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vixen
3 months ago

Hello @blondie01, it’s always best to do research using official sites. You don’t necessarily have to rush until you feel comfortable with your choice. Some people get frightened by potential side effects. I chose Tecfidera because it really suits my lifestyle. But some people find that remembering to take two tablets a day is a pain and opt for other DMDs. If you use the search box on here with different types, you will find lots of helpful posts. Some neuros can offer good advice but others, like mine, didn’t want to push one medication over another. Hopefully, you will receive lots of support from an MS nurse. Good luck!


shamod12
3 months ago

@blondie01 talk to your ms nurse. I am on Gilenya 2yrs now (diagnosed in 04). Tablet a day keeps the ms away. 😊


stumbler
3 months ago

Hi @blondie01 and welcome.

It’s a bit of a balance between efficacy (effectiveness) and risk. And, then, as @vixen says, it has to fit into your lifestyle.

Research is key. Here’s some information on the treatments available :-

https://support.mstrust.org.uk/file/DMD-Book-Final-WEB.pdf


aabreu
3 months ago

HSCT


jodi_francis
3 months ago

Hi
I have used many dmd in the last 12 yrs. my favorite was gileyna because I could “forget”I had ms it was easy to travel with and everyone takes some pill even if it’s a vitamin. It worked for me for 6 yrs. now I take ocrevus I have had it only 2 x so the jury is still out on how it will work
Talk to your dr they can usually narrow it down for you
Also go to drug company sponsored dinners they will give you accurate info and you will be able to talk to people taking the drug they are sponsoring
Whatever you decide what matters most is that you are taking something and you are comfortable with your choice
And remember you can always switch if you don’t like what you have chosen
Good luck
Jodi


brando
3 months ago

Problem with MS drugs is its not a one size fits all kind of deal, some people prefer IV treatments and others prefer pills.

but also the effectiveness I started out on betaferon and that didnt work for me I was still getting relapses then I moved to tysabri andi haven’t left.

another question is what your willing to sacrifice I cant travel very far because of tysabri longest I can be away from home is 6 weeks. to best within my treatment times. but is you were on a pill treatment you wouldn’t have to worry about coming back as often.

hope his helps.

apologies didnt have time to read other comments if it’s already been repeated.

Brando.


sfrox
3 months ago

Neurologist gave me a list of 5 or 6 drugs to research. For each, I read a bit about them and mostly considered:
– cost
– safety
– effectiveness
– method of administration (injection, pill, infusion etc)

This came in handy:
https://mymsaa.org/PDFs/Treatment_Chart.pdf

And so did this:
http://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Brochure-The-MS-Disease-Modifying-Medications.pdf

Then I wrote up a list of questions for my neurologist, taking into consideration my own lifestyle habits, economic prospects, ability to follow drug administration instructions, my medical history, and other things. I called my neurologist when I had all of that in order and we talked for about 25 minutes, and I decided on my treatment.

Then I had to do a final vetting with insurance and drug company to make sure it was economically possible.

All of this happened over the course of 4 months. I was diagnosed in April and started treatment at end of August.

Although they say to start treatment ASAP, don’t be afraid to do things methodically and ask all the questions you need to. Good luck, it’s not an easy path but you were diagnosed because you can handle it.

hearts!


cammo
3 months ago

@blondie01 The neurologist gave me a bunch of marketing material for each drug. I chose the one (Gilenya) that didn’t involve me injecting myself.

Seems to be working but playing havoc with my liver enzymes.


blondie01
3 months ago

Thanks all very helpful tips! I am currently waiting to go on Plegridy which is injection based every 2 weeks. I didn’t want to do injections but I’ve read up a lot about them all and this one seems to be the better one which will relate to my life style and the side affects don’t seem as bad as some of the other ones – tablet form and injection form!! It’s so difficult to decide what one will suit me as a person so it’s literallh trial and error! Quite nervous about it all but we shall see!!! 🙁


dominics
3 months ago

Undoubtedly and without question: Step 1 is to talk to your treatment team at your hospital.

This is such a collection of variables and so many potential ways to go that it is imperative to talk to the experts first.

They will help you narrow down your options and choices to a manageable (in terms of research) load.

You really can’t start research without reading the Barts MS blog. It is a reliable and authoritative source.

Any forum is simply unable to offer medical advice, beware those that do!

Do let us know how you are getting on.

Best,

Dominic


msmsaustralia
3 months ago

Hi @blondie01

I was diagnosed with RRMS in 2014, have a bit of a needle phobia, so opted to go with Gilenya over the other DMD because it had fewer reactionary symptoms. You have to be given the first dose under medical supervision for a few hours. They use ECG monitoring regularly during that time because there can be a dip in your heart rate. It’s no biggie, now having done it twice (see below) – my partner came with me and we just took the opportunity to catch up on TV shows. That said, I would have appreciated a heads-up on the placement of one of the monitors: placed on your rib cage / heart / pretty much on your boob!

My lymphocyte count has been low since the beginning of treatment on Gilenya. I was taken off it to help them increase for about a 3-month period, then re-started again. My doctor’s aren’t concerned with the low count as I haven’t progressed / worsened since starting treatment. I still have blood tests every 3 months, so my needle phobia has lessened.

Good luck with your decision 🙂

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