MS and My Experience with the Allergy Medication Clemastine

MS and My Experience with the Allergy Medication Clemastine

 

I’ve just dived into the misty world of the allergy medication clemastine. My, there’s a lot already written about it on this site. I was prompted by an article I’d saved on Facebook last year. In an idle moment — which have been pretty scarce lately — I went through my saves and rediscovered the article. In truth, I’d dabbled in clemastine before any of this research had been published — not through any prescient ability, but because at an MS Society conference a few years back quite a few of the participating medical research speakers were very excited about it.

I remember asking a cheeky question about feigning the symptoms of hay fever to get it prescribed. The answer was something like, “I cannot possibly recommend that, but it’s up to you what you do.” Which is reminiscent of Francis Urquhart in “House of Cards” and his catchphrase: “You might think that; I couldn’t possibly comment.” Actually, this all occurred before the Netflix reboot, but being British, I’d had the opportunity to be deeply appreciative of the original set in the Houses of Parliament.

I duly got a prescription — and I’m afraid to disappoint you, dear reader — but not by faking. I had a rash, and the doctor was going to give me an antihistamine anyway. I merely nudged him in the direction of clemastine, citing quite correctly that early research was showing a possible beneficial side effect for MS patients. Two birds, etc.

I took the normal dose. The rash cleared up. No harm, no foul. It didn’t seem to make any other difference, so I forgot about it.

Recently, I reread this article that describes the incredibly high doses used — up to 10 mg a day!

I am in the mood of being proactive — MS is, as ever, winning. But at least this was something I could covertly attempt — remyelination for anyone with MS is our holy grail.

Keep taking the tablets?

So, I quite legally secured a pack of Tavegil (clemastine) from a chemist’s website and got stuck in.

To me, 10 mg seemed like an awesome amount — so I compromised and took 5 mg overnight. I did this for two days. I was lucky it was a quiet two days, as I turned into a zombie — admittedly, a highly ineffectual one. Walking of any sort became completely impossible. It was like giving myself a relapse!

I stopped because I had stuff to do and the recovery was swift and joyous. How you could take 10 mg of clemastine a day for four months astounds me.

So, it was only two days at half the dose. The scientific evidence seems to be that there is an effect, but it’s too small to measure even in an MRI scanner.

All I know is that when I got back from work last night, I managed to climb the stairs to bed on my own — something that I haven’t been able to do since my relapse.

It could be that there’s been enough time so what’s left of the remitting part of my relapsing-remitting MS had kicked in a bit, or it could be that powerful placebo effect.

Whatever, next time I get a few quiet days I’m going to take quite a few tablets of that there old clemastine.

***

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26 comments

  1. Andi Anderson says:

    I started taking clemastine in February. I already suffered with bad allergies and have tried various allergy medications in the past, so getting insurance approval was easy. I take four 2.68mg tablets daily, two in the AM and two in the PM. My neuro wants me to take it for 6 months. It does make me sleepy as do all the other drugs to treat MS treatment. Adderall is the only reason I am able to stay awake through all these meds. It’s been a few months now and Clemastine doesn’t cause intense drowsiness like it used to for me. My worst symptom with this now is dry mouth like you wouldn’t believe.

    • Jessica says:

      I’ve been taking it 10mg a day for about 6 months. I’m not sure I see any difference in my MS. So my doctor that prescribed it told me to stop taking it and see if I have any significant changes. So far I notice nothing other than dry mouth has gotten better…

  2. David Claytor says:

    John:

    Thank you for describing your experience with Clemastine. Please keep us apprised, should you decide to resume.

    Kindest regards,
    David Claytor

  3. Amy Penszynski says:

    I take this…on month 5…4mg daily…you can do morning or night, depending how it affects you…may be sleepy but over time, will go away…you may have vivid dreams if you do it before bed but I had no problems.
    I’ve noticed very slight improvements…less of that scratchy sand paper feel on my nerves…less RLS…I sleep like a rock most nights. Btw, diagnosed with RRMS about 10 years ago now. Was on Copaxone, now doing LDN daily, exercise, healthy diet for MS, natural things, etc.
    My neuro prescribed with my urging…and bringing it up to him…I learned about it in a FB healing MS naturally group…love it…my compound pharmacist knows waaay more about it than my neuro…super helpful. Insurance unfortunately doesn’t cover it, typically…but I’m paying about $29/month…ask what fillers are used in case of any allergies…He said to keep taking it for at LEAST 6 months to really give it a chance to help calm your body so it can heal easier..it does take time and everyone’s body is different. I highly recommend trying it. LDNRESEARCHTRUST.org is a fabulous website with TONS of info/research/updates.
    Gotta be pro active and do your own research…docs don’t know everything..not possible…they have a zillion things on their plates unless that’s their focus..Prayers for healing and good luck!

    • Rachel says:

      Thanks, Amy!! Trying to get my long-time neuro on board with my desire for LDN!! Passing on (& checking out the .org) myself!!

  4. Jeannine Cuevas says:

    Before you make yourself a human guinea pig, especially without medical supervision, please read up on the suggested ties between taking this class of antihistamine and increased risk of dementia. Clemastine is in the highest risk category among anticholinergic drugs suggesting this association. Let’s hope something better comes along.

  5. Amy Householder says:

    I have been taking Clemastine Fumarate for about a year because I read this study’s findings:

    https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(17)32346-2/fulltext?elsca1=tlxpr

    I took Sunmark’s “12 hour allergy relief” which had 1.34 mg of Clemastine Fumarate as its active ingredient. I took 2 tablets in the morning and 2 before bedtime. I have SPMS and continued to decline despite the Clemastine. Of course I can’t really comment on its effectiveness because I don’t know how sharp the decline would have been without the Clemastine.

    I am using the past tense because Clemastine’s manufacturer has stopped making it. If you try to order it online all suppliers say “Out of stock” as a result. I am saddened that this drug is no longer available since it showed promising results. I will run out of Clemastine in about 2 weeks. It’s not even available as a pet medicine as it has been in the past.

  6. Spiro says:

    Not to be a downer but the promise of remyelination is empty when you consider especially progressive MS in which axons have already died. Remyelinating dead axons will do nothing to improve disability. And that’s the problem with chronic progressive MS—-too much damage. Look at Biogens Anti Lingo. It failed miserably in its primary endpoint of improving disability . Essentially did jack s$&#*

  7. Joan Quilter says:

    I remember talking to one of the main researchers, Dr. Chan, in SF, about this allergy drug. He was very excited about it helping with vision problems due to MS. My daughter’s optic neuritis has only worsened over 20 years, and so, I got this drug for her, but only after a couple of weeks, she didn’t want to take it, saying that it made her too sleepy. She’s bedridden, and so, I thought that wouldn’t make a difference for her. At any rate, she, really, didn’t give Clemastine a chance to work, and I had jumped through hoops to get the drug.

  8. charles says:

    There was some lethargy when I started taking clemastine, but it has gone away. I think that over the long term, it is helping me to function better. Just one part of the therapeutic puzzle.

  9. patricia schoen: parent of MS patient says:

    It is astonishing to me that the use of clementine, which has no substantive research, has induced many MS patients to risk discomfort or possible long term damage seeking some improvement.
    Controversial as though this may appear, I can testify to the efficacy of medical cannabidiols for my son’s abatement of his relapsing remitting MS.
    He had been diagnosed for 8 years and recently the pain and inability to walk without intense difficulty, led him to try medical marijuana.
    He experienced reduction of pain almost immediately; with time, the improvements extended to every aspect of his illness. Within 2 months,
    he no longer needs the wheelchair, or walker, and his brain fog has cleared so that he has resumed many activities that had been
    closed to him for most of the past 8 years.
    Being a witness to his amazing and continuing improvements makes me
    so sad for those in this country who do not live in a state where cannibadoids are legal so they have a chance to try this totally natural and non-psychotropic product.
    The tragedy is that the US Justice Department categorizes marijuana as a Schedule 1 drug along with heroine. This obviates the possibility for extensive research. The MS society speaks of reduction of pain and improvement in spasticity, but my son’s improvements extend to every aspect of his disease.
    A panoply of cannabis products are designed for those with MS and there are various options available.
    There are no life threatening side effects nor have there been any difficult and unpleasant ones that so often accompany the standard MS meds.
    I write this because if the story is no told, there is no chance that others will try and find improvement and relief that my son has experienced.
    Patricia Schoen

    • Marek Grabowski says:

      Patricia,
      What type of medical marijuana did your son use (there are so many options here in Colorado where it’s legal!)
      I would love to try if I knew exactly what.
      Thank you,
      Marek
      (direct email [email protected])

  10. James Stewart says:

    John, Thank you for your article and others for the discussion. I appreciate all the comments. I’ve been taking clemastine 2.68mg 2x daily for nearly 6 months now and do not notice any improvement. Did notice increase in fatigue and increased difficulty walking, though that could be because I’ve also stopped taking Ampyra about the same time as starting the Clemastine. Difficult to tell if increased difficulty walking is due to stopping Ampyra (probably) or starting Clemastine. But, I do know that I feel worse and for sure, don’t have a glass of wine with it.

  11. Kathy says:

    I also encountered the stopping of making clemastine, but thought I read where chlorTabs was equivalent. Either way I take it at night, helps me sleep ! Ampyra was not good for me. I’m starting ocrevus currently, my walking is the issue…balance, drop foot…fog has some how cleared a lot! I know Benadryl was or is not good. Swank/Paleo clean eating … and currently trevor wickens and the M.S. gym…as much as I can oh and 20 min on the recumbent bike a day. I have an old whiplash injury and have seen lot of great changes with his exercise. I am also one of three sisters with M.S. Lucky me, I was the oldest to be dx. I have seen what stress does for me, if only I didn’t put so much effort in to what i thought others wanted…I will prevail. its a heck a way of saying relax.

  12. Daniel Kerlinsky says:

    Clemastine is a highly effective medication for re-myelination of white matter fiber bundles that connect neurons everywhere in the brain.

    High doses aren’t needed. One quarter of a 2.68 mg tablet is enough to start recruiting new oligo-dendrocytes to start making and applying myelin.

    It does not have to be taken every day; it can be taken twice a week and still have a positive effect by recruiting the worker cells that repair the brain.

    Remember normal myelination starts at the top of the brain and works downward during childhood development. At first the baby can’t hold its head up, then it can sit up, then crawl, then stand.

    Many MS lesions are located further down inside the brain and spinal cord so it takes time to get there.

    The anti-inflammatory Minocycline taken once or twice a week is needed to stop the inflammatory part of the disease.

    And it takes cranio-sacral therapy to take full advantage of the new myelin which plumps the brain and even lubricates stiff joints like the sphenoid-occipital junction.

    Don’t give up on clemastine.
    Its first and most obvious effect is improved emotional self-regulation. Because myelination increases the speed of information processing ten-fold you will notice that thinking better comes next.

    I can’t tell you how long it will take to notice a difference. But the MS patient who told me about Clemastine got up out of her electric wheel chair and walked down the hall and back without a walker or her canes for the first time in two years.

    It works great for kids with tantrums and developmental problems in about a month. It helps people with chronic depression and PTSD in about three months.

    Back your dose down to 1.34 mg or 0.67 mg and give it two years. It takes a toddler that long…

    • Lisa says:

      For the last five months, I’ve been taking 2 x 2.68 mg tablets at night. It doesn’t make me tired at all, I do not have dry mouth, no side effects. All I can say is that I went from four years of debilitating trigeminal pain, increasing episodes in a wheelchair and utterly blurred vision in my right eye to BETTER. I’m stunned. There were times I did not want to live anymore. Trigeminal stabs are unbearable. And the depression of not being able to do things made life terribly sad. Now I’m back to reviewing shows, going to parties, dancing instead of watching through tears, and reading without extreme blurriness. I still get trigeminal stabs, and they are brutal, but far less often. My legs still get wobbly, sometimes feel “heavy,” even “go out” but inevitably these episodes are due to stress and fatigue. And I’m fine back after a good night of sleep. I get some blurriness when I’m stressed or tired, but it goes away. I take 100 mg of CBD (20:1 CBD:THC); Baclofen; and I eat organic a la “Wahls” avoiding gluten, dairy, corn, sugar, and I take supplements including a liquid called NutriMaxx, fish oil and a potent probiotic called VSL3. Even with Provigil, I used to get brain fog, but now I don’t. It’s mindblowing, and I appreciate every normal moment. I’m writing this because you never know what might help. I’d almost given up and I’m amazed by how I’m doing today. I hope this helps someone. PS) I get it from my dr., prescription.

  13. Teresa Harrigan says:

    I had tried 1.34 over the last year and it helped me move. I have right side weakness MS with severe drop foot. Taking the drug and can get up and down better and walk with my rollator a little further. This drug does not make me sleepy. I believe it is helping with inflammation. Now I can no longer get the drug. Very sad because it was helping with no side effects.

  14. Sara says:

    I’m also wary of this drug because of the link to alzheimer’s/dementia. I’m suspicious about the claim of remyelination also. One thing that does intrigue me though is the fact that an antihistamine is thought to help MS symptoms because I have been researching Mast Cell Activation Syndrome due to my horrible allergies and I definitely think this is something most MS’ers suffer from. I have been on LDN for 10 years with only one minor exacerbation and my only real complaint are my allergies (food and environmental) and the symptoms that go along with them. There are natural antihistamines that don’t have such bad side effects such as quercetin (take with bromelain).

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