My platelets are rising again on HU 1000mg 5 days 500 mg 2 days. Starting to think it's not working anymore. Haven't noticed any changes in symptoms. Feel very much the same.
I'm feeling very low..very down and very worried. I know I shouldn't..is it the season just not sure.
I know this journey is a roller coaster but seriously had enough of medication and nothing working.
Off to see the consultant today..
Thanks for listening
That amount of HU didn’t work for me either, as soon as my doctor gave me 1500 a day my numbers started to decline . My platelets were 1.6 million now hold steady 600-700.
It's very frustrating. I had my heamo visit this week too and mine are climbing over the last 6 months. I'm on 1000 mg a day and don't relish the thought of an increase. She is going to give it another 3 months and then we decide from there. I know how you feel as I worry about it too. Let's hope you have a good result
Sorry you are sad. I had problems with HU, so my MF specialist switched me to Anagrelide and I’m doing much better. It seems we all tend to respond differently. At first, anagrelide made my heart race, but I stuck with it and I’m glad I am on it.
Thanks..I think it's largely as I don't have anyone to talk to about it. I bottle things up.
They've increased my dose slightly. Said I've got a chronic sinus infection so I that could be responsible.
Drs made me feel alot better.
Thanks for your support.
Don’t despair, they haven’t tried upping your Hydroxy yet my lovely.iknow it’s so easy to think the worst with this condition but there is always something else to try. Cheer up dear Heather xx
Hi, my gorgeous wife, started on Hydroxy which didn't really work, then went on to a mix of hydroxy and Anagrelide which has been working for nearly a year now, keeping the platelets easily within normal range. Good luck with the consultation today.
Hi don’t give up . 4 years in and we are still tweaking my rising platelets. The last 3 months seem to have actually worked but now realised the spaced out feeling I’ve had could be the anagrelide I also take with the hu . At my last visit we decided to drop one of those and increase a hu. All good so 😃😃. So 4 years on my current dose is9 anagrelide and 17 hu a week. Platelets now hover 370-420. Maybe a combination would suit you.
How long have you been diagnosed?
Keep me informed I too get very despondent when meds are increased. I think only MPNers know what we are going through
Up and Down!
Come on everyone, buck up!
Treatment not working
Happy birthday (in more ways than one)
