Pre mf

[otisthedog]

Does anyone take Hydrea for pre fibrotic mf with high platelets?

[katiewalsh]

Yes I do & have for many years. Katie

[otisthedog in reply to katiewalsh]

How can you tell,if there is any progression of disease? Also is your rdw elevated at all?

[katiewalsh in reply to otisthedog]

Hi. I’m sorry but I don’t know the answer to your question of rdw. Frankly I don’t even know what it is. Because my labs have stayed consistent and only constitutional symptoms Is mild fatigue, they aren’t concerned. I’m told it can progress very slowly or sometimes very fast. I don’t know the frequency of each. Katie

[Stephen399b]

My original diagnosis was a balance between ET (Jak2+) and pre fibrotic MF.

I have taken HU since then (2016), together with asprin and now Clopidogrel as the Asprin upset my stomach.

I understand this is pretty common medication?

Stephen

[otisthedog in reply to Stephen399b]

How can you tell if there is any progression of disease? Also is your rdw elevated at all?

[Stephen399b]

I don't have an RDW measure, but all my red/haemoglobin counts are generally low and LDH count is high. I have always been a bit anaemic.

I have also recently been diagnosed with Prostate cancer as well, so monitoring just about everything!

I have had 2 BMBs since 2016 and there has been no evidence of progression.

Stephen

[otisthedog]

Thank you for the information. I guess it is wait and see. Best of luck to you. Wishing you good health.

[Leighcox85]

When you change to mf you usually see a increase in symtoms I got really bad nights sweats and bone pain my platelets dropped dramatically I had a bmb and it confirmed mf they then changed my meds from hydroxy to rux and I have been on that ever since but recently rux has stopped working for me I was diagnosed in 2009 at 24 iam now 36 hope this helps

[otisthedog in reply to Leighcox85]

Thank you for the reply. I wish you all the best. I am on Hydrea but platelets just dropped from 460 to 360 in three weeks. 500 mg daily.

[MarPapa]

Hello. I have been with Hydrea for many years and I have minimal side effects. I pay close attention to my diet and exercise as much as I can. I just have some skin issues and I drink a lot of water for them. My platelets are 550 and when they increase we increase the dose of hydrea

[otisthedog]

Thanks. I am on HU platelets from 460 to 360 in three weeks a little worried. 500 mg a day.

[neela2020 in reply to otisthedog]

Your platelets still in normal range. Your GP may suggest lowering the dose in next visit..if no other symptoms. Adjustment of dose is common.

[Kriddle01]

Hi there, I'm 36, I have pre-fibrotic MF with an enlarged spleen, my platelets are 690ish. I recently started on 2xtabs of Hydrea daily plus aspirin. I also have bronchiectasis which is a chronic lung condition. My symptoms are fatigue, weight loss, skin issues, vision disturbances and headaches. It's still early days for me as was diagnosed last year, so I've got lots to learn. Have you started? If so are you handling it well? 😊

[otisthedog in reply to Kriddle01]

How were you diagnosed? Yes I tarted HU but my white cells are running low.