New to Tecfidera with vision and confusion/cognitive changes

[MSW1963]

Wanting to hear for others new to Tec experiencing daily intermittent loss of vision, accompanied by 'confusion' = impaired cognition.

These sx's began when I started dosing the 240mg x2 daily. I've managed GI and flushing with few problems, but the vision and confusion are sticking around. Also with constant arm pain with low grade icy/burning sensation that coincided with increase to 240mg dose.

I've researched vision/confusion sx's associated with Tec and they are indicated in the research, but only as it relates to elevated PML risk with Tec.

Hope everyone is hanging in with Tec, and that I'm the odd one out with these sx.

[Seasha]

Hi MSW~ Sorry to hear you're having problems with Tecfidera

I'm not taking Tec nor have I in the past. What I've always been told by my neuro is if I have any new or worsening symptoms, to give a call. You might want to do that - especially if you're experiencing loss of vision - even intermittently. You don't want to mess around with that!

Hope you can resolve this and soon!
Take care~

[MSW1963]

Hi Seasha, my doc is away this week. I did notify the office, got a call from one of the nurses relaying from the NP to 'go to the eye doc'. I don't know how much help the eye doc can offer if the loss of vision is intermittent and Tec related, which I'm confident it is. I was hoping to hear that vision complication is a known side effect, nothing urgent and will clear up soon.

It makes me more uncertain because after a bit of research, I found that vision complications are known to be associated with Tec, the PML variety which is not reassuring in the least. I hope to catch up with my doc tomorrow.

Thank you for the reply.

[MSW1963]

Update

Discussed photo-sensitivity, aka loss of vision, with my doc. While there are google search results indicating vision problems (blurry vision) associated with Tec, vision loss of the photo-sensitivity variety is not indicated in results my doc was able to find, and I can't find the google search result I found, indicated in my earlier post.

I now recall experiencing the same type of vision loss with Ritalin. I don't take Ritalin very often due to intolerance, including intense photo-sensitivity. Yet another indication of what a unique, special, and one of a kind my MS and I are?

Long story short, doc reduced Tec dose to 120mgs 2x daily until I experience improvement , taper up to one 120mgs mornings and one 240mgs evenings, for a few weeks. The plan is to slowly taper up to the full 240mgs 2x daily. Hoping the constant mild nausea resolves with time, although I'm so much hating this heavy, fatty, starchy diet and weight gain.

I've had some improvement with Tec, it hasn't been all bad, so hoping the slower taper up dosing resolves my otherwise ?mild? intolerance. The slower taper up dosing seems to be acceptable for some of us experiencing problems with the full 240 mgs.


Best of luck to any other struggling Tec-ie patients out there.

The slower taper up dosing seems to be acceptable for those of us experiencing problems with the full 240 mgs.

[dkm322]

My vision ended up better on Tecfidera

I was diagnosed in July having MS and started Tecfedera in August. The first month I had increased vision problems that seemed to last 3 days at a time. Main issue was double vision (sort of) that seemed to clear if I blinked a lot or closed my eyes, but would come back especially when tired.

Eventually I found my eyesight improving so much I was able to wear my prior pair of glasses. My sight has been stable for 5 months now.

Wish you well,
Dawn

[Jessica0404]

Tec and diet.

Hi! Ive been on tec for 6 months now and only once did I take it without food. I learned my lesson. That being said, I take it with much less, healthier food now. By month three, almost any food was enough for me.

The best "healthy" option I've found is Greek yogurt. It seems to have a good protein base with enough fat to keep the nausea away. I know every one is different but maybe this will work for you too.

[MSW1963]

Dawn, I had several episodes of diplopia?, aka double vision pre dx, but not with Tec., just the photo-sensitivity. Glad to hear yours was brief, and that your vision in general has improved.

The photosensitivity has improved to very occasional episodes versus daily occurrences. GI sx and nausea have also improved over time.

Jessica, like you I'm able to cut back on the large heavy meals, but not to my usual veggie based meals. I do see lots of improvement. I'm dreading increasing to the full 240mg 2x daily dose, I have a feeling it will come with set backs, but hopefully any set backs will be temporary, and improve with time also.Thanks for the Greek yogurt tip. I love middle eastern food and love that yogurt is a standard condiment served with every meal. I picked some up at the market today. Thanks again for the tip and take care.

[goblue]

Hi! Ive been on tec for 6 months now and only once did I take it without food. I learned my lesson. That being said, I take it with much less, healthier food now. By month three, almost any food was enough for me.

The best "healthy" option I've found is Greek yogurt. It seems to have a good protein base with enough fat to keep the nausea away. I know every one is different but maybe this will work for you too.

Yep, i will second this. Geek yogurt every morning and I've never had even one issue with gastro issues. I still have flushing after having been on tec for almost 2 years.