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New to MS

Good Evening

My husband has just been diagnosed with RRMS after 4 years of you may have probable ms he got another MRI scan done which showed up new lesions. He has now had information through the post yesterday that he will be starting Tecfidera. Just wanted to ask opinions on this drug also he was given a prescription for LDN which he started taking 2 weeks ago. Does anyone take LDN together with DMD’s. Any help appreciated thanks

Hi Shazgib. I was initially dxd with rrms 3 years ago. I chose to take Tech and got on really well with it. I also took ldn for a few months. Not from the neurologist, she doesn’t believe in it and considered it snake oil. She knew I was ordering it privately. It did nothing for me and I stopped using it. Unfortunately, as my ms progressed steadily and my mobility declined rapidly, it was decided my ms was primary and not rrms after all. There are no DMDs for ppms. I wish your husband the best of luck.

hi shaz

i’m on tecfidera and it is a very straightforward med.

2 tablets a day.

to avoid side effects you should eat before taking it.

i found it best to take it part way through breakfast - cereal - tecfidera - toast.

the side effects are gastric issues and flushing.

the gastric issues resolved for me by taking it mid meal.

the flushing still happens but if you see the funny side it helps to keep it in perspective.

i say that i’ve become an oompah loompah or even that i look as orange as donald trump.

the latter makes me feel sick!

carole x

Hi

I don’t know whether it’s bad news for you and your husband, or just relief that at last he has a definite diagnosis. Whichever it is, you have my sincere commiserations for having to be in this club.

Good news that he’s starting Tecfidera. There is some argument that it works best of all when it’s the very first disease modifying drug (DMD). (See Multiple Sclerosis Research: #NeuroSpeak: DMF as a second-line agent or not for more information.)

I don’t know enough about LDN to say whether it’s likely to help or not. As Poppy said, some neurologists consider it to be a good drug for MS, others the reverse. But you probably lose nothing by giving it a go. And I know that lots of people do take LDN together with their DMDs .

Best of luck, if you have questions, concerns or need advice as to where to find information, come back and ask. We’ll do our best to help.

Sue