Today I’m posting lists gleaned from the Times supplement on MS published on Monday.
Here is a list of drugs licensed for other diseases that have been shown in Phase II trials to reduce progression in people with SPMS. The first drug is given at the standard dose and I assume the second and third are too. The fourth drug is given at a higher than normal dose, which I have given below. The doctors still have to complete Phase III trials on these drugs but they have already shown to be safe to take. So if you have SPMS, you might want to persuade your neuro to start you on one of these - what have you got to lose?
I was firmly under the impression that these 4 drugs are about to be trialled for effectiveness with progressive MS (PPMS or SPMS) and their value was still a long way from being decided ??
With that in mind, would a neuro even suggest them yet ?
(I put my name forward for trials ages ago, and have only received one ‘holding’ email so far to say that the trials haven’t started yet …8 months on !!! Bloody good job MS isn’t a terminal disease and there appears to no hurry!!)
As ever, would welcome any other feedback or correction if my understanding is mistaken ?
Liamsquash is correct. There is no proof YET that these drugs slow progression. Even the simvastin is not fully approved as the dose suggested is much higher than levels prescribed for the original use of lowering cholesterol. The SMART trial to trial the other three drugs is still in recruitment stage. It is already at Stage 3 trials only because they have a proven safety profile, as they have been used for other medical conditions but not for MS conditions. As such neurologists will not prescribe any of these drugs for progressive ms until there is a successful trial outcome. Check out the website for the SMART trial for more information. There are people still trying to gain access to approved treatments. Getting access to unproved treatments is just not going to happen (if you are lucky, maybe the statins but plenty of neurologists are of the opinion that at such high doses they can create other problems of their own)
It is not true that neurologists will not prescribe unproven drugs. My neurologist has prescribed two of these drugs to me (tried one, then thought another sounded better so changed to that). The reason he did this is because these are old, safe drugs that are unlikely to do anyone with progressive MS any harm and these drugs might do them lots of good. The Phase II trial of Simvastatin suggested it might reduce progression by 40%.
Ginsozzled and Liamsquash are right that there is no proof YET that these drugs slow progression. It may be that you (or your neurologist) would prefer to wait three years, or more, before you take one of these drugs, at which point you will be sure it is going to do you good. I prefer to take one hoping that it will slow the progression of my disease and knowing that it is unlikely to do me any harm (even though I already take a cocktail of drugs).
There is a decision to be made about these drugs for every person with progressive MS. For each of us, there are different things we take into account when we make our decisions. It is still true that there are no drugs proven to slow down progressive MS. It is no longer true that there are no drugs that might help people with progressive MS.
Surely the neuro has to make the initial decision ?
(…I know MY neuro would never prescribe anything I suggested at all, without his own recognition and approval beforehand ! I’m sure it’s the same for many others ?)
They’re all different I suppose - mine is a very empowering neuro. Generally he suggests drugs and I say yes. In this case I saw the piece about Simvastatin in MS Matters, took it in to sow him, asked for the drug and he said yes.
To answer question about Fampyra: my walking is worse but not as bad as before I started on Fampyra. On the upside, my bladder is now pretty much like a normal person’s bladder! I haven’t even taken the Regurin for the last couple of days and I can still negotiate round the bags and shoes my children leave on the floor outside the loo, shout at them for doing that AND get to the loo without wetting myself. Happy days!
Sorry about the conversation I seem to be having with myself here, but just wanted to say two more things. First, I meant ‘show’ not ‘sow’ in my third to last post. Second, I just read the summary of the article in the Lancet about high dose Simvastatin and SPMS. The difference in brain shrinkage between the SPMSers on Simvastatin and the placebo was 43 percent, over ONE year. I rest my case.