ANEMIA WITH HYDROXY

[BluePeony]

Greetings, all. I’m just wondering what, if anything, can be done when the red and white blood cells are killed, off. I’ve done well during my 8 months of HU, but fatigue and ditziness are increasing as the levels drop.

[Mazcd Partner MPNVoice]

Hi Bluepeony, do you have a specialist nurse at your clinic, it might be worth speaking to her/him for some advice. best wishes, Maz

[BluePeony in reply to Mazcd]

Thank you for the good wishes, Maz. I don’’t see my doc at Mayo until July, but I can write to her nurse. I get blood tests monthly, which have been great in regards to a low HCT. I’ll inquire about the extreme drop in RBC’s and WBC’s.

[hunter5582]

Would have wonder about your dose. Perhaps adjusting the dose or even switching to something else. Best to consult with a MPN expert provider in a case like this.

[BluePeony in reply to hunter5582]

I think I’m on the lowest dose, but I will ask about that. I appreciate your response, Hunter.

[Stephen399b]

I have ET Jak2+ for last 3 years. I have been on slowly reducing levels of HU and platelet levels are now fairly stable at 10x capsules/week. However I have been consistently anaemic as red cells have reduced as well (whites low, but ok). I have found that several types of iron tablets have had a bad effect on my digestive system and on the advice of my haem have been taking 'Pregaday' the tablets for pregnant women. These have stabilised the iron levels, still low but ok. Causes some amusement in our local pharmacy!

I do get tired, no diziness, and I still get stomach cramps from time to time, but this may be because of other issues.

Can I suggest you try and find an iron supplement that suits you and at least get on an even keel.

Best wishes

Stephen

[BluePeony in reply to Stephen399b]

Thanks for the information, Stephen! I tried iron tablets a very long time ago which upset my system as well. It is good to know there are alternatives now. Best wishes back at you.

[Andyls]

Not sure what dose you are on. I began with one hydroxy capsule per day. After about 8 months, my platelets were in the low normal range, but red and white counts were too low, so my dosage was changed to 4 per week (I do Monday, Wednesday, Friday, Saturday). For the past 6 months, this has kept all my counts within the normal range. We all respond in different ways to medications. It would be good to ask your prescriber if you should consider a more "creative" schedule.

[BluePeony]

I hadn’t considered the possibility of skipping a day (or two). I take 500mg daily. Hopefully my doc will help me adjust the dosage, as platelets and HCT are fine at this point. The low red and white counts are definitely getting my attention. Thanks for the suggestion.