Quick poll for all those on Tecfidera

[football-mom]

So I have now been on tec for one year this week. My lab results are all stellar and I am JCV negative. I'll have my MRI on January 2nd; fingers crossed that looks good too.

[dann]

lab work

Recent labs......lymphs low but wbc are good. Have no idea what means.....know wbc is good to fight infection. Any feedback?

[oliveroliver]

18 months

Well received phone call, my lymphocytes keep dropping, last May was .8 now it is .6. They say the critical point is point 5 !!!! So they will get the JCV blood work back on Friday, but won't call me untill Monday after the Holidays. So Heck I am going to stop the pill for a week, untill they find out if I am jcv positive or negative. If negative no need to worry to much. If I am positive then I will be ahead a week cause you always have to have some time in between medicines before you start a new one. My MRI last week was no change since 2012 yea!!!! So I am off of it for at least one week. Will keep you all posted. No PML for this chick!!!!!!

[football-mom]

I've been on tec 13 months and just got my MRI results. For the most part its all good except I have one new small lesion in the right frontal cerebrum. Since I felt awful most of 2014 after that relapse in Oct '13, I feel fairly confident that the lesion occurred before the tecfidera really settled in.

Anyway, my doc agrees that I can stay on tec another 6-12 months when we will do another MRI to make sure everything is stable. I already let y'all know that all my blood work came back great and I'm JCV negative.

Since about month 4 or 5, I have no more tec side effects except for rare flushing about an hour after my morning dose, and that happens maybe once every couple weeks, and I'm sure that's because I no longer bother eating something in the morning when I take it.

[allHailye2]

I've been on tec for 19 months. No GI sx's. I flush maybe once a month. The worst side effect was the water faucet nose. It was Really bad for the first few months! My nose will still run, most likely when I bend forward, but it's nothing like it was.

My last blood test did show a very low lymphocyte count tho. It was at 394. I'm hoping it was a fluke I really don't want to have to switch drugs. I can deal with the runny nose & my MRI has been stable.

I'm waiting to see the Dr next week to see what the repeat blood test I just had done shows.

[sarawarden]

Been on Tec for year and a half. Love the pills rather then shots! Wouldn't change anything even with my side effects!

I flush randomly but I almost always know 10mins before it starts (so I can take my self out of meetings in time). It has a lot of connection with my stress level and hot weather or major temp changes. I live in Texas and going outside during the hot summer from a building with major AC can trigger it. It pretty much happens 3 hours after I take my pill, so lunch time. I get dry mouth really bad before it happens and then I flush typically on my ears, or chest first. Then it will either stop or move through my face... when it is really bad it will go all over my body. The doctor said the flushing may get better with time but I have not experienced that. It has decreased from every day to 2-3 times a week.

Lately I have had some GI issues but I think that has to do with my low iron levels and taking Iron supplements and has messed up my system. Working with probiotics to naturally fix the problem.... I spend a lot of time medicating for side effects of other medications so hoping that probiotics will help my system "naturally" improve.

Love Tecfidera and would recommend to anyone!

[nosrepmodnar]

I've been on tec for 19 months. No GI sx's. I flush maybe once a month. The worst side effect was the water faucet nose. It was Really bad for the first few months! My nose will still run, most likely when I bend forward, but it's nothing like it was.

My last blood test did show a very low lymphocyte count tho. It was at 394. I'm hoping it was a fluke I really don't want to have to switch drugs. I can deal with the runny nose & my MRI has been stable.

I'm waiting to see the Dr next week to see what the repeat blood test I just had done shows.

neuro gave me "the look" when i said it makes my nose run

[football-mom]

neuro gave me "the look" when i said it makes my nose run

Haha, I got the look too. But I look at it this way, they will never know its a side effect if we don't keep reporting it.

[daraslyte]

Haha, I got the look too. But I look at it this way, they will never know its a side effect if we don't keep reporting it.

Yes , Yes , and Yes i am also on tecfidera . Have been on it for well over a year now and like you said Sarawarden, i still flush,and my doc also said it to should get better , but it hasnt. I feel it before it happens also. I will actually look like i have a bad sunburn from head to toe. I will itch, burn , and of course flush. last night i took it and i had gi issues this morning, and i was still flushing and itching 6 hours later. Usually the flushing goes away within an hour but this time it didnt. I have not been taking it for the past 3 weeks because of the side affects but as you say its better then the shot.


It is just so annoying to go in public and have people staring at me because i look like i just steppped out of a tanning salon or i was at a beach all day. Where i live its cold and snowing , so yea no beaches to go to around here yet.


So the joys of ms, medication , you are darned if you do and darned if you dont.

[MSer]

Hi everyone,

I've been on it for 19 months.
I still flush randomly in the face (told my Dr and he said I should not still be flushing... but I am). My nose also runs... which is a pain. Last blood test showed my lymphocyte count to be a little low... but not something he was concern about right now. In general I am doing great. I feel good (no aching from side effects of the Rebif shot).

I love the freedom of having to take only a pill. So easy to travel....

Has anyone been on it for 2 years or more?

[allHailye2]

neuro gave me "the look" when i said it makes my nose run

i am now "the one with the runny nose". at least he remembers me out of all the patients he sees!

[goblue]

At what point is your doctor supposed to check for the jc virus? I've been on tec for almost a year, and my doctor never mentioned checking for that.

[JerryD]

I have been on Tec for about 3 months. I had a couple of episodes of 'flushing'. I don't know about any problems with JCV. I hope that my neurologist would keep watch for this.

[VikingKitty]

419 days later

I've now been on Tec about 1 year and 2 months - my MRIs last summer showed no new activity. I just saw my neuro and will be getting blood work for JCV again just to check and also my lymphocyte count.

I occasionally have flushing still about 3 hours after taking it. Also, me too for the runny nose around that time along with a slight cough.

Beats the shots of Copaxone.

When my face and neck flush at work and someone is talking with me (which is a lot, I work in a busy office) I just pretend like nothing is happening - No one has had the guts to ask me about it so I just kinda laugh to myself when they walk away and let them figure it out. I like to think to myself that I'm having a "solar flare"

Gotta keep a sense of humor about it...I'm very, very grateful to have the medication, so just like anything --gotta take the good with the bad and really, it isn't that bad.

[VikingKitty]

JCV test

At what point is your doctor supposed to check for the jc virus? I've been on tec for almost a year, and my doctor never mentioned checking for that.

I just went for a routine 6 mo exam with my neuro and he mentioned to me about getting retested for JCV. If he didn't suggest it, I was going to. I have been on Tec now for a little over 1 year. Bring it up to him. Give him a call. You can contract it at anytime without knowing you have it. I was pre-tested before going on Tec but it's good to check occasionally.