Tecfidera
 

Hi fellow MSer..Nancy here....was diagnois with MS over 25 yrs ago...have been on Betasernon,Copaxzone and Tysabri....I just started Tecfidera 3 days ago..can anyone help me out with the good and bad of this med...thxs

Hello ttbubles,

I've been diagnosed for 30 years. I have never used any of the MS treatments so, unfortunately I am of no help with Tecfidera. Hopefully someone will be along soon who can answer your question.

Just wanted to welcome you to NeuroTalk :Wave-Hello:

Hi Nancy! Welcome to Neurotalk!

I started Tec last March so I'm coming up on 1 year.

It's been a little disappointing in that I cannot tell any improvement.....although from what I've read you're not going to notice improvements. It's strictly to keep you from progressing any further.

Just in the past month or so I've noticed that I get heartburn/indigestion after eating most anything. I'm told this is a side effect of Tec.

I've always had the flushing side effect......even now after almost a year. It feels like I have a sunburn but the feeling goes away after about 1/2 hour.

I'm a little troubled by the indigestion and will speak to my Neuro about it. Probably will have to take yet another pill for that symptom.......:rolleyes:.

I have not had an MRI since beginning Tec so I'm sure that will be next on the agenda.

How are you doing on the med? Noticing any side effects?

Tec
 

I was on it for a short time. Made me feel very sick and that scared me so I stopped. Most people have the most issues with their stomachs. If you can get through that then you are home free.

Welcome to Neurotalk, Nancy!

I've been on Tecfidera for over a year. For the first few weeks, and even still every once in a while, I'll get facial flushing (reddening) and a sunburned feeling. To me, no big deal.

I've never had exacerbations in my 15 years with MS, so I have no idea if the med is helping there. Good luck to you!

I'm on it, for approx 1.5 - 2years. The first several weeks (maybe 2-3 months if I recall) were full of bad gut pain. They now have learned that many patients need longer than 1wk on the starter dosage. I get burning & flushing from upper chest to top of head, but much less often than the first 6 months or so when i got it every day. I learned to use cool wet cloths and ride it out- sort of like a wicked sunburn feeling on my skin. They are short lasting for me (5-15 mins)


I choose to stay on it so I (hopefully) progress as quickly or lose more of my abilities.

I honestly could have cared less about which drug I ended up on, as long as I could afford it and my neuro also thought it was good. I ended up with Tec as they arranged for a grant to pick up my coinsurance amounts.

Bonus- it cleared up my psoriasis! and is an oral.

Good luck!

Hi ttbubles

You might find this site a helpful source of information about Tecfidera and its possible side-effects: http://www.drugs.com/pro/tecfidera.html .

I've heard that there have been a few cases of PML with this med now.

Have yourselves checked for your individual risk often.:grouphug:

Well, now I'm not too sure about this med. :confused:
I just had the worst reaction to it. I know it causes flushing sometimes. I've had that and it just feels like a mild sunburn. I can handle that.

Today, I took a shower.....just like I always do. Didn't use any new products in or out of the shower.

About ten minutes after I had gotten dressed I started itching. All over my body. Every square inch. :eek: Bottom of my feet to the top of my head.

Scratching didn't help.....just made the itching worse. I cannot emphasize enough how intense this was. Think of the worst case of poison ivy and then times that by 100. That still wouldn't describe how intense this was.

I couldn't scratch fast enough and I needed about twelve hands. I scared two cats off my bed (unintentionally). I hyperventilated. I was breathing so fast I didn't even notice how lightheaded I was getting. I thought I would pass out.

This could qualify as some sort of torture. I could not sit still but my legs were like jello so I had to sit/lay/squirm on the bed!

Finally, about thirty minutes after it started it calmed down and eventually stopped.

I am exhausted.

I don't think I'm going to take Tecfidera any more. I think the thought of going through that again is just about enough to keep me from giving it another try.

If I have to go back to the shots I will. That's how BAD it was!

I've got to go lay down for a while.

Kelly, did you talk to your doctor about the itching? I get very intense itching from the waist up occasionally. I had it a few weeks ago and it lasted several days. Getting overheated seems to be the trigger. I was wondering if your episode could have been caused by a hot shower rather than the medicine.