Update

[Oscarsboy]

Good morning everyone, hope you are all doing well. Just a little update from my question last week about continuing symptoms/hydroxy effectiveness etc. Just a little update. I had bloods done on Monday and the Haemo Nurse called me this morning to say my platelets are now back in normal range at 387 and all bloods are very good. I do wonder if some of the symptoms I have been experiencing, and still am experiencing on and off are due to having been anxious too and certainly pushing myself to the limit over the Christmas period. I tend to forget that I am coming up 74 and still think I can do what I did at 44!! However I am sure that is a common trait for many of us. I know many of the symptoms are very similar so feel it is possible that it sort of sandwhiches itself together and becomes difficult to differentiate, and possibly throws your system out of kilter. It is easing so the thought of knowing platelets are now in normal range, and no changes to doesage on hydroxy, showing a slow and steady drop, I am very happy with that information. Thanks everyone.

[Cja1956]

Great news regarding your platelets! My platelets are stubbornly staying at around the 700’s. At the moment, I only take Hydroxyurea and baby aspirin. After my last visit, my doctor mentioned starting Peg interferon, but I’m hesitant to try it because of the potential side effects. I’m feeling pretty good right now, so we’ll see.

[Oscarsboy in reply to Cja1956]

Yes that's what I take too, and am glad they did not recommend increasing any further. It is a difficult decision to make isn't it because if Hydroxy suits you feel you want to stay with it. For many it doesn't suit I know, and Peg seems to be the same. I am on 9 a week at the moment.

[Cja1956 in reply to Oscarsboy]

I take 14/week. Because I have post Et Mf, I was also taking Fedratinib for 2 years. But I hated being on it because I was always so fatigued. I went off of it 3 months ago. So now I only take the hydroxyurea, and I’m feeling much better even though my platelets did increase.

[Oscarsboy in reply to Cja1956]

If you feel fine and its holding steady it must be better than feeling really rough on something else. Hopefully they will let you stick with it in the hope the plaelets may continue to fall/steady. I really hope all goes well for you.

[Hopetohelp in reply to Cja1956]

Just to say if you start peg, some like myself have hardly any symptoms and it’s nice to know there are other options waiting for you should the hydroxy not work. Good luck

[Conneryfan]

Lovely to hear this. X

[Hopetohelp]

Thanks for sharing update. Knowing figures are good really helps mentally and it is easy to put certain things down to our condition when sometimes it is simply down to age.