Alternatives to HU

[liarose]

What alternatives to hydroxycarbamide or additions to HU have people experienced when it has stopped working efficiently.

[Nickthedevil]

When my platelet count started rising over the last few months, despite increasing the HU, they said that if it continued to rise the alternative would be be anagrelide. Fortunately at my last appointment it had dropped so they are waiting to see how it goes.

[Malaika]

Hi Hu stopped being effective for me after ten years even at 1500mg daily and I could not tolerate an increase. I am now on Interferon which is working very well for me. I had a few side effects at first but these have now abated and I am so pleased with the results that I am willing to put up with any minor inconvenience I sometimes have. I did try Anagrelide quite a few years ago but it really didn't suit me at all. Please remember we are all very different and what is good for one person may not be for others.

Wishing you all the best whatever you decide.

Malaika

[jeanr in reply to Malaika]

Hi Malaika, Could I ask you about Interferon? I'm on hydroxy, but I am about to ask my haematologist later this month if Interferon is supported -or if he would apply for me to go on it. You said you had a few side effects- can you tell me how bad it was, and how long it lasted Thank you, Jean

[Malaika in reply to jeanr]

Hi jean

First of all remember we are all different in our reactions to drugs also I am on regular Interferon. The first jab caused shivers shakes etc but only that night, I take two paracetamol to help with that and now just sleep through anything that may be happening. I also had some nausea but my hem gave me a pill for that too! The thing I found the hardest was hair loss not all of it by any means but noticeable thinning. With the help of a very clever hairdresser and some patience that too has resolved. No I haven't got long flowing locks but I am most happy with my hair as it is now. As I said before in my case I have now got the best blood counts I have ever had so glad I persevered as taking the Hu was much worse in my opinion although it did me good for many years. Please feel free to ask anything else I am willing to share. Also please let me know what you decide.

Wishing you all the best

Malaika

[jeanr in reply to Malaika]

Hi Malika Thank you very much for your reply and your kindness in sharing your experiences. It is much appreciated. I had read about the hair thinning. Even on hydroxy I'm noticing hair texture is changing quite a bit. I'm glad you are managing well by taking paracetamol, and your counts are good now. I'm doing okay on hydroxy, although some days I do feel a bit crummy.

I see my haem late September so I will keep you posted and see what his thoughts are too.. With all good wishes and thanks. Jean

[harleydavidson]

Hi Liarose

I have had PV for nearly 11 years and was only on aspirin until last November. I was lucky enough to be given a choice and chose the Interferon. I have had very few side effects, not even the flu like symptoms. It has worked so well for me that i went from 3 injections a week to 2 and now only need 1. I know that we are all different, but I have been so lucky. I wish you well and hope that your next meds work for you. Mel x

[justin33]

I have had ET for about 14 years. Have been on both Hu, Anag, and aspirin. Over the years these drugs couldn't control my platelets. I have now been on Jakafi for about 18 months and so far it has been a wonder drug for me. Platelets are down to 570 and the terrible itch I suffered has disappeared Good luck!