tabbycat 13/12/14
Last reply 3 years ago
RR to progressive ?

I am due to see my neuro soon . I have been diagnosed as relapsing remitting, but have not had a relapse for two years. During that time lots have things ( walking distance, balance, spassicity of muscles etc) have got slowly, but noticeably worse. I think I have had Ms for at least 12 years and am worried I am now progressive. If I am diagnosised as progressive I could loose my prescription for gylenia , as it seems there is no treatment for progressive.
My question is this, should I lie about my gradually worsening symptoms, as I can see no advantage at all to being diagnosised as progressive?
Any advice folks?

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3 years ago

I’m exactly the same as you it sounds,, but really if the treatment isn’t helping us do we really need it? Or is the thought of not getting anything just a problem in our head?? Makes you think.

3 years ago

I’m lost. So you don’t have relapses yet that’s seen as a bad thing ?

3 years ago

Having a different name for your condition does not make much difference to your body and what your body is doing.

If you’re no longer relapsing/remitting, then there is no need to take medication like Gilenya. Unless the reason for no relapses is the Gilenya!

It’s best to be honest with the Neuro, so that they make decisions based on correct records.

If it is suggested that you are now SPMS, then you’d be within your rights to question whether the lack of relapses is down to Gilenya and would stopping it provoke a relapse! Ask what tests they will perform to justify their diagnosis, e.g. an MRI scan.

3 years ago

Hi @naim. I think the point is no actual relapses that suddenly knock you off your feet, just a steady decline, From say walking ok ish, to struggling to get across the room, in a year. And no improvement. ??

3 years ago

Thanks for the advice folks. That is the dilemma , if it the gylinea stooping the relapses then I want to keep it, but if I don’t need it, it will solve a huge extra problem that I am about to face when I have to give up my health insurance in May.
Even if I insist on another MRI, that can’t really tell if you are RR or progressive can it? I guess honesty is the best policy, but I am also worried that if I am labelled progressive then they won’t let me try any of the new drugs as they come out and I am still hopeful that there is going to be some real medical break through soon and I want to be there!!

3 years ago

Sorry to hear of your situation @tabbycat, you may be interested to know that results from the recently concluded Novartis INFORMS trails for Fingolimod/Gilenya showed it has no significant effect on PPMS. Admittedly, no one can say that SPms and PPms are not the results of the same nerve degeneration process, and I became sceptical about Fingo for P/PMS when I learned it is mostly effective in ‘highly active’ RRMS.

As for yOur present situation, bear in mind that all drugs have side-effects and you are risking having more side-effect than effect at the moment,
The only small consolation in this, and it is a small consolation, is that they’ve yet to work out what actually causes the progressive phase/ side of MS , as Dr Amit Bar-Or explains:

And anything that allows room for the possibility that the immune system isnt hell bent on attacking our nerves makes me rest a little easier (placebo effect?) – it may go against the dominant theory, but the dominant theory isnt taking PPMSers/PMSers very far.

Good luck

You sound very much like me. Diagnosed for 5 years but think i’ve had it for about 12 now. It definitely was RR but has been put under the SP category now. The reason they moved me was the same as you… relapses but gradual increase in disability. I have never had any DMT’s.

It may be your Gilenya….you never know! Good luck.

As people have said, it’s just a label!

3 years ago

Thanks folks, I wish labels didn’t matter. I watched all the links suggested and knowing the biology of progressive is different to RR, somehow makes knowing which I am more important. What a wired and complicated monster ms is.

3 years ago

Gilenya is pretty effective at stopping the active inflammation. You won’t know if it’s helping until you stop taking it and see if disease activity returns (relapses and/or sub-clinical brain or spine lesions), but I don’t think that you would want to do that. Talk to your MS team (get an MS team). However you can, don’t give up your health insurance. The neurodegeneration that happens in the absence of active inflammation is the other thing that we as patients are concerned about. Nothing is approved for neuroprotection, lots of studies for progressive MS have failed. Just designing a study to measure progression for progressive MS in a reasonable amount of time is difficult. Clinical trials in progressive types of MS are ongoing, but nothing is close to a solution as far as I know. A phase 2 study hinted that simvastatin (off-patent and super cheap) could slow down progression, but there won’t be a follow-up study anytime soon. There is a lot that we don’t know about the biology of MS, immunology and neurology. There is still controversy over the cause of MS, whether there is a infectious agent that triggers it, whether treating T-cells or B-cells is better, whether remyelination strategies will help ….

I think that it’s probable that a mix of active inflammation (lesions & relapses) and neurodegeneration (atrophy) are present in MS patients. Eventually the relapses stop, but the progression continues. The difference between RR, SPMS & “benign MS” may just be differences in the relative rates of these two processes.

We have fairly successful drugs for preventing relapses but not for preventing progression. Maybe a “Dallas Buyer’s Club” approach to this problem is called for. I am curious to find out if anyone is trying this? Best wishes to all.

3 years ago

Hi @tabbycat

I watched this documentary on youtube the other week about a British Aljazeera TV reporter who has MS. The documentary is about MS in general and the show follows her on a visit to her neurologist in London. The reporter fears that she will get the news that after 17 years of living with MS (without any meds) that she will fall into the category of now being secondary progressive.

The programme is about an hour long and the bit where she visits her neuro is at about 38 minutes. I’d say that it is worth a watch.


3 years ago


After 12 years of RRMS I am now reclassified as SPMS. I have been taken off Copaxone which was initially worrying.

I have had a few weeks to think about it. At least no more needles and I am still me.

I have been made aware of a SPMS trial starting in my area that my neuro wants me to consider.

Maybe drugs for SPMS are quite close by.



3 years ago

@tabbycat. I watched it was interesting seeing someone else having same problem getting in the car. Lol. But what was that pill. They didn’t say the name of it,, I wanted to see her 4/6 months later see if it helped??

3 years ago

that film was fantastic .
The pill was definitely gylinea ( fingolimod) because I went through exactly the same 6 hours of heart monitoring when you take the first pill and just like the reporter my heart beat went down a lot and then was fine, and has continued absolutely fine ever since.
The only thing I don’t understand is why did she wait so long to start a DMD ?
Her findings on vitamin d and on possible stem cell cures are all very relevant.
Like her, I also have family members with other autoimmune diseases and I wonder how linked they all are and what genetic propensity could be investigated there in future?
thanks for all your input folks- this is a really valuable place!

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