Do these results suggest that the MF is progressing?

[jointpain]

For the past 3.5 years my wife has been stable platelet wise with her counts at around 300 while on hydroxycarbamide every other day and Anagrelide 3 times a day, when things have gone awry it's been because of major bleeds or "experimentation" by her haematologist consultant. Yesterday's blood tests show a marked drop in platelets and an increase in white cells. Platelets down to 90 and white cells up to 32.8 Hb is 111 RBC 4.32 She is feeling fine though a little tired, and does exercise, still suffering a bit from the shingles she had over Christmas.

[Pte82]

jointpain, is your wife being treated by an MPN specialist? If not it's time to change.

[Paul123456]

When was her last blood test? Hopefully she needs to reduce her meds although the rising wbc is a concern. I think you should seek a specialist MNP hem if your current hem is unwilling to investigate. Sounds like a BMB would be advisable.

[jointpain in reply to Paul123456]

As said in my question the last blood test was an hour before the results were given to us. She is stopping the hydroxycarbamide for a week and having another FBC on Wednesday next week. From previous experience a week without hydroxycarbamide and her platelets go ballistic ten days and they are well over the million!

[Paul123456]

Sorry I meant the last FBC before this one.

[jointpain]

Platelets were 232 two months ago, two months before that 149 two months before that 355 when she was told to take 5 hydroxycarbamide a week but ended up taking 4 a week instead of the 3.5 just for the second month, when the platelets dropped to 149. Looking back at the past year, between bleeds Covid vaccinations and hospital admissions when her drugs are often withheld. It does seem the Covid vaccinations have a marked and possibly long term effect on platelet numbers the more she has.

[SammieLou]

HiI cannot answer this but I know people will on Facebook if you join these sites too. Many are extremely educated in this field and helpful

[Orangeboykitty]

The Anagrelide might be the culprit. My platelets were way too high before hip replacement surgery and I was given Anagrelide to lower them. It worked WAY too well. They dropped to the point where surgery was unsafe. The doctor told me to stop taking it and my platelets rose to a reasonable level. After the surgery I still had to take it but at a very reduced dose.

[jointpain in reply to Orangeboykitty]

I understand Anagrelide really only reduces platelet numbers, while hydroxycarbamide reduces all blood cell counts. Trouble is, if she relied on more hydroxycarbamide to reduce the platelets they would reduce the white cells which is possibly good, but also reduce the red cells which would mean anemia. When she was upped to four a week she began losing hair, so was glad to go back to 3.5 a week. Thinking about it, it may be an idea to reduce the Anagrelide a little, as you say. That could bring up the platelets without decreasing red cells and Hb.

We'll consult with her consultant next week after her FBC on Wednesday.

[Wyebird]

Wow her body seems to be very sensitive to medication change. If in doubt ask for a second opinion. Good luck.

[jointpain in reply to Wyebird]

I think you are right over the sensitivity of her blood system, could be the result of having her spleen removed.

[hunter5582]

It really is impossible to say what the cause of the change in the blood cell counts is about. With the WBCs it is not just about how many. It is also about their quality and the balance of what types of WBCs. There are a number of factors that influence leukopoiesis. Too many to say what is gong on without more context. Likewise with the drop in platelet levels. It could be as simple as needing a change in medications.

You have a valid reason for concern given the change in status. If your wife is not already seeing a MPN Specialist, now would be the time to do so. Just in case you have not seen it recently, here is the list. mpnforum.com/list-hem./

[jointpain in reply to hunter5582]

Thank you Hunter, problem is there are no MPN specialist nearby, the head of haematology we do see does know and is in touch with MPN specialists both in Wales and England.