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What does the ms nurse mean??

I have been on azathioprine (I think) sorry can’t remember name it’s the cancer ms drug for about 4 years. Feeling pretty rubbish so tired all the time. Problems with temp. And memory. Ms nurse last time seen said she thinks that’s me finished with relapses. I don’t know what she means. Please help. Is that it?? I don’t get it as i feel so rubbish?? Please help?? Cbear

Hi,

If the MS nurse thinks your not getting anymore relapses then it could mean you have moved to a progression phase of MS

. I remember years ago I was on Rebiff and the Neuro took me off it because he said I had progressed from R/R ms to SPMS

If you don’t have remissions any more and it is slowly getting worse then this is what it could be…

Kielyn

I was first told I had R/R, and every consultation afterwards nothing changed in terms of disease level, ie it stayed at R/R, however on the last consultation (3 months ago) I saw a new consultant who told me I was now “transitional”, she don’t like using the word progressed as it’s too much of a grey area, her words not mine !

Personally I think the term “transitional” is more ambiguous.

I’ve never had a relapse in the 4 years since being diagnosed but have gradually just got worse, and I have never been on any form of DMD’s, just meds to try and help with symptoms.

Clinic have always explained to me that theres no point in having meds to stop or hold back a relapse if your not showing signs of having any or if you’ve moved passed that stage !

I have to say though, in your case the MS nurse seemed to be very cold & blunt in her explanation.

Personally I think you should ask for a further explanation from the consultant.

As others have said, if the medics think your MS has ended its Relapsing/Remitting phase and has moved into the Secondary Progressive phase, then they would want to take you off drugs that are designed to reduce the severity/frequency/impact of relapses. There is no use taking such drugs if you are past the stage of relapses.

They usually like it to be pretty clear that a person has definitely moved into the SP phase - there can be a grey area between RR and SP, and many people want to stay (and their advisors want to keep them) on their DMD for as long as there is a chance of a relapse. I think you need to get more clarity and detail about your own circumstances directly from your medical advisors - there’s no substitute for that.

I am interested that you have been on azathioprine to manage your relapses. Were there particular reasons for putting you on that rather than one of the newer generation disease-modifying drugs? Anyway, if it has kept you free of relapses, then that is good news. But if the medics think it has done its job and you would now feel better without it, then stopping might improve your quality of life all round. Definitely a question only they can answer.

Alison

Your MS nurse was not very helpful but it is such a complicated thing. For the first seven years after I was diagnosed, I never had anything that I recognised as a relapse but I did get slowly worse. After that I started to have periods when I was worse and then a bit better. This included three episodes of Trigeminal Neuralgia (agonising facial pain). These were all really obvious relapses (inflammatory activity) as they flared up and went away again.

It sounds like you should be talking to a neurologist, not an MS nurse. You should probably move to a Disease Modifying Drug that doesn’t make you feel so bad.

Azathioprine is quite an unusual drug to be used as a disease modifying drug for MS. If it’s making you feel this bad, I’d be asking your neurologist to swap to a different DMD.

However, your MS nurse doesn’t think you are having relapses anymore. This could be because the Azathioprine is actually doing its job and preventing inflammation ie relapses. Or it could be because you are now in a more progressive phase of the disease.

Whilst you are taking a DMD, it’s basically pretty difficult for a nurse to decide that your MS has become progressive. (Some would say impossible!)

Perhaps what you really need is an appointment with your neurologist. Discuss with him/her the type of DMD that you are taking and whether their opinion is that you are no longer in a relapsing phase of the disease.

Sue

Hi thought I should update my post. The medication I had was Lemtrada, (alemtuzamab) sorry I couldn’t remember the name. I’ve been on about 8 different dmd’s all with their problems. Thus one has been the best one so far I guess but the fatigue Is pretty unbearable. :frowning: I do have a neuroligy appointment some time Next year so I guess I can quiz him then. I usually fall to pieces And forget to ask stuff but I’ll try. Clara

Hi Clara Oh, completely different scenario then. The point of Lemtrada is that you pretty much shouldn’t get any relapses after the second of two rounds of the drug. Which is why your MS nurse thought you shouldn’t be having any more relapses. We’ve all been imagining that your MS nurse was suggesting that your MS had moved into a progressive phase, which is not what she was saying at all. But, as far as I know, that doesn’t mean it works quite as perfectly as that for everyone. I suggest you get in touch with your neurologist (perhaps via his/her secretary) and ask for the appointment to be sooner rather than later. I believe it’s possible to have another round of Lemtrada. Unfortunately I don’t know much about the drug or what side effects you can have, for that you really need an expert. Sue

I’m sorry I couldn’t remember the drug I was on. Part of my prob at mo :frowning: I just don’t understand where I am at mo with everything. Is this me now. Am I cured? Unfortunately I definitely don’t feel it. Slept for about 12hrs during day. Had an episode in supermarket when I couldn’t Understand how to hold on to shopping as i felt my atm wasn’t doing what I asked Is this just the way it is now??

Hopefully not. I think I remember that you can see improvements from being given Lemtrada several years after taking the drug. Hope this happens for you.

Aw don’t worry Clara, I’m sure none of us minded answering a different question from what you meant.

I don’t know if Lemtrada should ultimately mean more or less ‘cured’. Have you had both infusions or just one?

If you have really severe brain fog, I think your MS nurse should take it more seriously, and you should probably see the neurologist to ask all the relevant questions. Start writing them down, then you won’t forget. In fact, if you don’t already, start keeping a diary of symptoms. I’ve had mine for 6 years now and to be honest I’d be utterly lost without it.

The sort of fogginess where you aren’t sure how to hold a shopping basket is quite a problem and I reckon you should get some expert advice. I’ve had that sort before as a result of a drug reaction and it’s quite scary.

Sue