Hello, hope everyone is doing well. I am looking for advice/feedback. I was diagnosed with PPMS in late 2014 and since then have tried a few things to help with my sensory symptoms (Amitriptyline and then Pregabalin), but things have been deteriorating. I had another MRI recently and it shows new lesions in my spine, but no active MS. Overall things seem to be progressing faster than I hoped they would, my walking in particular. I have been told I might have a degree of continual relapsing occurring, without remission, and so it has been suggested I try Tecfidera, which is a DMD. Has anyone tried this before? And also, does anyone else have this mix of RRMS and PPMS going on? Thanks.
Hi Ian
Sorry to hear things are difficult for you, his you feel better soon.
I am sure I have heard somewhere, can’t remember where (MS memory!) that some people have had RPMS (relapsing progressive MS), hopefully someone will be able to enlighten you more.
Not sure if you have been oon the forum before, so if not, welcome to the boards.
Pam x
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Hi Ian, I agree with Pam. Relapsing progressive… or progressive relapsing… not sure which way round it is!
IF the DMD gives you some positive results then it is not PPMS. DMD’s do not work with PPMS.
It is believed by some (and was first written about on Barts Blog) that PPMS might in fact be people who have had a very mild form of RRMS and then it turns into Secondary Progressive which is when they seek medical help.
I wonder if this is what has happened to you? Look back over your life can see identify any symptoms which either were not dx at the time or were not serious enough for you to see a GP?
I believe that is what’s happened to me as I had over 20 years of mild, unexplained symptoms (usually put down to anxiety) before I was dx with MS… and then PPMS.
Anyway, it will be interesting to see if the DMD works… if so, you can rule out PPMS.
Let us know how things work out and all the best,
Pat xx
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Thanks for the replies, much appreciated. I searched PRMS and sounds like it could possibly be this, although then read that some people are no longer using PRMS as a separate type, all rather confusing! Thinking back, I only started getting noticeable symptoms 3 years ago with numb toes, and since last summer I have gradually been ticking most boxes in the typical symptoms list, without them going away. I will give the Tecfidera a go of course, nothing to lose! Thank, Ian
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I was Dx with PPMS but managed to get myself referred to a doctor in London who agreed action was required and said rapidly evolving MS… when referred back to my local hospital, I saw a different consultant and he pretty much said there’s no definitive test but given my preferred choice of DMD was Tecfidera, he agreed we’d try it and see if it helped, he’ll take me off it, if I deteriorate over a year. I’m just waiting for it to show up now
Good luck, I’m hopeful at least
Sonia x
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Morning all, hope you have a good Sunday. I started this post last year when I was about to start taking Tecfidera. I have now been doing so for 9 months and recently had another MRI. No changes in my spine but new lesions in my brain. My walking has deteriorated slighty, fatigue getting worse and pain in my hands has increased alot. Whilst I’m pleased to be trying a DMD, I cant help but think that these changes are more PPMS than RRMS, and so wondering if I should really be continuing on this course. Ive got an appointment with my MS nurse this week. Sonia, how have you got on with it? Isn
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Hi, in some ways ok (bowels &bladder) better but walking getting worse, so suspect I’ll get taken off it in August. I’ve come around to thinking PRMS too as no one major thing since last course of steroids
I haven’t had new MRI since starting the tec so that would be interesting.
I’ve also managed to dodge the flushing quite well mainly by diet and even doing that with this mimic-fasting thing which I’ve been doing for 5 weeks now.
Sonia x
Hi Ian.
I started a thread along similar lines during the week. I’ll post the link should you want to read it…
Change of dx - Everyday living - MS Society UK | Forum. I was diagnosed last year with rrms, out of the blue! Wham! A&E, mri, diagnosed!! I was 55 then. My progression since then has been steady and fairly fast. My walking is very, very poor now. When the Neuro declared ppms this week, I was expecting to be told no point in taking this drug. At my request, she was happy to allow me to remain on it. My theory is, it’s not hurting me and I might be even worse if I wasn’t taking it. Who knows? I’m staying with it for as long as I’m prescribed it.
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You’re so right Poppy, until there is medication available for PPMS, I’d rather stay on Tec as who knows what it’s fending off and it doesn’t do any harm
Sonia x
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It looks like Ocrelizumab will be the first approved treatment for PPMS, although no idea on dates yet.
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Yes, I heard the were rushing it thru in the US but still waiting for news here.
Sonia x
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My Neuro mentioned something last week, sounds like Dacril…or something. Wish I’d made note of this name now, thought I’d remember it. Any way, she also mentioned ocrelizumab, but seemed to dismiss that one. She said the first one has had all the clinical trials and was awaiting FDA. This was said to me as we were leaving the room so never got the chance to ask more.
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Perhaps it was Daclizumab, but that seems to be for RRMS. Confusing isn’t it?
Very!
Iwas googling to no avail. I’ve emailed the ms nurse who works alongside this Neuro, to let me know the name. I’ll post if and when I get a reply.
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