Hi all I have ET I am currently taking 1500 hydroxy 6days a week 1000mg on a Sunday and 75mg aspirin last bloods platelets were 519 they were previously 487 had bad urine infection so not sure if this is what raised them all my calls with consultant (a diff one every time ) all they say is we will up tablets I know if they up them again it will be the max I can take ! I’m in Scotland don’t have an MPN specialist at the hospital and I feel I’m on and off the phone to them end of story I haven’t seen anyone since I’ve been diagnosed it’s all over the phone just looking for a bit of advice as all I know is what I Google and read on the forum I feel as if I’m just left to get on with it things I have picked up on here help so much sorry for moaning but due my call from consultant today 🙄 and I know my dosage is high and wondering should they just keep upping tablets like this ? Xx
dosage of hydroxy: Hi all I have ET I am currently... - MPN Voice
dosage of hydroxy
the urine infection may raise platelets, so you could retest after the infection is long gone and see then. Most experts wouldn’t even treat platelets at that level unless you are symptomatic or have other risk factors. Also platelets can jump up and down by 100-200 for no particular reason. Usually most docs wouldn’t increase your dose on one blood result, they tend to insist on watching the trend over several blood test spread out a bit. Generally speaking less drugs the better unless necessary.
As our friend ainslie noted, it is normal for PLT to rise due to an infection (reactive thrombocytosis). It is also normal for PLT to vary by as much as 100K/day based on what is going on in the body. A change from 487 to 519 is not significant variance. What would matter is a steady increase over time above the treatment goal you have set.
It is worth noting that there is no particular value to keeping PLT < 450 for many people with MPNs. There is not a linear relationship between PLT levels and risk of thrombosis. Note that there is a linear relationship with risk of hemorrhage. The higher the PLTs go, the greater the risk of hemorrhage. Some MPN specialists use 600 when a numeric target is used. Others use the delta (degree of change) as a target. They key is that you need an individualized target that minimizes your risks/symptoms while balancing the risks/adverse effects you experience with cytoreductive medications.
Unfortunately, many doctors lack experience with MPNs and do not have the ability to individualize and optimize care. That is why consultation with a MPN Specialist is so important. Since there are no MPN Specialists at your hospital, you may have to go outside of the system for expert consultation. Others in Scotland have stated they had a good experience consulting with Dr. Mark Drummond in Edinborough. He is on this list mpnforum.com/tsr-the-list/ . While it can be a challenge to access MPN Specialist care, the benefits are worth it if there is any way you can make it happen.
It does appear that you may be maxing out on a tolerable dose of hydroxyurea. You may need to discuss whether you are refractory to hydroxyurea and need to consider other options. There are other options to consider, which would best be discussed with an MPN-expert provider.
Wishing you all the best.
thank you so much for your detailed reply hunter I do read all of your posts I will definately try and see the MPN specialist as I think it will be helpful it’s seems to be the consultants are more concerned on these levels when I speak to them today they were back down to 429 and I have read up on other treatments but will try and get some expert advice first thank you once again for being so helpful .
As usual, great reply's on this forum (thanks Ainslie and Hunter!). I'm also of the mindset that "Generally speaking less drugs the better unless necessary." From your note, it doesn't seem that you have been taking HU very long. I have a few data points I can share - but your mileage may vary.
I found that HU had a residual/cumulative effect on me over time. Which meant I could reduce the dosage after taking it for a month or so. Doc's deny this effect, but I'll show you my data (I track this all in a spreadsheet).
* I started with a PLT of 1,200 and an alternating HU dosage of 1,000 /1,500 a day. This reduced my PLT to 220 after 30 days.
* I was not tolerating HU all that well, so the dosage was reduced to alternating 1,000/500, and after 30 additional days my PLT was 350.
* Reduced HU further to 500 a day (after 60 days) and my PLT stabilized in the 350-400 range for the next year.
* After almost 2 years my PLT has risen into the 600's. Now I do 500 (4 days) and 1,000 (1 day) as a routine. I still hate my 2 pill days.
A PLT in the 600's is what my doc is shooting for, but I don't mind if I go up into the 800's. Taking less HU is better. That's just me. I did have a blood draw every two weeks for the first 3 months while we were figuring out the dosage. As mentioned, finding a good MPN specialist is key to treatment. Everyone is different and your dosage tolerance seems greater than mine. I like taking as little HU as possible to keep me in the PLT target range.
All the best to you.
Good post AP...from what I have gained on this forum regarding HU I dread the next phone call that says we need to move you onto HU.Now I'd be reassured it's manageable by varying the dosage.
Regards
Very good model.All friend with MPN should made their data history.
It is very useful to understanding how your body acceptance the treatments and in case you need to change the doc in future.
Cheers
hi I’ve been on 1500 a day for few years now 7 days a week on hydroxycarbamide
I’m on Apixiban and asprin and 80 mg of statin Amlodipine Irbesarten VK penicillin (no spleen) Pantroprazole and propanol
I’d love to reduce my medication nightmare I’m on phone consultation to
hi. I no longer live in Scotland but while I was there I was seen regularly by a haematologist in Oban but travelled to see Dr Mark Drummond at the Beatson in Glasgow at regular intervals. I also got a referral to see Prof. Claire Harrison at Guy’s in London. I live in Devon now and regularly see a haematologist in Barnstaple and my treatment is still overseen by Claire Harrison.
It is definitely worth travelling to see an MPN specialist and now I’ve been a Guy’s patient for quite some time I generally have telephone appointments which means I don’t even have to travel.
Best wishes, Jan
thank you so much for all your replies it’s so reassuring to know people are in the same situation With medication and yes I would love to manage the HU like you are AP , but I will try and see the specialist , Did you have to refer yourself to the specialist Beetle ? Or through your hemotologist ? I am in south Lanarkshire so it’s not any bother to travel x
I too have ET, 6 years diagnosed, now, late 50's. Canada. I am currently prescribed exact dosage of Hydroxy as you, with a daily 81 mg aspirin. I have had a stroke (age 42) and I have a blood draw every 3 months by a well respected Hema/ON. I had a sinus infection 6 months ago and it too raised my platelets from 410 to 570. Doc did not change my dosage. At my follow up appt., I was back down again. He said "likely infection" related. Wishing you all the best.
Thank you so much for your reply I was diagnosed a year and a half ago just routine bloods didn’t feel too good and this was when I discovered I had this I’m 57 , well now I know this is what can happen I know to expect a raise in platelets if and when I have some kind of infection It’s just worrying when your not sure about things but nice to speak to people who have the same thing wrong with them thank you once again hope you are doing ok x
I agree with everything posted here. I have been on HU for about 4 years now. My initial dosage was 1000mg/day. I switched mpn specialists a couple of years ago and my new doctor eliminated phlebotomies and reduced the HU dosage to 1000mg 3 days a week and 500 mg the other 4 days. My numbers have been perfect except for a few times when platelets rose due to an infection. My current doctor is keenly aware of the need to tailor drugs to the individual. It does seem that you are currently taking a very high dosage of HU.
Good luck moving forward. I hope you are able to connect with an MPN special soon.
thank you so much for your reply and again good you are ok on the dosage you are on now amazing the things you learn when you speak out and ask a question I’m so happy that I asked you all now instead of sitting worrying and yeah I will post when I get to see the specialist and let you all know what the outcome is hope you all have a lovely weekend and keep as well as you can xx
ET Hydroxy/short break - Update
Confused! Do I have to follow up everything from my consultant with my GP?
Not diagnosed, but suspected 
starting hydroxy as pathway to Rux
Hydroxy - reluctant to use
