How often do I need blood checked on Hydroxycarbamide

[Kizzy03]

Hi I’ve been on Hydroxycarbamide since April last year and after a lot of adjusting I’m on 3x 500mg Wednesday to Sunday and 2x 5mg on Mondays and Tuesday .

As soon as my platelets got down to the four hundreds, my specialist nurse said “good I can now pass you over to your GP from now on !!? And you can get repeat prescriptions from there!! And was given an appointment for a telephone call from her at the end of May , and I’ve to make an appointment to get my bloods done at my GP a few days before. My question is, is it not too long to be waiting 6 months from be checked on this Hydroxycarbamide. I thought most people were checked every 3 months !?

[Cat1001954]

seems quite a long time I was diagnosed august I was going every 4 weeks do bloods a few days before now its 6-8weeks. Bloods few days before and my chemo drugs still from hospital. I went on weds just gone and my platelets were 417.

[Mwalimu in reply to Cat1001954]

It does seem too long to me. I'm checked every 3 months before meeting with my haematologist. Sallie

[Cat1001954 in reply to Mwalimu]

I would try and ask someone about this

[Kizzy03 in reply to Cat1001954]

Yhanks, yes I’ve just spoke to my GP and he’s happy to check my bloods in 3 months, if this makes me feel safer he said.

[Kizzy03 in reply to Mwalimu]

Thank you, yes my GP said they are happy to do bloods in three month’s time 👍

[Cat1001954 in reply to Kizzy03]

so happy for you as you say makes you feel safe xx

[summerdown]

Hi. I'm similar to you. I take 1000 on Mons, Wed and Fri. 500 on Tue, Thur, Sat and Sun plus 75 mg aspirin daily for ET. platelets are just over 500. BTs every 2 months taken at GP surgery. sent to hospital and hemo phones with the results. bloods need to go down to 450. I get my prescription from the GP surgery.hemo sets the dose. Hemo asked me to have a bone marrow biopsy at last phone call and I am thinking about this - bit reluctant to have this done. You seem to be having good care but perhaps should also be being checked by a consultant. Initially I was taking 500 HY a day but platelets not reducing enough. We will never be able to stop taking HY, but should be able to reduce dose when down to 450 - hope to get back to 500 a day or not take any at weekends. Good luck

[hunter5582]

If you are stable with your dosage and not symptomatic then every three months would be pretty common. Minimally, that would be a CBC and CMP. There are other tests that should be run periodically as well.

Noting that I did have the ET monitored by my GP for many years, in hindsight I would not do that again. Treating a MPN is beyond the scope of a GP. MPNs can manifest in many different ways beyond thrombosis. Most doctors have very little to no experience managing a MPN due to how rare they are. It is very important to be followed by a MPN Specialist even if you are stable. This is the only way to ensure optimal care. Many MPN Specialists would see a stable patient annually and consult with your regular care provider to provide your ongoing care. This is what I do now. I see the MPN Specialist every 6 months while my ongoing care is provided by a wonderful local hematologist. I also ensure that my other doctors are kept in the loop about the MPN and have the MPN Specialist consult when needed.

Just in case you have not seen it, here is a list of MPN Specialists.

mpnforum.com/list-hem./

[Bombers55]

Yes I too am seen and checked every 3 months, if at that time my count is over 5000K they then see me in a month to recheck -I have been on this now for over 8years

[patriciapugliese]

I was diagnosed in Nov 2021--see a hematologist now every 3 months on 1000 mg per day. In the beginning I was going every other week. No something doesn't seem right with that to me. Are you in the US?

[Kizzy03 in reply to patriciapugliese]

no I’m in the UK

[Mardigras]

Hi Cat,

My haematologist says that a check every three months is important.

Hope you get it sorted soon. Good luck.

Hugs Marci

[Mardigras]

Kizzy your bloods need to be checked at least every three months. Six months is too long. You should also see a haematologist every three months. Make a stand. With that much Hydroxy your platelets must have been really high.

If you don’t get any joy complain to PALS.

Hope you get it sorted

Hugs Marci

[Kizzy03 in reply to Mardigras]

Thank you Marci,

My GP has said I can have then done every 3 months if that’s what makes me feel safer.

My platelets were around early 800s but they went down very slowly as I took more tablets each time I was checked around every 6/8 weeks and the specialist nurse wanted them down to the 400s before she passed me over to my GP to get my prescription from and then have bloods done in 6 months!? But I suppose I feel ok !!

[Mardigras in reply to Kizzy03]

I think that you should be under a consultant specialist for MPNs. It would be very rare for a Gp to know enough to spot the signs of any progression. If you are in the UK there are plenty of specialists and a list is svailable.

Good luck Kizzy 😊