Newly diagnosed - confused with drug choices

New diagnosis and before diagnosis
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Hi. New to site and first post on a forum so be gentle.

I have just been diagnosed with rrms, consultant has given me a list of drug options low and high risk think 8 in total and said he would back any that I decide I want to try. Met with MS nurse today and she went through them in more detail and said I just need to let her know and she will set it in motion. I wondered if you could share your experiences with your drug treatments, I’m especially interested in the higher risk newer ones and in general what affect whatever you have taken has had in terms of slowing down/stopping or even reversing any symptoms

thanks, really looked forward to hearing

Russtie

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Hi

I chose Tysabri despite being JC positive because I heard good things about it and also if it didn’t work then I could try something else. I was diagnosed with severe RRMS after having 5 relapses last year. Since being on Tysabri I have only had 1 relapse so I hope its working for me. I’m in East Kent and the MS nurses here and my neuro are fantastic.

I wish you all the best with your choice and treatment

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Hi

Thanks for that, just what I’m after. It’s nice to hear from someone that is experiencing it. I’m tempted to go for Lemtrada but feel a bit nervous about the risks involved

its a personal decision but good to hear how others have faired

thanks and good luck with your journey

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Hi I was diagnosed about 7 months ago. I had initially wanted to go for tecfidera or lemtrada (did not want to inject) but found out I had a low lymphocyte count and got spooked by this. I have ended up choosing Copaxone, the very thing I didn’t want to do, injecting. Funnily but thankfully so far it has been fine. I don’t use the autoinject, I use the syringes and with the needle being so tiny, haven’t felt any pain. Also no side effects so far apart from the light stinging after which doesn’t last long. I am only into my third week so far so time will tell. Not sure yet if copaxone is working for me. Apparently it takes a few months for any effects to be had.

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Russtie, your consultant should be helping you more than that, I think.

In the early days, the DMDs available were all much of a muchness and it didn’t matter which one a person picked. Not any more. Now that there is a much wider range available, both in terms of efficacy and risk (the two tending to go together!), it is the duty of the medical advisor (in my view) to use his/her professional judgement to help the patient to narrow down the choices.

I would ask your neurologist: ‘Which of these drugs, in your professional opinion of my MS and how it is behaving, offer me the best balance of risks and benefits?’

Sorry, Russtie, that isn’t really what you wanted to hear, but I do think you have been short-changed by your neurologist. Please politely insist on more professional guidance to narrow down the options. Once you have a short-list, then our anecdotal stories of our personal experiences might help. But we are not a substitute for proper professional advice, and you haven’t had enough of that.

Alison

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Thanks Hope

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Thanks Alison. I have an appointment on 06/06 to discuss it further and have a list of questions as long as your arm

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Ah! This sounds familiar… when I was diagnosed (Relapsing/Remitting) they tried to put me straight onto Tysabri, but after investigating it a bit, I bottled out… it scared me too much, with talk of PML and all that. I decided then to go on to Rebif, which doesn’t stop MS in its tracks, and may be not as potent as some of the big guns, but is tried and tested already. The side effects of ‘flu like symptoms’ sounded a bit more manageable than PML, quite a lot less scary, and also involved rather less in the way of hospital visits and blood tests. Because I don’t like injections much, I have a ‘rebismart’ - injecting machine which does most of it for you. I haven’t had what I’d consider a relapse since I started on it, in January 2014, and as such I don’t see the need to change now… if my MS moves on then I might have to reconsider, but for now, I’ll stick with my Rebif! I don’t think specialists/consultants really give you enough information - when they decide that you should be on a DMD they present you with a list, tell you to choose one, and then back out and leave you to flail around by yourself…

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Hi Russtie,

I chose Rebif, which didn’t go too well I’m afraid. The injections were surprisingly easy and problem free, but I had to come off the drug because of truly unbearable headaches. I’ve yet to try another DMD, but it’s still on offer so I’m considering it.

Have you looked at the MS Trust’s ‘MS Decisions’ feature? It’s a guide to choosing a DMD. There’s a wealth of information on each drug there, click on ‘Visit the decision aid.’

Ben

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Thanks for that, very interesting. It’s the personal stories I’m interested in hearing to get a true idea of what it is like living with the medications in the real world

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Hi Ben. Sorry to hear that what do you think you will try next? I hadn’t seen that but it will be my next port of call

thanks and good luck

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Hi,

First time post for me too, I’m 12 years in from first symptom but only 4 weeks since diagnosis although I’ve always known since 2009.

Recent MRI extra lesions plus a few falls has enabled diagnosis and hence massive choice of treatments similar to yourself. I will be pursuing Lemtrada as my first course of action.

im married with three kids and would like to preserve what I have for as long as I can. I’ve decided to spin the wheel of fortune.

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Think I will be going the same way

good to hear from you and good luck

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Had my lemtrada last week, taking this week off work. It went very well. Very straightforward.

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