Copaxone 40mg and intense exercise

A board to discuss the Multiple Sclerosis modifying drug Copaxone
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joeymia
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Copaxone 40mg and intense exercise

Post by joeymia »

Hello been a long while since I posted on this site. I started taking 20mg Copaxone around 2010. I used it everyday for 3 years but eventually had to stop. I ran out of injection sites my tissue became really hard. I am skinny so not much fat on me so I repeated a lot of the injection sites. Before my MS diagnoses I was active and would run. Not a crazy amount I never trained for anything etc... probably the most I ran was 4-5 miles at that time which to me was great! Little did I know... When I was diagnosed it was because my legs were numb while running so I stopped exercising because running became painful. This was around 2010.

So 2014 pretty much everything changed no more Copaxone but I also wasn't feeling terrible. I was at my doctor's office in January and he suggested I do Bike MS with him. I had a mountain bike and rode a bit in 2012-2013 but I never did the road bike thing even though I LOVED to ride my bike as a kid for some reason I never did it as an adult. So I went on Craigslist bought a pretty amazing road bike. I was a natural at it... 3 months later in March of 2014 I did the Bike MS event. Rode 100 miles the first day and 80 miles the next. It didn't stop from there. I started attending the group rides in my area and 100 mile rides became something I did 2-3 times per month. In 2014 I rode about 12k miles alone! In 2015 I got a USA Cycling license and did amateur race events. Placing top 10 (7th) in 2 events that year. I was in such good shape that I could even run! At one point I took a few days off from riding and decided to run. One day as a joke in a group text my bike friends were like "lol run a half marathon". Put on my sneakers and ran 13 miles without even a sip of water in a little over an hour. Not bad for someone who was supposed to be a cripple!

Well my luck ended at the end of 2015. I caught the "Flu" was sick for a whole week, felt good one day and then the very next day I ended up in the hospital. Somehow whatever virus I had got into my heart and I was diagnosed with myocarditis. My heart was inflamed. Spent a week in the hospital with a ton of IV drugs etc... I got really lucky tho after numerous tests, MRI, Cat Scan etc... They determined I had no damage.

2016 was terrible tho. I tried running after my Cardiologist gave me the ok a month after I got of the hospital. I watched my heart rate all the time. Started biking again but then I started having panic attacks. The stress of everything hit me at once and I was unable to exercise. It's taken me a year to fully recover. The myocarditis had nothing to do with MS it was just bad luck. Of course not being able to ride/exercise and my mental state led to a few relapses. Which got me back to neurologist after not visiting for about 3 years.

Ok sorry about the long back story. I just want people to understand my situation.

So my question is there anyone here who takes Copaxone or knows of someone who can still compete competitively? Riding/Racing changed my life for the better but I never did any intense exercise while on Copaxone. I have no idea if there are side effects. Is it safe?
ElliotB
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Re: Copaxone 40mg and intense exercise

Post by ElliotB »

I take 20mg daily and exercise vigorously on an almost daily basis BUT wear a cooling vest during such exercises. As every person responds differently, you will need to see for yourself what you can do and handle and how your body responds.

I do think that preventing getting hot is paramount but there are some that don't have heat issues.

And it may be wise to work up to higher levels of exercise over a reasonable period of time to get back into it.
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joeymia
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Re: Copaxone 40mg and intense exercise

Post by joeymia »

ElliotB wrote:I take 20mg daily and exercise vigorously on an almost daily basis BUT wear a cooling vest during such exercises. As every person responds differently, you will need to see for yourself what you can do and handle and how your body responds.

I do think that preventing getting hot is paramount but there are some that don't have heat issues.

And it may be wise to work up to higher levels of exercise over a reasonable period of time to get back into it.

I have heat issues but for those 2-3 years where I was at my peak I did not care. I could get into a zone and would not let the discomfort bother me. IMO it made me stronger my pain tolerance was very high. Just a few weeks before the bad flu and myocarditis that took me out I was doing very intense training toward the run up to the State Championship race. I was making my best numbers and gains during those weeks. I was at my peak when I got taken out by illness.

My concern is that besides the injection site issues I tolerated Copaxone fine. Only problem was the occasional post injection reaction but IMO that only happened when I injected incorrectly. I wasn't athletic at all while on my short time with Copaxone tho. It's all unknown to me will there be some limitations now or will Copaxone cause some issues after 4-5 hours on a bike.
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joeymia
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Re: Copaxone 40mg and intense exercise

Post by joeymia »

This is what I was doing in terms of time on the bike during the time before I got sick. Time/mileage does not include rides done in indoors which I believe there was 3 in there and also whatever cross training I did. This will give you an idea of how my 2 years of no copaxone and no relapses was like...

Image
ElliotB
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Re: Copaxone 40mg and intense exercise

Post by ElliotB »

IMHO, heat should be more of a concern than the Copaxone, but since you have concerns, you may want to consult Shared Solutions.
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NHE
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Re: Copaxone 40mg and intense exercise

Post by NHE »

joeymia wrote:Well my luck ended at the end of 2015. I caught the "Flu" was sick for a whole week, felt good one day and then the very next day I ended up in the hospital. Somehow whatever virus I had got into my heart and I was diagnosed with myocarditis. My heart was inflamed. Spent a week in the hospital with a ton of IV drugs etc... I got really lucky tho after numerous tests, MRI, Cat Scan etc... They determined I had no damage.
I can't answer your question about Copaxone, but I wanted to share that Dr. Joel Fuhrman has stated that the risk of viral myocarditis can be linked to a diet low in phytonutrients.



The link is to the specific quote in the video. However, I recommend watching the whole program.
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