Hello all you lovely people. My platelets have been rising slowly over the last few months. I went to see my haem 3 weeks ago and he increased the hydroxy because he was concerned that 545 was too high following my 'cardiac event' in April when I had two stents fitted. We had quite a heated discussion because he was very dismissive of side effects and symptoms such as fatigue and bone pain, in fact of most side effects. He more or less told me I should be grateful he put me on hydroxy when he did, as if he hadn't my heart problems could have been significantly worse. He may be right but I was very upset and talked about a referral to a specialist. Anyway to cut a long story short, we eventually agreed that I should increase the hydroxy and return in 3 weeks and if I still felt the same he would refer me on. He also agreed to see me himself each time in future, rather than see someone different each time, which is a big step forward. Anyway I went again on Thursday having taken the higher dose only to find that my platelet count had jumped from 545 to 646!! This appointment was much calmer and my haem actually took the time to talk about side effects and symptoms. We even discussed the possibility of transformation from ET to MF, though there are no signs at the moment.
He has increased the hydroxy dose again and have to go back in 4 weeks. The frightening thing was that he said it is possible that the hydroxy has stopped working and if it continues to rise he will have to consider changing it or adding something else to it. He said that the side effects of the other drugs could be much worse than hydroxy. This obviously worried me but at least he is talking to me now instead of brushing off my questions. My platelet count had been quite steady for two years and this has all come as a bit of a shock to me, especially on top of my recent heart problem.
Watching the forum on line on Friday went a long way to easing my worries. It's just wonderful to see such passion for their subject in doctors who care for people like us, and also to hear from fellow sufferers. Sorry for such a lengthy post, but it helps so much to share with you all. I know that some of you are much worse off than me but you always find it in you to be positive and thats what I am trying to do, although I am not always successful. Anyway, onwards and upwards as they say.
Thank you for listening, much love to you all