ncbi.nlm.nih.gov/pmc/articl...
Interesting research on what seems to be a confusing area re VIT D . Should we take or not? It would be good to get a view perhaps from Professor Harris as to it’s safety for MPNs especially as it’s recommended for those of us from Bame communities as helping against Covid ?
I wasn’t aware it was an issue until l saw some warning posts here. I am seeing my haematologist in two weeks so will ask him for his views
Hi yes I was unsure with regards to vit D. Got my haematology apt end of month so will be asking for opinion. We will have to check out responses. It would be good if we could get something to help against the low immunity issues. Stay Well.
Ellie B
Hi Ellie,can you tell us more about haematology app please? Many thanks. Mairead
Hello Dovme - I also picked up on the possible VitD deficiency issues from this forum (also B12) - I had to fight to get them tested (do feel I really shouldn’t have had to + that everything that can impact on us especially when on hydroxy should be monitored) + yes, my D levels were through the floor - I am now on a maintenance dose (through my GP) which has sorted the fatigue I was having + presumably helping out with my immune system. Please let us know what your haem says. Anne-Marie x
"The bone marrow disease myelofibrosis is stimulated by excessive signaling from vitamin D and immune cells known as macrophages, reveals a Japanese research team. These findings could help to develop alternative treatments" quoted from the article titled "Vitamin D and immune cells stimulate bone marrow disease" conducted on mice. These mice had the JAK2V617F genetic disorder. Going in that direction I found a JAK2 inhibitor refered to as G6 that alleviates Jak2-V617F-mediated myeloproliferative neoplasia showing an impressive ability to shrink the spleen and reduce bone marrow fibrosis in myelofibrosis I checked if a patent was applied for on G6 and although it was shown as withdrawn I've posted it below. Under description at position 0001 mention is made of α-glycosyl isoquercitrin also called alpha glycosyl isoquercitrim which is found at a lower position. I brought this to your attention in hopes your consultant can put all of this in perspective. Alpha glycosyl isoquercitrim is available is supplement form. However, a liposomal preparation may overcome the absorption problems noted at 0008.
I recently learned pterostilbene from blueberries offers greater quercetin absorption than resveratrol and that quercetin and vitamin D together may offer benefits against Covid-19.
europepmc.org/article/med/2...
patents.google.com/patent/E...
Hi
What is G6? I dont know anything about it.
Thanks
G6 appears to be the result of enhancments to quercetin absorption. Click on the link beginning with patents above. Read the abstract as it begins with quercetin and arrives at Alpha glycosyl isoquercitrim which is a quercetin form with magnified absorption. Then at 0008 the patent's purpose begins.
As for Vitamin D and myelofibrosis, the conclusion is that if you have more vitamin D than needed, you are at increased risk of progression?
And why this G6 stopped trials? It wasn't effective?
Aneliv9, the article is from 2011. Click on the article link below then click on Redirect and finally click on Free full Text. The answer to your question at the end will suprise you.
europepmc.org/article/med/2...
I am sorry but even if i read it, i couldn't find the reason that this trial stopped. It seemed an exceptional drug. Could prof. Harisson answer this question??
I messaged Maz to seek clarification on the safety of using Vit D
Peter Sayeski responded to my inquiry:
Thank you for the email.
Unfortunately, we have been unable to raise the capital to conduct a clinical study. That being said, we continue to seek partners that have an interest in that endeavor.
Regards,
Peter P. Sayeski, Ph.D.
University of Florida College of Medicine
Gainesville, FL
Hey Doveme... 
Vitamin D is really helpful for many reasons from our bone density to other general health issues...
I have long been well aware of my own deficiency in Vit' D ever since I started treatment for my MPN. Upon being tested for Vit' D I was always below until I started taking a supplement, & I have now been taking them them for sometime...
One might think I should not require it considering the amount of outdoor activity I usually have vie cycling... However, my depletion comes, I believe... via the toxicity of the drugs I have to take, and therefore I will keep taking Vit' D for as long as I must ...
Best wishes
Steve
I take Vitamin D and calcium however this is prescribed and no one in medical profession has ever raised any concerns with me taking it and having ET. Best Wishes Liz
That is very interesting. I have a measured Vit D deficiency. The doc who follows me for the Neurofibromatosis told me that this is common for people who have NF1. She prescribed Vit D supplements. The hematologist is fine with this. Interesting that Vit D deficiency is also associated with the JAK2 mutation. 2000IU was not enough to bring my levels up high enough, so I now take 3000IU. Seems to be doing the job. Glad I found out about this as chronic Vitamin deficiencies can cause serious problems. I was also severely Vit B/Folate deficient. On high-end supplements for this too.
I think is all goes to show just how wide reaching the impact of a dysregulated JAK-STAT pathway can be. It goes way beyond hematapoiesis. I think that a complete nutritional analysts is an important part of MPN care. We need to give our bodies everything needed to function optimally.
Thanks for posting this. All the best to you.
I take Vit D3 4000IU daily - It was initially prescribed due to Hyperparathyroidism/hypercalcemia.
My Haem was fully aware that I was taking it. After my rogue parathyroid gland was removed I continued to take it , initially through the winter months.
Taking a daily Vit D3 supplement just made me feel better - I noticed when I stopped taking it I was more 'achy' and was picking up every cold and bug doing the rounds...
Also my diet lacks Vit D3 - I have Jak2+ PV so I limit the amount of red meat I eat, and no amount of 'It's good for you' persuasion will tempt me to eat any kind of oily fish - I even gag at the smell of it. My gag reflex just triggered at the thought of eating mackerel!
Due to Covid-19 and shielding I have continued to take it daily throughout the spring/summer months as I also started taking Hydroxy Dec 19. I therefore don't go out in the sun with skin not covered and high factor sun protection on. I knew I needed to get my sunshine vitamin from somewhere, so for me a supplement was the only option.
This explains a lot to me, my GP advised me to take VitD as my count was low, also I was having B12 injections before lock down. After reading this I will get some B12 to take orally, thank you all x
I read in the past that Vitamin D raises platelets, will look for this info again and update all
Hello Dovme, I have asked Prof Harrison and she has said: we do not discourage it.
Best wishes, Maz
Interesting, I was advised to take Calcium which has Vit D. I've since found out (2 years ago) my bone density was low and pre Osteoporosis. And my B12 level fluctuates between low and just above the low normal range but as I have Pv can't have B12 injections. My red cells are currently under control with Hydroxyreau . Only my Platelets keep elevating.
I had a tele-health appointment with my Haematologist this week and asked about this article. She felt that because it's written from a Turkish perspective, and published in a Malaysian Journal to read it with caution. Also she mentioned that because high levels of the Turkish population wear extensive clothing coverage, Vit D levels are naturally low. Hence she thought you couldn't extrapolate to other countries and said she would ignore the article. However, you should ensure your Vit D levels are within the normal range for where you live. I hope that adds more information for everyone to consider.
I live in Germany which believe me for most of the year we are all covered up as temps can drop to -15. Given my heritage plus Covid etc and now using sunblock, my haematologist has decided to test my Vit D levels - will be interesting to know if l have deficiency
Thoughts on PV/ET
ET? PV? Neither?
ET/PV/MPN-U
ET or PV 
