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Thread: High Doses of Vitamin D Cut MS Relapses

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    Distinguished Community Member Sherman Peabody's Avatar
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    Default High Doses of Vitamin D Cut MS Relapses

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    By Charlene Laino

    High doses of vitamin D dramatically cut the relapse rate in people with multiple sclerosis, a study shows.

    Sixteen percent of 25 people with multiple sclerosis (MS) given an average of 14,000 international units (IU) of vitamin D a day for a year suffered relapses, says Jodie Burton, MD, a neurologist at the University of Toronto. In contrast, close to 40% of 24 MS patients who took an average of 1,000 IU a day -- the amount recommended by many MS specialists -- relapsed, she says.

    Also, people taking high-dose vitamin D suffered 41% fewer relapses than the year before the study began, compared with 17% of those taking typical doses.

    People taking high doses of vitamin D did not suffer any significant side effects, Burton tells WebMD.

    The findings were presented at the annual meeting of the American Academy of Neurology.

    In contrast to many vitamins, no recommended dietary allowance (RDA) has been established for vitamin D. Instead, the Institute of Medicine has set a so-called adequate intake level; the recommendations are 200 IU daily for people under 50, 400 IU daily for people 50 to 70, and 600 IU for those over 70.

    John Hooge, MD, an MS specialist at the University of British Columbia in Vancouver who was not involved with the research, says he recommends MS patients take at least 1,000 IU and "probably 2,000 IU" day.

    "This is an impressive study that shows that even higher doses are probably safe and even more effective. Maybe next year, I'll be recommending higher doses," he tells WebMD.

    Vitamin D vs. Relapsing MS

    Most of the people in the study had the relapsing form of MS, characterized by repeated relapses with periods of recovery in between. They suffered from the disease for an average of eight years.

    "They had very mild disease, with an average score of 1.25 on the Extended Disability Status Scale, where zero corresponds to normal and 10 to death," Burton says. Participants suffered one relapse every other year, an average.

    People in the high-dose group were given escalating doses of vitamin D in the form of a concentrate that could be added to juice for six months, to a maximum of 40,000 IU daily. Then doses were gradually lowered over the next six months, averaging out to 14,000 IU daily for the year.

    The rest of the participants were allowed to take as much vitamin D as they and their doctors thought was warranted, but it averaged out to only 1,000 IU daily.

    Everyone also took 1,200 milligrams of calcium a day. Vitamin D is essential for promoting calcium absorption in the gut and together with calcium, helps promote bone health.

    Vitamin D appears to suppress the autoimmune responses thought to cause MS, Burton says. In MS, haywire T lymphocytes -- the cellular "generals" of the immune system -- order attacks on the myelin sheaths that surround and protect the brain cells.

    In people given high-dose vitamin D in the study, T cell activity dropped significantly. That didn't happen in people who took lower doses.

    The researchers also measured the concentration of 25-hydroxyvitamin D [25(OH)D], also known as calcidiol, in the blood. The Institute of Medicine says that is the best indicator of a person's vitamin D status.

    There's no ideal level, although concentrations of less than 50 nanomoles per liter of blood are considered inadequate for good health. In the study, it appeared MS patients did best if levels reached 100 nanomoles per liter, Burton says.

    People with MS should talk to their doctors about whether they might benefit from vitamin D supplements, she says.

    "Too much vitamin D can be harmful for people with certain medical conditions such as kidney disease," Burton says. "Also, doctors can monitor your blood levels of 25(OH)D."

    https://www.webmd.com/multiple-scler...-ms-relapses#1

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    Study Shows Vitamin D May Help Reduce Relapse Rate of Multiple Sclerosis

    Jodie M. Burton, MD. MSc. FRCPC

    Dr. Jodie Burton was the acting principal investigator (PI) of the dose-escalation trial of oral vitamin D3 with calcium supplementation in patients with multiple sclerosis with Dr. O'Connor.

    As Dr. Jodie Burton is trying to find a safe and effective dose of oral vitamin D3 which would benefit patients with MS, I asked her what she is advising her own patients in the meantime pending the outcome of her research. Dr. Burton has kindly answered my questions concerning the vitamin D level to strive for in MS and the daily amount of vitamin D3 and calcium to take to achieve that level.

    In answer to your questions (and this likely applies to most of us in the clinic),

    Vitamin D level

    - Do you measure the serum 25-hydroxyvitamin D concentration of your patients with MS?

    From now on I'll be checking the vitamin D level in all new patients with MS and do a recheck after supplementation at 2-3 months to ensure an adequate response.

    - If so, when do you measure their serum 25-hydroxyvitamin D concentration?

    I would imagine the best time to measure vitamin D3 levels are at presentation, and would predict they might be low in the midst of an MS attack. I might recheck the value at three months to see if it increased - a subset of patients appear to mount a lesser response to supplementation. In truth, if I had no limitations, I'd check the whole immediate family, and during relapses.

    - What level do you strive for?

    If I did measure routinely, I would strive for a minimum of 100 nmol/L as that appears to come up in studies looking at the connection such as Munger et al. This cut-point also came up in some of our analysis as well, particularly with respect to T-cell reactivity (patients whose levels were ≥ 100 nmol/L at trial's end had greater reduction in T-cell reactivity).

    Vitamin D3

    - Do you advise your patients with MS to take Vitamin D3?

    Yes, I do.

    - If so, how much Vitamin D3 do you advise them to take?

    We typically recommend 100 mcg (4000 IU)/d of vitamin D3. I also recommend that dose to my CIS patients (as they are probably the highest risk group for MS there is). I have started recommending 100 mcg (4000 IU)/d to first degree adult relatives of my patients (at least who are not long-past the age at which MS could strike).

    - and their children

    I also recommend to my patients to consider supplementing their children (10 mcg (400 IU)/d for young children, 25 mcg (1000 IU)/d in pre-teen/teen years, and 100 mcg (4000 IU)/d as adults) - this is a little controversial, but as long as I've checked for contraindications and they talk to their pediatricians, I think it is safe and good for a host of reasons.

    Calcium

    - Do you advise your patients with MS to take calcium?

    I do suggest the patients supplement with calcium as well, we cannot be sure that our results are not related to the effects of both vitamin D and calcium, and Cantorna's animal studies as well as the paper in Am J Clinical Nutrition about reducing risk of cancer seem to point to a role for both.

    - If so, how much calcium do you advise them to take?

    I recommend 1000 mg of calcium (in our trial we used 1200 mg).

    My dosing ideas come from reviewing the literature and working with our vitamin D biochemistry collaborators (Dr. Reinhold Vieth and his PhD student Samantha Kimball here in Toronto).

    Objective:

    To characterize the safety profile of highdose oral VD3 in MS.

    Methods:

    A prospective controlled 52-week trial matched MS patients for demographic and disease characteristics, randomizing them to treatment or control groups. Treatment patients started VD3 at 4000 IU/day and escalated over 28 weeks to 40 000 IU/day. This was followed by maintenance with 10 000 IU/day for 12 weeks, 4000 IU/day for 8 weeks and a 4-week wash-out, translating into roughly 14 000 IU/day over 52 weeks.

    Calcium (1200mg/day) was given throughout the trial. The primary endpoint was mean change in serum calcium in treatment patients at each VD3 dose, and a comparison of calcium between treatment and control groups. Secondary endpoints included 25(OH)D, urine calcium/creatinine (Ca/Cr) and PTH. Cytokines, lymphocyte response and matrix metalloproteinase-9 were also measured, as were Expanded Disability Status Scale (EDSS) and relapses.

    Results:

    Forty-nine patients were enrolled (25 treatment, 24 control) with mean age 40.5 years (21–54 years), EDSS 1.34 (0–6.0) and 25(OH)D 78nmol/l (38–154). No abnormalities or differences in serum calcium, urine Ca/Cr or PTH occurred, nor were there differences in calcium between groups. Despite a maximum mean 25(OH)D of 413nmol/l (66–729), no significant clinical or biochemical adverse events occurred. A greater proportion of treatment patients had stable/improved EDSS vs. control patients (p=0.018). Treatment patients also had fewer relapses and a greater reduction in relapse rate vs. controls. Immunological data was presented.

    Conclusions:

    High-dose VD3 (~10 000 IU/day, possibly higher) in MS is safe and tolerable, with evidence of clinical improvement.

    http://www.vitamindandms.org/researc...ton/index.html

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    There is sufficient evidence to say cluster headache (CH) is an autoimmune disorder just like MS. It also interesting to note that both disorders are highest among people who are vitamin D3 deficient... When was the last time you had your serum 25(OH)D tested? 25(OH)D is the serum level metabolite of vitamin D3 that's used to measure its status... The normal reference range for this lab test is 30 to 100 ng/mL... Unfortunately, too many physicians will interpret 31 ng/mL as "Normal." The real vitamin D3 experts say anything less than 50 ng/mL is insufficient and that 50 to 70 ng/mL is optimum for otherwise healthy adults... As a CHer, we need 80 to 100 ng/mL and some need even higher levels.

    Both CH and MS respond to a regimen of vitamin D3 and the vitamin D3 cofactors/conutrients if the vitamin D3 dose is high enough.

    I've been working with cluster headache sufferers (CHers) for over six years and have roughly 600 of them taking what I call the anti-inflammatory regimen with 10,000 IU/day vitamin D3, Omega-3 Fish Oil and the vitamin D3 cofactors/conutrients that include 400 mg/day magnesium 12 mg/day zinc, 1-3 mg/day boron, Vitamin B 100 complex, vitamin A (retinol) at RDA and vitamin K2 at 100 mcg/day. I also have a close friend and Vietnam buddy who's wife has RRMS. She's been taking the anti-inflammatory regimen with 10,000 IU/day vitamin D3 for over 4 years and has remained in remission the entire time.

    The really important news for you deals with the Coimbra Protocol for MS developed by Dr. Cicero Coimbra, MD PhD, a neurologist in Sao Paulo, Brazil. His treatment protocol calls for much higher doses of vitamin D3 plus the cofactors. Where the anti-inflammatory regimen with 10,000 IU/day vitamin D3 works out to 100 IU of vitamin D3 per Kg of body weight per day, the Coimbra Protocol calls for upwards of 1000 IU of vitamin D3 per Kg of body weight per day... For a sleek rascal like me weighing in at 95 Kg, that works out to 95,000 IU/day of vitamin D3!

    What is also exciting is none of his MS patients on this protocol suffer from vitamin D3 intoxication/toxicity... There's a good reason for this... When MS patients start on this protocol, they need to avoid taking any calcium supplements and avoid calcium rich foods, i.e., dairy products... They also need to drink 2.5 liters of water a day to help their kidneys flush excess calcium from their systems. Nearly all of his MS patients find this a very acceptable trade off.

    You can read about Dr. Coimbra's work with his MS patients at the following links. He and his team of neurologists have treated over 3000 MS patients over the last 10 years and 95% of them are in complete remission. Many have reported their existing MS lesions are shrinking or have disappeared completely.

    There's also a very exciting study done by Dr. Jody Burton, MD et al. University of Toronto where she had 25 RRMS patients start an escalating dose of vitamin D3 from 4000 IU/day up to 40,000 IU/day and back down to zero on 6 week intervals for one year.

    This trial concluded with an averaged a vitamin D3 doses ~14,000 IU/day/year and 32/52 weeks spent at doses ≥ 10,000 IU/day:

    • There was no hypercalciuria, hypercalcemia or parathyroid dysfunction

    o No radiological evidence of calcification

    o No clinical or biochemical adverse events

    o Significant reduction in RR and EDSS

    o Significant reduction in T-cell reactivity/proliferation

    • Vitamin D3 intake up to 40,000 IU/day and prolonged intake of ~ 10,000 IU/day appears safe and is associated with improvement in clinical disease activity and T-cell reactivity.

    http://www.vitamindandms.org/researc...ton/index.html

    Take care and please let me know if this information is of interest.

    V/R, Batch

    https://clusterbusters.org/forums/to...ple-sclerosis/
    Last edited by Sherman Peabody; 10-31-2017 at 03:44 AM.

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    Vitamin D is stored in fat and not excreted. You have to be careful with the dose.

    ANN
    There comes a time when silence is betrayal.- MLK

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    Distinguished Community Member Sherman Peabody's Avatar
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    ^^
    I know it. One time I took too much (around 20k) and I swear I almost died. So definitely be careful with dose. Better to use it in close cooperation with your doctor. There's probably a special D3 preparation for persons with MS.

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    Distinguished Community Member BBS1951's Avatar
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    My doc put me on D3 and measured levels periodically. They got too high, so now it’s cut back freq of dosing.

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