Coming up on 15 years Copaxone
I thought I might pop in here and write a brief message on my Copaxone experience.
I was diagnosed in '99 after going through my version of the "usual stuff" when you develop MS. It started with a series of attacks that caused various problems, including parasthesias, pain, balance issues, optical neuritis...you name it.
My diagnosis was easily confirmed by MRI and lumbar tap results. So at least that was easy.
I changed neuros when the one that dx'd me said I was on my own, and that no treatment would help me. Gee, thanks! He said something about me having primary progressive and sent me off with a pamphlet about MS. Thanks, again.
Anyway, new neuro changed my diagnosis to R/R since that made it possible to get one of the 3 available drugs. I chose Copaxone based on the limited data at the time.
In those days, we had to mix the medicine so to speak, and the needles were bigger than what Teva uses now with the pre-mixed injections. I got used to the painful site reactions and my MS attacks became less frequent, and not as severe. I have remained on the 20mg 7 times a week routine for the last 15 years, and I now am going on 6 years since my last notable relapse.
In these 15 years, I returned to work, remained on 2 feet, only occasionally needing a cane to walk. My mobility is pretty good, although I do detect a somewhat gradual decline in stamina and strength. That could easily be attributed to age, as I am now 63, not 48 like I was. Copaxone doesn't seem to help with aging much. But I am counting myself as a success overall. Considering I was heading straight downhill at the time I was Dx'd, things have been remarkably good.
On the other hand, I have had to expand my injections sites to just about anywhere there is some fatty tissue to jab. The normal sites are not really good for men anyway. Not many men can use the area above the knee, or in the back of the upper arm. If you're in reasonable shape, and you're a guy, those places just don't like being injected with Copaxone. It feels like a Drano shot, ouch. No thanks. I found there are some better places around my middle, now that I have put on some weight. So I use those. I do have a pretty well-used hide at this point, but it's a small price to pay for being vertical and able to live a mostly normal life. Yes, I do have some minor knots and bumps here and there, and I seldom get away with no site reactions from my shots, but it seems like a small price to pay.
Now that there is more data on Copaxone, I am glad that I chose this treatment.
I am approaching Medicare age though and am concerned about my supplemental and co-pays and whether or not the generics will be less expensive. I'd like to stay on Copaxone, but am ambivalent about paying 1500.00 a month or more. It's very ominous. I have had an employer provided plan that covers Copaxone 100% with a 10.00 copay. But that will end when I am 65 and fully out of the company plan.
So if you are recently diagnosed and trying to pick a treatment, this might be good to know, that I am convinced that Copaxone is what kept me from a downward spiral of relapses and disability. Your mileage may vary, but for me, I think it's made a big difference.
I was diagnosed in '99 after going through my version of the "usual stuff" when you develop MS. It started with a series of attacks that caused various problems, including parasthesias, pain, balance issues, optical neuritis...you name it.
My diagnosis was easily confirmed by MRI and lumbar tap results. So at least that was easy.
I changed neuros when the one that dx'd me said I was on my own, and that no treatment would help me. Gee, thanks! He said something about me having primary progressive and sent me off with a pamphlet about MS. Thanks, again.
Anyway, new neuro changed my diagnosis to R/R since that made it possible to get one of the 3 available drugs. I chose Copaxone based on the limited data at the time.
In those days, we had to mix the medicine so to speak, and the needles were bigger than what Teva uses now with the pre-mixed injections. I got used to the painful site reactions and my MS attacks became less frequent, and not as severe. I have remained on the 20mg 7 times a week routine for the last 15 years, and I now am going on 6 years since my last notable relapse.
In these 15 years, I returned to work, remained on 2 feet, only occasionally needing a cane to walk. My mobility is pretty good, although I do detect a somewhat gradual decline in stamina and strength. That could easily be attributed to age, as I am now 63, not 48 like I was.
Copaxone doesn't seem to help with aging much. But I am counting myself as a success overall. Considering I was heading straight downhill at the time I was Dx'd, things have been remarkably good.On the other hand, I have had to expand my injections sites to just about anywhere there is some fatty tissue to jab. The normal sites are not really good for men anyway. Not many men can use the area above the knee, or in the back of the upper arm. If you're in reasonable shape, and you're a guy, those places just don't like being injected with Copaxone. It feels like a Drano shot, ouch. No thanks. I found there are some better places around my middle, now that I have put on some weight. So I use those. I do have a pretty well-used hide at this point, but it's a small price to pay for being vertical and able to live a mostly normal life. Yes, I do have some minor knots and bumps here and there, and I seldom get away with no site reactions from my shots, but it seems like a small price to pay.
Now that there is more data on Copaxone, I am glad that I chose this treatment.
I am approaching Medicare age though and am concerned about my supplemental and co-pays and whether or not the generics will be less expensive. I'd like to stay on Copaxone, but am ambivalent about paying 1500.00 a month or more. It's very ominous. I have had an employer provided plan that covers Copaxone 100% with a 10.00 copay. But that will end when I am 65 and fully out of the company plan.
So if you are recently diagnosed and trying to pick a treatment, this might be good to know, that I am convinced that Copaxone is what kept me from a downward spiral of relapses and disability. Your mileage may vary, but for me, I think it's made a big difference.
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