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1896537 tn?1381900009

Secondary Progressive MS question

Okay...so we all know that some people with RRMS will eventually be dx with SPMS but I was... just wondering what the chances of that are now that such a lot of us are using dmd's?

I have Tysabri and the other patient's at the infusion clinic say they've had no relapses at all in over six years of treatment. So, if they're not getting relapses does it mean they can't get SPMS?

Also, with regards to Lemtrada...if most patients don't need further treatment after the second course then surely they won't get relapses or progression either?

I was just wondering really...
4 Responses
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987762 tn?1331027953
COMMUNITY LEADER
Hi there,

In regards to Lemtrada, it's only just become available for MS late 2014, promising stats 50-55% reduction in relapse rate but i think there is limited long term outcomes and further studies yet to come. Interesting that those in the trial were classed as 'active' if they had at least 1 relapse in 12 months, i'd of thought 1 relapse was really good. It seems more targeted to MSers that haven't had the desired reduction in relapses on the other DMD's but their MS was still active (RRMS)......

"How does Lemtrada work?
Lemtrada was originally developed to treat certain types of leukaemia and lymphoma (cancers of the immune system). It binds to and kills white blood cells (immune cells) thereby stopping the immune cells from entering the brain and attacking myelin (which is the cause of damage in MS).

How is Lemtrada taken?
It is taken as an intravenous infusion on five consecutive days, with a second course administered on three consecutive days, 12 months later. For the majority of patients who took part in clinical trials, no further treatment was required 12 months after the second course (results for further years are yet to be published)."

http://www.mssociety.org.uk/what-is-ms/treatments-and-therapies/licensed-disease-modifying-drugs/lemtrada

In regards to SPMS, I don't think you can make the presumption that "they can't get SPMS", wouldn't it be more likely that a) the Tysabri is working to reduce relapses or b) they may have already transitioned into SPMS? Admittedly i can't comprehend that all the other patients haven't relapsed in 6 years, one would make more sense to me but all would get me questioning probability......

Cheers........JJ  

Helpful - 0
5887915 tn?1383378780
I'm thinking just because the other people at the infusion centre are not relapsing this does not mean they don't have SPMS. In SPMS you generally don't have the relapsing remitting pattern anyway but you usually have a slow progression of the disease without it being as dramatic or sudden as RRMS. It's odd what these people are saying but you may have a mixed bag of people who are actually SPMS and the others are lucky RRMSers who haven't relapsed. I don't know how many people we are talking about here either.

I think with Lamatrada I would be looking at it as with any other DMD that they are not a cure for MS. The aim is for them to hopefully slow down disease activity and this is often obtainable for some but not others. It can help people to varying degrees as well and this is where having the right DMD is important. They can work for years but then stop working so then it's time to move onto another.

This is all very similar to DMD's for Rheumatoid Arthritis. I took a drug that was new out many years ago and as so many people had a huge reduction in disease activity on this drug I had high expectations. To be honest I might as well have been injecting saline into my body as it did nothing at all for my RA.

I think the Lematrada is a drug that has lasting affects on the body and this is maybe why it's not used long term. It has only just been approved where I live so I actaully don't know an awful lot about it at this stage.

I hope this helps a little.

Take Care,

Karry.
Helpful - 0
1168718 tn?1464983535
Hi, I too was dx'd with SPMS, and have been told that because I have no active lesions on the last MRI I am not a candidate to any DMD's , but, it I started getting new symptons and it doesn't seem to matter.  

So, I;m not sure about Lemtrada, but I believe it is a "chemo" type drug, and it if is the same one that we have in Canada, it is only allowed to give 10 doses in your lifetime.  Most people take the first 5, and hold off on the rest to see what happens later in life.

I'm not sure where you are from... but, in Canada it is really frustrating for me.

I hope you get answers soon,

Take good care,
Candy
Helpful - 0
338416 tn?1420045702
Personally I think I've progressed to SPMS - I haven't had a relapse in five years. I have occasional new symptoms, but otherwise I'm feeling pretty good.

I used Copaxone from 2007 until 2010, and flirted with Betaseron on and off until 2013.
Helpful - 0
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