Is there anyone taking oral DMD yet?

[janine01]

I was at my neuro today. I have been on copaxone for almost 9 months. I am still getting lesions. He said he is now considering  Gilenya(?). To start I have to go for an eye exam and then take the first dose being monitored with an ekg for 6 hours. I'm curious if anyone is taking the new oral drug and have any side effects.

[opie74]

My Doc recommended it.  I was on Betaseron for 1 year prior to becomming pregnant.  In that year I had 3 relapses that required steroids.  He said that ment that the interferron was not effective enough.  He sent me home with information and told me to think about it.  I am almost full term, and he wants my answer when I deliver (probably this month).  Keep in touch with me and I will let you know what I decide andhow it goes.  

Right niw, I am leaning toward trying it.  I really don't have a problem with the injections, but 3 relapses in a year just after finally being Dx is a lot to deal with with 2 small children.  If the new med can cut down on that number with 3 children now, I suppose it is worth a try.

Ann

[cuttersmom]

I went to my neuro asking to be put on Gilenya, as I am horrible at doing my Copaxone regularly.  She said she absolutely will not put any of her patients on the drug, due to the side effects, i.e. cancer, macular edema, AV block, bradycardia, etc.  Someone else pointed out in their post that these went away when the med was stopped, and I had seen that as well, but why take the chance if you will only end up stopping the drug.

My neuro said that Teva is trialing an oral med, that so far has been seen to have not side effects, although it is probably 2 years away.  At this point, I guess it's "keep poking"!

[Sparkysarah]

At the end of the day this is your decision. However for the drug to be licensed it has already been through extensive testing but obviously the unknown is the longer term side effects.  As you may know I am on a drug trial for a very similar new oral drug in UK and you may be interested to read my journal which shows you how carefully drug trial patients are monitored.

Personally for me I am very excited about being on this trial and my Consultant feels that oral drugs are the way forward. If I am on the placebo now then I will go on the drug in March in the extension trial for 2 years.  I expect that the tests you will have done will mirror the ones I am having done...but not on such a regular basis as the initial first dose is the most crucial. Of the ten of us on the trial one developed breathing problems and she was not allowed to continue with trial but everyone else I believe is feeling well and have had no side effects.  

I would follow your instinct and do what feels right for you but talk to your consultant.

Best wishes

Sarah

[sllowe]

Sorry your still getting new lesions :( just dropping this in here hoping some of our discussions help w/your thoughts.

http://www.medhelp.org/posts/Multiple-Sclerosis/Gilenya-fingolimod/show/1374357

Have you tried any of the interferons? I'm sorry if you've already mentioned and I'm forgetting.
-Shell

[janine01]

Thank you all for your answers. I'm not sure what to do,but I will keep investigating.

[shoshin]

I was in a trial for Gilenya for a year and half and 99% sure I was on the real med (really low WBC that went back to normal when I stopped the trial). I did not have any noticeable side effects, but I didn't get any noticeable benefits, either. On the other hand, I don't think I really had RRMS despite getting in this trial somehow. The jury is still out on long-term side effects, but with a couple exceptions on a higher dose than the one the FDA approved, the short-term side effects seem to be reversible if you go off the drug.

sho

[meg321]

My MS Doc doesn't want me to take it this soon either, but then I also COPD.

meg

[daisy.girl]

I too was offered it, but too new, with no long term studies yet....I passed.

[Willowwoman777]

It was offered to me with the admonishment to check the side effects due to having multiple ai conditions and mild copd. I am opting out as one of the side effects noticed is diminished lung function over time and would not be beneficial with my having mild copd.