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How did you decide on first DMD?

Hi everyone, how much say did you have in choosing your DMD?

I’m liking the school of thought of going in hard, straight to 2nd line such as Lemtrada. Tecfidera is probably my second choice.

Did you put your faith in someone else (neurologist/nurse) to make the decision for you?

Any opinions gratefully received :slight_smile:

when i was diagnosed in 2008 the only choices were beta-ferons and copaxone.

i chose copaxone and did very well on it for 4-5 years but then i developed bad lipotrophy and my ms nurse said i should stop injections and was given the new oral treatments to choose from.

i chose tecfidera and i’m fine on that too.

carole x

Thanks Carole good to know you’re doing well on Tecfidera xx

I am taking tecfidera as it has the higher success rate from which I was offered

​all good so far/ it’s been a few months

Hello

I’m a Lemmie - just about to go into Round 2 in August. So far, so good. I had no problems with the Round 1 infusion and recovered quickly (with no infections, pseudo relapses etc etc).

My latest MRI showed that there has been no progression in my disease over the last year (no clinical relapses and no new lesions). Whether this is due to the drugs or would have been my outcome in any case, I will never know - but my first scan (March 2016) showed multiple lesions and a second scan (June 2016) showed one new one despite no new symptoms - so it has definitely slowed.

It is far too early to know whether the Lem will have given me a secondary auto-immune disease (one of the scarier side effects) - but the odds are on my side, I’m monitored monthly to make sure any issues are picked up quickly to they can be dealt with - and I’ll cross this bridge if I ever get to it. I’ve decided to deal with the autoimmune disease I have today - and worry about the one I may get tomorrow if and when I get it.

Apologies for not writing more (busy day at work and want to make a gym class at lunch!) - if you can search under my user name I’ve written much fuller accounts of my treatment on various threads before. Also, very happy to respond to any specific questions. I’ve just plucked this thread off of my activity line which may be helpful

Useful resources are Shift MS (lots of Lemmies on there), the Lemtrada/alemtuzumab for treatment of MS in UK and Ireland Facebook group and detailed blogs by people who have received treatment (try David’s Campath journey, Tracy’s lemtrada journey, cycling with MS). Also - for absolute inspiration

Mark Seacombe is fundraising for Multiple Sclerosis Society

http://tedxchelmsford.com/works/ellen-marshall/

Good luck!

K

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If you get on a 2nd line drug, it will be good news and bad news, the good news being that they are an option, the bad news being that your Consultant Neurologist thinks that the evidence on how your MS is behaving is alarming enough to justify them.

The neurologist won’t give you anything stronger (and therefore riskier) than he/thinks you need. So to that degree their professional judgement will always limit your range of options (given that they are the gate-keepers to the drugs). By its nature, professional judgement is not set in stone, however: a good doctor will always pay careful attention to the views of a patient who has a well-grounded understanding of the issues and coherent views on how he/she wants to proceed. So if you know what you want, say so and argue your point - there’s nothing to lose. If the neurologist does not agree, then he/she will at least have an opportunity to explain why and (one hopes) strengthen your confidence that he/she is really thinking about what is best for you.

Within the range of options that the neurologist believes to be OK for you, the choice will be yours to make, of course. Any yes, the Consultant Neurologists who have looked after me so far have been good 'uns and the nurses too and yes, I have faith in them. I hope that yours is a good 'un too.

Alison

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Thank you Katy and Alison for your great replies xx

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I’m like Carole in that the only options when I was diagnosed were interferon beta or copaxone. I opted for Betaferon and was fine with that for about four years. I had lipohypertrophy, but rubbing with Bio-Oil took care of that. Eventually, though, I just couldn’t do the injections any more. My MS nurse recommended that I took a holiday from the drug. Almost as soon as I came off it I found that Betaferon had been causing depression. Within a year my neurologist offered me a place on a clinical trial for Gilenya. I’ve been taking it since 2010 with no major side effects and no serious relapses.

When I was first diagnosed, they wanted to put me on Tysabri… but having read up a bit about it, it scared me enough to turn it down. (I’d be forever worried about it and scared all the time - didn’t want to go through that!). They offered me Rebif instead, (interferon beta 1a) and although I wasn’t keen on injections, I went for that… the lowest risk drug that stops relapses and has manageable side effects. I started it in 2014, and it appears to be working still, so I’ll carry on until it stops working!

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