I have essential thrombocytosis numbers have decreased by 70 every 2 weeks shouldn’t my dose be decreased

[Petsch]

I have Thrombocytosis numbers now at 375 decreasing by 70 some points every 2 weeks

Should my dosage be decreased since dr wants another test in 3 months. Won’t they drop too much

[fee13]

Yes that does seem too long to wait in my opinion. Perhaps you should discuss this with your doctor & ask for monthly test.

[Mwalimu]

How long have you been on medication and what medication? Figures for platelets vary considerably from time to time so don't get too fixated on them. However, if patients have just started medication or have a changed dosage, they are usually seen again in under 3 months. (In my case, it has always been 6 weeks but that may differ from haematologist to haematologist.) You could talk to his/her secretary explaining your worry and see what is suggested. Sallie

[Wyebird]

Mwalimu has given sound advice.

[Mazcd Partner MPNVoice]

hi Petsch, you could speak to your haematology nurse specialist at your hospital about this and ask their advice. Best wishes, Maz

[Petsch in reply to Mazcd]

I have and he never changes.

[Petsch in reply to Mazcd]

I have spoken and I’m the one who tells him what I want. Wants to keep me on this dosage for 3 months. I’m worried they will drop to low.

[Scrollernut]

My count went down from mid 500’s to mid 250 in two weeks on daily 500 mg Hydrea and full dose of aspirin and has stayed for 2 weeks so I’m now on every ever day with blood work in another month. Here’s hoping it’s still down. I was afraid it would go too low on every day.

[Petsch in reply to Scrollernut]

R u on every day every other and who recommend you or the dr

[Scrollernut in reply to Petsch]

Went from every day to every other day. Same 500 mg and aspirin. I asked the doc about going down hoping that would help with the nausea and dizziness. He said we could try for a month to see if the count stayed down and if it went back up then I had to start back on every day. He said if nausea didn’t go away he would get some anti nausea meds. And dizziness....well... it seems that is a pretty common complaint. I am trying to increase water. 😏. When I have nausea I sip on flat ginger ale and eat bland food...lots of crackers. Thankfully it only happens one or two days a month and just usually one day. Makes me tireder than usual so I watch a lot of old movies! I’m a widow so don’t need to worry about anyone other than my gremlins and dogs love to cuddle!❤️

[Petsch in reply to Scrollernut]

Thank you. Hoping your numbers remain low

[Scrollernut in reply to Petsch]

😍

[Petsch in reply to Scrollernut]

I was on every other day which lasted around 9 months. They then went up and my dosage was changed. But at least I had a reprieve from meds for a while.

[hunter5582]

Standard protocol for Hydroxyurea/carbamide titration is labs every 2 weeks until stable blood cell levels are achieved. Assuming that is the med you are referring to. Please do check with the hematology department. Would suggest that if you have not already done this, to consult with a MPN-Specialist, not just a regular hematologist. Here is a list mpnforum.com/list-hem./ .

All the best to you,

[JackLina]

Hi Petsch. I have read the replies as well as your email and wondered if you have ever requested a different consultant. My life has changed radically since I moved to another hospital and haeme. Yes, I need to travel but I have suffered 2 years of misery and fear due to a lack of understanding. I too had to suggest everything to him and nothing according to him was anything to do with the condition or the drug.

Now, I am happy and positive and going from strength to strength because I am spoken to and listened to. Questions are answered and I am taken into consideration. It's like emerging from a dark hole. I wish you well.

[Petsch in reply to JackLina]

I just contacted my original dr whom I loved. She had moved to a different office but it’s worth the ride to have someone I trust. She is also doing virtual appointments so yes I’m doing that now. Thank you

[JackLina in reply to Petsch]

Good for you. I hope this is a positive move for you. You can of course ask her to refer you to a consultant for a professional opinion from a specialist. All the best P.