Platelets coming down but hematologist wants to increase Hydrea

[mbr8076]

Hi All,

I was happy to hear my platelets came down another 100k to 655k (started at 1 mil before starting Hydrea 5 weeks ago) but the hematologist wants to increase the tabs of Hydrea by 3 a week. Just wondering if anyone else had this increase and if it was effective. He does not want to see me for 2 months.

[nanmc]

I have had my platelets drop from around 750 to around 400 over the last 10 months the dose was upped from the initial 2 daily and am now on HU x 2 then 3 alternate days. I was at the clinic this week and as they were slightly up again having been down in December, the registrar wanted to up the medication to 3 daily. I have been up and down over the last few months due ( I believe) my husband being on palliative care at home and then passing. I know they are looking to stabilize the levels so I asked why and she mentioned getting platelet figure down to 250 which others may well achieve ( I am sure they will tell us) this level has not been mentioned to me before. The range is 150-400 for platelets

I am wary about taking any medication so keep a close eye on the figures. My haematocrit is at the top end of the range (0.36-0.48) at 0.45 so I asked to remain on same dose and am going back to clinic in 8 weeks.

As to whether the dose will effective it will depend on you keeping fit, hydrated, eating well etc. everyone's body will be different. I believe the most important thing is being able to have a good quality of life and being able to get on with living. I had no symptoms when diagnosed last year but since then allsorts of aches and pains which I would have put down to my age 73. There are lots of us on here who will give you their take on this disease. All the best.

[mbr8076 in reply to nanmc]

Dear nanmc,

I am so sorry for your loss I agree that staying hydrated, eating well and exercising will help with my well being My hematologist states it is a matter of tweaking the meds at this point. I wonder if ET stops progressing if the platelets are achieved in the normal range? I did feel some muscular pain this morning and wondered if it is from the HU increase:/

[isimmy]

I started on Hydroxy 500mg in September when my platelets were 825. There was an initial drop to 650 in the first month before the reading stabilised. My dosage was then increased to 500mg and 1,000mg on alternative days and the platelets count dropped a further 100. Again the level stabilised and in January the dosage was increased again to 1,000mg. At the end of March my platelet count was 412 against the target of below 400, so I am hoping that this will be achieved by my next appointment with my Consultant in two weeks time.

Like nanmc has said I am now more careful about my diet, have cut back but not completely eliminated my alcohol consumption and make sure I stay hydrated by significantly increasing the amount of water that I drink each day.

I was initially diagnosed with ET back in 2004 and other than 6 monthly check ups it had hardly any impact on my life until I commenced the Hydroxy. I am still getting used the drug and have a couple of issues but am determined that I will get back to enjoying my life as previously.