On 2/19/2008
iraqvet08 wrote:
Hey there,
I am actually located in the U.S. The more I am reading, the more I also freak out. I have work, a wonderful girlfriend, and have many babies to make. Thinking about maybe sticking to an aspirin for a month or two. Then starting Hydrea. What are your side-effects from this medicine? I guess I'm in the same boat, wanting to prevent fibrosis. BMT are easier said than done. Researched it and the mortality rate is pretty high. (10%) ( city of hope dott kom ) I guess I'll just stick to the meds and use that as last resort. In any case, praying hard for everyone affected by an mpd or other illness.
Shaun
Hello Shaun
I was diagnosed in 2006. Was fairly laid back about it all for nearly a year and then, after several long-haul flights to the States and Australia, got back to the UK and my platelet count had risen alarmingly. Got no explanation and was advised to increase hydrea to 2000mg a day.
I do not want to alarm you further. We are all different and react differently to medication. Many of the symptoms I was experiencing seemed more of a nuisance and irritating than of serious concern. I made excuses for them (for example I blamed my itchy skin on a change of shower gel). I now know better. My side effects included influenza symptoms (aching joints, sore throat and stuffy nose) nausea, diarrhoea, headaches. I also developed a hoarse voice and was constantly trying to clear my throat. I have dry eyes and vivid dreams. Indigestion was put down to aspirin.
My new doctor has been very patient, more understanding and willing to talk through all of the above side effects to see if they can be reduced or eliminated. I now split the dose of hydrea, taking half at breakfast and half 5hrs later. I take 75mg soluble aspirin 1 hr after the 2nd dose of hydrea. He has also advised me to take Ranitidine 150mg to lessen the adverse effects of prolonged use of aspirin. I have been on this new regime for 3 weeks and feel much better.
Do access www.mpd-support.co.uk. The editor of the newletter is Ann-Marie Jahn. She is young, like you, and a fellow sufferer. She wrote to me after I joined (via the website) and I believe she is only taking aspirin at this stage. I gather this support group gets emails from the US and Canada because it is such a good source of information on research, drug trials, new treatments and understanding of this mysterious illness. I think the mortality rate you quote is for newly diagnosed patients over the age of 65years.
I hope you can find the strength to be optimistic and live life to the full.
Manuela