Symptoms improving after starting on Metformin and Clemastine

I wanted to let everyone know about some very exciting research for older people with MS and the improvements I have seen since starting on the drugs being researched (Metformin and Clemastine).

The MS Society organised the lecture which is shown here Watch: Stop MS - Research Lecture 2018 - Professor Robin Franklin - YouTube as part of their Stop MS Campaign (the important bit is after 33:33 but it’s harder to understand if you don’t watch from the beginning). After I watched it, I asked my neurologist if I could start on Metformin and Clemastine. He was actually at the lecture and he agreed.

I’ve only been on the drugs for two weeks but in the last few days, I’ve been able to walk upstairs again (had only done that very occasionally in the last three months. I can get my own legs into bed. I’m walking with a frame first thing in the morning, rather than using a wheelchair.

To plenty of you, these may sound very small improvements. But they are making a huge difference to me. Even bigger for me is the fact that my walking is getting better, rather than worse - that hasn’t happened for years (in the past there’s pretty much been a slower or faster decline in my walking). That’s what is making me think that this is an effect of the Metformin and Clemastine.

I don’t know if anyone else watched this lecture and asked for these (very common, very cheap) drugs. I’m on 1,000 mg a day of Metformin and 8mg a day of Clemastine. These are high doses but I’m not seeing much in the way of side effects (may be sleeping a bit more because of the Clemastine).

Is anyone else trying this and what do people think?

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Absolutely fascinating. Wonderful to hear the experts and all the work they’re doing. May I ask what form of MS you have as in my ignorance it seems to be aimed at SPMS - or is it PPMS too. Would love to know where your Neuro is based (moderators don’t seem to permit names of Neuros being posted!). If you would prefer to PM feel free!

Thrilled that you’ve had improvements which to me sound amazing.

Tippy x

This is for any type of MS, because the processes that are going on at the cell level are the same in RRMS, SPMS and in PPMS.

My neuro is at the National Hospital for Neurology and Neuroscience, at Queens Square in the centre of London. I changed to him because my local MS neuro was truly terrible. I’ll PM his name to you.

Sewingchick: I’m at Queen Square too and would be interested to know who your neurologist is. I go to a very good one there (Antipodean) but not due to see him again until November and I’d like to chase up if they are doing something with Metformin and Clemastine. Last time I saw him in February I think I mentioned Clemastine and he didn’t seem that interested. He seemed keener on me doing a trial with statins but nothing has come of that yet.

He confirmed that I’m now SPMS. I’ll be 66 in a couple of weeks. Sounds like I could tick a few boxes if I make a nuisance of myself there…please PM me! Thanks!

Louise

Hello,

Just happened on these threads. I am now SPMS had speedy deterioration since being DX 2012 after NMRI (Nuclear magnetic resonance imaging) I say Nuclear cos my clever son has a Chemistry BSc and that’s the true Chemical terminology. Sorry if I scared any folk! I’d be very interested to know more on halting progression. The particular consultant in Queens sqr, London?

Thanks,

Fi

Hi Sewing chick I have been on metformin for a few years now as a treatment for diabeties2, I think 600 ml. Is it important to take the Clemastine with it to get the benefit you are talking about?

I took Clemastine for 6 months and had some improvement. I was taking 8mg a day. The spasticity in my right hand improved making typing and using a mouse easier. The improvements were modest but were enough to make a difference.

Sewingchick, are you still taking Metformin and Clemastine? How is it going?

Hi, for some reason my PM to you failed. I am interested to know if you are still on the treatment and how you are doing? Thanks, Debbie du Toit

Absolutely fascinating. I’ve been on metformin for about a year (type 2 diabetic) 1000 milligrams for the last 9 months I can’t say my symptoms are any different so suspect that the combination of two drugs could be responsible for any improvement folks are experiencing. If this is the case, hopefully clemastine is nice and cheap like metformin is or we could find that those nice people at NICE won’t want to allow it for most of us!

incidently I think the metformin has helped me loose weight, I’ve still got a long way to go and resemble an ancient fertility doll, but my blood sugar is well below normal! So what’s to loose, reductions on everything! Fantastic!

Hi, I tried metformin for about 7 months, finished recently on average 425mg a day with no effect at all and decided not to purchase anymore 850mg tabs. At one point I thought it helped me with being a little less lethargic in the morning, but nothing proved.

Hello MS family. Just wondering if anyone was taking clemastine/tavegil only to go cold turkey as none available in the UK? I APPEAR TO HAve developed sharp windpipe and cough only . Amazing team at queen’s sq.
uare

Sorry… Cough only at night plus busy legs back again. Do you think it may be possible withdrawal? Just wondered if people in the UUK experienced similar due to the lack of availability? Seeing UCLH thus week. Thanks all, wish you well

Hi I’m new to this forum but noticed your message, I hope the tablets are still working for you. The symptoms you describe sound very similar to mine, my ms really only effects my walking and I cannot stand unaided. Use a wheelchair or scooter but try to use my frame to get some practise with walking.

Hi, thanks for your message. We’re you on clemestine too?