I stopped taking thromboreductin 2 months ago, still taking hydroxyurea 3 perday ( was 2 and 3 alternately when combined with thromboreductin) and started taking 5000mg vit D3. My cbc this month, RBC down to 3.46 ( was normal 4,46) , HCT down to 38.9 ( was 46,9) , platelet 516 ( was 676), Lekocyte 14.9 ( was up n down). My egfr is 60. Had not done phlebotomy this 2 month. I wonder what cause this changing, hadn't seen my hematologists about this.
Do any of you with mpn had experience with taking vitamin D3 ?
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I had not seen Thromboreductin before. It's another name for Anagrelide.
Anagrelide is largely to reduce PLT and does not much affect the other blood counts. Your Dr was good to switch to all HU, that is what brings down your HCT/RBC. It normally reduces WBC too. Anagrelide further seems to have some progression risks that HU does not as discussed in other posts.
Did your Dr suggest the D3? In this study PLT rose slightly but "significantly" on D. You can compare many other counts with D here. But this is only one study.
Thanks for your response and the link about vit d.Taking thromboreductin was from Dr prescription .it's been a year taking with HU, turned out didnt lower my platelet . I insisted stop thromboreductin. After stop, PTL and RBC started going down but rbc now lower than normal.
Its my own initiative taking vit D3 since I learnt that mostly Mpn patients was in vit d3 deficiency.
With any recent or large change in our condition we do need to consult with our specialist, you should do so. We aren't qualified to Dx things of course.
I did find this report that notes WBC can oscillate with HU like your up and down.
"We identified 12 patients (7 females and 5 males) who showed fluctuations of the platelet and white blood cell counts when treated with hydroxyurea"
But these pts had large variations in both PLT and WBC. Could be your up and down WBC is part of this rare condition. It requires a Dr looking at your while picture to know more.
Dr may suggest a BMB (marrow biopsy) if there is uncertainty.
It is expected that hydroxy will reduce all blood cell numbers due to how it works. You should expect to see a decline in all of them.
You will see eGFR 60 = Stage 2 Chronic Kidney Disease. It indicates a mild loss of kidney function. kidney.org/atoz/content/gfr Note that eGFR<60 - Stage 3. Since Hydroxy is nephrotoxic, this a number to pay attention to. It is something to discuss with your care team. The good news is that the simple expedient of drinking more water can raise your eGFR significantly. This is especially important when taking a medication tht can be hard on the kidneys. Also important as we age and out kidneys become naturally weaker.
I do take vit. D3 3000 IU/day. I have a measure Vit. D deficiency due to another condition, Neurofibromatosis Type 1. I also have magnesium and Vit. B/folate deficiencies. I worked with an Integrative Medicine specialist to titrate to doses of the supplements to match my needs. I think it is a good idea to take what you need and no more.
Exactly Hunter, I test kidney 3 months ago , and turned out my egfr was 49 . Dr prescribed taking Novid , and my egfr now up to 60.After last CBC , despite my surprise that PTL HCT HB down , I feel a little down because RBW was down too, and egfr still way under 90.
Trying to moving forward , but can't stop feel like getting worse everytime
The good news is that there are other options if it turn out you cannot tolerate hydroxyurea due to the impact on your kidneys. Pegasys is also an option, though it can also cause issues with the kidneys. Jakafi is also an option if you do no0t respond well to hydroxyurea. Hopefully your nephrologist and hematologist are working closely together to monitor your treatment. Alo hope that you have a MPN Specialist on your care team rather than a regular hematologist. This is critical when you have a significant co-occurring condition like CKD.
Thanks for the good wishes. Neurofibromatosis Type 1 is an autosomal dominant genetic condition. There is no cure for it. The presentation of NF1 can vary widely, from very mild to life-threatening. Some people with NF1 do not survive childhood.
I have been very fortunate to have had an indolent presentation of NF1, until age 63 when we found a brain tumor in my occipital lobe. It was starting to affect my vision so I had it resected (craniotomy) in June 2019. The tumor was a Grade 1 Pilocytic Astrocytoma. It is the most common brain tumor in NF1, but very rare in adults. So far there is no sign of tumor recurrence, but there is a risk so we monitor.
The complication is that the NF1 mutation is a non-driver mutation for MPNs. It increases my risk of progression to Acute Myeloid Leukemia. The NF1 mutation deregulates the RAS-MAPK pathway, another of the body's kinase systems. RAS-MAPK is downstream from the JAK-STAT pathway that is deregulated by the MPN mutations. It is not well understood how these two mutations impact each other. The database of people with both mutations is just too small.
I take 60,000 IUs per week period this never really made a change in my blood count. My blood count jumps around. Anyway the big change in lowering my thrombocytes was having Cavitations fixed in my mouth. These are infections in the bone under teeth that have been removed or fixed. The amount of vitamin D has to be checked per blood test and I try to keep myself around account from 70 to 90. Do you know really how much vitamin D is correct for you. 🙂
vit D is actually a hormone and is used for 100s of processes in the body. A lack of d causes imbalances and inflammation. Inflammation drives all disease. The body must be brought into balance up be able to heal itself. All nutrients have to come into balance. I am much healthier now at 57 by balancing my health than I was at 42, despite ET! 🙂😁 check your status at ye next blood test and supplement accordingly.
Hi, I take Hydroxycarbomide which increases the risk of skin cancer so was advised to use sun block all year round (I do lead an outdoor life). Now most of our Vit D is absorbed through our skin from the sun so I reckoned if I was blocking the UV rays with sun cream then I would be struggling to get my Vit D. This concerned me as I do have low bone density although not due to a Vit D deficiency, so I asked to be put on Vit D which I get on prescription (as well as the sun block). I had my Vit D checked recently and it is fine. We have to be one step ahead of the game as nothing seems to happen automatically. I have no idea if the Vit D has caused a rise in my platelets, why would that happen I wonder Vit D is our 'friend', I will continue to take mine as I do not want my bones t snap!
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My HCT is coming down!
Not so good news - after 11 months of Besremi, WBC, RBC, Hemoglobin, and HCT were all below normal
Opinion s please following my hematologist apt today.
Taking Vitamin D with ET
Anyone try Methylene Blue?
