newbie hello and vitamin D article

Hi all, I am new to this board. Diagnosed with primary ITP at Christmas 2011. I went down to 25. Was treated with large doses (20mg) of dexamethazone for 4 days. Platelet count climbed over 4 months to 160. At 4 1/2 months I plunged again. I think I am between 30 and 60 now. I don't know exactly because the doctor wants me to just accept it (live with it) and not following blood counts. (He doesn't believe that things like tireness are attributable to ITP). I would like to have regular blood tests as I am trying to figure this problem out for myself. I think I have made a little progress with the assistance of this board. For example, it seems that citrus fruits do make me worse. Anyway, I feel like I have enough control that I am not going to plug to the lowest numbers. It is a comfort, though may be an illusion.

I found aN article written about potential side-effects of vitamin D and autoimmune diseases. I started taking vitamin D on a regular basis 9 months before the onset of ITP. I am wondering if it might have been a trig for me. Would welcome any thoughts.

www.eurekalert.org/pub_releases/2009-04/arf-vdm040809.php

I am out to lunch on that theory. I've read it before.

I've had my Vitamin D tested and it was really low. Low D can cause muscle and bone loss, so I opted to treat (I am also on long-term Prednisone). I have been feeling so much better since I started getting the levels up; I had jello legs before and could barely lift a cup of coffee without my hand shaking. That had been going on for years.

I also have Lupus and do not feel that the mega doses of Vitamin D exacerbated either ITP or Lupus. Before my low levels were discovered, I had been taking 800 IU's a day for a year or so and apparently it wasn't doing a thing for my D levels. It took about two years off and on of prescription high doses (50,000 IU's a week) to get to 47 which is still below the level I'd like the D to be.

So - I am a believer that D is a good thing. How much were you taking?

Hi Sandi,

Thanks for your post. I have been taking vitamin D @ 1000/day iu for 9 months as well as a good quality fish oil @ 4000mg/daily.

I would be interested to know if the 800iu vit D and the prescription dose vit D that you were taking were the same vitamin D compound.

My script is Vitamin D 3. I don't know much more about it.

I just found out my Vitamin D was low,,, probably due to the extended use of prednisone. My doc put me on Vitamin D 50,000 IUcaps to be taken once a week for 6 weeks... after that I guess we will retest and see what happens.

I didn't know pred causes low vitamin D. I knew that it interferes with calcium uptake, but not about the D. Maybe the low D causes the low Calcium.

Lily

I've never heard that Prednisone causes low D either.

Ha - my doctor gave me a script for D with 56 refills.

I might be so wrong here but I just thought I would share, last year I had a parathyroid tumor and one of the things that this causes is the calcium leaves your bones and goes to your blood so while I was waiting to have the tumor removed I had to take Vitamin D to try and get calcium to go to bones as high blood calcium causes stroke like symptoms.
So maybe the D is to help with this, from my understanding the Vitamin D helps calcium go where it is supposed to.
My blood calcium levels where so high that I once called the Doctors to make an appointment and by the time they answered the phone I couldn't remember my name or anything, ended up in hospital that day on a drip of something, can't remember what it was.

I am not sure of the vitamin D either... but I know it affects Calcium which is linked to Vitamin D.... *shrugs shoulders* LOL

am on calcium tablets now for having had two lots of prednisolone this year. NOt sure what will happen on monday because I think my platelets are lower than what they should be judging by the colour etc of bruising but not actually bleeding so not made contact with the consultant as do have monday's appointment.

No one has said anything about vitamin D but there again no one has said a lot of things mentioned on this website of which am not even going to bring up with the consultant because it would put travel insurance up considerable. The term remision has never been used with me thankfully.

My hema told me to increase my Vit. D to 2000 mg/day so that my calcium supplements would be better absorbed. This is because the prednisone increases my risk of osteoporosis.

Okay off the subject but I noticed something interesting here and wanted to ask...How can you tell by the color of your bruises that you count is low?

I have never been able to tell by color maybe by how many though..
SHannon

When my counts were low, the bruises were deep black and very large. I've never had bruises like that with counts above 30.

Below 30 I seem to bruise spontaneously (without cause) on the backs of my hands. Also the quality of my skin on my hands takes on a sort of translucant quality.

There is a lot of information coming out on Vitamin D over the last 2 years or so. Lot's of theories. I've been on Presciption dose for over 18 months, and it's only brought my level up to low normal. However, with a milk allergy and a grandmother who had bad oestoporsis I've opted to stay on the supplements. I have noticed a benificial impact to my colestral counts since being on it.

Joan posted an interesting article from one of the conferences she attended about a year ago.
www.pdsa.org/forum/6-general-itp-discussion/5492-link-found-between-vitamin-d-and-blood-stem-cells.html#5516