Hi all. Have just had my Heamo checkup today. Platelets been climbing over the last few months. Today up to 875. Am on 13 Hydrox a week and aspirin. So going to up my dose very slightly. Have any of you had platelets going this high, if so what was the treatment offered? Thank you for reading this.
Sandy
Hi Sandy. Yes to your question my platlets tore to similar levels from 470 on diagnosis. I started with 7 per week and rose to 14- at first we kept adding pills but they kept rising slowly, eventually they stopped and started falling to around 350. I now take 9 and stable 350 count. Symptoms are less and I feel fine. ( the odd foot problem that's all ). Night sweats are gone😊.
Yes I have been diagnosed with ET for ten years all of which I have been on HU and yes have gone up and down all over the years and my dosage is then adjusted up and down accordingly. I think for many with ET this can be the pattern and so many factors effect our platelets anyway that it is variable - earlier this year my levels were the highest they had been for 5-6 years and when I was checked 6 weeks later they were then the lowest they had been for a good few years!!! I know it's hard when you get a higher reading as it worries you and is a disappointment but it's the nature of the beast so you will improve again. Only other thing I find does help a lot is good diet, lots of water and cut right back on sugar as it seems to really play up our condition and the joint pains etc. All the best.
Thank you. Very helpful reply, it's great to get feedback from u all it puts your mind at rest hearing from u.
Best wishes Sandy
I was diagnosed with ET about 5 or so years ago, my platelet levels have been up and down. They went over 1000 when I got to 60 so I was put on Hydroxycarbamide then, my dose has changed several times, the platelets were stable for months then jumped up, so my dose was increased, level for a while then a couple of months ago up again, so I am currently on 17 Hydroxycarbamide a week, but I am monitored more often when they are unstable, they had gone down a bit last time so hopefully down a bit more when I go back in a couple of weeks. I am also on aspirin. So changes in levels seem par for the course. The side effects don't seem to change with the dosage, they levelled off after I had been on the drug for a while.
Best wishes
Lizzie
Hi stevesmum42, when I was first diagnosed I had ET and my platelets were a 897 ,now it has progressed to PV and my platelets are at 1.6 million and I'm only being treated with aspirin. I see my local hematologist once a month and I see an MPN specialist in New York City every six months and they both agree. My only symptoms are fatigue, itchy after showers, and I get Phlebotomy's done 1 to 2 times a year when my hematocrit goes over 43
Thank you ggrana. So helpful hearing form our friends on line.
Best wishes Sandy.
Hi ggrana,
I am like you with platelets around 1.3 million and just being treated with aspirin and the occasional phlebotomy. Why do you think so many people are treated with HU with lower numbers? Or are there other considerations?
I am changing doctors because I feel like she is unknowledgeable and is only covering herself when she suggests I go on HU.
digijools
I was diagnosed with ET two years ago my platelets have been rising and are about 845. I am 52 and been told im low risk and take aspirin each day. I feel fine , few night sweats but not sure if that's ET or my age. Had migraine since I was 20 and have an ongoing battle with SCIATICA. Im at the gym most days doing Pilates and tai chi, light aerobics and Zumba. I work full time , 12 hr shifts and work front line emergency services, so have a very stressful job, not the best for me. I don't get any concessions from my employer and keep asking should I , even im not sure as im not as fit as I use to be.
I see the consultant every 4 months and am back tomorrow, I get very worried about each apt which doesn't help so am just trying to take it in my stride. I have gone though every emotion going and have had depression but got my head around it. I still get bad days, usually before an appointment. So I went to the gym to do tai chi just to chill out. I know im luckier than most but one day will have to taken Hydroxea which I am dreading . Keep in touch with this page or group it really helps . I may need it tomorrow if my platelets have gone up again.
Thank you heathermc for your response. My you are a very busy active person, I am a lot older at 73, so the risk factors are greater plus I am diabetic. So the emphasis has been keep counts low, but I do worry as I am due to fly to France this week....so my tension is rising !
I , as many others understand your nervousness before hospital appts. Then if you have a good result you almost skip out of the hospital after. Unfortunately I haven't done that on my last couple of consultations..
I have been on HU for a few years now and I have to say it has caused me no problem so far. So don't get too worried about it if you are advised to start it. I do understand that it worries you taking it. I remember the first time I took it I spent ages just looking at the capsule saying "I don't want to do this " but I did and all fine.
I hope all goes well for you
Best wishes Sandy
Platelets rising 
Rising Platelets; Feeling wiped out
Platelets on the rise!
Platelets on the rise
Platelets slowly rising to 681 over a few years.
