Tecfidera and severe kidney pain

Hi everyone,

Yesterday I restarted tec 120mg.

After about an hour or so I was struck down by a very very bad pain in what I can only describe as being my left kidney.

The pain was just under my ribs on my back but deep inside my body. It was so sore I ended up calling my husband in case something happened to me so he would know to come home. It subsided after 15 - 20 minutes and I started flushing and felt slightly nauseous for a bit. The flushing is a normal reaction for me on tec. But usually I get the flushing many hours after I take the tablet. Before the flush I always feel a bit unwell as it’s coming on, but then feel ok after a bit. Also yesterday the flushing lasted a really long time and my whole body was itchy for ages. Kind of like when you’re sunburnt. It wasn’t very nice.

I have contacted my MS team but they’re not getting back to me and I’m not sure if I should continue today and these side effects are just normal. Has anyone else had this on tec ? Thank you !

Hi Emily

I don’t think it will be much of a problem to miss a tablet.

I did because I was feeling so very rank.

There should be a phone number on the leaflet in the box where you can speak to a techfidera nurse.

The only number I can find is for Biogen +44 (0) 1628 50 1000.

Speak to your GP about having a blood test to see if your kidneys are working correctly.

take the leaflet with you.

good luck

xx

Hi Emily, I assume you took with food or a meal. Might be Worth calling the MS Trust or MS Society’s support lines. Good luck.

Hi everyone, I took it with food as usual. The nurse said perhaps it was abdominal pain. I took one last night and had no problems. The evening dose never gives me any issues anyway. But the nurse said I can try again today - which I will. If it continues I’m not going to take them anymore !

Hopefully today will be better for you. Fingers crossed. I’ve never had any problems with Tec at all. Maybe some others can chip in with their experience.

Hey ! Glad to hear you have tolerated it well. Do you still take it ?

I took it today and have literally had NO side effects ! I took my first dose at around 3 pm during a big meal ( lamb chops and veggies ) so quite fatty. Maybe that’s the thing I got wrong yesterday- I don’t know. When I used to take it before I had a baby I took it on just an apple before and was so red for so long. Flushing was always my only side effect. Did you have any ? I also didn’t feel great whilst flushing, slight headache / pressure and a bit wiped out. But it was tolerable. But yeah ! Today was fine. Very pleased ! Maybe yesterday was a freak thing. I called Biogen as Carole suggested, they said they’ve never heard of that side effect and it might get logged, so they may call me. How exciting ! Haha

Hi, ive been taking Tecfidera for just over 2 years. I’ve had next to no flushing and no other side effects since I started taking. I take it twice a day with breakfast and dinner. I’ve had no relapses or new lesions since I started taking it either. Maybe a substantial snack or meal is your way to go for ease of use. Stay safe.

My diet changed to porridge with berries for breakfast followed by toast, then progressed to a boiled egg with toast (soldiers of course). That was successful in stopping the puking

Evening meal was more difficult because we are a family of four adults so I would make something that we all could eat (macaroni cheese was/is always popular), followed by a dessert. Luxury apple pie for medical reasons!

Look for the silver linings!