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Tecfidera

PostPosted: Thu Oct 11, 2018 6:20 pm
by ReneDG
Hi all - Dx May 2018 and started up on Aubagio after methyl presidone for a week. Tolerated this drug really well - no side effects except for gastro incidents at the beginning.
Had a recent relapse - felt weak, foot drop, Ms hug - saw neurologist and said mri showed new lesions and some had healed. I’ve nearly finished another course of methyl presidone and feel great. Have to see neurologist next month re starting /
discussing new drug

I was thinking Tecfidera after reading George’s book but worried about PML. Any thoughts on this drug or others??

I really like Aubagio but I suppose it’s not strong enough.

Dr had initially suggested Tysabri which scares me even more with Pml risk!!!

I’m on OMS diet and feet much better for it.


Rene

Re: Tecfidera

PostPosted: Fri Oct 12, 2018 11:08 am
by Geoff Allix
They will check for PML when you're prescribed Tecfidera.

I was on Tecfidera for two years and found it quite manageable. A tablet twice a day which must be taken with a meal. If I didn't take it with a meal then I got a hot flush to the extent that I was soaked in sweat if this happened at night (literally soaked), but if I had a filling meal at the same time it was fine.

I stopped because it caused my lymphocyte count to go too low. They monitor this with blood tests. If your PML test is fine, then it's a good choice.

With regards to OMS, you're unlikely to get any benefits yet. Benefits tend to start at 6 months and then steadily improve year after year, so stick with it and, hopefully, you'll see improvement.

Re: Tecfidera

PostPosted: Sat Oct 13, 2018 6:41 pm
by ReneDG
Thanks for replying Geoff - are you on any medication now?

All the best!

Re: Tecfidera

PostPosted: Mon Oct 15, 2018 8:40 am
by Geoff Allix
I had 1st round of Lemtrada in March

Re: Tecfidera

PostPosted: Wed Oct 17, 2018 4:03 pm
by Fingersandtoes
I'm on Tec. I started about the same time I started OMS - though OMS wasn't a big shift for me as I was already pescetarian and reducing dairy and eggs. The biggest changes were cutting out coconut oil, no more cheese binges and having almond yoghurt instead of coconut. I felt good but very very hungry. With Tec you are supposed to have protein and fat and it was a bit difficult to get enough fat with OMS. I probably broke the rules a bit at first and ate too much peanut butter - but I also started training for an ultramarathon about the same time I started Tec and OMS so my calorie needs were high!

My experience with Tec so far has been great. The nurse took me through potential side effects and remedies. I went out and stocked up on all of the remedies. The only ones I've really needed were one aspirin for the one time I got flushing (it worked), and some sweets for when I got nausea (also worked). I've discovered that if I go too long (4 hours +) without food I can get nausea, the last thing I want to do is eat but if I do I bounce back to normal. Emergency snacks are a must.

I've scaled back the running from ultras to marathons and my calorie needs and weight have stabilised. My athletic performance has improved on OMS - all of the famous vegan ultrarunners say a plant-based diet helps them to recover faster and I've certainly found this to be the case, although my diet wasn't so different before so maybe it's luck.

I've had three recent MRIs - one before my diagnosis in August last year. I had a relapse in October then was diagnosed in November. I had another MRI in March. Despite the relapse there were no new lesions. And another MRI at the start of last month - again, no new lesions. Bloods have been good as far as I know - I just received all of my appointments for the next year so hopefully that's a good sign!

I have a neuro appointment in early December and am hoping for the magic NEDA (no evidence of disease activity) - fingers crossed!

Re: Tecfidera

PostPosted: Sun Mar 17, 2019 10:34 am
by ReneDG
Hi thanks for your reply - only just saw it! I ended up going with gilenya -
Dr didn’t think tec would be strong enough. Been doing well since Relapse in September. Hope you went well with neuro appt.