Stopping Hydrea

[May2019]

The country I am in has a nationwide supply problem with Hydrea and I am about run out. I am on 2 x 500mg a day. How long does it take for your platelets to increase when stopping hydrea? I was at 1.5mil when started with Hydrea and now am at 300k. What is anyojes experience with suddenly stopping Hydrea. I will get hold of doc next week to ask fto substitute but for now am on vacation.

[hunter5582]

I expect the answer to your question varies by individual. When I discontinued HU I titrated down gradually. It took several months for PLT to return to baseline. There are alternatives to HU. I actually did much better on Pegasys. It was more effective and easier to tolerate than HU for me. Other options include anagrelide and ruxolitinib.

Hope you get things sorted soon.

[Anag]

anagrelide is good. I believe Pegasus takes a while for the body/platelets to respond.

Just a thought. HU is not that expensive. Perhaps you know someone in another country that can send you a bottle or two until the delivery problems are over. I’m not sure about HU and sensitivities of this medication to heat. It would be worth a try if you are satisfied generally with the HU. 😉

I live in Austria, but was able to buy medication in Greece (on vacation) for my brothers son, and sent it over to the states. The price was also a third less than in the states. He was tickled pink. 😁

[jointpain]

Hello May2019. My wife has MF and is on 1 hydroxycarbamide three times a week along with 3 Anagrelide a day. When she first took hydroxycarbamide her platelets were touching 2million! At times her platelets are above normal and sometimes well below normal range. When they have been at @50,000 she is told not to take anything and after a week or two the count can reach over a million.So that's the answer to your question, but as everyone is different, I wouldn't expect your situation would be the same. But I would suggest you go to A and E and explain your requirements. They maybe able to find some hydroxycarbamide at a nearby hospital. Wishing you all the best.

[Ayla13]

Last month my hemo/ oncologist lowered my 1000mg M-F and 500mg on weekends routine to only 500 mg daily to see if I felt less fatigue . We tried the lowered dose for one month and checked my blood at the end of the month . I felt great, unfortunately my platelets rose from 530 000 to 980 000 in one month ☹️ so now I’m trying alternating one day 1000mg and one day 500 mg . I’m 65 next month . Calr 1 . I was told that with Calr mutations platelets run higher than other mutations so I don’t panic when they are around 500-600 Good luck . 🤞

[william-Indo]

Are your country allow for import meds...?Check the regulation prior.

You could easily import HU from big pharmacy in India

[Munster5]

what country are you in? I am facing a similar problem in Ireland - it isn’t available anywhere - I have about a months supply left !!

[May2019 in reply to Munster5]

I am in Spain.

[Wyebird]

oh how worrying for you. The annoying thing is I had quite a few of anagrelide and hu left when I started Peg. Even over seas medical charity wouldn’t take them.

I’m on Peg and it’s amazing for me.

First week I stopped anagrelide,( 9 a week).

Second week I stopped hu( 17 a week) Where do you live?

[Lenten]

what country do you live in that you cannot get Hydra?