Info on HU

[Whitegate]

Hydroxycarbamide

ABOUT by how much does 1000 mg per day reduce immunity , please?

[EPguy]

There is no 100% answer like so many things. But I asked my Dr and he said it is related to our WBC count. You can check your blood test, esp for for Neut and Lymph levels. If these are in range it is more likely you have ok immunity vs if you have low levels. See below. The "temporary" part is less relevant to us since we take HU for long periods.

If your WBC levels are low you may want to discuss with your Dr about your dose while watching your platelets.

mayoclinic.org/drugs-supple...

<<Hydroxyurea can temporarily lower the number of white blood cells in your blood which increases the chance of getting an infection>>

[finlay2106]

Hi Whitegate,

I'm on 500gm/1gm Hydroxycarbamide alternate days (diagnosed PV) and am now included in the clinical extremely vulnerable / immunocompromised group(s). However, some time after the pandemic started I contacted my haematology team to ask if I was immunocompromised due to the hydroxy and told 'no'! Out of curiosity, I did a private ('Testing for All' here in the UK) antibody test a few weeks after my 2nd vaccination (A-Z) in May 2021 and the score was 700 u/ml (don't know what that actually means) indicating there was an antibody response. I repeated the test 2 weeks after my 3rd primary vacc. (Pfizer) in October and the result was >2,500 u/ml which was the maximum score they give. As ETguy says there appears to be no hard and fast rule on this and from what I've picked up it can be very variable and is probably affected by a lot of other factors. I'm waiting to book my official booster for early January.

It might be worth doing an antibody test just to check (I can recommend 'Testing for All', they're relatively inexpensive and very fast) and it is also a good idea to keep track of your blood count results after each blood test anyway (I assume you're tested regularly) so you can monitor things, assuming you're not doing that already. Also probably a good idea to discuss this with your specialist next time you speak to them to get their view. I do monitor WBC, RBC, PLT, HCT etc but it's tricky for me to get the breakdown of the WBC into Lymphocytes, Neutraphils and so on as it depends on where the test is done and how willing they are to give me the fine details!

Good luck.

[Whitegate in reply to finlay2106]

Great info thanks.

[Whitegate in reply to finlay2106]

Thank very much Findlay. Most useful.

[Meatloaf9]

Hi, I asked my MPN specialist this question 2 weeks ago. I am 72 PV Jak+. He told me he did not consider me immunpcompromised. My CBC that day showed my WBC, lymphocytes, neutrophils and others on the differential were all between the reference ranges for the lab that was used (cleveland clinic). I have never had an antibody test so don't know what that would show. I have had 3 doses of Pfizer. I take 8 HU per wk. Hope that helps you some. Best to you going forward.

[Whitegate in reply to Meatloaf9]

Thanks, ML - What is 8 HU, please? I am on 1000 mg per day.

[EPguy in reply to Meatloaf9]

From posts here, it seems UK residents have easy access to antibody tests while they don't get the WBC breakdown as often. US does not routinely offer antibody tests while our CBCs usually have the WBC breakdown. Always interesting to see the various differences in our health systems.

[Meatloaf9 in reply to EPguy]

Yes, what is really interesting and amazing to me is that those in the UK are able to access the medications they need such as Pegasys, and Jakafi, and now maybe Besremi at no additional cost, at least that is what I think I have read. I am very happy for them that they can get the meds they need. While we in the US must pay a fortune for some meds if we can get them approved at all.

[mhos61 in reply to EPguy]

Just to say, I’m in the UK and always get the full wbc differential, as I’m sure the majority of us do.

[EPguy in reply to mhos61]

Thanks for the info on WBC. It may be just coincidence that I've seen some UK members without that data.

[Meatloaf9]

Hi Whitegate, What I meant by 8 HU per week is 8 capsules of 500mg each per week. I take one 500mg capsules each day except Tuesday when I take 2 of the 500mg capsules. I assume that you probably take 2 of the 500mg capsules per day to get to 1000mg per day. I don't know if HU (hydroxyurea) comes in any other size capsules. Best to you always.

[Whitegate in reply to Meatloaf9]

Many thanks. Blood test at 10.20 GMT today. Fingers crossed on big drop in platelet count. It was 1060 four weeks ago! Thanks again