I have recently read an article that it is important to take Vitamin D to boost the immune system.
My wife was diagnosed with E.T. over five years ago and sometime ago was advised that it would not be advisable to take Vitamin D due to having E.T.
In recent times, she has found that she has to avoid being in the sun, no doubt due to her condition.
Has anybody any problems taking Vitamin D due to their MPN?
Hi I still stick to the sunshine for my vitamin D! Not a keen pill taker!
Hi, I have ET, I am on Hydroxycarbamide, clopidogrel and vitamin D. I have a deficiency for vitamin d. In 2018 my levels were extremely low, I was under a consultant from immunology. I take 2 vitamin d in winter and 1 tablet summer, time as requested by my immunology consultant.
Your wife should get her vitamin D levels checked ( blood test). MPNs can cause levels to fall too low, causing other health problems.
Vitamin D supplements can be a concern for people with MF so some good advice is essential.
Hi, I was diagnosed with a pernicious anemia - b12 deficiency and vit d deficiency a couple of weeks before being diagnosed with ET, my levels were very low. I was advised that I needed to take vit d tablets and have b12 injections for life. My haematologist has advised the same, I’m also on aspirin and hydroxy and not aware of any contradictions. The many conversations I’ve had with medics has been that more people need to be taking vit d especially those of us living in the North as we don’t get enough sunshine. I’m always outside as is my dad and he too has vit d deficiency, We’re both young 39 and 64!
Hi I have ET too.
I have never been given advice about any vitamins ( whether to take or not to) from any of the haematologist I have seen.
I have to say I regularly take a few vits and minerals, including Vit D and since starting these 2 +years ago I have only had one mild cold. I do believe they help you fight off infection.
Prof Claire Harrison advised me to take vit D to help with bone pain in MF. Apparently I was ‘profoundly deficient’. I am careful about sun exposure as I have fair freckly skin and needed biopsies last year on suspicious patches on my face. Fortunately they turned out to be just sun damage from earlier in my life.
Hi. You don't say what medication your wife is on. Many of us ET sufferers take hydroxycarbamide which can weaken resistance to skin cancer, hence we are told to limit exposure to the sun.
I am on regular vit D supplements (recommended by docs)
John
My wife was first prescribed with Hydrox, but reacted badly to it. This was replaced by Anagrelide but after a period, it failed to bring her platelets and was replaced by Busulfan.
This is a very old drug and does not seem to be as well used as it was. It is only used for short periods but has been successful in bringing her platelets down.
She went for a period of over a year without any treatment, then from August 2019 to November 2019.
She had a T.I,A a year ago, since when she takes Clopidogrel and Statins.
These are the medications she is taking at present but she has regular blood tests as her platelets are increasing again, last time 402.
Actually 402 is generally regarded as ok. I am currently holding at 398 and at my quarterly review on Wednesday my consultant said she was very happy with that. The "normal" range is 150 to 450, so your wife is well within that range.
I hope that helps, but I do appreciate how worrying it can be for our partners.
John
Hi, I have ET and am on hydroxycarbonide and clopidriol.
I have been rather poorly for the last 6 months ( not colds ) and am currently on a course of ( doctor prescribed) liquid vit D .And a self bought B vit complex.
In the summer I have to be very careful, I love and can't stand the heat all at the same time! Have to factor 50 all the time, wear a hat and stick to the shade where possible. So getting enough from the Sun and diet is impossible . No contra indications from it. Hope that helps. ☺
I think many people here may not be aware of the connection between Vitamin D and myelofibrosis. asianscientist.com/2019/02/...
At the same time a Vitamin D deficiency can wreck havoc on your body. It's a conundrum.
I take Vit D due to Vit D deficiency related to another genetic condition, Neurofibromatosis type 1. Have a significant Vit B/folate deficiency - maybe related to the PV treatment. Magnesium deficiency likely related to Nexium - needed for GERD. All this despite a very healthy diet. Oh well - what's a few more pills?
hunter, the experiences with vitamin D everyone has shared may have a common may ultimately point to issues processing vitamin D from the skin or in the digestive tract. Boron has a positive effect on vitamin D and magnesium. Search on "nothing boring about boron." If your low in B1 a deficiency of magnesium is usually found.
I have osteoporosis among everything else so I take a vitamin D supplement and try to eat foods high in vitamin D. I am on Jakafi for two years and already have had two basal cells removed, so I’m using a lot of sunscreen these days!
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