For Those 6 Months r more Into Tecfidera (hinder or help)

[msesq]

I've been on Tec for two years. For me its been fine. I say this after being tortured by Rebif to the point where I was ready to give up on DMD's. Injections 3X per week that made me incapacitated for days? I literally was barely functioning. Taking a pill twice a day with very few side effects has given me my life back. I do still OCCASIONALLY get stomach upset or flushing. Certainly not bad enough for me to consider changing meds.

[pballer76]

Tecfidera 6 months today

I have been on Tec for 6 months today. It's worked well. MRI had no change compared to the one a year earlier. After an initial lymph count drop to 340 at 3 months it bounced up to 750.
I didn't have flushing until month 5. I find it comes on at random times. Sometimes up to 6 hours after taking the pill.
The only GI problems are an occasional growling stomach. It's like I am hungry.
I just try to eat when I take the pill. I also take a baby aspirin a half hour before to attempt to control the flushing.
Tecfidera is far from perfect but the side effects are definitely manageable.
The main thing is my scans are the same and I have been exercising more. I won't say Tec has made feel better. But it does allow me to exercise and exercising makes me feel better.

[pmtrk1790]

My neuro switched me to Tecfidera last April and it went ok with no side effects whatsoever. Then about August I started having these episodes of slurred speech and trouble walking. I could feel it coming on then it would go away like nothing happened. I have recently asked to be taken off of it because I just was not comfortable with it. The episodes haven't went away and have gotten worse, neuro thinks I am having seizures. I noticed while on Tecfidera nothing affected me the same like steroids by IV did nothing for me at all. I had MRI'S in October and they looked fine with no new lesions. Got put on Keppra for seizures and was up to 1000mg morning and night and it didn't do anything at all. I am lost, dont think Tecfidera was a good move by my neuro.

[Tide]

Just an update since my original post last year.

I stopped taking tec for over a month, maybe three. I started taking them again hoping things would be better and they were.
No symptoms other then once in a great while some nausea that would hit me hard out of the blue but be gone before I even got to the bathroom.

I was sooo jazzed.

Now, about 6-7 months back into it I'm experiencing symptoms out of the blue worse then before. I never imagined it could get worse but it did.
The last two nights I have had sever stomach pains, and someone posted exactly what that's like on another thread or board. I wasn't sure if it was my stomach or lungs that hurt. Lower in my pelvic area if I slightly pushed on it the pain was so intense I would rate it as a 10.
I stopped pushing on it.
I was ready to go to the ER but the thought of more medical bills kept me from going since Im on a fixed income however if it had even gotten any worse at all even the slightest, I would have gone.

Next morning my computer alarm went off telling me to take the next one and that was a huuuuuuuuge UH UH! No Way so I let it slide. By mid afternoon I felt great. No symptoms or pain at all. By the time my computer alerted me again for the next pill, I took it crossing my fingers and telling myself if anything like that happens again, Im done with this med.

In a hour my next is due but so far, nothing and its usually at the end of the pills cycle when the trouble begins for me.
I cannot EVER go through that pain again or fatigue so sever like that night/day it cripples me more then the MS does 100 times over.

So, once again after missing a dose Im back on it. I'm a little sleepy but nothing terrible. Hope the next one or the one after that or the one a week or month from now doesn't result in what I just went through

[poppydarling]

I am becoming increasingly concerned about what tecfidera is really doing to us.
Not a lot is known how this med works or what it might do in the long run.
PML has now been linked to it but who knows what else down the road.

So for those that have been on tec at least 6 months or more, what is your experience with it?
Do you really feel this does you any good or do you feel this med is hurting you more then helping?

Gale, I feel the same way about every drug I've tried! Every single one with the exception of Tysabri (which gave me a terrible rebound flareup after stopping it due to an allergic reaction, one that I've never recovered from) has worsened my symptoms and left me with permanent deficits. This includes Gilenya, which I had to stop recently because I felt so poorly on it and my quality-of-life was near zero.

Doc is now offering Tec, Aubagio or Cellcept but pretty halfheartedly. I may be one of those people who just can't tolerate these drugs, which leaves stem cell treatment as my last-ditch option, I guess. I have to hope that the FDA approves it before I'm completely disabled! To say I'm fed up and disappointed is an understatement.

[Mokeep]

1 year and 1/2 and all is well....

I have RRMS since 1997.

Been on almost all of the interferons and got to the end of my rope with shots. (scar tissue everywhere)

Been on Tecfidera for 1 year and 1/2 and all is well.... Actually I have never had any problems with the drug. I have a more energy compared to Rebiff and no major down turns and stable MRIs.

Sorry my message is short ... time to make dinner!

Good luck my friends!

[hope32]

I've been on Tec for 1.5 years. Here's my S/E story/timeline:

Oct '13: Started Tec. Had a lot of GI issues and flushing for a month or so.
Decemberish '13: Developed pretty bad debilitating fatigue. Lasted about 3 months. I managed OK during the day but was barely functioning by 8 p.m. I'm a SAHM so I had some flexibility but I really didn't have the energy to do a whole lot; more survival mode. GI issues were significantly decreased though and the flushing rarely happened since I took baby aspirin and figured out timing/meal content.
Feb/March-ish '13: Severe chronic fatigue eased up.
Since then though, I've noticed I still have intermittent fatigue, intermittent GI issues, and the flushing happens (bad) if I skip the baby aspirin. I've also had to change my diet to higher-carb than I'm used to (I have PCOS and had prediabetes in the past so I have to stay on the lower side for carbs, like around 120 gm/day to maintain and under 100 gm/day to lose weight). As a result, I've gained 17 lbs over the past year and can't seem to lose it.

Because of all this, I'm considering switching to Gilenya. I probably *could* stay on Tec; I don't hate it and I guess I should mention I have had zero disease activity since I started it (rather than just get hung up on the S/E's )! But I'm researching G and we'll see what happens next. If G doesn't work out for me I'm really not sure if I'd stay on Tec or switch to Ty. I've already been on Cpx and Beta.

[Tide]

I saw my new neuro yesterday. GAWD she talks a mile a minute. lol
She is retrieving my records as I type and gave me something to combat the fatigue. Hope it works,
I went off tec a little over a week ago feeling so bad I just couldnt do it anymore.
about 5 days ago while not taking it, I woke up and right on time as if I was taking tec, thought I was going to get sick.
It was only that one time buy just like before, was gone before I could hit the bathroom.
two days later Im outside gardening because I had all this energy and felt great.
Well it turns out I had pneumonia. The week before when I thought it was the tec making me feel bad stomach pain and lung wise so last night, after 7 days of antibiotics, I started tec again.
Now 9 hours into my first pill I'm tired. So tired. And, nausea but different. This doesn't hit me then go away quickly like it did before but stays. I really havent had much sleep due to this, but thats not the type of tired Im feeling. Foggy and far away tired like before on tec. Fatigued.
I had plans today but not sure if I'll snap out of it enough to do anything and definitely not with the way my stomach is.
I told my new neuro if this doesn't work I wont be on anything because I don't want to switch to gilenia or back to the shots.
As for the mri, guess I have to wait until she knows my case history better but I just bet while on Tec, there is a whole lot of activity on my brain showing new lesions. However you spell that.
Waves to all the folks in the UP. This So. Cali resident of 53 years is loving this area. Wouldn't trade it for anything and to think it was only 2,400 miles around the corner the entire time. LOL

I'm going back to bed. I feel like my brain was scraped with a pumpkin carver.

[PositiveMS]

For me it's great.

I've been on Tecfidera for 1.5 years. 12 years with no DMD, then a series of flares, then a god awful year injecting Copaxone......then Tecfidera. I know not everyone responds to every drug the same way, but this one changed my life for the better. No flares since starting at all. No side effects except occasional flushing.

I hope things look up for you.

[REG53]

I had my two yr. MRI, it showed no new lesions. I started having more flushing and itching but only when I don't eat before taking.

My wbc is 5.2 and lymphocytes is 1.0.

So tec. is working for me so far.

[VikingKitty]

more help than hinder

my abbreviated story:

Started Tec Dec 29 '13

* had brief flushing approx. 3 hours after taking it which mostly subsided after a few months..but still happens occasionally.

* seemed like I had more energy when first taking it but now it seems like I'm having more and more fatigue the past few months along with nausea.

* I have had mild occasional abdominal pains for the past approx. 2 years and not sure if the Tec is causing it or making an unknown underlying condition worse but it has become bad enough that I just had an abdominal/pelvic MRI two days ago and I am awaiting the results. Now, if they don't find anything wrong, I'll have to look toward the direction of Tec side effects. Even in the literature it has abdominal pain listed as the second most common side effect.

* And if it is the Tec causing the nausea, abdominal pain, bloating, I will find a way to deal with it because I don't want to go off this medication. I just picked up some peppermint oil today <ginger is supposed to be good for nausea too> I think if I could get rid of the nausea it may help the fatigued feeling?? I know when I feel nauseated I want to lay down and take a nap.

I have had no flares or new lesions since starting Tec. <Even when I had a bad head cold in April>

So it seems to be doing a good job from what me and the neurologist can tell.

Every "body" is different and reacts differently to medications.

[bree2013]

Started Tec in June 2013 -- initially I did experience some gastro issues and flushing. Throughout taking Tec I have had flushing & runny nose but those diminished some over the two years taking it.

My MRI's have remained stable and I haven't experienced any flares. Various symptoms but overall I did very well on it. The side effect I did experience was very low lymphs. So I am quiting tec and probably going on Copaxone.

This was my first DMT and overall I felt good while on it. Everyone reacts differently to meds, but I would recommend Tec, but also monitoring of the WBCs and lymphs.

Good luck

[RGI]

I'm not typing all this stuff again. Tecfidera No bueno for me. Mucho bad. The more info out there the better.


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