Taking Vitamin D and myleofibrosis

[BusyLizzie0030]

Being a regular reader of a science magazine I came across a study done (I think in US) saying there was evidence that vitamin D appeared to escalate PV to myleofibrosis. Is there any information to support this study in UK?

[Kelly2]

Yes I have read this too and asked my doctor but I am still awaiting for a reply. Maybe Maz could ask this for us?

[BusyLizzie0030 in reply to Kelly2]

Perhaps asking Maz would be a good idea if she could forward the question to the Consultant she is in touch with.

[Mazcd Partner MPNVoice in reply to BusyLizzie0030]

I have asked Prof Harrison at Guy's and she has said there is no data to support that.

[BusyLizzie0030 in reply to Mazcd]

Short and sweet then. Thank you Maz.

[Fika500]

I would be very interested in information relating to vitamin D and Myelofibrosis progression. My husband has taken it for several years and has progressed to MF.

[BusyLizzie0030 in reply to Fika500]

This was something I read on the ScienceDaily and dated February 8, 2019. (sciencedaily.com/releases/2...

I have yet to discuss it with my haematologist but have an imminent appointment. It seems to have been a Japanese study emanating from Kobe University.

[Kelly2 in reply to BusyLizzie0030]

Do post his answer.

[BusyLizzie0030 in reply to Kelly2]

I will.

[Fika500 in reply to BusyLizzie0030]

Thank you. I look forward with interest to hearing your haematologist’s view.

[NewBloom]

I'd be interested to hear as recently be told to take Vit D/ calcuim as my bone density is low. Never heard of this !

[Anag]

Hi BuzyLizzie,

Thanks for this. I have had a D deficiency all my life and am finally taking great amounts to keep myself in the normal range. It’s one on the reasons why my thyroid is ruined. I have ET CALR. I know I feel much better with it! I will read the above study and start a bit of research on this. No matter which study it is. Important is if the study is done properly. Anag

[BusyLizzie0030]

I think you must be guided by your own consultant. I am and am taking a copy of the study report together with details of the source and conditions with me to my appointment. I would always say ask your own consultant and GP. I am only passing on some interesting details I have read in ScienceDaily website. The full article gives details of the study and scientific conditions, carried out at Kobe University in Japan. It might be better to read it for yourself. Kin regards.

[BusyLizzie0030]

sorry "kind" regards. Missed out a letter.

[jointpain in reply to BusyLizzie0030]

Hi Lizzie, you can edit your writings by clicking on More at the bottom of the post and selecting edit! My wife takes vit D every day and has MF I take vit D and was told to take more only yesterday by a consultant, not that I have an mpn, but to help my arthritis. Love to you all.

[BusyLizzie0030]

Yes I was advised to take it too. I just thought the article might interest some fellow PV sufferers. I was told, when I asked if there were any vitamins I could safely take to combat bouts of extreme fatigue, that as most folks have a vit D deficiency maybe i could try that. It was two weeks later I read the article. I have given details of the source in my reply to another member on this thread previously. I hope there IS no truth in it but will make up my own mind after speaking to my consultant.

[amalekh]

Hi,

Here's a link:

m.medicalxpress.com/news/20...

Cheers,

Malek.

[BusyLizzie0030]

Thank you so much Malek. Maybe it could be forwarded to Maz too.

[kbodh]

sciencedaily.com/releases/2...

[BusyLizzie0030]

Thank you kbodh.

[BusyLizzie0030]

I did photocopy the data and take it to my haematologist saying that I had been recommended to take vitamin D although I did not, as far as I know, have a deficiency. She was completely disinterested and I asked her if I should leave the papers with her but she didn't want them. We have this very useful website supposedly to help us to understand and discuss the new findings when the are backed up by proper medical studies, however, sometimes it seems they are being rejected out of hand. I believe the study was done by a Japanese university. No one wants to be made to feel that they are promoting scare stories. All we are trying to do, in the absence of adequate medical advice about many aspects of our rare conditions, is to try to educate ourselves in order to if possible prolong our lives and try to be as healthy as we can be in spite of our challenges. Many of us did see this article so it is confusing when we are told there is no back-up data.

[Kelly2 in reply to BusyLizzie0030]

Hi, I wrote to my doctor about that and I got no reply. Seems they are not adequately informed. But since you don't need it why take Vit D?

[BusyLizzie0030]

seems to be a distinct lack of interest.

[clubdino]

Decades ago Vitamin D deficiency was linked to reversible myelofibrosis. Vitamin D deficiency has also been linked to AML. I'm more scared of AML than MF. But who knows what the real answer is?

[BusyLizzie0030]

Some reliable advice would be nice. We just have to hope that research throws up some more clues and answers to our rare disorders.