ones usually leave me in pain when walking. Transferring to the 3 times a week dose instead of the every day protocol means I do get a couple of days when its not so much of an issue now. The list of side effects in the packaging is now longer than when I started and I do have other side effects. But the bottom line is Im still independent, Ive gone back to work full time and am pretty much fully mobile, though stairs and getting into standing position require effort.
Copaxone may not have the stats behind it that some of the newer drugs have in the percentage of reducing relapses etc but I would definitely recommend it as a first step on the DMD ladder because if it works the side effects are less serious than the ones for the newer drugs. Copaxone also does not require you to need regular blood tests and also you do not develop antibodies which can stop it working, as can happen with some of the other older DMDs.
Thank you very much for sharing your experience and your opinion with us, @anne2211 !
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I started copaxone in 2015, about 10 months after my diagnosis. Had to come off it in 2021, as my MS continued to advance. What started out as simple partial seizures in the beginning, turned into generalised, tonic-clonic seizures last year. I had to be ambulanced to hospital, spent 27 days in, until my neuro team managed to get me on ocrevus. Apparently, I have a very active form of RRMS, to the point where radiographers thought it could be tumefactive MS. I was terrified when I heard that, but mum helped me smile and laugh about it. We dub it the M&S MS, and if you have heard of Marks & Spencers in the UK, you know why 🤣😜 I've been given the all clear of that one, and I don't have to worry about where to inject myself next. I did have a bit if a routine with the injections: when you take it out of the fridge, put it under your armpit for 10ish minutes. When you think it's warm enough, use your lips to test how warm it is (like giving it a kiss) before you load it up in the injector. I had to ask the hospital for a form for self-medicating, because it wasn't a neurological hospital, so many drs and nurses have never come across it. I've even had students watch me as I injected, just because they thought it was something they would never come across again 🤗 thank goodness they only watched me inject into my stomach, because I don't really know what they would think if I undressed my bottom half to get my thighs. At least now I just have to remember which arm to have bloods drawn, as it messes up getting an infusion needle in 2 days later 🤷♀️
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