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Advice please ????

Hi, I spoke to my neurologist yesterday, who said my latest Mri showed a couple of more lesions. Also that the Ms is active. I have relapsing reporting Ms, I ask the neurologist if the Ms had progressed to secondary ms. She said she would have to monitor me. Also he talked about me starting disease modifying drugs maybe a injection. The ms nurses will call me in due cause. I am just confused as to what is happening regarding the Ms. Has it progressed to secondary ms ?? Also shall I go on medication ?? I am already on pregabalin for pain and baclofen and clonazepam. Does it mean because the Ms is active I am going to keep getting relapses ?? Any help would be appreciated. Thanks.

active ms is often reccommended for lemtrada or tysabri which are both infusions. however you could also inject rebif (which comes with a handy gadget meaning you don’t have to touch or see the needle. the other alternative are tablets - tecfidera, aubaggio or gilenya. all these Disease Modifying Drugs (DMDs) try to prevent or reduce the frequency of further relapses. this will also help prevent further disability resulting from relapses. only RRMS Relapsing Remitting MS qualifies for a DMD. the meds you mentioned are neuropathic painkillers not DMDs. you should be able to remain on these as well as a DMD. you should be allocated an ms nurse who will help you with the DMD choice. it must feel like your brain is about to explode but these new developments are positive.

Your MS Nurse will be able to allay your fears. Either over the phone, email or appointment. Has anyone specifically told you that your RRMS condition has moved to SPMS? Who or what started your thoughts along spms?

You will most likely continue with RRMS, and it is only IF or until your condition has a complete change, that SPMS may need investigating.

I recently met a lady on a hospital ward, we both had MS, mine is PPMS & hers is SPMS. I quickly learned from her that, thankfully, not all RRMS cases lead to SPMS, so you’re still able to continue to take advantage of the remissions, plus the DMDs.

I have PPMS with no remissions. There are no drugs to delay progress. Everyone who has ppms is unable to have any DMDs, just a few treatments to help relieve symptoms.

It’s a great shame you have RRMS at such a young age, I know of a gentleman with PPMS age 31. His wife is his full time carer. They’ve just had their first baby!! He is housebound, mainly in bed feeling exhausted most of each day, He attends MS exercising classes and determined his life doesn’t end with MS. Take care of YOU Chrissie x

Hello

You do sound confused. It sounds like your neurologist has you all tied up in knots. Lets try to unpick some.

First of all, disease modifying drugs (DMDs) aren’t available for secondary progressive MS. So it seems clear that right now you are still RR. And if your neurologist is saying that it’s ‘active’, then you should definitely be thinking about going on a DMD.

Have a look at https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid

You are unlikely to have a completely free choice of DMDs. It will depend on exactly how active your MS is (Carole said Lemtrada and Tysabri are for ‘Active’ MS - I think that’s only Lemtrada, Tysabri is for ‘Very Active RRMS’). Also on what the neurologist proposes is best for you and then your own preference.

Then there’s the question of relapses. If, as seems likely, you are still relapsing remitting, then without a DMD you are likely to continue having relapses. (And as your neurologist wants you on a DMD, then they will be classing you as RR.)

The objective of a DMD is to reduce the number and severity of relapses. As to how effective a DMD is, that depends on the DMD in question. What you always have to do, is to weigh up the expected relapse reduction rate against the potential side effects. In general, the more effective drugs can have the potential for worse side effects. But (and it’s a bug but) everyone’s reaction to a drug is individual. You might start on a highly effective drug and have very few side effects and no more relapses.

So it’s probably a good idea to arrange to see your MS nurse and talk through all of your questions, the various drugs and what s/he recommends.

Good luck.

Sue