Vit D and interferon: I wanted to put this out... - MPN Voice

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Vit D and interferon

KLCTJC profile image
45 Replies

I wanted to put this out there since so many of us are on interferon. As a lot of you know I am the super lucky one with MS is well! Gotta love when you are like one in however many million! For once I want to be ordinary! Anyways, I saw my neurologist and he recommended vit D as he said it helps the interferon work. I had read stuff about vit D and MS but didn’t realize it helps the interferon. Both MS and our MPNs are treated with class 1 interferons. I just wanted to throw this out there because my oncologist never mentioned it. Thought it may help all of us and start a conversation on whether vit D is right for you. And I need mine to work! We are hoping for a kill two birds with one stone situation! Hope this is helpful. Everyone is in my prayers and thoughts! Have a great weekend!!!

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45 Replies
Hopetohelp profile image
Hopetohelp

Wow that’s amazing! I have often wanted to take vitamin D, especially winter time, but avoided it as ‘don’t want to mess anything up’. Will be really interested to see what opinions you get on your post and thanks for sharing the info you received

EPguy profile image
EPguy

We're together in the "special" set, my condition is "complex" as my Dr noted.

--

There are reports on Vit D and IFN, a quick browse:

"This synergism suggests that vitamin D potentiates IFN-α action "

ncbi.nlm.nih.gov/pmc/articl...

and specific to MS and beta:

"The combination of vitamin D and IFN-β has potential benefit in ameliorating MS."

ncbi.nlm.nih.gov/pmc/articl...

--

In the 1st one, I wouldn't assume right off "potentiate" is always good. One reason grapefruit is off limits for so many meds (Rux for one) is its enhancement of a med's effects. Problem is the amount of enhancement varies widely so toxicity from too much is possible.

I got IFN "potentiated" by the flu vax.

But if Vit D gives predicable effects it should be fine, needs confirmation. Of course one wants to get Vit D blood counts while on this therapy.

KLCTJC profile image
KLCTJC in reply toEPguy

Great articles! Still sounds like vit D plays such a big roll in our immune system and is something to consider on interferons. Especially since they have the chance to increase their effectiveness. Thanks!

EPguy profile image
EPguy in reply toKLCTJC

Agree to consider,. But how much increase will happen? For example one person on 150mcg and vit D could see just slight effect while another might get equivalent of 250mcg in some effects (just random examples) Also Vit D can be toxic if overdone.

At least one should watch CMPs and vit d levels extra closely while starting vit D.

This may be no issue at all but we should be aware. I may be too sensitive to this enhancement effect having experienced it (more of the good and very adverse) on Bes when adding the flu vax to it.

KLCTJC profile image
KLCTJC in reply toEPguy

I think everyone should talk to their doctor first. And vit D levels should be drawn to verify if deficient. But I think what I got from that article was different than you. I see the positive effects of vit D on viruses and with interferon. But everyone still needs to discuss this with their doctors. And you are correct no one knows how it will affect them. And I completely understand your position with your experience. Everything should be discussed with your doctor. Just good information overall, either way.

KLCTJC profile image
KLCTJC in reply toKLCTJC

I really appreciate you! And agree that everyone needs to be careful and talk to their doctors.

EPguy profile image
EPguy in reply toKLCTJC

Checking a bit closer, the benefits for MS seem quite compelling. They discuss cytokines Th1 and Th2. Less of the former and more of the latter is good.

"The combination of vitamin D plus IFN-β reduced Th1 and Th17 cytokines, and increased Th2 responses reversing the effect of IFN-β alone"

So you're right it is really worth checking it out from the MS side since it states that IFB-b alone has a negative effect re Th1-2.

I haven't found specifics for MPN. But the benefits in general seem esp for those with low D levels. Could be the highest safe level via supplements is the idea.

Good discussions of IFN viral effects, reasonable since many articles are for Covid. In fact interferon was named bec it "interferes" with viral replication.

PhysAssist profile image
PhysAssist in reply toEPguy

Triple the suggestion to have regular Vitamin D levels chacked- Vitamin D toxicity is no joke:

Vitamin D Toxicity–A Clinical Perspective

ncbi.nlm.nih.gov/pmc/articl...

hall2 profile image
hall2

I take vit D every day and I’m on Pegasys. I’ve had no problems.

Wyebird profile image
Wyebird

thank you so much I’m going to B start Googling now. X

Wyebird profile image
Wyebird

oh my word just googled! that’s amazing, how many of us get our vit d checked as routine? Here in the UK it’s a well known fact many of us are deficient during the winter months.

Anag profile image
Anag in reply toWyebird

England is like Austria, almost everyone is deficient. Unfortunately, the doctors prescribe only a few drops of a vitamin D oil daily, which is actually meant for newborns and toddlers. Vitamin K is also necessary for proper uptake. We can get that through our food. Please check on that.

Vitamin D3 is the sunshine hormone (yes it’s called a vitin but is actually like a hormone). Putting on sunblock actually stops Vit D from entering our bodies! Just 15” in direct summer sunshine gives us 10,000 IUs of Vit. D. Over the summer, we build up our D storage and we can have enough for about 1/2 the winter.

We should get it through food, but the comventionally produced food is deficient! The soils are depleted and the cows are fed whatever. 😕

Be well and have your D checked once is a while. It’s a master antioxidant also. 🙂

Wyebird profile image
Wyebird in reply toAnag

I was very vit d deficient once. I felt Prescribed vit d 1 tablet a week for 6 weeks. 24 hours after each tablet I felt perkier. Unfortunately the deficiency was found after investigative blood tests.

It’s not routine which maybe it should be especially if on Peg .which I am.

Anag profile image
Anag in reply toWyebird

Vitamin D is huge! At least the insurance here in Austria pays for it. I was checked only by a specialist ant I was always around 25/30. That’s a deficit. All doctors told me I’m ok, I was in range. In Range?? The lower Austrian range is a deficit! I got 3 little drops a day for 1/2 year and it didn’t go up above 35. Still deficit. D is responsible for hundreds of processes in the body. If we don’t have enough, our bodies struggle and our organ systems are trying to make up for the misbalance.

drjockers.com/vitamin-d-def...

D is one of the key factors in Hashimoto.

Wyebird profile image
Wyebird in reply toAnag

gosh anything below 30 in Uk is seriously deficient. I was 31.

Glad you are being monitored

PhysAssist profile image
PhysAssist in reply toAnag

Hi Anag,

I found that link helpful, but with almost too much to process. The only thing I didn't really care for, but which some might consider to be excusable was the direct marketing of the Dr. Jockers' brand, and other company's supplement products.

As far as some the specific claims made about all the various effects of Vit D and its deficiency, it'll take a minute [more like hours really] to go through and fact check each one that they have listed on the web site.

Thanks again!

PA

Anag profile image
Anag in reply toPhysAssist

I have been getting information from doctors like Dr.Jockers for six years now. I’ve never bought anything and if they are putting out so much incredible information out to the world, they should be able to make some money for all the work they’ve done. It is a lot of information to process because he is very thorough. But I do find that once you start to learn the Terminology and build your medical vocabulary, it will become easier and easier as it did for me. Stick with it you’ll be super fine!

😉 Anag

PhysAssist profile image
PhysAssist in reply toAnag

Hi Anag,

Please don't regard this as my being a troll, but I had to take a closer look at "Dr." Jockers credentials and these are just what I found:

Dr. Jockers COVID-19 Fraud Warning Letter - April 21, 2020

Source: fda.gov/media/137707/download

Broke Chiropractor to Successful Online Entrepreneur with Dr. David Jockers

Source: healthpreneurgroup.com/dr-d...

B@t-Sh!t Stupid: NaturalNews.com, Conspiracy Theories, ‘Vaccine Zombies’ & Making Tons of Cash

Source: unscenecomedy.com/2015/09/t...

That said, at least some of the Vitamin D information on his site was validated- e.g.,

Comparison of vitamin D2 and vitamin D3 supplementation in raising serum 25-hydroxyvitamin D status: a systematic review and meta-analysis

Source: ncbi.nlm.nih.gov/pmc/articl...

Vitamin D: modulator of the immune system

Source: pubmed.ncbi.nlm.nih.gov/204...

The impact of vitamin D pathway genetic variation and circulating 25-hydroxyvitamin D on cancer outcome: systematic review and meta-analysis

Source: pubmed.ncbi.nlm.nih.gov/283...

Autophagy, apoptosis, vitamin D, and vitamin D receptor in hepatocellular carcinoma associated with hepatitis C virus

Source: ncbi.nlm.nih.gov/pmc/articl...

There are/were likely others, but this post is getting overlong [even for me].

I'm just always trying to consider the source...

Best,

PA

Anag profile image
Anag in reply toPhysAssist

Hi Phys Assist!

Thanks for writing. I have no problem with trolls. 🙂

That’s was a huge read for me this late. I wrote about Vit D and just happened to pull out Dr. Jockers because he explains it well. He has an unbelievable amount of information that is understandable also to non-scientists. I am thankful for such people. He’s one of many. I have never bought his supplements nor those of anyone else from internet. I find my own.

The FDA is calling his supplements drugs. vitamins and nutrients cannot be called drugs and they can’t be patented. I haven’t read his Covid cure claims. They are saying he has no right to claim cures for Covid-19 etc. with his supplements. I do understand that. There were thousands who were claiming cures. Especially at that time, where Covid was turning into a nightmare. Many of them were right in helping us get over Covid. The FDA hasn’t criticized the hundreds of pages of the scientific information he’s providing in his website.

Note: There is nothing wrong with any businessperson or any doctor producing and selling supplements. Whoever runs a business and provides a product, should get paid for it. Following Jocker’s and other web Drs advice, I fixed my reflux and was successful at getting rid of parasites , which my doctors couldn’t do safely for me. It cost me nothing. 😀

I do know that having suffered 50 years from chronic bronchitis, sinus infections, strep, having pneumonia 3x and taken antibiotics more than 100 times, I’m walking proof of non FDA approved treatment/diets. Since I went on the AIP diet, I fixed my decrepit immune system: 33 years of eczema, many years of Histamin Intolerance, hypothyroid, sinus infections, bloating, antipositas, fatty liver, bad breath ….. gone. In the last 5 years, I’ve had only one real cold. How many can say that? Me? The perpetually sick one? The other 2 times I got rid of the colds within 36 hours by taking high dose Vit. C (1,500mg every 2,5 hours for 1,5 days). I personally found this superior supplement, containing also zinc, l-quercitin, OPC, manganese, l-glutathione and a few other things. I did get through Covid with it, NAC and propolis.

the comparison of D2 and D3 was great. Thanks for that! Now I know. I’ve trusted Dr Coimbra and his MS protocol which worked well on my daughter. She was taking 50,000 IUs of D3 a day for months. there’s a strict protocol else this can cause kidney calcifications and terrible magnesium deficit .

I looked for negative press on Coimbra’s protocol after my daughter started this treatment. I found a study from a university (in Wyoming?) that proves that the Coimbra protocol does not work . After over an hour of studying the results, there was tiny print at the bottom of the last page ( most don’t read that far) that said D2 was used instead of D3! Isn’t that a bit suspicious? Why do they try to disprove Coimbra by using something Coimbra didn’t use? I didn’t find who funded the study. The answer lies there.

What I’m trying to say here is that there are always motives to shoot down those who cross the interests of others, even when they are good for the world. I try to cross check and then always use my hopefully good judgement to discern what is and isn’t right.

Regarding the unscenecomedy: 😣

All the best. 🙂

Anag

PhysAssist profile image
PhysAssist in reply toAnag

Hi Anag,

Thanks- it's nice to have a friendly conversation even if it seemed to be an argument on its face.

I do get it, and I take the [verified] information wherever I can get it.

As to the FDA classing vitamins as drugs, I think it may be based on how they read the claims to treat or cure diseases or symptoms that they say he touted on his website.

I agree that people can sell whatever they want on their business web sites, but since he claims to be a medical expert without [what I consider to be] credible credentials, I kind of put him into the Dr. Oz category as a shill and self-serving entrepreneur, while posing as a health expert and advocate- but I'm fully aware that it's just my opinion.

Thanks again for the reasoned discourse, and congrats on your success in remaining/becoming healthy!

Best,

PA

Anag profile image
Anag

Dear KLCTJC,

Thanks for writing. When I first read the opening to your post, I got scared. I thought that vitamin D would somehow detox the Besremi! Thank you so much for the good information! And I take between 50 and 60,000IUs weekly in very high dosed tablets.

We live in Austria. my daughter had terrible autoimmune problems and her doctor put her on the Coimbra protocol . Coimbra uses extremely high amounts to “cure” MS patients! Our doctor worked with Coimbra in Brazil for two months! Please look into this. One of my MS friends is now on this and is doing better. There are precautions to be taken on the protocol so please be really careful and really find a trained practitioner in case you decide to do this! My daughters D levels were so high, they were not detectable. Probably 500. She needed to pee 2,5 Liter a day, take 600g Mg of the best kind (too much D depletes), reduce all calcium intake since D holds onto it and can harm kidneys so only with trained practitioner. 🙂

For normal people it is optimal for blood levels of vitamin D to be at optimal range which is between 60 and 80. Under 50 is deficit. There is no problem being as much at 120. My husbands is about that and he has Psorriasis. 1/2 is gone in just two years after suffering terribly since he was 13, now 61. No more psoriasis arthritis since the D and he’s a violinist. It’s necessary to drink a lot of water and take magnesium which is depleted by too much vitamin D. We take at least 150 mg of a very good Mg supplement daily. 🙂

Ps for the Coimbra protocol, it is necessary to use D3 and not D2!! I researched this in depth, and I found a study done by the University that disproves Coimbra . After spending one hour studying the study, I read at the bottom in tiny letters that vitamin D2 was used instead of D3. Why do a two-year study on MS patients using a D2 vitamin which Coimbra does not use. Coimbra specifies exactly D3!!! I was upset about losing my hour of time.

thank you again

Anag

KLCTJC profile image
KLCTJC in reply toAnag

THANK YOU! Just looked this up. Since I am kind of an experiment to see if Besremi May control the MS too I am still thinking if it doesn’t then what. This looks interesting and makes me feel even better about my doctor’s recommendations. Appreciate your comment and all the best to you and your family

Amethist profile image
Amethist

At my initial diagnosis, I was also deficient in vit D. ( along with other vits) How many people on here have had their vit D levels checked regularly? Especially those taking treatment?

Platelets have vit D receptors, it kind of gives you a clue it is essential for healthy cells. Mitochondria also have vit D receptors. For these reasons alone I could never take any drug if it means you have to avoid sunshine . Don’t want anything to impact my vit D levels.

I don’t use sunscreen either 🤩 just common sense.

FG251 profile image
FG251

Just had my Vit D level results back - slightly deficient at 43 (lowest range 51-). GP has this minute texted to say I should take 1,000iu, so I’m relieved to read it should be fine with Interferon.

AnBee profile image
AnBee in reply toFG251

Please do your own research on doseages of therapeutic Vit D. Drs have virtually no training in this area. 1000 ius a day is negligible and not worth doing. A therapeutic doseage is more like 4-5,000 ius per day and some people with cancer have taken upto 70,000 ius per day for over 7 years ( that research is on pubmed) with no ill effects. Please make sure it is D3 and at least 90mgs of Vit K2 needs to be taken at the same time to prevent calcium from depositing in the organs or CV system There are excellent interviews with known medical researchers on YouTube etc that can clarify why and doseages

In fact it is not known what the true therapeutic doseage is as no real research on it as no money to be made, only health to be gained

Those of us that keep out of the sun due to increased risk of skin cancers and those in Europe and UK need to take Vitamin D and it has very little risk doing this especially if you are deficient. Is the correct therapeutic blood level 100 or 150? What level should a healthy person take and then what doseage should a person with cancer take? Always make sure to take Vit K2 with it at higher doseages.

PhysAssist profile image
PhysAssist in reply toAnBee

Hi AnBee,

I would recommend that you please exercise more care about recommending specific dosages, and more specifically- elevated dosages of things like Vitamin D. Please see my post about toxicity.

Even though it's a 'natural' compound, it can be dangerous in overdosing, which can occur because we don't know anything about an individual's need for and/or tolerance of a specific dosage, body weight, overall health, or any of the myriad factors that can contribute to problems from the recommendation.

While it is true that I did not have a lot of training in school about nutritional issues, I have spent a lot of time learning about them, and after 30-years in practice as a PA, I've now had a lot of experience prescribing Vitamin D [3] ,and in monitoring the response in serum levels to the treatment. In that time there have been people who only needed 1000 IU's daily and their serum levels of Vitamin D [specifically- Vitamin D, 25-OH] proved that was it was a sufficiently high dose for them.

That said, there were some others who [for unknown reasons] did not get an adequate dose-response, and as a result needed, and tolerated, significantly higher doses in order to get their serum levels to respond. Some of my colleagues practice with use of a single [and significantly higher] 'loading' dosage followed by a lower continuous daily dose, but I have not seen much literature to support the practice.

You are spot-on about recommending that Vitamin D be ingested in the form of D3 , as it is generally the best option for the most efficient and natural bodily absorption & processing though.

Also for a more complete report about all of this see:

VITAMIN D STATUS: MEASUREMENT, INTERPRETATION AND CLINICAL APPLICATION

Source: ncbi.nlm.nih.gov/pmc/articl...

Wherein they review more than most want to know about the topic. Perhaps the most salient thing I found was that the normal/desirable range is exactly what our lab at work reports it as: 32 ng/ml -100 ng/ml. with levels of >20, but <32 being consistent with insufficiency, and levels of <20 being absolute deficiency.

Best regards,

PA

AnBee profile image
AnBee in reply toPhysAssist

what we don’t know is those ranges are tested against healthy populations . What should the dosages/ranges be for a person with Cancer or other co morbidities? Toxicity can be greatly reduced by taking Vit K at the same time as well as magnesium. Listen to the many specialists and medical experts with experience and knowledge on this subject freely available in the internet.

AnBee profile image
AnBee in reply toAnBee

youtu.be/V5g9AVqRsjo

This is very interesting also on the same subject. 😊

AnBee profile image
AnBee in reply toPhysAssist

youtu.be/E3_t-EQIy0s

Thought you may be interested in some very latest research on Vitamin D. A very interesting breakdown of the research and cause for optimism. 😁

PhysAssist profile image
PhysAssist in reply toAnBee

Hi AnBee,

Thanks for the videos, but can you provide a link to the reference he cited in the 5/15/23 video?

I always prefer to have the original resource with me when I discuss these issues with my providers.

Thanks again,

PA

AnBee profile image
AnBee in reply toPhysAssist

hi PA. All research cited is always available by watching the video on YouTube then press the arrow next to the title of the video underneath the image and the whole transcript of the video as well as research references can be found. It is also interesting to note his interest in the Vit D question and research around for at least the last 3 years and how it changes his own personal approach due to evidence based research.

He has many videos on Vit D and it is all based on the research evidence

AnBee profile image
AnBee in reply toAnBee

pubmed.ncbi.nlm.nih.gov/306...

ciye profile image
ciye

When I was first diagnosed I went on hu and was sent vitamin D tablets by the hospital. I was told as we are meant to avoid the Sun on hu we should take them. When I switched to interferon nobody said not to take them.

Amethist profile image
Amethist

hope you drs checked out Vit B12 too. Interesting program that was on bbc a few yrs back, now on YouTube

m.youtube.com/watch?v=klobL...

Blonde25 profile image
Blonde25

Thank you for this post . I have have severe vitamin D deficiency and was told to supplement all year round I take vitamin D3 2000 iu a day and I'm fine the doctor said I won't overdose on this amount and I've been fine . I've been on that dose for quite a few years and I have been on interveron about 3 months and was diagnosed with PV in December 2022 1/3 MF present in my BMB

Good luck

KLCTJC profile image
KLCTJC

Thanks for all the comments!! Everyone of them were helpful! I just wanted to start this conversation in hopes that it helps! Wishing everyone well!!! And thanks again for the great comments!

Minify profile image
Minify

I’ve taken Vit D3 (25mg/1000iu) for 10 years as part of my osteoporosis regimen. When Covid came along it was interesting to see the research supporting Vit D3 to boost immunity. What is curious is the variance in dosage recommendations - I know some believe high dose (10,000u/day) is advantageous.

I live in Seattle, and it’s common to have annual Vit D blood checks, and take Vit D supplement. I was quite deficient prior to beginning the supplement, but my level has been normal for years.

I started Pegasys 6 weeks ago and was told to continue the Vit D3 at same dose. Thanks for the article on Vit D and interferon - nice to see this.

william-Indo profile image
william-Indo

My MPN specialist also recommend just Vit D for my suplement.The rest kick out

I am going to look at this again So many contradictions x I read a while ago that platelets could rise with Vit D so not gud for ET ???

Janis12 profile image
Janis12

I take vitD all year. Sun is our enemy so use factor 50 sunscreen all year. I had my vit D checked and because of the sun screen my vit D levels reduced greatly so that is why I take it and it is also very good for our bone health. Most of us do not get enough exposure to the sun so our vit D has to be obtained artificially, I am sure it can only do us good, from time to time I ask haematology to check my vit D which they are happy to carry out. I believe it is quite an expensive test so felt asking my GP to do it would have a negative outcome!

PhysAssist profile image
PhysAssist in reply toJanis12

Hi Janis12,

In the lab system we use at my place of work, the test for serum Vitamin D 25-OH level tests in $190.00 US- not cheap, but not really exorbitant either. I usually get mine checked once annually, but I may sask about going up to 2X's, just to see if there's a variation between winter and summer.

Best,

PA

Mishie14 profile image
Mishie14

Thank you very much for sharing your findings and the helpful replies that add to the story. Imagine linking INFa, INFb, MS, Vitamin D and MPNs and still more to come as further studies are released. I have been taking Vitamin D2 for some time, living in the US on a Great Lake. There are more cloudy days than sunny days all year 'round because of the tremendous moisture released from these huge, beautiful lakes. Anyway, taking Vitamin D2 is very common here. I started an increased dose of 1.25 mg liquid in gel caps once per week due to ET JAK2 positive diagnosis a year ago when a blood test that showed my Vitamin D had dropped to 24. Started with hydroxyurea that warns against sun/UV exposure so there was indeed concern about Vitamin D level. The increased dose and liquid form was quickly absorbed and quickly stabilized my value to 45 which is where my hematologist says is good for me. It's tested every 2 months while other blood tests are done biweekly. I took Hydroxyurea and anagrelide separately in the past for managing ET with awful side effects. Would be interesting to know if Vitamin D had anything to do with how well/not those drugs reacted. with it On March 1 of this year I started low dose 45 peginterferon injections biweekly with no side effects and slowly lowering of platelets as expected. Have had no issues with Vitamin D2 changing due to the start of peginterferon thus far nor has hematology raised it for discussion. Appreciate very much the information sharing on this very interesting topic. Stay safe!

ainslie profile image
ainslie

As a general rule for the average person is best to keep Vit D in the upper quartile. apparently if you over dose it can affect calcium levels. I take around 5000iu a day and I am at near top of range, some need more some need less depending on food intake and sun exposure

Sandymacp profile image
Sandymacp

I've been on vitamin D for many years, seeking to alleviate not being in the sun enough. I have taken it thru HU and now Pegasys. Not aware there could be an effect and so far none have been identified. Good luck.

Ginestragiallo61 profile image
Ginestragiallo61

Thanks a lot,me too I'm now on a Interferone therapy,Besremi,and no one docs or sanitary ever mentioned D vitamin to help therapy works.. but sure I'll get info and will ask to my Emathologist thank you again

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