Input on Copaxone and Gilenya?

A board to discuss the Multiple Sclerosis modifying drug Copaxone

Input on Copaxone and Gilenya?

Postby mimili » Tue May 14, 2013 9:51 pm

Hi!

I was taking Interferons for over five years and have developed some very bad reactions to them...i.e. severe flu-like symptoms.

My Neuro is going to put me on either Copaxone or Gilenya, as a result.

What is your experience with either of these? Do you feel they are "effective"? Side effects you've experienced?

Thanks! [;)]
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Re: Input on Copaxone and Gilenya?

Postby CaliReader » Wed May 15, 2013 7:00 am

Gilenya is supposed to be more 'effective' at reducing lesions, reducing attacks, slowing brain atrophy.
I'm on it. I'm more afraid of MS disability than I am of very rare bad outcomes.
Side effects for me were heart rate slowing on the first dose from mid 70's to 55 beats per minute. That reversed.
I also experienced four days of bad fatigue and about six of very sharp tiny pains in random places plus muscle aches. All better now.

I have a spouse but no kids. If I had small children I would wonder about taking Gilenya.
The bad rare side effects are supposed to go away on stopping the drug,
but they would interfere with life a lot until they got better. Depending on who you listen to, either two or 11 people died
out of the at least 50,000 taking the drug. I'm sure there are a few more unreported deaths.
The long term risk I see is infection. My plan is to be off Gilenya by 60, sooner if I start to get sick a lot.


I never took Copaxone. The needles and the skin reactions and the pain were enough for me to not try it first.
Also, I had MS undiagnosed for at least a decade and I wanted to start with something stronger.
As far as I know, Copaxone doesn't risk any extreme side effects, just chronic annoyance.

Good luck, whatever you choose.
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Re: Input on Copaxone and Gilenya?

Postby sassycam » Wed May 15, 2013 7:51 pm

I take copaxone. The needles get old but I talked with my neurologist thoroughly before I began treatment. I'm recently diagnosed in October of 2012. The positive I can truly say is for someone who has recently posses medical due to graduating share solutions has been responses to my needs and provide help assistance with the drug because I never had prescription insurance. My symptoms have slowed but my fatigue at times is awful and I pay to high for that medicine to help me make it through the day. My doctor says that copaxone has the lowest side effects. He also mentioned a drug that is due on the market by July that is said to be almost a cure drug and it would be pill form. For someone like me I did extensive research when the discussion first began about the possibility. My advice would be that not everyone with this disease is alike, so try till you find something that works and don't ever give up on what you believe to be true. Speaking from experience I've had the disease for almost 6-7 yrs and every doctor I seen told me it was all in my head. Sorry for all the information I just found this site and post and it has been killing me not to find someone that might experience the same doubts. I hope this has helped even the slightest. Good luck.
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Re: Input on Copaxone and Gilenya?

Postby plethora » Wed May 15, 2013 10:48 pm

"Cure drug" due on the market possibly by July? Which drug was he referring to?

I thought Lemtrada is about the only big potential drug in the FDA right now, and that one is an infusion drug....

Thanks!
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