thingy003 28/01/17
Last reply 11 months ago
Tecifdera advice please

So, I have decided that I will be taking tecfidera as my DMT. I’m not really sure why I went for it out of the ones that were put on offer for me except that it appears to have a 50% effectiveness rate which is a high as anything I was offered. I would have just gone for the lemtrada but my MS is not severe enough for it to be offered and I am thankful for that.

I’m not sure when I will be starting as I have to go back into the hospital on Monday to sign some forms which they didn’t have with them on Weds and then I have been led to believe that it could take 6 – 8 weeks for all the approvals to be sorted out. In the meantime does anybody have any advice that they would care to share?

Thanks

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dom1975
1 year ago

Hello, I’ve been on Tecfedera 18 months now with no issues. If you can look past the bad horror stories that nearly put me off before I started then go for it. Just mild flushing while on the starter dose and a few stomach cramps which passed quickly for me. recommend you eat a decent meal an hour before each tablet to minimise side effects or ask for lazaropole which acts as a stomach calming aid until you find your feet. Now I just take mine with a glass of water 12hrs apart. More importantly for me no relapses! You can also use the search engine on here as there’s lots of peoples experiences which might help? Good luck


dom1975
1 year ago

Sorry above post should read Lansoprazole 🙂


potter
1 year ago

Everyone reacts differently, I had problems with stomach upset and diarrhea at first. I started taking a good probiotic and my pill in the middle of the meal. Some people have flushing and take a aspirin a 30 minutes before. I didn’t have any problems with flushing, I am starting my fourth year on Tec. I was taking Rebif shots for 5 years and always felt the flu type side effects. I haven’t had any relapses. Potter


brittany-leigh
1 year ago

Flushing was THE WORST. But taking Tylenol before helped, I had pretty bad stomach pains as well & diarrhea. What any nurse or doctor will tell you it’s what you can live with. Use your best judgement & do all your blood tests, should be fine.


minnielle
1 year ago

I’ve been on it for 8 months now and have had no side effects apart from hair loss after about 5 months which has since subsided. I started taking biotin tablets to help with that.
All in all it has been problem free. I don’t need to eat any special foods before I take it. Morning just my usual cereal and tea. And in the evening just my regular dinner.
Best of luck. I was terrified when I took it first but it’s been absolutely fine. (Oh I had one flush the day I took it for first time.)


msuser1771
1 year ago

I have been on it for 14 months now and have been relapse free. I take it at about 09:00 and 18:00. At around 13:30 I often get a big flush which lasts for about half an hour. Think it is more likely to happen if I have a decent lunch (may be wrong on this).


mo-jo
1 year ago

I was on in for a grand total of 3 weeks, it didn’t work out for me and going back on Avonex on Wednesday but my Ms team said only 10% of patients had to change to something else.
Good luck.


beatms711
11 months ago

Has anyone found symptom relief from the Tecfidera? My initial Neuro said it would help with symptoms, then another Neuro I spoke with said that it’s merely to delay the progression, not to help with the symptoms. It hasn’t helped with the symptoms thus far, after about five weeks. I’m hoping I will indeed get symptom relief if I stick with it.


stumbler
11 months ago

@beatms711 , Disease Modifying Treatments (DMTs), like Tecfidera, are a type of insurance for the future. They modify our immune system to reduce the frequency and severity of relapses.

Some are fortunate that they recover function lost in earlier relapses, but it is not a definite. Sorry.


beatms711
11 months ago

Thanks for the reply, @stumbler. I wish the first Neuro knew as much as you do … LOL. 🙂

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