Mds/mpd overlap

[Nurset]

Hi

I have recently commenced hydrea to reduce platelets but I’m worried about potential fall in Hb. Has anyone had experience of this

Nurset

[Osteomyelio]

Yes, my hemoglobin went down after HU (hydrea)

[Nurset in reply to Osteomyelio]

Can I ask how they treated that?

[Eadaoin]

I recently had to take Hydroxy to prepare for a serious heart operation and needed my platelets to reduce to a very low level. The white and red cells (and Hb)also dropped. Soon after discharge I had an iron infusion to improve the Hb. It has taken 5 months for all my blood results to return to an acceptable level - though my platelets are still rising and will presumably stop at their usual high ET level. I also have an MPN/MDS overlap - not many of us about 😀

[Nurset in reply to Eadaoin]

Thanks Eadaoin

That’s very helpful. How long since your diagnosis?

[Eadaoin in reply to Nurset]

21 years. I am now 76. The ET was found by chance in tests for other things in 1998. The MDS overlap was found a couple of years later though it is likely to have been there all along. I hope you are receiving good care and you feel confident in your doctors. How long since you have known about it?

[Nurset in reply to Eadaoin]

I’m only recently diagnosed and assumed prognosis was very poor so thanks for that.