Dropping platelets?

[Kerri2]

Discontinued HU for ET due to anemia Dr said we would monitor monthly bloodwork and restart if the platelets reached 500. Slowly climbed to 480 but then dropped to 400 this month. Off meds for 6 mos and now mild anemia. Anyone else taken break from meds?

[BeachTeach]

Also took HU for ET. Dr. had me on a very high dose due to high/climbing platelet level. Side effects mounted: black nails, mouth sores, fatigue, anemia, low WBC.

I went to another hematologist for a consult and I now see only him. He took me off HU. Platelets dropped, side effects disappeared. Continuing with low dose aspirin.

BUT platelets have now started to climb so we are monitoring and may need to start a LOW dose of HU (hope not).

I’ve been dealing with this for 26 years (now age 63).

[Annushkah in reply to BeachTeach]

Hello! Just found this site. 26 years!!! I am sorry. What keeps you fighting?!?!

[Kerri2 in reply to Annushkah]

Et seems to be the least serious of the mpns so for that I am truly thankful. I don't have a lot of symptoms just taking low dose asprin now and actually feeling pretty good off meds.

[Annushkah in reply to Kerri2]

How were you able to get off the hydroxyurea? Didn’t your platelets just shoot up again and cause symptoms?

[Kerri2 in reply to Annushkah]

No while off the meds I have monthly draws they would rise 14-20 K but didn't shoot way up.

[Kerri2 in reply to Kerri2]

Not as quickly as they dropped when I started HU - that stuff works quickly.

[BeachTeach in reply to Annushkah]

It hasn’t been awful so far. I’m worried that some day I may need a bone marrow transplant.