Hi this is my first time using the site I’ve had remitting relapsing m.s for 8 years now and worried it’s changing into progressive m.s what should I do I’m scared
I think you should go onto one of the treatments that stop MS in its tracks. These are treatments that you are given once or twice and then you won’t get any worse. The ones I have heard of are Lemtrada, Cladribine, Mitoxantrone, Anti-CD20 (possibly) and HSCT-BMT.
You can talk to your neurologist (if you have one) about these treatments or PM me and I will give you the names of some neurologists who give these treatments. If I were you, I would do it soon.
I am currently on some treatment called Capaxone does this make a difference
Copaxone should reduce the number of relapses you have and slow progression. However, the therapies I mentioned STOP relapses and progression. I don’t understand why everyone is not being offered the effective therapies. The only theory I have is that people don’t know about them.
Sewing chick those treatments will not stop progression or relapses. For many people they can dramatically reduce the risk of both BUT for some people they can cause other problems and might not necessarily interact well with other medical conditions. The OP mentioned they were on Copaxone which is still a very good treatment. If they think it is no longer working for them absolutely go and see their specialist and see about alternatives but saying they can stop it totally is stretching the truth a bit.
I should think the answer to Kjays question is whether s/he is still RR or become SP, not whether s/he should change DMD. Which of course is only relevant if s/he is still relapsing.
And that (just like the question about changing DMD) is one for the neurologist.
Kjay, if you don’t have a neurologist appointment coming up soon, maybe you could hurry it up a bit by speaking to your MS nurse (if you have one) or the neuros secretary. Don’t be too quick to start thinking you are now progressive though. It’s a question that many of us ask ourselves (and our neurologist) frequently. But neurologists are less quick to diagnose SPMS than they once were, they want to be absolutely certain you are no longer having relapses before deciding that you are progressive, and therefore no longer qualifying for DMDs.
If however, you are still having relapses whilst on Copaxone, then you should ask about a different first line DMD like Tecfidera or a second line DMD - like Tysabri.
Obviously Sewingchick was talking about the very aggressive treatments like Lemtrada and HSCT. These can work like cures for some people, but they can also come with some very serious side effects. And some people have ended up more disabled by the side effects than they started with. Again, that’s a conversation to have with your neuro team. If you have very active RRMS then one of these treatments might be the way to go.
I agree with the guys that you should be speaking to your nurse or neuro.
I had 5 relapses in 2015 and since I started Tysabri 6 months ago I have only had one (3 weeks ago) Its not a cure but it may help.
Everyone’s MS is different so tell your nurse or neuro of any changes or problems. They are there to help and fingers crossed they can help you. All the best.
Here’s the quote from the doctors at Barts - remember these are the doctors who know the most about MS, probably in the world, certainly in this country. They know much more than the neurologists most of us see.
"An induction therapy (Lemtrada, Cladribine, Mitoxantrone, Anti-CD20 (?) and HSCT-BMT) is … given as a short course, i.e. intermittently and not continuously, and has the ability to induce long-term remission and in some cases the possibility of a cure."
They go on to say that the reason they cannot define these drugs as a cure at the present is because they have only observed people who have been given them for a few years. If 15 years go past and these people have had no more MS activity, then the doctors will be able to say they have found a cure.
Some people might be happy to wait for 15 years to take a drug that might be a cure. I prefer to have one of them now.
Here’s the link in case you want to check what I’m saying
Thanks for some insight I am a her and really suffering at the mo also with depression which doesn’t help I’m on so many treatments but will go bk to my m.s nurse asap thanks again
Thanks I’ve had so many relapses now on Capaxone there only mini I don’t need hospital treatment all the time but still really suffering with everyday life I will book all my appointments with m.s nurse , neuro etc thanks for your help