I've been on Tecfidera for 18 months. No side effects but it's efficacy in slowing progression is 35-40% Although no major relapses but not as aggressive in slowing progression as my previous DMD Tysabri (efficacy 70% slow progression).

After I tested positive for the JC Virus and then being at risk of acquiring (serious sometimes fatal brain infection) I had to go off Tysabri :(

At that point My neuro suggested Tecfidera oral.

As far as Gilenya, you should read up (the web) about it's safety profile because I think there are some Coronary (heart condition) riks. As a result you have to have your heart monitored for the first 4 month

I know several people who are on Gilenya and doing just fine. I also know several people who are on Tecfidera. Some had early side effects for the first 3 months. Upset stomach, flushing, headache but subsided after 3 months.

Hope this helps

oh sorry PML is the serious brain infection you could get if you were dxd as JC virus positive. Also with the JC Virus it gradually becomes more of a serious risk after you've been on Tysabri beyond 3 years (36 infusions).

I was on Gilenya for 1 year. I stayed stable, no progression. I was taken off of it when an negative reaction was found them Gilanya & my daily migraine medicine.

I've been on Tecfidera for 20 months w/ no additional symptoms or side effects. Some of my MS symptoms have gone away. I'm waiting better than I have in years.

Sometimes I just don't like spell correct - ** I'm walking better than I have in years since starting Tecfidera

thank you both for sharing your experiences. I too have JC Virus, with a high index number, making my potential risk of PML, pretty risky, as I am also currently on Tysabri and have been for over 3 years.
Thus, the reason my Neuro wants me to get off Tysabri, and onto one of these medications.

I am a little leary getting off of Tysabri, as I had to be taken off a couple years ago, due to a move, and at that time, when taken off, it only took a few months, and I had 30 new active lesions. So, I am hoping that if I stop Tysabri, and change to another treatment, it will be one that helps!
The risk of staying on Tysabri, is much greater now, so, I will switch. Just not sure which one yet.
CNOELLERT and ChrissyH, I appreciate both of your answers.

My doctor wanted to try me on Tecfidera because of side effects from Rebif. I tried it and got side effects of my MS getting worse. I got bad, worse constipation and burning feet. I was told that these were MS symptoms not side effects. The problem was that I didn't have burning feet problems before. They went away when I went off of Tecfedera and the constipation went back to being controllable.

So I had to stop taking it. Good luck. Everyone is different. I know someone who got bad GI problems from Tecfidera but I didn't.

My doctor didn't want to try Gilenya because he said of heart problems from it and wouldn't give it to anyone over 50. So everyone is different. Things work for some and not for others and some people have side effects and others not so much.

For me anything I have tried other than Rebif makes my MS worse. Good luck to you whatever you use. Best to you.

Thank you ezone, I am also over 50, so, maybe your doc's advice is worth considering also! Decisions, decisions...I really do appreciate the help in this. Knowledge is a good thing when we encounter the paths that MS takes us on.
I truely do not want to deal with more issues, especially due from reactions of new med's. I am still undecided. But, sure do appreciate your info. as well as the others who have shared!

I have been on Gilenya for 8 years. (I was in the clinical trial.) Initially, I ended up with several UTI's and upper respiratory infections until my body adapted to the lowered immunity I am guessing. I did get a case of shingles (again, early in the course of starting it), but have also had shingles prior to this medicine 3 other times (usually with taking steroids). I cannot remember if that was the case on G though, but think it was when I had bronchitis and was put on steroids to combat it.

I did relapse when I was on Avonex prior to Gilenya, but have not had one on this medicine, nor have I had any new lesions showing on my MRIs. I consider that the best medicine for me. I know there isn't anything out there that can reverse prior damage, so avoiding new damage in my eyes is amazing.

Best of luck. If I can answer more for you please message me because for some reason even when I check the box to get replies, I never get emails about them.

Sue

Like some others, I was on Ty and then the whole JC virus thing...well, everyone knows about that. I was put on Tec but the gastro stuff was not nice. Now I am on Gilenya. It has been almost 3 months. No side effects. I go for an eye check in a couple of weeks, but I don't believe there is a problem. I miss Ty, though. Good stuff.

P.S. I wanted to add that when I was taken off Ty, I ended up with active lesions. My neuro was concerned that this would happen. I guess there is an issue with some of us when you get off. This info might have been helpful before beginning this treatment. All in all, it worked great when I was on it.

I have been on Gilenya for a couple years. No side effects, no new lesions.

Want to update from my post last week.

This pertains to those of you who were on Tysabri but had to go off because they tested positive for JC Virus:

There is a new JC Virus blood test available now that will index your risk of getting PML. I took the test a few months ago and the results showed I was in a very low % of risk index.

With that result I finally decided to go back on Tysabri and my first infusion was today!!!

Before today I had switched to Tecfidera and was on it for 17 months. Although Tecfidera allowed for convenient daily pills, I just didn't feel as (MS) good as I did on when I was on Tysabri. For me Tysabri seemed to produce what I'll call a "kick" type feeling. (at least for me).

I didn't get feel that "kick" feeling being on Tecfidera. Plus according to my recent MRI results, although it showed no new lesions, there was activity in areas that were previously stable.This result kind of freaked me out! Plus in all honesty while on Tecfidera I felt like there was some worsening with my MS cognitive symptoms.

So now I decided to go back on Tysabri again since my PML risk was indexed in a low percentile. Plus with a 2 yr break from Tysabri, starting it again now I get to start back at #1 infusion not #43 which would have been the count had I stayed on it 2 yrs. ago. after I tested positive for JCV. Back then the JCV test was limited to either positive or negative .

Why is this important? Because PML risks become much more prevalent once you get to infusion #30+.

Anyway for any of you JCV positive people who really want to go back on Tysabri you might want to take this new JCV indexing blood test . This will verify your specific PML risk index. If like me you're in a low percentile the decision to go back on Tysabri might not be as risky.

I have been on tecfidera for about a year. So far so good. I had a lot of side effects in the beginning. Mostly I am ok now, but it does make my stomach acidic, makes me prone to have loose stools, and the occasional flushing incident.
My doctor says there is some risk of getting pml from tecfidera too. I have had a bad reactions to most of the other dmds, so I'm pretty happy with this.

Again, I do want to thank you all for the help you have given me. Cnoellert, I did want to mention that I did have the blood test you mentioned about taking to check the index number. Unfortunately, my index number came back as high risk. So, I am likely going to switch soon. I am still just a little worried about the side effects. The Tecfidera sounds like it may be my choice. I do worry a bit about stomach issues. As, my stomach is already sensitive. I have had bouts of Diverticulitus, and I avoid all dairy, ect. So, the concern about stomach issues does worry me a bit. I guess the best thing to do about that is make the choice, and if it causes issues, then get off of it.
HeyNow, i do appreciate your sharing about being on Gilenya. Thank you. No new lesions is a good thing. Good for you!
I will be talking with my Neuro very soon.

Been taking Tecfidera for 1 1/2 months now, after 4 years being on Rebif. I had a breakthrough lesion on my spine so now my neuro has me trying the oral med, Tecfidera. I initially had dry mouth(like biting into a green banana) and still dealing with constipation woes. Still waiting to get the results back from my first 3 mo. blood test. Hoping for the best. But quite honestly, other than not being a human pin cushion from the Rebif, I haven't noticed any difference with the Tecfidera. Don't know if that is good or bad...time will tell I suppose.