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Disease modifying drug journey...

I’ve been diagnosed with RRMS for 13 (or is it 14?!) years now, and in that time I have taken all of the injectable DMDs to no effect. In the last year, I have failed on Tecfidera and Fingolimod due to very bad reactions to them.

I last saw my neuro and asked if I could try Cladribine, only to be told I didn’t qualify as I’d not had any relapses. I had NEVER been told that I had to inform anyone if I felt I was having a relapse, and it’s been so hard to ever get hold of someone that in the end I gave up trying. My GP is well aware of how bad I’ve been over the years but my neuro looks at me and says “Oh, you look well!”, and essentially seems to judge me on my ability to walk into the room. There is no dialogue between my neuro and GP other than standard letters sent covering my latest write-ups from annual neuro reviews.

So I was refused Cladribine and am now on Aubagio, the poor relation of tablet DMDs. Constant running to the loo, ache all over, pounding headache. I know they all have side effects, and I’m prepared for that, but it irks me that because he never listens to a word I say when I visit him, I’m classed as having had no relapses and given a drug that my MS nurse knows little about as so few people take it anymore.

Sorry, in a ranty mood. I should be grateful I’m on anything when others aren’t. Forgive my moodiness!

Sarah

DMD cause more trouble than they cure so your neuro is probably right. He isn’t going to tell you that your pounding headaches are probably caused by the DMD’s. If you react badly to them stay off them, they’re not all they are cracked up to be and they can cause terrible side effects. I have had bitter experience with DMD’S and now wouldn’t touch them with a BARGEPOLE. I am NOT a person who would recommend them to anybody. My experience was horrific and made me worse not better. Your neuro knows what he is doing!

I was under the impression that you had to have a certain number of relapses within a period of time to qualify for any type of DMD.

Just curious because you say that your GP has said that you’ve not had any relapses, so how did you get onto injectable DMD’s in the first place if no relapse as ever occured ?

I’ve never been offered DMD’s, simply because in they eyes of the neuro’s I’ve not had a “recognised” relapse, even though my symptoms have gradually worsened.

I’m guessing that unless you’re hit with a sudden, obvious and dramatic change in condition then they dont see a gradual worsening as relapses ?

I’ve not developed any more lesions since first being diagnosed either so maybe that also goes against offering DMD’s ?

I’ve had many relapses over the years, my GP is aware of them and in the past I have mentioned them to various MS nurses (hence being given injectable DMDs in the past and then Fingolimod and Tecfidera). It’s just since taking the Fingo & Tec in 2016 & 17, and despite me telling my neuro and GP about relapses, according to my neuro because I haven’t “officially” marked these down in some fantasy leather bound relapse ledger kept by either him or an MS nurse, I have to take Terifluonomide because on my records it says I’ve not had relapses in the last year. It’s frustrating and confusing.

This brings up an interesting aspect of MS care; it seems not all neuros agree with the criteria for what a relapse is (“the appearance of new symptoms, or the return of old symptoms, for a period of 24 hours or more – in the absence of a change in core body temperature or infection” - taken from this website). My neuro certainly doesn’t view relapses this way. Also, repeat MRIs have never been offered to me, yet you say you’ve not developed new lesions, so I presume you’ve had repeat MRIs? There does appear to be a very broad range of care plans depending on who you see and where you see them maybe.

I just find this stuff interesting from a nerdy-perspective. How can data on MS patients be collated effectively when their care varies so much? Sorry, off on a tangent…

xx

Hello Sarah

Do you keep any kind of diary in which you can clearly state on X date a relapse started with Y symptoms and lasted Z length of time?

If you personally can identify clear relapses, and have had or could have an MRI which could show current and past areas of damage, this could be accepted as evidence of relapses.

In your situation, I would write to your neurologist spelling out when you’ve had relapses, what happened during those relapses and their duration. Ask for an MRI to back up your personal evidence and request a more effective DMD.

Aubagio has the worst relapse reduction record of all the DMDs, either oral on injectable. If you’ve ‘failed’ on DMDs, you could qualify for more effective DMDs, but you need the neurologist to be on your side.

As for which one to fight for, to be honest it depends on what your side effects were which made you stop the Tecfidera and Fingolimod. If it was due to short term effects like stomach issues, you should be OK with any of the more effective drugs. But if it was for eg raised lymphocytes or other more serious effects, you might be better off with a drug that has a relatively short half life, so if you had side effects, the drug would be out of your system quickly.

I think it’s worth fighting to be on a more effective DMD. I disagree that they are all awful and do more harm than good. Even though I’ve actually been unlucky and had severe side effects from several different drugs. That’s just unlucky though. And the fact that I haven’t been able to take a DMD has caused very serious relapses which have left me extremely disabled. I would always recommend anyone with RRMS take the most effective DMD they can in order to reduce potentially disabling relapses.

Sue

Hi Sarah, It sounds like your MS is classed as active RRMS rather than very active RRMS (according to your care team).

But according to the MS Trust Decisions website, you could ask for Lemtrada (Alemtuzumab) as this DMT is for active or very active MS.

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

Whereas Cladribine tablets are only suitable for very active MS (as on the decisions aid website), so that’s probably why your neurologist won’t agree to it.

Would you consider Lemtrada? If yes, maybe mention it to your MS nurse or neuro.

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I don’t keep a diary, but I know I should. I suppose because I’ve have this for so long, and just see the ups and downs (and relapses) as part of it all, I don’t feel the need - except of course this has now come to a head when I have a neuro who doesn’t believe me.

The injectables were stopped as none slowed down relapse rate (I tried 4 different ones); had to stop Tecfidera and Fingolimod for extreme side effects (on the advice of MS nurse/neuro). So I’m miffed to say the least that I’m being “forced” to take Terifluonomide before being considered for anything else. I’m also concerned, that if I were to turn round and say “I don’t want to take this anymore” (which to be honest, I’m quite close to doing), I’ll be burning all bridges with my neuro.

Thank you for your reply; I agree that if you can take a DMD, you should!

Sarah