highlander 03/05/18
Last reply 3 weeks ago
SPMS

Hi all,
From what I’ve read there doesn’t appear to be treatment for SPMS other than symptom management, just wondering if I’ve misunderstood what I’ve read or you have a better way of explaining the options available.
Keep smiling!
Thanks.

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mmhhpp
3 weeks ago

@highlander

Hi i have spms. You are right not much for spms. I read about siponimod but in my opinion only works a little bit.

If you have new lesions on mri but not active you might be able to get cladribine injections. But again not sure if this will stop ms if there is any small inflammation, not picked up by mri but lumber puncture may do, might work , it may reduce brain shrinkage.,,..i am not a doctor but that is my interpretation.,,,


stumbler
3 weeks ago

@highlander , as @mmhhpp says, there isn’t anything really for the progressive variants of MS.

Ocrevus looks interesting, but that is just for early stage Primary Progressive MS (PPMS), as well as Relapsing/Remitting MS (RRMS)


samanthathompson
3 weeks ago

Hello,

I was recently told that I had moved to SPMS two years ago (not surprised but cross that I hadnt been informed sooner) and was started on Rebif. I was confused at the time because I thought that there was no treatment options. I cannot find anyone else who is secondary that is on a first line DMD.

The Siponimod drug looks promising but a long way off yet.

Sam


aabreu
3 weeks ago

Some claim that HSCT is effective. I don’t know what to think about it. There is a guy named George Goss on Facebook. He has a group and is a big proponent. He claims he was SPMS and helped greatly by HSCT. I’m RRMS and accepted in the trial at Northwestern. I have hope it takes me back in time where I was able to feel my fingertips.


stumbler
3 weeks ago

@samanthathompson , here’s a booklet about Secondary Progressive MS (SPMS) :-

https://support.mstrust.org.uk/file/store-pdfs/Secondary_Progressive_MS_2017.pdf

Chapter 2 covers the diagnosis of the transition to SPMS. And that this can be unclear and could take some elapsed time. 😕


rolly
3 weeks ago

i’ve had spms for 6 years. your understanding seems pretty much correct.
it does appear that some with spms are given dmds by their doctor, though i have no idea of its effectiveness. i’ve been repeatedly told that there is nothing for me other than symptom treatment.
a friend of mine went thru hsct last year and says that progression seems to have been halted at least, though the jury is still out on how it has actually helped her, as its still early days. its a gruelling treatment with substantial risks involved, though.


peterfrancis
3 weeks ago

I have SPMS and Treatments were only briefly mentioned to me in terms of they would not be right for me as I also have Type 1 Diabetes and the side effects would be very detrimental to my health.

So I was given Gabapentin and Baclofen drugs to try and help with some symptoms.

I can remember the Doctor saying that there isn’t really anything in the way of successful treatments for SPMS as of yet.


samanthathompson
3 weeks ago

@stumbler – thank you.


aabreu
3 weeks ago

@peterfrancis Funny you mention Type 1 diabetes. I dont know where I read it, but HSCT has been found to cure this type of diabetes. Turns out Type 1 diabetes is an auto immune disease. I wonder if anyone with MS & Type 1 diabetes underwent HSCT and found both conditions put into remission.


peterfrancis
3 weeks ago

@aabreu

Really?…… As far as I’ve always been aware there is no cure for Type 1 Diabetes.

Don’t know anything about HSCT.


aabreu
3 weeks ago

Found this video with Dr. Burt talking about a trial he performed in Brazil. He’s my doctor and I am undergoing an aHSCT for RRMS soon.


mmhhpp
3 weeks ago

Hi all I recently listened to a talk given by Professor Franklin in Cambridge and I clicked my mind he said HSTC what it does is delete your immune system and you have a new immune system which in theory should reduce inflammation and the attacks so I honestly do not see if that could really work for secondary progressive MS . Effectively it looks like is like another disease modifying therapy targeting the immune system effective for rrms.


stumbler
3 weeks ago

@mmhhpp , there may be some benefit if you still have an neuronal reserve left. That’s if you haven’t depleted this with your remissions during the RRMS phase.

But, you never know what the brain is capable of doing, once it doesn’t have to deal with a misfiring immune system……..


highlander
3 weeks ago

Hi all, I’d like to say thanks for all the info most interesting, kind of explains why MS nurse didn’t mention a treatment plan and just whizzed me off to see physiotherapist and a speech therapist, would have been nice to have had that explained a little better from the off. But hey hoe.
Keep smiling!

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