Newly diagnosed and confused/terrified about DMTs

Hi everyone. I’ve just recently been diagnosed with RRMS after years of back and forth with eye problems (which have turned out to be Optic Neuritis). I weirdly had no pain with my ON, but get really blurry central vision which gets worse when I get hot. This has been ongoing for 5 years now… the blurry vision never goes away, it just gets worse/eases slightly. Anyway… I had my MD diagnosis after 2 MRIs and new lesions in brain and spine. I’ve now been offered DMTs and I’m pretty scared to say the least. The side affects of ALL of the ones I’ve been offered sound horrible. I think at the moment I’m stuck between Tecfidera and Plegridy… possibly slightly more leaning to Tec. Does anyone have any advice or experience of these? My other options are Avonex and Brabio (Copaxone).
ANY help would be really appreciated… I’m lost and scared at the moment!

It is usually a good plan to go for the highest-efficacy drug you’re offered. This is because DMDs are your friend against the enemy that is uncontrolled MS. These drugs really do give you the chance to stay as well as possible for as long as possible. I am sorry about your dx.

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Hi, I’ve been on Tecfidera for about 3 years and have no particular problems with it but I’m not sure it actually does me much good. I’ve not had a relapse since I’ve been on it so my MS team consider that means it’s doing it’s thing but my mobility has got worse over the same period which my MS team put down to me having had MS for 20+ years. Who knows :roll_eyes: Not much help to you I know but I find Tecfidera easy to take (after 15 years of injecting betaferon) with no side effects (other than a bit of flushing sometimes). Good luck with whatever you decide to do…

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Hi Becky, sorry to hear about your diagnosis but glad you have found us here.

Like your other reply, I injected Betaferon for about 15 years then changed to Tec about a year and a half ago. I wish I had done it sooner. I didn’t mind self injecting but Tec is so much easier. I have had no worsening of symptoms or relapses and no side effects so am really happy with it. Some people report stomach problems after taking it but if you take it with food, this doesn’t seem to happen.

Good luck with whatever you decide but MS can have a mind of its own so throw everything at it like meds, diet, exercise, rest, lifestyle changes to reduce stress if you can and you stand a good chance!

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Hello Becky

I’m so sorry about your diagnosis. It is pretty scary facing the future with MS. But honestly you are better off taking a disease modifying drug than not. They are designed to reduce the number and severity of relapses. This in turn can reduce any possible disability for the future. In a way they are an insurance policy.

My rule of thumb is generally to go for the drug which offers the greatest relapse reduction potential. But really you should look at the drugs you’ve been offered and think about your life, the benefits (relapse reduction rate) and costs (means of introducing the drug to your system ie type of injection or oral, plus possible side effects). What might help is MS Decisions aid | MS Trust This details all the available DMDs and will allow you to compare them.

What I would say is that Avonex and Plegridy are basically the same drug, beta interferon type 1a. Avonex is a weekly intramuscular injection (scarier type of injection for many but less injection side reactions). Plegridy is a fortnightly subcutaneous (just under the skin so easier to do yourself and less frequent). Beta interferons tend to give people flu-ey type effects, but these are generally controlled with paracetamol.

Brabio is the same drug as Copaxone. It’s just a cheaper version. Again it’s subcutaneous but more frequent - daily or 3 times a week. It often gives less side effects than beta interferon. The only thing you do have to be careful of is injection site reactions.

Avonex, Plegridy and Brabio all have similar relapse reduction rates about 30% less than if you take no DMD. But that is an average, some people will have more and others less relapses on these drugs.

Copaxone is very different, it’s a daily oral (tablets) therapy. It’s easier because it’s pills. It also has a better relapse reduction rate of about 50%. But it does make some people quite nauseous. The way to deal with that is to sandwich the pills between stodgy food types. That is easier for some people than others. It depends on your lifestyle and indeed your usual food intake.

(I’ve taken Avonex, Copaxone and Tecfidera. They all have their benefits, but for me none was ultimately suitable!)

What you should maybe do is have a good look at your options and discuss them with your MS nurse as well as your partner, if you have one, or a friend/family member who knows you well as whose opinion you trust.

Best of luck and welcome to the forum.

Sue

Hi Becky, I’ve been taking Tec for just about 3 years now and in that time have had no new relapses. I take one tablet twice a day with food or a thick fruit smoothy, easy! I’ve not had any side effects other than some flushing when I initially started. Bloods taken every 3 months so any issues would be picked up. In my experience I’d definitely recommend it.

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