Hiya everyone, hope you are all well and staying safe. I have just started Hydroxycarbamide and wondered if anyone else was at the start of their Hydroxycarbamide journey and would like to chat / share responses/ support each other? Hope this is ok Maz? I have had really excellent, personal, face to face support from my consultant and so far 4 days in, all good. Anyway give me a shout if this appeals .
Look after yourselves
Hi Cassandra61 I have been on hu for many years so don't hesitate to contact me if you need anything I have et jak2 + for many yearsStay safe
Scottish Terrier xx
I was diagnosed with ET jak positive last November. My platelets were 890 and have come down to 500. My heamotologist left the hospital trust and I seem to be getting someone different all the time. The one phoned me 2 days before my appontment so I had not had blood test. She reeled off details of my condition and was foreign and talked so fast I hardly understood a word! She sent a letter to my gp saying my platelets were out of control which I didnt understand and haemoglobin low so to start me on ferrous sulphate which I took as nobody got in touch..do I take it 1 or 3 times a day? No support whatsoever. Then another doctor phoned to say my blood was improving and to carry on with 1000 hydroxy a day. I realised last week I was low on hydroxy, mainly because of doctor phoning 2 days before app and I got flummoxed and thought had new box full when I had taken some out. So I phone secretary but ansaphone all week. I phoned hospital and they put me through to her. She said she would see to prescription. Next day she phones again to say been dealt with. Then a nurse phones to ask my dose I am on and says she will do prescription. Then a doctor phones and says he is doing the prescription . This is laughable..then pharmacist phones to say be delivered wednesday. Next day pharmacist phones to ask how much I take( Please just send a box as usual) So i say 1000 a day,,he says doc put i have 1000 a day for 5 days and 500 for 2 days which was a previous dose,does it really matter just give me a box so gotto check it out. then a pharmacist phones and says its being investigated because doctor put wrong dose on prescription and has gone oh holiday. Does it really matter just send me a box..asks again how much I take..absolutely ridiculous Then another pharmacist phones and say it will be sent shorty. I said I got 3 days left. While all this is going on I receive an appointment for abdominal scan which nobody had told me about.. all this is ridiculous isnt it and I wonder why I feel stressed. I think the world must have gone mad!!!
Hi I started taking it nearly 8 weeks ago with no problems initially and only some slight nausea for a couple of days when my dose was increased.
hi Cassandra61, yes of course, it's a good idea to ask other people. I have been taking Hydroxycarbamide since 2008 and have been absolutely fine on it. Best wishes, Maz
I’ve been on hydroxyurea since 2008 for ET jak 2 positive. I did have side effects at the beginning but I’m handling it well now. I did progress to MF a few years ago, but my new doctor kept me on it. I take 1000mg per day. Good luck.
I've been on HU since April - initially started with 500mg/day and slowly increased to now 1,500mg daily. Initially had a very positive response with platelets falling from 1,400 to mid-700's..but has stagnated since then..my MPN specialist always starts low and increases slowly if necessary. My current issue is at last blood draw platelets remained stubbornly steady in the mid 700's and I have started to experience some negative side effects including: nail discoloration, less energy, breathlessness when exercising, and most annoying severe rash on. my arms with extreme itching (making it very difficult to sleep at night). Given the reactions my specialist bumped my next appointment from end of August to August 2nd and he wants to discuss changing medications (most likely to Pegasys).
I will be really happy to keep in touch but just wish I could get my medication started!! Am feeling some really rotten side effects of the platelet raise at the moment. Also I would be so thankful to know from anyone on here on this treatment what, if any side effects they have found or suffered. I have been warned by the Consultant on the phone and it appears in the wording of the letter she has sent my GP, that there are/can be prominent side effects including apthlous mouth ulcers and venous ulcerations of the legs. I would be so grateful to know whether anyone has suffered any of these on hydroxycarbomide/HU and if so, have the meds been changed. It concerns me as I had polio in my left leg as a child and it is far more tender and vulnerable than the other and the thought of leg ulcers is really concerning me. Also dentistry, you have to tell your haematologist and dentist when you are having treatment also I believe.
I am six weeks into hydroxycarbamide I have no problem s at moment except cramp at night
Hi my name is Jayne and I’m 45 years old have ET, CALR Positive. I started Hydroxycarbamide about 8 weeks ago. I take 1500 mg a day and I’ve just been suffering with extreme tiredness and the occasional headache and a sore throat. Sometimes feel a bit sick but that tends to pass. My platelets have come down from high 1300’s to 433. My blood check is on Monday so hoping to reduce the dose.
Jayne x
ET and Hydroxycarbamide
ET , Jak2 positive.
Hydroxycarbamide 
Starting hydroxycarbamide and scared!
