I know that there are others who, like me, have just started on Hydroxy. And that many MPNers have expressed concerns and anxieties about commencing drug treatment.
I just wanted to say that I had my two week check and my platelet count has tumbled from 1700 to 950 in a fortnight. In the real world this is still a fairly appalling count (😱) but from my perspective it’s brilliant (😁)!!!! Obviously I’m hoping that it will continue to fall until it reaches normal range. (And then stop!) I realise it might plateau but there is plenty of scope for dosage adjustment. I’m also relieved that while my haematocrit showed a small increase it was still below the threshold for venesection. Double yeah!!
I’m not aware of any side effects. I haven’t gone looking for them. I think some initial tiredness etc was probably due to the anxiety and turmoil that can come with diagnosis and treatment change. Ultimately, with a platelet count like mine, starting treatment was a no brainier. I’m just hugely grateful and relieved that the drugs seem to be doing their job.
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Ebot
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Your experience mirrors mine when I started hydroxy 4 years ago. Quite unbelievable that the platelets reduce so dramatically and even more so that when you get to an acceptable level they don’t continue reducing😏 bit of a conundrum that one! I started on 1 tablet per day and over the 4 years dose has changed to 1 per day with 2 Saturday and Sunday to my current dose of 1 per day and 2 on Sunday. Small tweaks but a good outcome. I also have suffered no side effects at all.
Hi Judy. Yes, it’s good to talk about the fact that these drugs can be lifesavers and that we seem to emerge unscathed from ingesting them! I don’t want to count my chickens etc but I feel optimistic. Xx
P.S. Hope you have thawed out. Brixham got hit pretty hard.
Hi Ebot, hydroxy works for more people than not we just don’t always hear about the successes. Yes, sun shining today. I quite enjoyed the couple of days of snow! But then, I didn’t have to worry about getting to work. I went for a couple of short walks and everyone seemed really cheerful. X
So true Ebot, took a little while for mine to come down, but these days they are all in the normal range have been for well over a year now, and the funny thing they do not seem to alter very much when I have them checked every four months, the only times they sometimes alter are when I have an infection or a cold of some kind.
The dose for me these days is 1 every day and 2 on Sat and Sun has been like this for about the last four years now, was diagnosed nearly five years ago with ET, and like Judy glad to say no side effects.
Hi Jean Glad HU has worked for you too. This is such an unpredictable group of diseases. Oddly I find stability slightly unsettling! But looking forward to it and very happy to get use to it! Keep well.
That is wonderful news Ebot, I am delighted that the wonder pills are working so well for you! Really good to be able to make such a difference so quickly. I'm looking forward with interest to my first 2 weekly blood test after starting HU when that comes around next week.
Good luck! I hope the HU makes a difference to you too. Have to say I was a little anxious that there would be no change. I was warned it might take a month to six weeks to see if it had had an impact. Anyhow we’ll see what happens on my next visit. Hopefully i’ll find out what my target is. All the best to you.
Hi Ebot that's fantastic news . So good to hear its working so well for you 😊 I had my 2 week check last Thurs and unfortunately my platelets were a little bit higher than bloods done on 1st Feb. All we can think the reason for this is I may have had a big spike in levels between 1st of Feb and starting on meds on the 19th of Feb. Back to hospital in 2 weeks so fingers crossed they will start to really come down.
It is scary having to start meds but its worth it when they are doing their job well.
Hi Mandy. It’s interesting. When drug treatment was mooted out of the blue last year by a young reg I was caught completely off guard and had a melt down all over the department(!). But by the time I was prescribed the drugs a fortnight ago - and with my platelet count scaling new heights - I was completely chilled about it. Obviously there’s a bit of anxiety the first few times you put that capsule in your mouth but to be honest I’m just thankful. And I look kindly and gratefully on that box of Hydroxy! Hope your platelet count gets the message to head south! All the best.
Hi ebot , worked well for me too, stated in 1995 platelets were 2000 + took 17 hu tablets a week but now on 10 a week and platelets now 350 or so . no side effects except dry skin.
I think I am now one of the oldest an longest ET case on this website , any chalengers?
Thanks Maz. I hope so. Sometimes it’s all too easy to get caught up in the ‘scary stuff’. We can lose sight of the fact that for the vast majority of people In the vast majority of cases these drugs have a major beneficial impact with no or little side effects.
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