Vitamin D and immune cells stimulate bone marrow disease (Myelofibrosis)

[amalekh]

Hello everyone,

I've just read this interesting finding:

medicalxpress.com/news/2019...

In short, myelofibrosis is stimulated by excessive signaling from vitamin D and immune cells known as macrophages. What do you think?

Cheers,

Malek.

[fee13]

Very intetesting! Vitamin D has been in the media a lot as the cure-all for almost everything, cancer included. Since having an MPN i have researched the different mechanisms of inflammation & changes in the body, the intricacies of cell function & pathways are infinite and rather scarey. It's good that they are doing specific research for MPN's, "whats good for the goose is not necessarily good for the gander".

[katiewalsh]

Hi Malek, thanks for posting this. My normal vitamin D3 supplement

was just increased to reduce the skin tears I get. So I’m glad to find this to ask my MPN doc for advice on taking these supplements. Katie

[bruddery]

Hi there. What a very interesting piece of research. I take prescribed double strength D3 forte for osteoporosis so will certainly be asking my consultant at my next appointment. Thanks very much for this. Bruddery

[Betsywest]

How very interesting, thanks for sharing this.

[JackLina]

I think I'm pretty miffed. My physio/pain management team told me I should take D3 to help ease the muscle and joint pain I had been suffering. I've done it ever since.

[mhos61]

I was recently found to be lacking in Vitamin D.

My GP has just prescribed a strong 3 month course and I’m now advised to continue with over the counter Vitamin D3. I feel it has helped me, and now this! 🤔

[Stevesmum42]

What a minefield we have to navigate with our conditions!!

What to eat,

What not to eat to either increase or decrease iron and Vit K, don't go into the sun we are at risk of carcinomas, so we get short of Vit D which plays a big role on our health....so we supplement , now that supplement puts us at risk apparently..........tough to know what is the best for us,

We get conflicting advice from Heamos re treatment etc. Referencing some recent posts.

I thought my confusion was down to my age now I'm not sure.........

Onwards and upwards my friends. It's stopped raining , enjoy your Sunday.

Love to all Sandy. X

[mhos61 in reply to Stevesmum42]

Well written Sandy, I couldn’t agree more with your comments.

[Pepper2nd in reply to Stevesmum42]

Couldn't agree more. However this research was conducted in mice which are a different species. The results can not be relied upon.

[Wyebird]

Thank you . I’m not going to take vitamin d tablets unless told to.

[amalekh]

I'm not sure whether we can conclude any action out of this finding at this stage. I think since vitamin D is vital for our bodies, we, patients, can do nothing, not even prefer or decline. However I hope this finding opens the door for an approach that slows down the disease progress.

Cheers,

Malek.

[Tinkerbell13]

Feel totally confused....but, before reading any of this, had a strange feeling I should not take Vit D (have ET and Jak +), but lately have taken it, because 'the world says we are all short of vit D, esp in winter, so thought perhaps should take it....now, reading all this, am just more mixed up and don't know what to do....so am grateful to read other's input. Many thanks and good wishes to everyone. Tinkerbell 13

[Mica11]

Living up here in NE Scotland our naturally sourced ( from the sunshine) VitD is historically low and lots of us take it as a regular supplement. My physio at Pilates class bangs on about it too. My consultant at the hospital advised taking it all year round.

Isn't this life one big game of roulette? Do I jump into the red or the black?

More confusion.....oh heck, think I'll have a coffee, a very strong coffee and think about something else for now. I do thank you though for posting the link to that article, something for my next hospital appointment.

Mica (confused of Scotland)

[amalekh in reply to Mica11]

Hi Mica,

I'm sorry this article confused you, but I'm sure this finding doesn't impact us in a way that makes us miss the basic supplements of our sensitive bodies. I think the finding is still at its very beginning stages and nothing much into it for us.

Cheers,

Malek

[Mica11 in reply to amalekh]

No worries Malek, my reply was written in humour with a smile on my face. I don't worry about the 'what ifs' in life, I live in the now, it's all any of us have and I don't intend to waste it worrying about anything that 'may' happen. She says, as she takes her daily supplements and necessary poison....with gusto!

Mica.

[amalekh]

Hi everyone,

I know that everyone of us needs and waits for the positive news rather than the negative ones, and what I noticed is that this article delivered a negative impact on many of you. I won't say I feel guilty, because I always welcome the truth and science, but I would say we need to look into this article positively as it potentially offers something to work on for the future.

Cheers,

Malek.

[mhos61 in reply to amalekh]

Hi Malek.

I’m very grateful that you posted this article. I don’t view it as negative at all, more educational and informative.

I always remain open minded until proven evidence is forthcoming. I will carry on taking my vitamin D3 until then. But it’s certainly no harm to have been made aware of a ‘potential’ concern for MPN patients, and I thank you for that.

I think there is probably a bit of ‘humour’ in some of the posts, in that we’re told so many things are good for us, only to be told in the next breath they’re bad for us!

Mary

[Kimmyk]

I would like to see what your doctors say about taking vitamin d with jak2.

[Tico]

Certainly not confusing and certainly dosen't have a negative impact on me. I remember the salmonella crisis,Edwina Currie created in the late eighties,it took one of my brothers off eggs for life,not me i regularly eat two boiled eggs for breakfast. Then we've had mad cow disease,it didn't put me off eating beef. I take prescribed vitD as i'm very low in it as i don't go in the sun much and had ricketts as a child. If we took notice of a lot of things today that we read/heard we would probably die of worry and not by the supposedly offending/contaminated food or substance!... Atb,tina🤗

[Elizka]

That is concerning. I always struggle with taking supplements that we need but worry that my PV might not do well with the supplement.