Tecfidera

[opie74]

Hi all!  I have not been around for a while.   I have been terribly sick with staph in the sinus, the followed my a fungal infection of the sinus.  After 7 weeks of treatment for the fungus, my WBC went down to 1.3.  I picked up another staph.  I had to quit taking gilenya.  I am near the end of the first week of Tecfidera.  I was just wondering who else was on it, and if you had any suggestions for flushing.

Ann

[Corriel]

Good luck and please keep us posted.

Corrie

[opie74]

My 3 month follow up was "rescheduled" three weeks later. I will.go back armed.with questions.and suggestions on Aug 10th.

[ConfirmedRachel]

What a hard time you've been having, poor you!

I hope Tec works for you, I'm starting it in Sept so am always on the look out for threads like these. Many have said if you have trouble with the full dose, perhaps try going up to full dose more slowly too.

If your body has been through it recently, that might be an option worth discussing too.

Nx

[Corriel]

Oh my goodness, what a terrible time you are having.

I truly hope thngs get better soon!!

Corrie

[opie74]

Still flushing hours after the dose. It is making my lips peal. Oh well, everything else is tolerable. Still not over the fungal infection. I have also had a bout or MRSA in my nose. It responded to pills.  Thank heaven.

[waterton]

I was exactly the same on tecfidera I actually had to stop as the nausea just took hold and I wasnt able to work Im now on Gilenya so far it is good, but I have had a relapse since Ive been on it.

[Corriel]

Hopefully that will be the last of the anti-fungal!

Like you, my flushing starts 2-4 hours after so I only take the aspirin sporadically.

I have noticed that if my dosage schedule gets too off track that the flushing actually turns to blotches on my chest/shoulders and I get a red rash (no itch just tingling) on my arms and legs.

Once I get to that point the aspirin clears it up within an hour or so. The nurse did tell me that if I want to try to tough it out the flushing usually goes away within an hour or so but that usually isn't the case for those of us who flush so long after the dose.

Makes us special!

Corrie

[opie74]

Thanks!  I have missed you all!  My immune-deficiency has been center stage for several months now.  The PICC line comes out today.  I have 4 more weeks of oral anti-fungal Voriconazole (sp?).  

The flushing with the small dose is better today, but I go up tomorrow.  I think that I will try waiting to take the aspirin until the flushing starts.  They suggested that I take it with the med, but I flush 2-3 hours later.  

[HVAC]

Ann,
   Sorry you have been so sick. I hope the tecfidera works well for you.

Alex

[Artanis12]

I'm on Tec too.  I will warn you, if you're going to have any of the gastrointestinal issues, it will likely be when you go to the full dose, so be prepared. I sailed through my first week, but the second got a bit rougher, with flushing starting PLUS the nausea. It was a very odd nausea too, I would be nauseated, yet not put off by the thought or sight of food.  I never tossed my lunch, but regardless, it was pretty unpleasant. If you have nausea, be sure and call your neuro's office and get them to prescribe something for it. They called in a script for Zofran for me, and while it did take about 20 minutes to kick in, it did the trick.  And after about the first month, I've had little issues, with only occasional flushing remaining. Nothing I can't deal with.

I wish you the best of luck with it.  I'm still not far enough along in taking it to know for certain it's going to work long term, but I surely have no gripe with taking a pill over injections!

Karen

[Corriel]

Hi Ann, I have been on Tec for a year now.

The flushing was worse for me at the beginning and I was advised to take aspirin either right before my Tecfidera dose or when the flushing started.

The flushing was a lot better for me after the first couple of months and now I only notice it when I am not consistently taking my doses 10-12 hours apart or if I don't eat enough prior to the dose.

I hear some folks say that an allergy med helps them but I don't personally see how. Some also swear that either apple juice or apple sauce help quickly but I have not personally tried it out.

The nurse at Biogen was the one who recommended the asprin.

I hope the infection clears up soon and that they are planning to keep an eye on your WBC. The absolute lymphocyte count seems to be the main one that they like to keep an eye on.

Corrie