Treatments, Tablets, injections, IVs......help!!

New diagnosis and before diagnosis
1

Hello everyone. I’m back again asking for help/advice/thoughts…

I’ve got a wonderful Neuro and NHS treatment from start to now for me has been amazing. Can’t fault it at all, such amazing support which I am very grateful for as I know that isn’t always the case.

Anyway, I had a meeting with my Neuro yesterday to discuss treatment options and for him to (his words) educate me towards making a decision. For background, I’m 34 and been recently diagnosed with RRMS. 3 relapses in total, two in last four months. First one was most serious as I lost sight in one eye which has now recovered but I’ve found the relapses so far very simple to cope with. And I know that is not everyone’s experience.

As far as I can see I’ve been offered every sort of treatment available from injections, to tablets (Tecfidera) to the monthly infusions of Tysabri or annual infusions of whatever it’s called but it didn’t sound very nice (consultant suggested it was a form of chemo). I’m sorry but I don’t have the name as I can’t decipher his writing and can’t narrow it down from websites. I’d be massively grateful for your thoughts on these and not what you would do in my position as I realise I can only answer that but what works well for you. I have a massive phobia to bring sick and sickness as a side effect really bothers me, other side effects I feel I can cope with.

Also as I’ve been offered the high end treatment I am wondering if they offer that generally or not - he suggested it was extremely expensive (£50,000) and I suppose my thoughts are - are they offering that because I have bad signs that they know of, when tablets would do for many others? Or because of my age and it gives me a longer period hopefully when I’ll be OK? I met a lady who had primary or secondary progressive but she was on no treatment and hadn’t seemed to have been offered it, so why am I offered the lot when I wasn’t as bad as she was?! (She wasn’t terrible by any means). I’ve got time to make a decision but it’s worried me abit as I didn’t realise it would be quite as complicated as it is - especially when considering the side effects!

Sorry for the long-ish post and any comments or thoughts would be hugely appreciated.

Many thanks, Sam

2

Hi Sam,

I started with RRMS when I was about 30yrs. I wasn’t offered anything to help me for a number of years, & then started on a DMD (Rebif) which I was on for 8/9yrs. This is a very expensive drug, as are all DMD’s. People with RRMS have the best results with DMD’s, that’s why the lady that you spoke to with SPMS wasn’t on them, sadly DMD’s won’t help her. My disease has now progressed & I have SPMS, so had to stop Rebif as I no longer fitted the criteria. With Rebif the only side effects I had was ‘flu like’ symptoms for the first 8/9weeks on starting, no side effects at all after. So I’d say that you’re probably just the right candidate for DMD’s…you just need to decide, with your neuro, which one would suit you.

Good luck,

Rosina x

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Hi Rosina

Thanks so much for your reply - it’s really helpful. I see what you mean about SPMS too so that makes sense. In my mind I’m settling towards Tecfidera or Tysabri but not totally sure yet. Checking me now for NMO too which I realise is not MS so it depends on the result of that but (I hope) it looks doubtful that it will be that as prognosis is very poor. If it was that these DMDs would be totally wrong. It’s strange because I’ve known for 18 months the MS diagnosis was coming but it seems to have hit me this week now we’ve discussed treatments etc. and I’ve felt more worried. But otherwise totally positive. Really hope you are doing OK too.

Sam x

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Hi Sam,

I remember when I was given my diagnosis, it felt as if I’d hit a brick wall, head on at 100mph!! I had no idea it was MS because my previous neuro had told me it definately wasn’t! So you’re bound to feel appprehensive but try not to worry, sounds as if you have a good neuro to guide you through. I don’t have direct knowledge of Tecfidera or Tysabri but there’s bound to be someone on here that has. Collect as much info about the drugs as you can, although we each have different experiences, chatting on here may help you to decide what’s best for you.

Good luck with it all!

Rosina x