Last reply 2 months ago
Antihistamines helping MS

Hi

I am sure there will be a discussion on here about the new treatment regarding antihistamines helping repairing the damage to the myelin. I got some of these antihistamines to try (from a friend who works in a chemist)
The thing is I actually think these are working and I am not taking anywhere near the amount recommended in the study.
But the question I have is I am seeing my neurologist next month and would like him to support my use of these and prescribe and monitor my progress. How do I get my neurologist to agree to this?
Thanks

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lm12463
10 months ago

nutshell88
10 months ago

Hi
I’m saudi I’ve seen saudi neuros syrian australian american and scottish too. All agree on one thing i completely disagreed with which is continuingon MS treatments for life and I’ve never took them.
We MS patients must have our own word decide based on how our bodies feel not based on neuro books. I’ll give this a try too and see. Thanks for the thread and i apology for over reacting. X be safe


stumbler
10 months ago

@lm12463 , if you do a forum search, magnifying glass towards the top left, and search for “Clemastine”, you’ll find earlier discussions.

I’m not sure that your Neuro will be best pleased with you for “flying solo”. They do like to see a full set of clinical trials data and have the approval of NICE before they contemplate anything new.

Although, some Neuros are proactive and may be positive about it.

Keep in view the Placebo Effect. 😉


dougiecro
10 months ago

just read the Lancet article regards Clemastine Fumarate, and it was quite promising, how would you go about giving it a trial, are there any reviews from MS patients as to how it has worked/not worked


weaveroflight
10 months ago

Antihistamines help me so much. When I forget to take them I notice. I also have migraines and allergies too.


arknat
10 months ago

It’ll be helpful/useful to know if the clemastine fumarate has helped anyone around here particularly in areas other than the ones that has been studied recently (optic nerve conduction speeds). I’m wondering if they are looking into the possibility of it remylenating spinal cord lesions ?


mermaidia11
10 months ago

It’s interesting isn’t it ? I have just started taking it, so early days !
Sleep and sensory disturbances improved a little so far.
The placebo effect is indeed a consideration, but this is a medication that has evidence and research to back it up, hence why it has been looked at more closely.
Nutshell we don’t know better than neurologists and do therefore have to be guided by them.
However, we should also be given the choice to try inexpensive, non toxic Medicines that have demonstrated benefits, if we believe it can help and have evidence to back it up.
Any dr worth their salt, won’t say no discussing and considering this with you.
I bought Tavegil (it’s brand name) from an online pharmacy and am giving it a go. My GP is thrilled I’m researching and trying these things and supports me in my quest to find something that helps me.
The ‘have you tried gapapentin/pregablin/baclofen mantra was wearing a bit thin for us both in my circumstance
But I’m not on any DMDs and we are all different
Good luck!


suebear
10 months ago

I take antihistamines to combat Tecfidera hot flushes – I was taking one a day summer & winter anyway as I thought i had a dust allergy (sniffy nose) and they really helped! Now I just time them to impact my hot flush – had no idea they might help with my symptoms also – I take Cetirixine 10mg, my neurologist is aware I take them and expresses no opinion. @lm12463 what are you taking?


rachaellouise
10 months ago

Hi @lm12463

How much are you taking please ? This is exciting news … I am taking the pregablin at the moment but it’s not working as I have hot burning leg and foot that is waking me up in the night.

Ms sucks – I’m a newbie with ms and it sucks ! I have had to cut my holiday short . Haven’t been away for ages but think I’m off to the relapse clinic this week…

What positive impacts are those tablets having on you ? And how much are you all taking ?

Rachael x


rachaellouise
10 months ago

@lm12463 – it depends on your neurologist but mine won’t prescribe it because it hasn’t been passed due to not enough research so mine won’t pass it . They just say no … I think mine only likes to pass things that have the seal of approval. You may be able to keep buying it yourself though but I don’t think most will put it on prescription . It is doable to get it just lots of faffing about to get it and you might have to use friends to buy boxes for you so you can take some each day. I would not try the trial amount myself but you could start with one or two and see how you go on .


lm12463
10 months ago

Hi

I started with one at night to see how it went. And even one made me drowsy. After about a week I wasn’t feeling drowsy. So I increased it to two at night before bed. It’s hard to be sure as i have 2 young children who have been up through the night recently. But i think it’s harder to get up in the morning as I feel much more tired. But I try to take the antihisamines about 9pm to prevent this too much.

Honestly I didn’t think I would notice a difference and wasnt looking for a difference. But i definitely see a difference in my left eye (ON over a year ago but left with the washed out colour) this seems to have got better over the last few weeks. This is something I just lived with so hadn’t realised it was better till I actually checked.

But what I did become aware of was the improvement in my memory again and general cognitive function. I wasn’t asking peole at work for words as much. And I was starting to remind them of thing they had forgot! It could all be a coincidence but I’m not sure. I have my neurologist on the 7th so I can let you know what he says. I’m not sure about telling him I got hold of the tablets. But maybe that i want to try them.


lm12463
10 months ago

Oh and my neurologist last said he didn’t want me on any dmd. So all I take is some herbal supplements and 2 of these antihistamines at night.


rachaellouise
10 months ago

@lm12463
– hi. It sounds very interesting . I might give mine a try. How long will you keep them go for?

I’m not in treatment either . What reason did he say he didn’t want you on treatment?
Because I am new to ms (July 2017) he said if I have a second relapse then might look into treatments.
What herbal supplements do you take ? I take echinacea and sometimes milk thistle. I have seen a Medical herbalist the other week and they gave me a potion of say 6 different herbs.
I know one is tumeric as it is very anti inflammatory . You put a teaspoon in a glass of cold or warm water 3 times a day and drink it.
Hope it helps me.

Rachael X


us-emma
10 months ago

I have been on this since starting Lemtrada in April 2014.

At that time I was 10 years into my diagnosis and had lost my primary career and gained many deficits due to MS.

Post Lemtrada and starting Clemastine 2.68mg (2 tabs in pm and 1 in AM- referenced study dose would be 2 tabs twice daily), I experienced a true improvement in my MS symptoms overall- due primarily to the Lemtrada I believe, but I was also remyinating with Clemastine concurrently.

I wish Lemtrada or stem cell transplant (HSCT) had been an option when I was diagnosed in 2003, age 29- what a different life I would have- to halt MS right there, but I am lucky to have gotten it when I did and enjoy my improvements to this day.

My first year after Lemtrada dose 1 was blogged at Lemtrada.blogspot.com but I have not updated it since 2015 so some information there might be outdated, or not currently how it is being followed- but my experience in improvement might be of interest. I also did write about Clemastine back then too on the blog.

If you are young, healthy and have few MS symptoms I strongly urge you to consider Lemtrada or HSCT. The damage from MS is permanent and just gets progressively worse. While I did improve considerably, Lemtrada did not wipe away 10+ years of MS damage. Don’t wait to worsen, advocate for your future.

I don’t mean to offend anyone who has chosen a different path- I just feel strongly that MS ‘robs us’ of our abilities at too young an age. I chose to fight back with all my might.

Blessings,
Emma


us-emma
10 months ago

Clemastine is available without a Rx in the US but more than quadrupled in price after this study was published. It went from an old unused drug (less that $3 for a month’s supply) that was dirt cheap to very expensive therapy (like $90/mo- I guess that is way more that quadrupled).

For those in the US, ask for an Rx. Your copay (mine is $0) will be much less than the over-the-counter price.

If it is OTC in your country I can’t see why they would limit your quantity- as the drug has few side effects other than drowsiness- this was a common side effect for early antihistamines until advances were made to inhibit histamine by newer drugs.

For those on a different antihistamine for other reasons (allergies chief among them), ask to switch to Clemastine if you can tolerate the drowsiness. I have long suffered from insomnia related to MS and so the side effect works for me- at least in the nighttime dose.

Be happy & healthy,
Emma


us-emma
10 months ago

sevenup
2 months ago

Hi just wondering if anyone on this thread has an update? Some of the messages are from 8 months ago wondering if improvements continued.


stumbler
2 months ago

@sevenup , this is the latest “official” update from back in October:-

https://www.medicalnewstoday.com/articles/319732.php

The final paragraph of this article, which starts, “There is still a long path ahead, but the results are encouraging…………”, bring us back down to earth, unfortunately.


sevenup
2 months ago

Thank you Stumbler for the link


dvtrv
2 months ago

I’ve always believed that my positive outlook on everything and Tysabri for the last 7 years has kept me away from, pain, spasms, extreme fatigue and such, that so many other MS sufferers speak of.

Maybe because I’ve been on antihistamines most my life as have hay fever and am allergic to dust is also I factor for my dodging capabilities, who knows.

Just saying.

Makes you think doesn’t it?


dvtrv
2 months ago

I currently am on Fexofenadine btw


ianh
2 months ago

I had taken Cetirizine (aka Zirtec) particularly during the summer as I get hayfever. It is also useful when visiting friends who have cats, and that’s another sensitivity that I have. However, when I started injecting Rebif, I also got small injection site reactions – pale pink bruises about 2″ in diameter. These could be quite itchy. Not painful or tender, just annoyingly itchy. The Merck website suggested over the counter antihistamine. When came the time for my normal summer Cetirizine dosage to start, over about the next couple of weeks, the itchy blotches also stopped.

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