@Andrew_Tarpey

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Andrew_Tarpey

Choosing a treatment

Hey I'm new here after being diagnosed in mid-December with relapsing remitting MS. The two neurologists I've seen have both been keen to get me started on treatment. I am currently in my 3rd year at university though, and am worried about the side effects medication could have on my ability to do my studies. So I was wondering which medication from your experiences have had the least affect on your concentration and such symptoms? If you've been in a similar situation what did you do? Cheers!

Stumbler

@Stumbler

Hi @andrew_tarpey , and welcome. You've asked an awkward question there as no two people experience the same MS symptoms and the same effects from Disease Modifying Treatments (DMTs). What I would say is that you should do your own research into the available DMTs and see what is involved, infusion, injection or oral, and how that fits into your Uni lifestyle. The MS Trust (https://www.mstrust.org.uk/) is a good place to start. But, do let your Course tutors/principals know about any problems that you may be experiencing. They should be well versed in allowing some flexibility and providing some assistance to ensure that can manage your graduation.

Loosefix

@Loosefix

I've been on Avonex for almost a year, some people seem to hate it, others have no issues. I am in the middle i think. Its not a pleasant drug, but it definitely gets easier. I had a harder time dealing with the diagnosis, than the drug itself - i think. I kind of obsessed over trying tell the difference between side affects and symptoms of my first 'relapse'. But finally the effects of the Avonex became a lot less, leaving actually very little 'deficit' which i am thankful for everyday... its a bumpy road from now on i guess. At the moment, for me, the thing that has been affected the most, is my confidence. I did a lot of reading/research, and one great piece of advise i took was... Do all your research, then put it all down, and just get on with your life! As for DMD's, alot of it comes down to what you can get!! Good luck mate. P.S i found a great you-tube video by a doctor doing a Q&A about all the different drug options.... fingers crossed there'll a cure soon.

naomih

@naomih

Hi @andrew_tarpey. Make sure you register your MS with student support as the Uni should be able to help with software that can assist with learning. I was provided with lots of powerful software which helps make studying easier recently from the OU. ?

yassyg

@yassyg

Hi Andrew I was diagnosed with RRMS in September and I have been on Techfidera for two months now. I have experienced some side effects of hot flushes and stomach pains but fortunately it hasn't been to bad. The MS society website has some dealt useful information about all of the DMTs that are available to us on the NHS. Have a look at Lemtrada as I have heard a lot of good things about it. Thanks Yasmin

potter

@potter

I have been on Tecfidera for 2 years and was on Rebif for 5years. The Rebif always made me feel down and out the next day, like I was recovering from the flu. The Tecfidera sometimes gives me stomach pain in the evening, I use to have diarrhea from it once a week but that is going away. When you start your DMT I would probably do it on spring break, give your body some time to adjust. Denice

LaVosa

@LaVosa

@andrew_tarpey: Hey there, and welcome ;) Since I'm in my 5th semester at uni, I'm in a very similar situation. I've decided for Copaxone (Glatiramer acetate) and I'm quite content with that choice. I had been frightened of side effects (especially from betaferone) impacting my ability to do my studies, but the only side effects I have are local reactions just around the injection site. Have you already talked to anyone at uni about your diagnosis?

Bellas1

@Bellas1

Hi Andrew, way back at the beginning of my journey in '97 I was urged by a consultant to start beta interferon as soon as possible while I was still walking. I researched the drug and horrified at the side effects, I read as much as I could and decided to wait and see. I also radically re-assessed my lifestyle and made loads of changes to my exercise regime, diet, drinking, amount of sleep and most of all stress levels. I'm still on my feet and although obviously not 100% I manage my symptoms as they arise (usually when I've been too lazy, been living it up a bit too much or something in the background, work, family illness whatever has over-stressed me). Shear bloody mindedness keeps me putting one foot in front of the other, even when my legs feel like they won't do it or I'm bouncing off the walls due to my balance. I'm not saying the same will work for you, this disease takes a whole lot of directions and I've probably just been lucky but I think their is always the assumption that everyone should have a drug regime.

Andrew_Tarpey

@Andrew_Tarpey

@lavosa Hi there! I have told my personal tutor and the university have it on record from a Doctor's letter that I've been diagnosed. I haven't really asked for any help in particular, but my tutor has said that if I request extensions there won't be any problems

cameron

@cameron

Do your research re: the DMDs, because the choice is not cut and dried. Make sure your medical support is good - however your MS pans out, you can't afford to have a so-so GP. Make contact with the MS nurse and talk out any issues. Don't keep things bottled up, and equally don't ignore any emerging problems. MS is now a manageable condition but (in my experience) only so if you are an active participant in your treatment. xx

Sonia1984

@Sonia1984

I had all minor stuff from the age of 19 and no answer and not from lack of trying on my end. I was confined to a bed due to vertigo and ended up hospitalized, fast forward finally a diagnosis. I immediately went on meds when they were offered because I know what untreated ms can do and if the medicine offers me some more years of mobility then the benefits far outweigh the risks to me. If I could turn back time and have a diagnosis at 19 even with the minor relapses I still would have taken the meds because we are lucky to have them. My uncle didn't have any meds at the time of his diagnosis at 26 and he wishes they had more treatment options for him as he progressed. I consider the newly diagnosed to have the advantage of modern medicine so we might as well at least try.

cameron

@cameron

Following on from what @orlando27 is saying, it may be that your MS doesn't make itself apparent for a long time - which is great, but is not a reason for ignoring it. If you get 'all the ducks in a row' i.e. good GP, good neuro team, swift move to treatment with a drug that suits you, lifestyle as-good-as-you-can-make it.... you are a) in the optimum position to deal with any MS issues and b) less likely to be bothered by other conditions which may in their turn have bad effects on the MS. If you can do this, you're back in the driving seat and have given yourself the best chance of resuming normality. And that's where we all want to be!

kizzey

@kizzey

I have been on tecfidera for 7 months and it seems to have halted the progression, the only side effect I get I some flushing but its OK. Make sure you have a good GP and don't be afraid to talk to your MS nurse the are a great wealth of knowledge as it hard to get to see your neurologist when you need. Don't just wait to be called information assessment be proactive and push them .