Hello! I am curious if anyone here is on Clamestine or has their doctor mentioned it. I cannot find much information on it. I wonder how you feel taking this medication do you feel it doing anything for you? Thanks!
Hi,
I have taken clemastine for over 6 months, my own decision but I checked with neurologist to make sure he thought it was a good idea before I started.
It’s over the counter in principle but very hard to get hold of so let me know if you find a reliable source.
I felt the drug was safe given that it’s a longstanding, well-established antihistamine cleared for use over the counter. I checked the patient leaflet/online guidelines for side effects/contraindications/drug conflicts. I think it’s also really important to get a green light from a doctor who knows your medical history before self-prescribing.
As far as my MS goes, it had no effect on symptoms to date, but then my symptoms are minimal. Due to difficulties obtaining it I took a low dose (2g/day). No side effects except in the early days when it helped me get to sleep. Note that one of the clinical trials in the US using clemastine seems to have been suspended recently due to a safety concern. Really surprising, but for that reason I have temporarily halted until I can check again with neurologist that it is still a sensible option.
1 Like
How interesting - I had never heard of this. Here’s what the MS Society has to say about it on the main part of this site.
1 Like
I’m going to guess that you’re not residing in the states? I don’t think a single doctor would be ok with a patient taking medication that they didn’t prescribe. I heard that Germany is a good place to get it from?
I’m actually hoping to get on a clinical trial for Clamestine soon. I haven’t heard of it being cancelled I’m going to look more into it!
See that’s what I’m curious about also. I consider my symptoms to be minimal also the occasional numbness in my feet. My left hand has been the most impacted by MS. But no brain fog, no cognitive issues or spasticity. Thankfully I’m doing okay and I’m also no on medication. But I want to have my options open or at least start looking.
If you don’t mind me asking were you on other medication prior? Or do you plan on restarting Clamestine, or anything different?
Also, maybe look into Choline. I found a video on TikTok of a women who went to a convention and learned that choline is a neurotransmitter that gets depleted by antihistamines 
so maybe MSers are low as it is?
My first priority when I learned that I had MS was to get myself on a higher efficacy DMT. This is not because I have lots of symptoms - mine are minimal, too. I am on a DMT in order to improve my health in 10 or 20 years time because the evidence now seems to show that using a highly effective DMT early on improves long term outcomes. Like with cancer, you don’t just sit around saying, well, it’s just a little tumour for now!
I think it’s also important to be careful where we get information. What is a reliable source? NHS websites in the UK (reliable but a bit simplistic sometimes). MS Society in the UK or its US equivalent. Articles or blogs by neurologists specialising in MS - you can check they are registered to practice with the relevant national medical body eg GMC in the UK - and beware the potential for “mavericks” even within a profession. And definitely not people trying to sell stuff!
On this basis I don’t look at Tiktok - I don’t do social media anyway, I wouldn’t know whether to trust what I saw and I’m wary of going down rabbit holes.
So in a nutshell: first port of call is my own neurologist and anything I see recommended online, I check it with him. And the first priority is to take up treatment that has proved safe and effective in clinical trials and been authorised accordingly.
My memory of the US trial on clemastine was that it had been suspended rather than cancelled. But I only saw a press release, not a proper report, so I know very little about it - haven’t had time to check further. But if you can get onto a trial with clemastine, I can see the sense in doing that.
1 Like
Amen to that. Getting on the most effective DMD available to you is top priority, I think, for those with RRMS. That and doing the lifestyle things necessary to look after cardio-metabolic health (and therefore support brain health). Once those are squared away, then you consider other things.