I have recently seen my consultant and after 14yrs without treatment he has offered me Lemtrada.
I was surprised to say the least, as i was under the impression that it was only licensed for RRMS. He tells me this is not the case but i can’t find anywhere that says it is.
Has anyone with SPMS been offered Lemtrada by their consultant ?
My understanding was that Lemtrada is only licensed for relapsing MS. I don’t know if you could qualify for it if you had SP but with relapses. Possible I suppose. Obviously I may be wrong, I’d be interested to know if anyone else has had it but been diagnosed with SP.
Sue
Hi Sue,
i again had the discussion with my neuro about RR/SPMS and the definitions.
I told him i had recently had some improvement and asked him if he was sure that my MS was now progressive.
He said he was sure and that anyone with any lasting damage/disability caused by relapses or otherwise and had not returned to ‘normal’, in remission , definitely has progressive MS.
He also said that many people have progressive disease with relapses in remission and can have DMDS.
My ms is very active and i am having lots of relapses but have never been offered a DMD in 14 yrs.
Confused ? I really am now .
Lots to think about, as i didn’t think i was eligible for any treatment and was going to find out if i was a candidate for cladribine.
Lisa
Hi Lisa
There’s this whole thing about the difference between ones disability progression and MS being in a progressive phase that I just cannot get my head round.
My neurologist has me very definitely in the RR camp (to date) and for that reason, I’ve tried one DMD after another. However, my disability has progressed over the 19 years so I’m now about a 7 on the EDSS. I can only walk a few steps with the help of FES and a walker, and that only a few times a day. My hands are rubbish, there are many things I have trouble with, for eg, handwriting is impossible and eating often has its own challenges. I have cognitive problems, constant fatigue and significant bowel and bladder problems.
Since I can’t take Tecfidera (lymphocyte count), Tysabri (liver enzymes), Avonex (cognitive trouble), or Copaxone (relapses), I think I’m out of DMD options. Given all the drugs I’ve tried, I don’t think anything else is a good idea, and even without the liver and lymphocyte issues, I’ve already had auto-immune thyroid disease so that rules Lemtrada out too. And I suspect that being out of options will make my neuro change his mind and decide I am SP.
But the point is, how does a neurologist decide whether MS is progressive or not? It’s not like I have frequent relapses and lots of remission, I have times when a symptom is worse than usual, but I don’t tend to get new symptoms. And my last definitive relapse where there were major new problems and from which I had a lot of remission was more than 4 years ago. I asked last time I saw my neuro and he said there was some activity on the MRI. My most recent MRI prompted a letter in which he said there didn’t seem to be much change.
I have an appointment in a couple of weeks and at that point I’m hoping for some answers to these questions.
I have absolutely no idea why you’ve had relapse after relapse and yet no DMD. I seem to be the reverse. Maybe we should swap neurologists?
Sue
Hi,
i was diagnosed as SPMS 2 years ago and then went to see a new neuro who said RRMS. Went from running marathons in 2013 to walking with a stick with foot drop, spasticity and weakness. My ms was active and I have not really recovered from relapses affecting mobility but do recover from eye issues (optic neuritis in 2014). I am a 4.5 on the edss. My ms was very active and I was having clinical relapses but this was not showing up on MRI scans. Think I am in that ‘grey area’ between the two. Am 37 and was only diagnosed in 2014 but the he reckons I have had it a lot longer as I had optic neuritis in my early twenties plus other things which I never really classed as MS.
Anyway i I had lemtrada in January. It went well and for the first few weeks felt great. The neuro wanted me to have it as I don’t have too many lesions in my brain they are on my spinal cord. I then felt a bit rubbish but have started to perk up again. No improvement in physical symptoms (in fact spasticity and clonus is worse) but not relapsed but feel great mentally.
I work full time as a teacher and can survive the day well, have 3 kids and I was a disability athlete but can no longer run (could run 100 and 200 metres last year).
I am so happy I had lemtrada as I have been so stable (touch wood). I am meant to take baclofen for spasticity but I can’t tolerate it. In fact if anyone knows a good drug for spasticity and clonus that they have had success with I would love to hear your experiences!!
Feel free to inbox or ask me any other questions.
Shurrell
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Shurell sounds like an ideal candidate for Lemtrada (having fast acting MS, but only diagnosed two years ago). People with SPMS do not do so well on it. Here’s a quote from a paper on the subject (Lemtrada is called Campath in this quote):
“Patients with SPMS (on Campath) showed sustained accumulation of disability due to uncontrolled progression marked by unrelenting cerebral atrophy, attributable to ongoing axonal loss. The rate of cerebral atrophy was greatest in patients with established cerebral atrophy and highest inflammatory lesion burden before treatment. In contrast, patients with RR disease showed an impressive reduction in disability at 6 months after Campath-1H (by a mean of 1.2 EDSS points) perhaps owing to a suppression of on-going inflammation in these patients with unusually active disease.”
This is from J Neurol. 2006 Jan;253(1):98-108. Epub 2005 Jul 27: The window of therapeutic opportunity in multiple sclerosis: evidence from monoclonal antibody therapy.
I know people are getting bored with me banging the Cladribine drum but I’m going to do it again anyway. Here’s the link to the blogspot post suggesting that Cladribine works for people with SPMS, as well as for RRMS. I’m waiting for it to work for me (had my second dose last week).
http://multiple-sclerosis-research.blogspot.com/2016/01/suppose-there-was-therapy-for-all.html