essential thrombocytosis

[Grovepark]

Would like to know how others are feeling especially on long term hydroxycarbamide

[linphy]

I have Essential Thrombocythemia, I restarted Hydroxycarbamide 500mg daily in April. Today has been my worse day in a while, my bones are hurting I'm so tired, has been a real struggle today. I can't handle stress, tires me out. Since being on Hydroxycarbamide I can't drink milk it turns my stomach

Linda

[piggie50]

Hi,

I have PV diagnosed 12 years ago and have been taking Hydroxy for 5 years. I’ve had no problems or side effects from it. To me it is just like taking an aspirin and I feel secure that it’s probably helping to prevent a stroke/thrombosis. Some members of the forum have been taking it much longer, 20 years + . Yes, I get tired but that happened before the Hydroxy. It doesn’t suit everyone but other options are available.

[amarylis]

Hi

I was diagnosed with ET 22 years ago. I was originally on just aspirin but have been taking Hydroxycarbamide for about 13 years. I recently started taking Lansoprazole to combat gastritis, which was almost certainly due to the long term effects of my continuing use of medication. However, I’ve been very fortunate and appear to tolerate medication well and my platelets have been kept down to around the 300s - 400s. I take 1 x 500 mg daily 2 x 500 on Sunday. I’m now 61 years old and having worked full time in a secondary school for many years, made the decision to start studying full-time and am half way through achieving a History degree. I recognise everyone’s experience will be different, but so far ET plus medication has had a fairly minimal effect on life. Good luck, hope you end up tolerating Hydroxy C as well as I have done. It does seem to be doing the trick for me (so far).

[Mufftreacs]

I have ET and have been taking HU for 12 years. I am on a high dose at the moment 24 capsules per week.

I have the usual fatigue and mouth ulcers.

I am convinced a lot of the increases we get in our platelets etc are caused by stress. Particularly, if you are not always aware you are stressed.

My platelets change dramatically over the months and I have kept a record since the beginning.

I can see they rose significantly when I moved house, went from the U.K. to live in Australia.

They settle down when I am at peace with myself. So do the ulcers and the fatigue.

I have recently come to the U.K. to visit my relatives and my platelets shot up from 6 months at around 450 to over 600. Hence the huge increase in medication. The consultant seems to think that they will decrease again on my return to a peaceful life.

I am 76 years old and honestly believe that stress plays a huge part in this type of cancer.

[Sallush]

5 years in Hydroxycarbamide. Polycythaemia Vera and have had two significant blood clots prior to going on Hyxdro. Was on aspirin before which gave me more side effects than H. I’m on 2 tablets Mon to Fri and 1 tablet Sat and Sun. Get the occasional mouth ulcer and even more rarely get a day of aching bones. So I’d say I tolerate it fairly well so far.

[mhos61]

Been on hydrea for two years. I’ve not had any adverse effects. I take one a day Monday to Friday and have weekends free.

As Judy says, it gives you peace of mind knowing that your risk of having a thrombotic event has been significantly lowered.

Mary (ET, Jak2+).

[Bromley]

Been on Hy since 2009. I am truly wonderful and keep telling myself and everyone else that. It gives me peace of mind and at 73 I expect to have aches and pains. Everyone is different but positive attitude and a love of life is the best medicine. Best of luck.

[Grovepark in reply to Bromley]

Thank you.