Starting Tec...

[mlissa67]

Is anyone taking any pre-meds with the dose? My infusion nurse mentioned something about aspirin but wasn't sure of the dosage. It sounds like several people are taking something for reflux, like Pepcid or Prilosec.

Someone mentioned they were a 2% percent person meaning look for the most uncommon side effect and that is her. I am that person too. Copaxone = migraine headaches, interferons caused hallucinations with a week long hospitalization, and gilenya can cause macular edema which I've already been diagnosed with and finally aubagio causes elevated liver enzymes which I have.

I'm VERY nervous or maybe its a scared feeling about starting this med. given my history with medications and side effects. I'll be happy for any advice y'all have to offer.

[durgastiger]

@Melissa

What medication are you on now?
Are you JC+?
Have you thought about Tysabri?

I think pretty much everyone on Tecfidera including myself got base-line blood work done then blood work after starter pack before starting 2nd month.

You have to decide for yourself based on your medical history. You came to a great place for feedback but ultimately we have to be our own doctors and neurologists.

[Myoak]

Melissa,

It is important to know that the two large Phase 3 trials of Tecfidera showed that most patients experienced a decrease in side effects after several weeks of treatment.

If you have lousy side effects in the beginning, you can reasonably expect them to diminish after a few weeks, based on the trial results.

With Fumaderm, a medicine similar to tecfidera, patients experienced a similar pattern of diminishing side effects over time. Two smaller studies (less than 100 people) of Fumaderm had drop-out rates of 20% to 25%. But keep in mind the meds are not identical just very similar.

Also keep in mind that MS is a disease so difficult to manage that perhaps MSers will endure unpleasant side effects longer before thinking about dropping out in the hopes discomfort will lessen overtime. The DEFINE and CONFIRM trials indicate they should for most.

Keep in mind that tecfidera is more effective than most MS meds so it is well worth your best effort.

[mlissa67]

Thank you....

@Bill - Yes, I did take 9 doses of Tysabri then came up JCV+ so I was taken off the Ty. I've using IVIG as a holdover although it hasn't proven to be effective for MS on the longterm, my neuro wanted me on somethng while awaiting the release of Tecfidera. My primary blood test showed I had low white blow cells so we decided, based on studies with low WBC's and the 2 cases of PML in people with low WBCs and Fumaderm that maybe Tec wasn't going to be an option however, I started flaring after this last go round with IVIG and they told me yesterday that I have to be switched. Thank you for responding.

@Myoak - Thank you for you encouragement and thoughts that the side effects should subside over time. With my history of bad luck with meds, I'm just scared but on the other hand, I've run out of med options. I wish this was easier, but it's not, for any of us. I haven't received my meds yet. I will do one more round of IVIG the first week of June and then the plan is to start Tec after that.

Do either of you take a Pepcid or Prilosec as a pre-dosing regimen to reduce possible GI upset? Have you heard that taking an aspirin will help to relieve flushing/itching?

[durgastiger]

@Mlisa

I don't do any pre-medication. I take tecfidera just after I eat breakfast and dinner. You will get sporatic occasions of flushing but usually goes away after an hour or two.

Be ware of what your stomach is telling you also, i.e. time to reach bathroom also. Seems like it has the ability to loosen the bowels. Wich makes sense when you read about the leeky gut and the role the stomach and digestive system plays in M.S.

Keep us posted!