Good morning all. I’ve just received the letter from my neuro confirming that I’m now SPMS. No surprises and this was discussed when I saw him last summer and at my consultation about a month ago.
He suggested that I would be a good candidate for the MS-STAT2 clinical trial of statins. I did email him after my last consultation asking whether I could not just go on the statins anyway rather than be on the trial - where I might not actually get the drug, but a ‘dummy’ one. I’ve seen that some people have been put on high dose statins by their neuros, presumably when preliminary results about their efficacy came out. I haven’t had a reply from him yet and haven’t chased it.
I received an application from the hospital about going on the trial, but didn’t do anything with it as I was undecided.
Part of me thinks that I should apply for the trial - the neuro said that the care and checks are very good on these - and be a bit altruistic, but the other part thinks that I should just be self-interested and push to go on the statins anyway.
Maybe it’s because you’re SPMS and I’m PPMS but my Neuro put me on 80mg not long after I’d received the MS diagnosis. “For future health benefits”. Thankfully no side effects at all.
I assume the trial is for SPMS clients only, I don’t know whether a trial was ever done for PPMS but I suppose it must have been. I wonder how long the trial is i.e. when will statins be ‘released’ to all SPMSers as a matter of course. As you’ve got some extremely relevant questions I feel it’s worth a further chat with your Neuro to aid your decision.
The dx of SPMS is flawed - yes, parts of us may be going downhill, other parts may dip and then recover whilst some parts are unaffected. Regards statins - I’ve been on statins for years - not to do with m.s. - problem is there is no way of knowing if I would be ‘worse’ if I hadn’t taken them. Would be interesting to know how your neuro is going to assess the trial. to be a bit cynical - have any tests/trials ever come to a definite conclusion?
The trouble is that without blind trials we have no idea whether drugs are any good or not. And the number of drugs we all depend on have been through double blind trials. So some people have to take part in the trials.
Meanwhile, being selfish, or just self-interested, I’d rather know I was on the drug so could benefit from any positive effects (and let’s face it, the positives from statins are about reducing brain shrinkage and thus cognitive decline).
Also, I took Simvastatin recently for about 6 weeks (not as part of a trial, just on the advice of my neurologist - I wasn’t offered participation in a trial so I thankfully didn’t have to make that judgement call), and found it made my legs extremely weak. Which I can’t afford because I’m immobile enough. So I stopped taking the statin.
It’s really a decision only you can make. No one would blame you for wanting to know you’re on the real drug.
In terms of releasing the drugs for all people with SPMS, they are available already (assuming the drug trial is for Simvastatin). That’s how I managed to get them and I’m SP.
And Krakowian, I think the descriptions of RR and SP are both flawed. But in some respects they are still useful. There is definitely an argument to change the description to Advanced MS when a particular person fits that description. The way in which I (cynically) think SP is useful is actually not related to medical care at all; its to do with the DWP. They understand the word progressive and thinks this is automatically worse than RR.
Forgot I’d posted this (MS brain). I received a reply via the neuro’s secretary saying that if I wanted the statins anyway I should ask my GP - provided that I was in a category where I needed them for something else other than MS ( high cholesterol.) I don’t have cholesterol problems. Anyway I couldn’t be bothered to argue the toss and thought I might as well complete the application for the trial and send it back.
The MS clinical trials dose is way higher than the high cholesterol dose anyway, so probably as well to participate in the clinical trial.
I don’t know if this applies to all clinical trials, but the one I was on (Fampyra) meant you definitely got the real thing once the clinical trial period had ended - so I had six months on the clinical trial, where I didn’t know if I was taking a placebo or not - and then the real thing since then - I think it’s usual to do that unless the drug just fails the clinical trial altogether.
Just ask at the initial pre-trial screening (if they don’t beat you to it and bring the subject up themselves!)