I took my first hydroxycarbamide about an hour ago just had appointment with haematologist yesterday. She was excellent and explained the condition ET. Difficult to realise something wrong with you when you have no symptoms. Condition picked up in annual routine BP and blood test.
Wonder how other people feel?
Snap mine was utis constantly and eventually they sent me for blood tests and heamatology then bmb and diagnosed with ET. I have bone pain bruising and fatigue good luck on your journey I’m 69
Hope you don't have side effects.
How high are your platelets?
Quite low actually caught very early 456. It’s all happened very quickly a bit of a shock when I have been feeling fine. To be honest never knew anything about this, did you?
That seems a low reading to be going straight on to medication. When I was first diagnosed 11yrs ago I was 51 with platelets around 550 and was only prescribed aspirin.
I was on Hydroxyurea for a short while but couldn't tolerate it so am back on aspirin only. Platelets are now around 650.
I assume your age (over 60?) or other factors have played a part in your doctor's decision.
Good luck.
that is low .. my platelets went up gradually. They didn’t diagnose MPN for several years.
About 5 years ago I fainted whilst driving . So they did lots of test and didn’t find any reason for fainting…
I didn’t start taking Hydroxicarbamide until platelets remained over 900 consistently.
I take meds every other day. Which has lowered numbers. Consultant wanted me to take every day. As I’m small I felt it better to start with less and remained on 500 mg every other day for over 2 years.
Have you other conditions have have caused consultant to immediately put you on meds ?
Gosh that was dangerous. 3 blood tests with platelets over 500 and still no warnings until I too collapsed ( over something indirectly related) luckily in the house. A and e said I was fine but explained that they were high for someone who had had a stroke. The doctor was most insistent I went to my Gp. That started things rolling.
I simply don’t understand when a blood test clearly shows you have a count out of range and it’s flagged up that drs. Ignore it.
ps. Before diagnosis never heard of platelets even !
I have high blood pressure and I am 74
Mine was similar - my ET picked up by consultant who did my colon cancer surgery - after given all clear for C C told I had ET and JAK 2-consultant referred me to haematologist!
Could not tolerate Hydroxy-so take other meds for it.
Hi I have been on hydroxy for 5 yrs after platelets reached 1300 my consultant was happy for me to take aspirin for the previous 7 years while I was healthy, during this time the platelets rose from 650 to 1300. I have been on 2x500mg mon to fri and 1x 500mg sat and Sunday platelets are now steady in the 300’s not much in the way of side affects, bouts of tiredness and joint pain, I have put on weight and find it hard to lose a few pounds. I’m now 64 and have taken up golf. Hope you keep well and can tolerate the hydroxy.
This is a great site for information and support.
Keep well x
I couldn’t handle HU, which gave me terrible neurological symptoms. I took anagrelide and since it was causing heart pounding, we tried to stay at the lowest amount with the thrombocytes, not going over 700 for the side effects on the heart to remain minimal. This is the sixth year after diagnosis with seven years of an identified illness before that. I have now been on Besremi for a year and it is finally working. I am still taking one anagrelide in comparison to 6 five years ago. I didn’t get interferon before because of my Hashimoto’s thyroiditis, but since I’ve done a lot of fixing my general health my immune system has become absolutely stable and my thyroid is 50% better than before. This is why my MPN specialist offered me the Besremi, which is generally not given to those with thyroid problems. After a year it hasn’t affected my thyroid, but it looks like it might be affecting my kidneys and memory, joints, and weakness.
That’s not great for you, I am not yet used to all the terms. I hope there is a solution for. I hope you stay as well as you can .
Can you reduce the dose and maybe combine with something else?
Hi Wybird,
There is nothing else. We are trying to get rid of them anagrelide completely. I have just received a brain therapy machine with electrodes that Detoxes the brain. I visited Eye doctor in Cyprus and just said goodbye to him half hour ago. I will start using this three times a day when I’m back in Vienna where I live on Wednesday. He is an osteopath and neuroscientist and he’s diagnosed that I have brain inflammation in the brain stem in the mid brain. These treatments will help reduce the inflammation. We don’t know where it’s coming from, but it is causing activities pain and numbness in my arms and legs. We know that Besremi affects the brain, that’s why there are warnings of depression and suicid joint pain et cetera. So who knows?? Perhaps it is responsible for these symptoms or it can be a combination of that, and the heavy metals in my brain.
I should be seeing results within 3 to 4 weeks and if this is something sensational, I will definitely report it in this forum!
it is very important to observe the changes in our body and how they are affected by the times. We take our medications by sleeplessness, panic, fear or stress, other illnesses, et cetera. It is necessary to pinpoint what is happening in then we can learn to reduce the stressors on our body. So that we can live with higher life quality 🙂
Hi RoxyI am on the same amount of medication as you, I also found increase in weight a problem.
I found giving up or minimizing white foods really helpful now I don't have the extra weight 😜 Best Wishes
Did you have any side effects apart from weight!
Fatigue at first but no, I feel great.Once I got over the initial shock and fear of diagnosis and in the routine of medication I was able NOT to put the illness at the front of my mind and dominate my life.
Be careful when out and about with germs etc.
Enjoy your life and living, it's worth it 🙏
Best Wishes 🍀
Wow your platelets are so low they are practically normal. I understand the old normal upper range used to be 600. To be fair I’m quite surprised you are on HU already with no symptoms and what I would consider, for ET, pretty low platelets. I do hope you don’t get any side effects : you can see them here: drugs.com/mtm/hydroxyurea.html
Hope these were all discussed with you beforehand and you are ok with them? Good old fashioned informed consent.
I suspect if you had spoken with an MPN specialist , they would have probably recommended a more conservative approach. My specialist did even with platelets at 1400/1500. Like you no symptoms, fit and healthy .
I would suggest you research Pubmed treatment protocols for essential thrombocytosis.
It was thoroughly explained to me but it has come on suddenly as I have blood test every year. I was given time to think about it but didn’t need it as my husband, fit healthy non smoker non drinker had a stroke 3 years ago so it was no contest for me. Consultant didn’t rush me my daughter was with me with list of questions……
Hi Maxpenny, I was diagnosed with ET JAK2positive in September this year after an incidental finding. I started low dose aspirin and am researching Hydroxycarbamide. I have a Bone Marrow Biopsy on 24/10 and out of the blue received a letter yesterday for an abdo/pelvis CT on 16/10. My three platelet readings haven’t been over 600. Sorry to read about your husband having a stroke. X
Hi Maxpenny I wasn’t diagnosed for 8 years I had uncontrolled high blood pressure for almost 20 years . strangely since taking Clopidogrel which stopped visual problems and migraine like symptoms then Hydroxycarbamide my blood pressure has been better controlled. no more visual disturbance ,also no longer have blood in my urine . Fatigue is my main problem . I take 1000 twice a week 500 the rest . I am 67 just have to do what I can on the days I feel better . For me the diagnosis explained so many random symptoms like painful feet which got red itchy and all the skin peeled regularly. Intense joint pains fidgety legs in bed at night Even if my consultant tells me none of these conditions are related to my blood . I see on this forum many people having many symptoms the same as me . So reassuring
yes this site seems very useful
hi I too had no idea was fit climbing mountains and hiking a lot then did a 3 month safari through Africa so when I got home went to doc and they did full bloods - platelets 1600 and I felt fine!!! Am now on 10 x 500 mg Hydroxy a week platelets hover between 500-800 but all good. I am now 72 - diagnosed in 2018. Don’t think I could climb Mt Snowden now but still very active and even if feeling a bit tired get out there. Am determined not going to let this beat me.
Have prefibrotic myelofibrosis.
So my advice is live your life don’t let the disease live for you. Good luck.
Thank you so much it is reassuring speaking to other people. Doctor said you will live with it not die from it… good advice I think😀
Exactly that, take the hysteria out of it and you will be fine ❣️Best Wishes
Hi, I was diagnosed 7 years ago at the age of 64 and was immediately prescribed aspirin and hydroxycarbamide - no known other medical issues. For most of this time my bloods have been OK and the main problem has been intermittent days of fatigue. At present I take 1000mg hydroxycarbamide a day and feel OK. For a few weeks I took an extra 500mg once a week (so 1500mg on Sundays). During those few weeks I felt particularly and constantly tired, had a lot of tingling in my feet and hands and had sore fingertips. Whether this was due to that extra 500mg or just coincidence it's difficult to determine definitely but now that the extra 500mg has stopped, I feel fine. I think probably 1000mg a day is the maximum dose my body can tolerate although there are a lot of patients posting on this site who tolerate higher doses. Hopefully this is of help to you.
About the same. What do you mean cancer?!?!? Very surprising!! Learning a lot in 3 years. I’m on hydra as well. It’ll all come together. Good luck.
Thanks for your good wishes
Mpns are classed as chronic cancers.
I meant when the doctor told me it was considered cancer. My response was “ what do you mean cancer!?” Yes chronic…..never go away but treatable. I had to reassure my family that ET wasn’t life threatening. Praying it doesn’t escalate into something worse.
Have a wonderful weekend. Off to worship 🦋
Hello and welcome to our friendly and supportive forum.
I had a similar presentation to yourself. Platelets only 500 on a random blood test. I had a second blood test three months later, platelets still at 500; GP then referred me to haematology where I was diagnosed with ET Jak2 +. I’m forever grateful to my GP for being ‘on the ball.’ You read of cases where no action was taken for years?
I was aged 60 at the time of diagnosis, the WHO criteria was to commence cytoreductive therapy (hydrea) due to age and Jak 2 status to prevent any potential risk of thrombotic events. I can remember being hesitant, but the haemotologist discussed the disabling effects of strokes. I must admit out of everything that concerned me the most.
I will be going into my eighth year of being on hydrea. Initially I took one tablet a day. My platelets dropped pretty quickly to 288. At that point the CNS advised to have weekends free, so only Monday to Friday for me for the last seven years. I really liked this idea. If you respond well to hydrea you could discuss the possibility of weekend breaks.
My platelets remain stable at 320 ish! I also had borderline haematocrit values at diagnosis which also responded well to the hydrea. So, from a thrombotic point of view a win win all round. I have had no issues with this medication other than the odd mouth ulcer in the first few months. I do get some fatigue, but that could be the disease itself, age or my care commitments.
Wishing you the best of luck.
Thank you very thankful to my GP and as my husband had a stroke I know only too well the effects of that. I am only on 500mg Monday to Friday weekends off for next 6/weeks so here’s hoping.
Thanks
That seems like a good plan, as your platelets are low to begin with plus hydrea can be quickly effective.
So sorry to hear about your husband. Hope he’s coping as well as can be expected.
Please keep us updated on your progress.
Exactly the same as you - but one year on from diagnosis. Taking Hydroxy Carbamide 500 mg per day + aspirin and I’ve had no adverse reactions or side effects 🤞and wouldn’t know there’s anything wrong. My ET was diagnosed after a routine blood test and my platelets are under control too. I consider myself very fortunate.
Thanks for taking the time to tell me that it is so reassuring. Initially it’s very frightening to feel perfectly ok then discover something wrong. Thanks
Hello and welcome!
I asked the exact same question to the group in March as I was terrified . After HU for a few days the fatigue hit hard and for me its comes in waves every few months. My other problem hip pain making it difficult to walk sometimes. I have been referred to an orthopedic specialist. I had none before HU and walked several miles a day. No other symptoms yet for 🙏
Good luck and keep posting. Wonderful people and here for you.
Hello and welcome.
I managed ET for over 20 years with platelets cycling from the 500s to 700s. Most of this time I just used an aspirin and monitor approach. The ET progressed to PV about 10 years ago. I am now treating with Besremi.
It is common to choose between hydroxycarbamide and Pegasys for treating ET. We each need to choose the course of treatment we prefer, There is some useful information to have when managing treatment with hydroxycarbamide.
drugs.com/monograph/hydroxy...
oralchemoedsheets.com/sheet...
ethrombo.blogspot.com/2017/...
Wishing you success with your course of treatment.
I knew I was ill. I couldn’t wait to pop the pill. Between my referral and diagnosis I became weaker and weaker. I didn’t feel an improvement for about 3 weeks. It took time to adjust the dose.
I understand now why you took meds right away. For warned is for armed . . Very real to you what happens when someone has a stroke.
Somehow it’s easy to think it won’t happen ‘to us’
Not true . Can be out of the blue .
In my humble opinion your count is too low to start on hydroxy.
I have been on various doses of Hydroxy for 16 years now. I can honestly say I have never noticed any side effects. I feel like my skin has aged a little quicker, but that may have happened anyway!
ET, Lower Hydroxycarbamide 
Taking Antibiotics while on Hydroxycarbamide for ET
