Last reply 3 months ago
Treatments

I’ve got to make a decision on treatment by tomorrow.. and I don’t know where to start. Which is the better treatment..
Dimethyl fumarte
Glatiramer
Interferons
I’ve been reading for the past month and still not picked the one I want to start on.
Some advice would be great 😀

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kizzey65
3 months ago

Hi I was on tecfidera or dimethyl fumarate for 2 years and it did not help me. The only side effects I had was flushing feeling very hot and my face and upper body getting very red and feeling very itchy, it settled down after a few months but still happened about once a week, but until you start taking it you won’t know what side effects you will have. I tried 2 different DMTS which were unsuccessful. I was eventually offered a Stem Cell transplant which up to now has shown no further lesions or further deterioration. Maybe it might be worth speaking to your neurologist again as it takes about 2 years for these drugs to work or not and then you will have 2 years wasted. My neurologist said this was the route many Neurologist are suggesting. Hope you get the results you want.


rebeccar07
3 months ago

@kizzey65 thank you so much for your help. Means a lot to hear different stories about treatments. X


highlander
3 months ago

@rebeccar07
Hi I kinda chose mine this way.
I don’t trust myself to pick my own nose so injectables didn’t float my boat….
So I thought about infusion, but Neuro wanted me to hang fire with them to see if I done ok with what I sort of chose Tecfidera.
I’ll find out in September after mri if it has done any good…
They caused me mild side effects but have mainly all gone.
It just pop’s up every now and again to let you know it’s doing something.
Hope this helps.


rebeccar07
3 months ago

Thank you. I was thinking of going with the tablets twice a day (DF). As the injections doesn’t float my boat either.
Thank you again for your advice. X


kizzey65
3 months ago

Have a look at Professor Gavin Giovannoni who is doing major MS research at Barts Hospital London. Website : Barts MS blog. Its a wealth of knowledge and advise if you want to do some research.


dominics
3 months ago

@rebeccar07 – Hi. This really pisses me off. Not you, I feel terribly for you as it is a minefield when you are newly diagnosed, the fact that you have been left with the feeling that you are responsible for choosing a medication.

Apols for dropping this on you now. It is far from too late to have chats with them.

That is not what the NICE guidelines are saying to the Docs and Nurses. Their aim if for it to be a joint decision. If a patient is left feeling as if they are bearing the burden of responsibility then something has gone wrong. Grrr.

I don’t know what sources you have been reading or were directed to read. I also have no idea if there have been any discussions with you by the team about where your objectives (having a child for all I know) and ambitions, views, attitudes, prior experiences have led you.

Of the three you list only one – Dimethyl Fumurate – is remotely modern. There has been a great shift in views on treatment strategies in the last several years. Put simply: MS is never benign, MS is never inactive, untreated MS inevitably leads to a faster onset of disability and therefore the aim is to treat MS as aggressively as possible as soon as possible. At best beta interferon and glatiramer acetate are immunomodulatory, not immunosuppressive as the more modern medications are.

https://tinyurl.com/y63txrgw

https://multiple-sclerosis-research.org/2019/02/flipping-the-pyramid/
I have taken all three in my 26y of diagnosis. Dimethyl Fumurate (Tecfidera) is not only clinically far more advanced and efficacious it is also an oral therapy. All have side-effects. The Tec ones are easily managed and in the longer term are worth it.

The idea that the side-effects of an MS DMT can be compared to a simple medication like ibuprofen is just poor advice. MS is very serious. Serious conditions warrant serious drugs. Serious drugs ‘can’ cause more serious side-effects. That has to be set against the potential harms/benefits.

I hope it all goes well tomorrow. I’m no medic but if all things were equal I’ have the Dimethyl Fumurate.

Best,

Dom


stevenh67
3 months ago

Hi. I’m on week 4 of Tecfidera now. Early days clearly. Side effects have been manageable most of the time. Few bits of flushing and some gastro issues. But nothing drastic. And as we’ve seen and heard so many times with MS…we are all different. Try to take the advice on preventing the side effects as much as you can. I am pretty sure this has helped me…though my GP thought some of my gastro issues were caused by over doing the egg intake. Good luck with it all.


californiadreamin
3 months ago

It is surprising the choices you are being offered and the lack of guidance. My wife is on Tecfidera (dmf) for 2.5 years and so far it seems like it’s going well but it’s just one story and you can’t really make decisions based on that. Go with the science which is of the drugs you listed Tecfidera is your best option. A little more background on your mri results or symptoms may also provide some insight. Unless you are pregnant or will be soon, it seems like you want to start with some stronger interferons. You can always stop Tecfidera and it clears from your body in 24 hours. My main question would be why you weren’t offered more choices then what you listed. But I am in the US so things might be different.

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