Common Allergy Treatment Restores Protective Neuron Coating in MS, Trial Suggests
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Scientists have been trying to find a way to restore a protective covering around nerve cells whose loss leads to the neuron damage associated with multiple sclerosis.
A team at the University of California, San Francisco may have found a way to do it. And perhaps surprisingly, the possible solution is an over-the-counter allergy drug.
A Phase 2 clinical trial showed that the antihistamine clemastine fumarate helped people with a chronically damaged optic nerve. The therapy led to faster firing of patients’ vision neurons, according to a report in the journal The Lancet. It also slightly improved how well the patients could distinguish contrast.
While the effect was modest, researchers said the study proved that rejuvenation of the protective of the protective neuron coating — the protein myelin — can occur in those with even chronic nerve-cell damage. The findings are a starting point for the development of more effective treatments, they said.
“To the best of our knowledge, this is the first time a therapy has been able to reverse deficits caused by MS,” Dr. Ari Green, principal investigator of the trial, said in a press release. “It’s not a cure, but it’s a first step towards restoring brain function to the millions who are affected by this chronic, debilitating disease.”
The research team focused on vision damage In the Phase 2 ReBUILD trial (NCT02040298) for a simple reason: Vision is commonly affected in MS, and there are reliable ways to measure the speed of neurons in the brain that are linked to vision.
Their study was titled “Clemastine fumarate as a remyelinating therapy for multiple sclerosis (ReBUILD): a randomized, controlled, double-blind, crossover trial.”
How an allergy therapy ended up in the MS field
The team’s choice of compound was not random. Earlier screening of compounds approved for other diseases showed that clemastine fumarate activates oligodendrocyte progenitor cells. These are cells involved in producing and wrapping myelin around nerve cell axons, or long, slender projections of neurons.
Researchers confirmed this finding in lab-grown cells and animals with myelin damage before deciding to test it in patients with chronic neuron damage.
“People thought we were absolutely crazy to launch this trial, because they thought that only in newly diagnosed cases could a drug like this be effective,” said Dr. Jonah R. Chan, a Debbie and Andy Rachleff Distinguished Professor of Neurology at UC-San Francisco.
“Intuitively, if myelin damage is new, the chance of repair is strong,” said Chan, the study’s senior author. “In the patients in our trial the disease had gone on for years.” But “we still saw strong evidence of repair” with clemastine fumarate, he said.
Measuring neuron speed
The team recruited 50 patients with chronic damage to their optic nerve for their study. They used a cross-over design to improve its statistical power.
Participants were split into two groups. One received clemastine fumarate for 90 days and then a placebo for 60 days. The other received a placebo first and then the drug. Then the groups switched, and the procedure was repeated. Neither patients nor the physicians in the study knew which group patients belonged to.
To assess potential effects of the drug, researchers measured what is known as visual-evoked potentials, or how fast neurons that govern sight fire in response to changes in light.
They used scalp electrodes to measure signals in the part of the brain that oversees vision. This area is located in the back of the brain. In people with optic nerve damage, it takes longer for a nerve signal — a response to a flickering pattern on a screen — to travel between the eye and the back of the brain.
Researchers discovered that the speed of the signals was significantly improved in the group that started with clemastine fumarate. The effect persisted after the group was put on a placebo for two months, suggesting that the improved neuronal function was long-lasting.
The team also measured participants’ ability to detect changes in visual contrast. It improved after the treatment, but not enough to reach statistical significance.
Restoration of myelin is called remyelination. The team failed to prove it had occurred because “we still don’t have imaging methods that have been proven to be able to detect remyelination in humans,” Chan said.
But the team said myelin regeneration was the only plausible explanation for the results. That’s because it’s well-known that myelin speeds up nerve signals.
The first step
Although the results were noteworthy, the improvements were “modest and probably not of a clinically meaningful magnitude,” in the opinion of two researchers from the Cleveland Clinic and Case Western Reserve University School of Medicine. They also pointed out that it might be difficult to increase the dose of clemastine fumarate or the duration of treatment because of side effects.
The UC-San Francisco research team is not trying to claim that their study is the final solution to remyelination.
“This is the first step in a long process,” said Green, who is also a Debbie and Andy Rachleff Distinguished Professor of Neurology, chief of the university’s Division of Neuroinflammation and Glial Biology, and medical director of the UCSF Multiple Sclerosis and Neuroinflammation Center.
“By no means do we want to suggest that this is a cure-all,” he said. “We want to ground-truth myelination metrics. We’re designing the crucible that’s going to be used to test any future method for detecting remyelination.”
The researchers who wrote the commentary shared this opinion.
“Although clemastine fumarate probably is not the final answer to the search for repair-promoting drugs to treat multiple sclerosis, the ReBUILD trial represents a watershed milestone in that quest,” they wrote.
Deborah Elam
this actually makes me angry because they pulled Tavist (clemastine) off of the shelves. My guess is that this common OTC allergy medication will no longer be readily available... and that is horribly wrong!!!
Matt
http://www.allivet.com/p-5310-clemastine-fumarate-268-mg-100-tablets.aspx?sku=49600&gclid=EAIaIQobChMIsYvzkKTu1gIVUiSBCh2rhA2cEAQYASABEgKzZfD_BwE
Just saying.
MITCHELL
I haven't done any research, but by the sounds of it clemenstine fumarate has some negative side effects.
Glass Half Full
But they are all a lot better then PML!
Penelope
Yes, you beat me to it. I used to take the Tavist and can no longer find it. Very sad.
Paul
On line Walmart
Stephen
This happened to Aminopyradine when big pharma released Ampyra.
Lori
I get Aminopyradine as a compound drug from my local compounding pharmacy. Never knew it was previously OTC.
Donna Plouhar
What state do you live in. We can't get it anymore in Michigan.
Lynn Johnson
ampyra did nothing for me
Sue Richards
All that he did for me was make me feel like I was in a fog and it made me dizzy so I wasn’t sure how this was supposed to help me walk better because you certainly can’t walk if you’re dizzy and lightheaded and feel like you’ve had way too many cold medications!
Jim
Ive got MS in my spine,& have been in a wheelchair over 2 years. Ampyra did nothing for me either. I currently have taken Ocrevus. Still waiting to see any results.
Dave
How many treatments of Ocrevus have you had, Jim? I recently finished the second of the first 2. Have been in a wheelchair for about 7 years. Really would like not having to have one.
karl schneider
can't tell any difference
Becky B.
I get 4AP (aminopyradine) at a compounding pharmacy.
Becky B.
4AP helped tremendously with my walking at first, but stabilized after taking it for awhile. However, once when I ran out for awhile, I had adverse effects until I refilled the Rx. (It almost seemed as if I was going through “withdrawal”!0
Donna L Plouhar
Where do you get it from Michigan?
Spicy Mikey
Don't be too frustrated. The study itself said the results were modest and not clinically noteworthy. In other words, it was so minor that only sophisticated instruments could detect the difference. You or I would not notice a difference it seems. But it is indeed interesting.
Karyn Ellis
Agreed. It is at. Least a start in the Hopefully right direction
Donna
Go figure! This is infuriating but I knew it would happen. So unfair.
Vicki
It is available at the pharmacy...Walmart can order it for you..I get it as a prescription from my neurologist at my local pharmacy at my favorite grocery store. Do not give up...they order the 2.68 mg tablets for me!
A fellow MS patient
kit humphrey
how much do they charge you? What pharmacy fills it for you?
Pattie
I also get it from my local pharmacy through a prescription that I got from my neurologist. I was told that it was unlikely that my insurance would approve it but luckily they did and I started it about two weeks ago. I do also need it for hives so it’s good for both things.
Cindy Leonelli
Pattie, I'm trying to find this for my husband. I called the pharmacy and they pharmacist said they was not a drug like that listed. I can order it from the UK for $40 for 60 pills. Can you give me the brand name of your prescription and the cost? Thank so much in advance. Cindy
Gene
Yup I tried to find some and it's always unavailable at this time.
Ron D
I am using Ampyra, without it, I am weak, I take it twice daily. I am still weak on my left side, I use a crutch for balance and to compensate for drop foot. I am excited about finding the generic form of Tavist.
Debra Elam
Hello. I have been thinking about the possibilities of myelin regrowth and it is encouraging to hear that an OCT allergy med has positive reviews but very discouraging to hear I might not be able to get it. Sounds like the big pharmaceutical companies don't want this known. How shameful. But I hope things change for the better so that people with this illness will have something to look forward to. Oh,and I see we have the same name. Isn't that something???? Have a great day.
Colleen Burke
It’s available on Amazon. I’ve been taking it daily for two weeks since reading about this study. Hard to tell if there is any improvement but these things take time.
scott walker
I know this is risky, but I got 100 tablets from Japan on Ebay. It's still risky but it only cost $23.00. They are 1.34 mg.
Luke
Amazon...
I purchased three packages (16 tablets each box) and I now use this instead of Allegra D that I have been taking for many years.
You can still probably find this at CVS, Walmart but I can't find it at Walgreens so I went to Amazon and they have it under several brand names (all listing it an Clemastine Fumarate)...
Pattie
CVS special orders it for me.
Val
Clemastine is sold as Tavegil in Germany and is available without a prescription here. I'm not sure of your location, but you could probably find it online.
Ron D
I have located Tavist in generic form. Tavistlocator.com 713 352-9944
I paid $20 including shipping for a box of 8. I am happy and relived after 7 months and hundreds of phone call throughout the U.S.
Shaveta
Right creating a false shortage to up price
Jan
Exactly Shaveta
N22Tango
I have relapsing-remitting MS and when I read the news about this study last year, I started buying clemastine fumerate on Amazon. I had been on Allegra D for years due to allergies (I live on a ranch in Texas and pollens are everywhere) so I decided to simply switch to clemastine fumerate. It worked very well for my allergies and about three months later, I can’t find it on Amazon. Desperate, I did find it on eBay. I purchased a box BUT this product is made in India. I don’t have a lot of confidence in drugs made overseas.
It seems to me, that Teva (the company who makes Copacone which I was on for four years and HATED) has acquired the manufacturing rights.
Lisa
I got tavist through pay pal. That is generic
MG Jackson
My son has relapsing-remitting MS and has had it for 20 years. He has been wheelchair bound for four. He has been taking clemastine fumarate for about ten months. His vision has improved and he has had no side effects. He is on Ocrevus (four injections of that) and takes Low Dose Naltrexone (4.5 mg each evening.) He is gluten-free and uses a hybrid mix of dietary advice from Dr. Wahls and Dr. Perlmutter. He also takes Low Dose Naltrexone 4.5 mg each evening. When I read the press release from UC/SF about clemastine, I went on line, talked to pharmacists, etc, in my search for a source. Only way for us to get it was from a relative who is a large-animal veterinarian. CF is easily had for itchy dogs! (We do have itchy dogs!) So, son has been taking it since December 2017. My son has had his vision improve and has experienced no obvious side effects. I found out in my searching that there are only two factories in the USA that manufacture CF. If you can't find a veterinarian who is willing, a source in the UK or Germany would likely have good standards and be a good source. Also, the Japanese are very careful, too. Have you even asked your neurologist for it? Good luck!
Jan
They said it wasn't selling and the manufacturer quit making it but that's ridiculous. It was never promoted and was hidden at Walgreens behind a coupon dispenser. Of course they won't sell it as an antihistamine when they could charge thousands for an MS drug. Pharma bro. It's just evil. You can buy it on eBay or Amazon as they have it in India and Germany OTC. Depends on your ability to deal with the unknown. I have an Indian pack in front of me that I bought from someone in WI. I'm dealing with my anxiety now.
Arthur
It's readily available on Amazon
charles
the only thing that concerns me about getting on high dose clemastine is the anticholinergic effect. i already have some small difficulty from urinary retention. it's not serious, but if i take a bunch of clemastine, i may not be able to void my bladder at all. if it were compounded with another drug to counter that effect, then i would be less worried about it. i suppose that one could resort to a catheter...
bakebr
Clemastine is an antihistamine used to control itching in dogs, cats and other pets with atopy or other allergies. Common side effects include sedation and dry mouth. Contact your veterinarian if your pet experiences diarrhea, rapid heart rate, or inability to urinate while being treated with clemastine.
Sharon David
why are people trying to use it to fight the monster ms?
Liz
I appreciate your sharing of info. Last week I suffered from the most painful UTI ever. I'm a Lemtrada patient. Had my second dose a year ago. I credited the pain sensation to the treatment. Never felt pain sensation during previous UTIs.
Anway, I finished my antibiotics this past Sunday. However, I now suffer from urine retention and has to push down on my bladder to void.
I started Clemastine Flo yesterday. I suffer from Optic Neuritis and Nystagmus. So I was encouraged. Now reading about your urine retention I'm concerned
Megan
It probably isn't the "answer" because it is off patton. Also, the sife effects are sleepiness, compare that to PML, cancers, liver damage, heart problems and site reactions.
Also you can order it, stores just don't carry it anymore.
Anne Imelnut
It's available on line...I found some on Amazon!
Jumpy
Clemastine Is still available in some Generic named brands. Walmart can order it for you if they don't stock the right one or doesage in the store. My son was using it for about 6 months over a year ago and has not had a relapse or hot spot show up on his MRI Since.
I had found articles of this used on mice over 3 years ago. Glad there are some non profit motivated researchers looking at this. LDN is also helpful and Microbiotics are also proving to be a possible source of immune system problems/diseases.
Stephen
What is the recommended dosage
Pattie
2.68 mg twice a day.
C Arboleda
I just got my prescription filled by CVS pharmacy in Houston for clemastine 2.68 mg. They special ordered it.
Lisa
But some sources state that phase II trials of Clamestine Fumerate used 12 Mg per day. You may want to see if you can get more info on dosage.
Ruth
I have been taking Low dose Naltrexone since 2002. I came upon the link and my doctor called Dr. Bahri in New York. The reason I took it was I had such bad fatigue. I started at 3mg HCL Naltrexone to be taken after 9 PM and 1 AM. After one month and at a dose of 4.5mg fatigue was gone. There is a book titled The Promise of Low Dose Naltrexone Therapy. Studies are being done with Naltrexone in Cancer, Autoimmune, Neurological and Infectious Disorders. My Neurologist started to prescribe Naltrexone to his other patients. I was lucky to have an open minded specialist. I have given the book to other people I know with MS which they showed to the doctors. Sorry to say Big Pharma won. Just wish they were strong enough to see my specialist. It could have helped them. The only other drug I take is Baclofen for muscle spasms. I have been very lucky. God Bless.
Mary Carls
I have a sensitive liver. How does LDN affect the liver? I can't take any of the MS medicine out there because of my liver. Avonex just about destroyed my liver. Also Baclofen made me sleepy couldn't take it at work. But I found that CBD oil works great for spasticity and no side effects!
Rosie
what is cbd oil? where can i get this?
Hi Rosie,
Cbd, short for cannabidiol, oil is a type of cannabis oil that holds only trace amounts of the psychoactive substance of cannabis, called THC. You can read more about it if you search MS News Today for cbd oil or cannabis, or at:
https://www.medicalmarijuanainc.com/what-is-cbd-hemp-oil/
Laura Higgins
online you can get it. You can also get a lotion which can help with pain.
MsBS
I started LDN at 4.5mg. My neuro wasn't supportive and only prescribes with DMT. I can say last MRI no active lesions and no disease progression. My thyroid dosage has decreased 4x. Has never been this low in 44yrs!!
Type 1 diabetes 47yrs and very brittle, but now my glucose is more even and hit the target more often.
Lisa Melland
naltrexone did nothing for my fatigue. I take amantadine now, it has helped my fatigue alot
Q bennett
What dose has he been taking? Regular or higher?
Jack O'Hearn
D you know why was it pulled off the shelves? I have significant vision problems related to M.S. and I would have liked to see what my neurologist thought about me trying this over-the-counter treatment. I have seen a neurological ophthalmologist who said there was nothing that could be done. It sounds like this might be worth a try.
Katie
The pharmacist I talked to about it (because of course I couldn't find it on any shelves) said it had quite a few drug interactions. It is possible to order it online through places like Walmart, CVS, and Walgreens, and have it shipped to the store. They still make it, but don't stock it on shelves.
Carol Harding
I'm in the UK and get it for £22 per month from Dicksons chemist
C Arboleda
Hi Jack! Yes, you should definitely try clemastine. I just got my prescription filled by CVS pharmacy in Houston for 2.68 mg. They special ordered it. I’m taking two 2.68 mg, twice daily. I never had issues with my eyes, but did have numbness in my right half of my body. After 3 weeks of treatment the numbness is gone. I have RRMS.
Jane Morton
My husband has been ill for nineteen years with MS and we read these articles constantly but we have never been offered anything in terms of a modifying drug or to try a new drug. I think my husband feels very overlooked. It seems to be something we read about but they never seem to benefit real people.
Paula
Have you heard of HSCT! For MS of course
Cathy
Hi Jane! I’m Cathy, I’ve taken it for 3 weeks and my numbness is gone! I take two pills of clemastine 2.68 twice daily. That’s 10.72 mg a day. I also use Colpaxone. I have RRMS. Best of luck to your husband!
Eric Woodard
Why even talk about it this was in the news in 2012 and it came an went they continue to put out false hope for people the use the word cure but also say we can't say that I am so tired of false hope article they receive millions of dollars each year trying to find a treatment not a cure their is no profit in a cure we need to come together to create our own researchers who are working on a cure
Albert Matarazzo
I feel the same way Eric.
Arthur Leeper
Clemastine Fumarate was sold out for several months, while it still was available in the UK. It can also be found in Tavist tablets, which are a smaller and more costly dosage. Clemastine is available in the US again, through Kaiser and other providers.
It does have some side-effects, but it also has quite important positive effects. In my opinion it would be worth trying, with the knowledge and support of your Neurologist. They should know what dosage you are taking; 2.68 is the standard tablet size, and people are taking one tablet, one and a half, and two tablets in a Clinical Trial at UCSF, where Clemastine was first identified as a myelin repair candidate.
Until something else comes along (and people are looking like crazy) this is the best bet. Some people can't tolerate it, others can. It seems to vary considerably.
Arthur Leeper
My one suggestion to those who think they are being overlooked is to pay close attention to the work being done at UCSF (University of California San Francisco) Medical Center and by the Brigham and Women's Medical Center at Harvard University. People at both locations are working hard to try to find ways to halt... an reverse... the progression of MS. A large study is working to study the gut microbiome of 2,000 people with MS, in three countries. The initial data from some smaller sample groups is quite intriguing. There are good people, working hard to stop MS in its tracks, if they can. Getting into clinical trials is a key way that those with MS can support their work.
That and getting as much exercise as possible, to keep healthy in the meantime.
Merlin Leine
Has anyone trying this clemanstine formula haď any success with it? It has been around à while,someone should have some results by now.
Ed
Clemastine Furmate is very hard to find right now, only seems to be available in allergy, anti-itch pills for dogs.
The recall of certain allergy pills was because they contained phenylpropanolamine, or PPA, it has nothing to do with clemastine.
Jessics
It is available from veterinarians and it is safe for people. Also my PCP wrote me a script for it. I started taking it a week ago. I figure I’d take ANYTHING for the possibility of even small results results of any kind!!
Suzanne Pool
Jessica,
Have you had any results from taking Clemastine Furmate? You said you were going to try it in October of last year. Just wondering the effect if any. Thanks,
DT
has anyone else considered the "stemcell therapies" not FDA approved but for those with Progressive MS what else is there? I feel desperate!
ML
I had systemic stem cells last January. I have no idea if it helped. NSI Florida shows an ms patient walking and doing well! But I don’t think it is helping me. 3 neurologists wouldn’t even help me. Omg. I was and am on my own.
Shep
You can order it from Amazon and online, been using it for about a well or so but haven't noticed any change yet.
Steven J
There's a cure for all of these problems,there's no money in the cure. If they can fly tickets to the moon and back they can fix your ms, als, etc,etc.I wouldn't worries about the side effects so much that's the only way you can find some type of cure. What's the side effect of flying an airplane, crashing.
Matt
I’ve had MS for 37 years, drugs aren’t going to do it! Check out/google “Pam Bartha”, She’s had MS for 28 years, jogs 5 miles a day and is helping people around the world. She has a book called “Wellness Champions”, read it. MS is an infection. After reading her book, I identified when I got it in 1979. Very interesting!
Karen Bradshaw
Thanks for the information. I'm going to look into what you said. I have had me for 26 years
Brian
My girlfriend just started taking Pam's class. Have you had any luck trying her program?
Karen Bradshaw
Thanks for the information. I'm going to look into what you said. I have had me for 26 years
catherine eberly
This is so exciting! This is not the cure for MS, It is a step in the right direction towards the fix!
Zee Holden
The title is very misleading. There is no way to tell if improvements are tied to remyelination at all. When making a claim for a breakthrough that still hasn’t happened it hurts the MS community. Someone reads that and runs to their Neuro wanting some of that remyelination stuff. False hope and false claims. True title “Study Shows Allergy Treatment Might Help Improve Some MS Symptoms.”
Lisa
I always find testimonies like this infuriating. MS is not a one fits all disease. Some folks diagnosed with MS can continue leading relatively healthy and normal lives, while others lose function quickly and severely.
Cindy Leonelli
Pattie, I'm trying to find this for my husband. I called the pharmacy and they pharmacist said they was not a drug like that listed. I can order it from the UK for $40 for 60 pills. Can you give me the brand name of your prescription and the cost? Thank so much in advance. Cindy
Ron D
I located new site for Tavist in Generic of Dayhist for $10 for a pack of 8 I was paying $20.