When You Read About MS Treatments, Read Past the Headline
There’s been some internet buzz recently about the possibility of an over-the-counter allergy drug that helps to repair the myelin that MS damages.
The drug is clemastine fumarate, and I suspect that some of that buzz may have been generated by headlines found on Twitter and Facebook, such as, “MS Study Shows Allergy Treatment Restores Protective Neuron Coating.” But the conclusion of this study wasn’t quite as certain as that headline suggests.
When the clemastine study article was published on Multiple Sclerosis News Today in mid-October, its headline was a bit more subdued: “Common Allergy Treatment Restores Protective Neuron Coating in MS, Trial Suggests.”
Those final two words, “trial suggests,” are important.
If you take the time to click on the article and read through it, you’ll find that it contains a few cautionary sentences from the researchers. The principal investigator is quoted as saying, “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.”
Another researcher said the team failed to prove that remyelination had occurred because “we still don’t have imaging methods that have been proven to be able to detect remyelination in humans.” But he indicated it was the only plausible explanation.
Two researchers at a different university noted elsewhere in the article that the improvements were “modest and probably not of a clinically meaningful magnitude.”
When I wrote about that same clemastine fumarate study on my personal blog over a year ago, I put it this way: “Could an over-the-counter drug, used to treat sniffles, help ease M.S. symptoms and maybe even repair myelin? Maybe…someday.”
As writers, we need to be careful about our words. Just the simple act of shortening a headline by removing “trial suggests” can cast the information that’s presented in a different light. We must write and edit responsibly, and guard against inflating facts for the sake of appealing to our readers.
Like physicians, we must first do no harm.
(You’re invited to follow my personal blog at www.themswire.com)
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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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Arthur Leeper
Your caution is noted, but you should also mention that Clemastine Fumarate is in a clinical trial at UCSF for an optic nerve condition that is a clearly measurable phenomena.
Beyond that are the reports of those who were involved in the UCSF Clemastine clinical trial... and those who took it outside the trial, but in communication with their Neurologists. Like my wife did. The effects of Clemastine are not immediate, but they are clearly measurable in terms of sleep patterns and overall well-being. Different individuals appear to react differently to Clemastine, just as in the case with other drugs.
Other drugs that show evidence of myelin repair are non-existent at this point in time, though there is massive research underway to try to discover whether any existing drugs have that effect. In the meanwhile, work has been underway for more than two years to try to remove the part of Clemastine Fumarate that causes side-effects. If that succeeds, the hope is that the resulting compound could be given at a far higher dosage, to produce far more dramatic results. That would be well worth the effort.
Ed Tobias
Hi Arthur,
Thanks so much for your comments. They add, significantly, to the information that was in the article.
The personal results observed by your wife support he hope that this, indeed, could be the start of something wonderful. I appreciate that you shared her experience to supplement what I wrote and to balance my caution.
I wish you both the best.
Ed
Katrina
I think that many of us dealing with MS would take ANY improvement, whether it be "not clinically meaningful" or "modest improvement." It's a tough battle against the disease and time.
Joan Quilter
I have been in contact with Dr.Chan who leads the trials, and he is very excited about results so far. You can read the review of his trials in the Lancet medical journal.
jumpytrader
AS I posted previously My son has taken Clemastine over the last 2or 3 years. From the articles I have read over that time I believe it works as a regulator of inflammation and the immune system to prevent further damage to the myelin thus allowing your body to slowly rebuild the damage over time. Walmart can order it if they don't have it on the shelf. It is called 12 Hour Allergy made by Sun Mark. I think that is the company name>
He has also taken LDN over the last three years and has had no relapse in that time. His body has rejected several of the high dollar MS specialty drugs. So he gave up on them over 3 years ago.
Meredith
I always wonder about the ages of those posting. Suspect that most are in the early stages of the disease.
Of course I am happy to hear about progress of research ?.
Kimberly
I just started LDN, how long was it before your son saw results? I'm scheduled to start the Ocrevus DMD and am having second thoughts...Copaxone didn't help, I can't take anything for pain bc my body rejects it. I heard LDN helps with pain so that's why I started taking it. I did more research and heard (not proven) that it helps with MS symptoms and slows the progression. One statement even said it cured MS (no medical paper/proof of that of course). I'm hoping to see results sooner rather than later. I started on a dose of 3mg.
Jumpy
My son has had Ms for 10 years or more and is now 35.
It does help with spasticity and so I guess you could say it helps with pain somewhat. You should notice that you sleep better and friends family will notice a better attitude fairly quick like a week.
In what I read patients had not had further attacks after taking it. One patient had stopped taking it and did have another episode about 3 months after, then started taking it again. One patient noticed it was not working as before and found out the pharmacy had changed supplier and the quality was not there. Changed back to original supplier and it was helping again. It is not a cure and I believe it only allows your body to start curing it self which takes good diet avoiding inflammatory foods taking the right supplements ,good probiotics, and exercise even though it is painful.
Good luck.
Bill Worth
Kimberly, I was diagnosed with MS in 1989 at the age of 47. I began taking 4.5 mgs daily of LDN at bedtime as soon as I learned of it, probably in the early '90s. I have taken it every night since then. It is the only med I have ever taken for MS. I am now 76 and retired on Maui. My last MRI (9/17) showed evidence that I have had MS -- but no evidence that I have it now. My neurologist on Maui said this was "very unusual . . . not something we see very often." Check my book, "Outwitting Multiple Sclerosis: How Forgiveness Helped Me Heal My Brain By Changing My Mind," published by Next Century Publishing. You can also find it on Amazon. I have said over the years, "I may have MS, but MS definitely does not have me." I attribute part of my recovery to taking LDN regularly for almost 25 years. It costs about a dollar a pill and has to be ordered at a compounding pharmacy. Hope this helps . . .
Kathleen Kazanjian
Rethink MS
For seven years I was experiencing off and on, hands and feet tingling, burning, pain, difficulty walking, extreme fatigue and depression. Countless visits to the ER and Dr. Office,checking for everything but B12. It then started where I had extreme difficulty getting dressed, had trouble feeding myself, could not write or hold a pen. Bending my neck sent electric shocks thru my body. Went to the hospital for MS testing. MRI, spinal tap, brain scan. After more testing, one Dr. checked my B12 level, it was 80. I spent 10 days in the hospital and 10 days in rehab. They were not sure if I would recover. Left untreated, B12 deficiency can cause permanent brain damage. I was lucky, everything reversed. Maybe if B12 methylcobalamin supplements were given early on, we might be able to prevent MS and other brain and nerve related diseases.
If that one Dr. didn't check my B12 level,I would have been diagnosed with MS, because the symptoms are the same. B12 deficiency left untreated will become permanent.
B12 is vital for our health. It helps make DNA & RNA, your red blood cells.
Helps with Depression,Dementia,Sleep Disorders.
Protects &a rebuilds the Myelin sheath covering your nerve fibers.
Slows brain shrinkage up to 80%.
Lowers Homocysteine levels associated with heart disease.
If low levels are left unchecked, brain damage will occur and can become permanent.
Helps with age related macular degeneration.
By supplementing with sublingual Methylcobalmin B12 around 40 or 50 years of age, we could help prevent problems before they start.
Everyone should supplement and maintain blood levels of B12 in the range from 600 to 2000 pg/ml in order to avoid and in this case, help recover from the wide range of problems that result from B12 deficiency or insufficiency. Health care practitioners: this is the first thing you should check for every patient that comes in, independently of their age or condition
Methylcobalamin: This is the neurologically active form of B12. It is technically a `coenzyme` of vitamin B12 and it is almost never prescribed by doctors despite being effective, readily available and inexpensive. It is also available in an injectable form. Degenerative neurological conditions are where methylcobalamin shows its greatest benefits over other cobalamin preparations. Brilliant news for MS’ers! Not only has Methylcobalamin been shown to work in neurologic diseases, it also helps with the elimination of toxic substances in
the body.
Kathie marshall
My son had ADEM in 2012- it is a one strike rapid demyelination.he still has deficits - especially neurogenic bladder. I am thinking of giving this stuff a try. His mri is pretty bad - neurologist says he appears better than his mri would indicate. I am so hoping it could help in any little way. He is 18 now, struggles with school, social interactions, bladder, has little ability to discipline himself in any way. Going to try it for 6 months. If anyone has any other suggestions for someone with lesions but not active ms, i'd appreciate it.
ann
My son had ADEM in 2011. He was a junior in college. It was devistating. I could go on and on, but you know what ADEM does. A doctor at Beth Israel Deaconess in Boston said that his brain looked like he had had MS for 10 years.
For a year, there was no improvement despite every best effort at natural supprot with diet. He didn't even know what corn was and he couldn't take care of himself. He couldn't read or write. Then, we read research about progesterone and traumatic brain injuries. I started putting progesterone cream (just a small amount) on him morning and night. In three weeks, he improved enough to return to college. He was only able to take three courses instead of 4. We then had a long process of other tests and therapies to get him back to close to his badeline of pre ADEM. He then took a full indergraduate load and a full master's course load at once. He has now finished his PhD.
His ADEM is relapsing, but he only has flairs in response to illnesses. The covid shot set him back. He was barely able to walk for 10 months, and then he got covid. He has been wiped out for almost a year, but is finally rebounding. That is why I am scouring other people's experiences right now; I'm trying to find somethign that we can add to the mix that might help him.
Keep looking and trying different aproaches, Something will work!
Debra Barton
I’ve been taking CF since I read about the connection with Multiple Sclerosis.
I take 5 of the smaller dose pills. I’ve tried for twice a day. Sometimes I forget.
My doctor doesn’t know. He probably never heard about it before.
I’ve had to be creative in how to find it.
I have no idea if I’ve had a difference or if it will show on my next MRI.
Desperate here.