I have RRMS. Tysabri and Gilenya are the treatments that are being considered. I’m not sure about DMDs for different reasons, so I was wondering what others think and why.
Personally I was very keen to get started on DMDs generally although I was only offered the injectables initially as my MS wasn’t very severe. My dx came out of the blue though following two relapses in quick succession and both were considered clinically significant and the second had meant I was barely able to walk for a month. It took a long while to recover from that one.
After reading up on MS, I also felt it was important to do something to reduce the amount and severity of any future relapses and hopefully the progression of the disease. For me, it felt better to be doing something positive rather than adopting a ‘wait and see’ approach.
I am now waiting to start Gilenya once we get the tests out of the way as I’ve had a bad year on Rebif and it’s time to switch DMDs again. Rebif did very well for me though for the past 3.5 years and even the relapses this year were milder than the previous one.
Thanks Tracey. That given me a few more things to consider. One question though, I’ve been having a relapse for the last year. I’m sure I been told this already, but am I right in thinking you need to be in remittance before you can start DMD treatment?
I don’t know for certain if you need to be in remission before starting, though it wouldn’t surprise me. Your MS nurse will be able to answer, so give them a call if no on on here can answer it.
Back to your original question though, I wish I’d started DMDs earlier. I went downhill very quickly, and I can’t help but think that if I was on one that worked for me it would have slowed things down a lot. When I did start I started on Betaferon but I didn’t get on well with it and it did nothing to slow the relapses down, so I stopped it and switched to rebif which was much better for me and massively slowed down the relapse rate.
No, I don’t think you need to be in remission before starting DMDs, I think the earlier you start on them the better.
Hi Juliet, I dont think you have to be in remittance before you start DMD treatment, I have heard that the DMD will not improve your current relapse (steroids might) but should slow future relapses and the progression of MS. I was put on the DMD Tysabri which seems to be ok, I have not been on any other MS drug so cant offer a comparison. I was diagnosed after a couple of agressive relapses and put straight onto Tysabri. I hope this helps, good luck. Mick.
Hi Mick & Dan, Thank you for your posts I’ve had methylprednisolone. Not only did it get me back to work, but it kept me there for over a year. Then it stopped working for me and I started to relapse again about the same time. That was a year ago I’m seeing my Neurology Nurse (I see her for epilepsy also) on Monday, so I’ve added the question to my list. I think both Tysabri and Gilenya are on the table, but I’ve had a bad reaction to some drugs in huge past, and I think that needs to be a consideration with Tysabri. I don’t know much about Gilenya. I was given a pack about it, but I don’t know what I’ve done with it. It isn’t with there set of my medical info. Juliet
Hi Juliet, You sound a bit confused about methylprednisolone. I’m glad it helped for you, but it does nothing at all to prevent further relapses, or change the course of the disease. It just helps speed up recovery from a relapse you’ve already had. So it didn’t “stop working” for you. It did the job it was meant to (got you back to work), but after a while, you had another relapse - that would have been nothing to do with the methylprednisolone not working, as it doesn’t stop them anyway. The new drugs that have been suggested for you ARE aimed at preventing or reducing relapses, so they’re not a replacement for steroids - they don’t have the same treatment goal at all. Most DMDs won’t stop ALL relapses - unless you’re very lucky - so there’s a possibility you still might be offered methylprednisolone in the future, if you had another relapse, even if you were also on DMDs. It doesn’t have any protective qualities - just gets you back on your feet quicker. Tina x
I’m presuming you don’t mean to be as patronising as you sound Tina?
I thought that was a helpful post clearly explaining the difference between the drugs.
Also thought it was a helpful and informative post by Anitra. The steroids only take the inflammation down and stop working when you finish them. I hope your meeting with the neuro goes well!
I know what the steroids do, and I know how they work. I also know know that after a while they stop working, as my scans proved. I wasn’t confused.
I’ve obviously upset people. I reacted badly to my interpretation of the way Anitra worded her email. I really just wanted to know what people thought about DMDs for RRMS, I know methylprednisolone is not a preventative drug and my comments about it were in response to another comment. I stand by what I said though, they stopped working after a while, and I started to relapse again. It wasn’t because the treatment ceased. I actually had another couple of doses after the relapse started. I’m told that’s normal. Anyway, I apologise.