I had my 2nd hospital visit yesterday to find out that 500mg of hydroxycarbamide a day has not lowered my platelet count one bit. From today I have to take 1g per day. Feeling a bit disappointed.
Has this happened to anyone else and did increasing the dose work for you?
Sorry to hear your news, I had the same thing, the only bit of positive news is that I don’t feel any worse for doubling my dose. It sometimes doesn’t lower the dose to below 400 which would be good but it may stay at a reasonably lower figure than when you were diagnosed. My count has not moved for a whole year, but it’s stayed at about 600 which I suppose is ok. I wish you all the best. Raphael
Thank you for your message Raphael, good to know you didn't feel any different on a double dose, hopefully I shall have the same. I guess I was disappointed, ever the optimist, I did expect there to be at least a little difference in my platelets. Oh well, maybe next month.
Grace.
Dont worry it is normal on HU to take some time to get results and adjusting dosage to get the "right mix" for you - its very individual - in any event it can take 8 weeks or so for results to start to show. I have been on HU for 11 years and still get adjustments in dosage now! Your situation is normal and I bet next appointment you will see a good result!! All the best
Thank you for your encouraging message, you have put my mind at ease. Patience is not one of my better qualities sometimes. I shall keep on keeping on and see what next month brings.
Hi, exactly the same happened to me. 2 a day did work for me and within a week of dose increase I actually felt better.
After a few months it then got reduced slightly to 1 on a Saturday and 1 on a Sunday. just to stabilise my condition.
It did just that. Then I had a theory. If 1 a day did nothing did I really need 1 a day on Saturday and 1 on a Sunday.
With my haematologist’s agreement we dropped a Sunday completely.
WRONG THING TO DO!
My platelets rose and it’s taken a year to stabilise.
I’m now on 1000mg a day and 1500 mg on Saturday and Sunday. Platelets now under 400.
Hoping l will be able to drop a tablet a week soon.
I’m feeling really good even normal but the slightest bit of upset/stress sends my body into a quiver.
Chin up, It gets better.
Wyebitd
Hi Wyebird, Wow! Sounds a real fine juggling act has to be done once things get to a certain stage to avoid a year of trying to get it right again.
I won't stress over the increase having read about the improvement in others here. Thank you for your message and wishing you as few quivers as possible.
Grace
I have been taking 1000 for five days and 1500 for two days per week for the last couple of years. It has kept the platelets stable. I have been asked to reduce the two 1500 days to 500g now for the next three months, because I have developed a small ulcer on my foot. Hopefully this will help get rid of it.
I hope the reduction works MoNut without destabilising your platelets. It seems to be a fine balancing act.
This sounds very familiar. My dose of hydroxycarbamide was also increased until I reached two tablets a day 1000mg. Recently it was reduced and I only take one tablet on Saturdays and Sundays. I bought two weeks worth of pill boxes which I fill at the weekend to make sure I take the correct dose. 
Getting the dose right is sometimes a bit like a tightrope walk - a step either side can be problematic. When you first start on a medication your doctor will make his best educated guess as to the dose but we are all so different in our reactions to the meds that the dose more often than not needs some tweaking! You need to report if you are having any serious side effects but other than that it is a bit experimental to find the dose that fits you. Very best wishes, Jan
Thank you Jan, you are right and lacking in patience in certain areas I was a bit upset to find no change at all. I feel so much better reading messages like yours and have given myself a stern talking to.
Grace.
Hi Grace. I hope I didn't sound preachy! It is very hard to be a patient patient I know. After 23years of living with ET and now MF I am desperately impatient for the next drug to come around or even genetic manipulation that might provide a cure that does less harm than SCT. Who knows what is just around the corner though?
Best wishes, Jan
No, not preachy at all. I feel lucky to glean info from all you 'in the know' people on here.
When the consultant told me what I had, I just stared blankly, he could have told me in Swahili for all the sense it made to me, so I am here to learn and learning patience is somewhere on that list. I guess we never know what is around the corner but hoping is most definitely allowed for all of us.
Grace x
Hi Mica. ET JAK+. I'm confident the increased dose will lower your platelet counts...it did for me. I was a little apprehensive about larger doses, but I, and many others have taken larger doses without side effects. Welcome to the forum, and good luck.
Hi Jerry, Being new to this lots of things seem scary that knowledge and sound advice sort out. I guess it's natural to want to take as little as possible of something you know nothing about. You have put me at ease, knowing you had no side effects. Thank you.
I am so grateful for all the input in this wonderful forum.
Grace
Hi Mica11, sorry to hear that you are disappointed that your levels have not gone down, it took me nearly a year before my levels went to the normal range, and within that year they up’ed and downed the dose till right levels were achieved, now I take one daily and two Saturdays and Sundays, I have been on this regime now for over four and a half years and it has worked well for me so you need to give it time, it will not happen overnight.
Now that my ET is well controlled I only attend hospital every four months, I have made sure that I drink at least 2ltrs of water a day, keep fit and eat plenty of fresh fruit and vegetables, also consume a handful of nuts daily like walnuts, almonds, pecans and brazils which are all very good for you.
As you will find with a lot of us on here that it does take time, all a bit of trial and error, but it all does come good in the end, just give it a little more time. If you still feel worried about it talk to your Haematologist on your next visit.
Chin up Mica, we are all here for each other, and know how you feel.
Jean x
Hi Jean, Thank you for your lovely message. I am feeling much calmer about my increased dose after reading. I think I was a bit rattled at my appointment. Firstly they had no record of my appt despite me having it on my card. My consultant was off work due to illness and I was squeezed in to see a locum at the end of the day. She had little time for me, I had no time to ask questions, she just told me about my platelet count and that I was to double the daily dose. I was so late I could not go to the hospital pharmacy because it was closed and have to wait to get it from my own GP. Then I was unable to arrange my next appt as my consultant's appointments were full. Just nothing seemed to go right that day.
I have since had a phonecall from the hospital with my new appointment, just waiting on word from my doctor now to get my meds, luckily I have enough for 5 days! These things happen I guess.
I am feeling much better about it all now.
Grace x
Oh Grace, sounds like one of those days when nothing goes right. Fortunately these are rare. Make sure you press your GP for your meds. Eleanor
Oh Grace, so sorry, it sounds as if you are being pushed from Pilar to post. When I was first told of my diagnoses it was by a very rude female doctor at the hospital, she was supposed to of waited for my chemo nurse to be present, but no she went straight in with you have ET and are JAK 2 positive and that means you will have to take a chemotherapy drug called Hydroxycarbamide, then got me to sign a form of consent and left, when my Chemo nurse came in she was amazing explained everything, put my mind at rest and gave me loads of information about MPNs and this is how I found the Voice. Also Maz, arranged a buddy for me for a while and this helped as well.
I now make sure that when I have my appointments and have my bloods done I ask to see the same Haeamatologist every time, he is a lovely man and very caring, which makes a difference, plus I also write down questions that I need answers to, and he obliges. It throws me when I have to see someone else, but so far so good.
As for your meds, keep ringing up your doctors, to make sure the prescription has been done, because some chemists have to order the drugs in and this can take time, and as you have said you only have five days.
I have found over these last few years that I have needed to get more assertive, which for me has worked, used to be a bit of a pussycat, just purred and rolled over 😽 but not anymore 😺
This is the best place to be, we may be a rare breed, but we are all here for one another.
Jean x
Yes Jean, a weird day, just felt like everything was off kilter but it's done now. I shall have to nip into my docs to arrange 2 bloodtests before my next appt and shall chase up my prescription.
On a positive note, I went to circuit training for the first time yesterday, trying to increase my energy and get rid of this leaded limb feeling. I really enjoyed it but maybe that was because she played some fantastic music!
Grace x
Sounds like great motivation.
Great how a good tune can get you going 🤪
Always loved exercising to music, makes me forget I'm actually working hard.
I love Dancing full stop!!!! Even at my age.😃
Apparently not at all vulnerable Yes! all counts in normal range but...
Taking Interferon for the first time - when do you take and why do you take at that time ?
Hope you have a happy ,healthy ,Christmas ,lots of love sent to you all for good luck in the new year ...
The first 7 months after diagnosis. Feeling better in myself.
it’s very easy never to be happy. 😜 
