Have been off dmds for a long time and dr says "try tecfidera!'

[Krysalus]

I used to be on Rebif but stopped taking it because I hated how I felt. Flu symptoms, hair loss, giant red marks - plus I really hate needles. So after being off all dmds for over 10 years, my new neuro says she wants time to try tecfidera. I'm leary of what I am reading about it. Any advice that can help me make the decision between tecfidera and not trying it? I am RRMS and more Remitting that relapsing at this point in time. I'm not sure how much is "this will help you" versus 'what do you mean you are taking nothing?"

[VikingKitty]

Hi Krysalus,

I see this post is 2 months old so not sure if you went with the Tecfidera or not. Btw, they now have a generic made by either Mylan or Teva. It’s great that you are more “remitting” than “relapsing.” Once I hit my mid-40s, I became or relapsing than remitting. I’d been on meds for 5 years, took a break, and recently went back on the generic Tecfidera.

From what I gather, the choice to be on meds is a pretty individual decision. I was over 50 when I decided to quit as I hadn’t relapsed in years, however, about a year and a half after quitting, I’ve had two relapses this year….One that needed steroids because of weakness in my left leg causing walking and driving difficulties.

So back to the Tecfidera – This will be my third time on it. The first time I was on it for 2 years. The second time, a few weeks as I couldn’t tolerate the side effects. I had more side effects than the first time – not sure why? This time so far so good. The side effects have just been flushing 3-4 hours after I take the capsule. Those side effects usually go away after about a month or so.

The thing is with relapsing/remitting, you just never know when you are going to relapse. I got overconfident and quit my meds thinking I’d be fine. Some people are some are not.

Just curious if you did go with the Tec, how things are working out if you did or if you went with another therapy or decided to continue no meds?

[lindaincolorado]

Hey Krysalus,
did you go on the med ? Whatever your choice I hope you are well/ doing well
Please let us know.
Linda

[Krysalus]

Hi,
Sorry it took me so long to get back to answer. I've been dealing with a lot of things. My mom passed. We had to get her place ready to sell. Dividing up her stuff. It's been stressful to say the least.
I decided that I've been fine so far so I'm not going to go back on a med. I was diagnosed back way before they had MRIs and it was confirmed by all those wonderful fancy tests when I was much older. I'm 58 now. I'm mostly okay. I use a cane when I need too but for the most part, most people don't know anything is wrong other than I tire easily and sometimes I prefer to pass on going out in favor of staying in and watching a movie at home. It's just easier than trying to navigate stairs, etc.. A dmd won't make that stop. Thanks for the concern and again, my apologies for taking so long to answer.
Stay well.

[pennstater]

Truly sorry to hear about your mother's passing. It truly is an emotional and stressful time. Glad you were able to get thru it without any relapses.

They are actually doing studies now of safety for people 60 and over to come off DMTs. So you may be ahead of the curve, but glad it is working for you. It sounds like you have had MS quite a long time, so I would think odds are in your favor that you no longer have relapses. If you have had any recent MRIs that show active and/or new lesions though, you may want to have a discussion about the DMT again. If your MRIs have been stable, awesome.