Hello, can I join you?

My doctor's suggestion that I had ET was confirmed last Thursday (19 Jan 2017) and at the moment I am on 75mg of Aspirin. However I am waiting to be put on hydroxycarbamide once I've had an appointment with the nurse. Not looking forward to it now that I've read about the side effects you folks have experienced. The leaflet I was given by the specialist said that the dosage is so small for ET that it is unlikely patients would experience any side-effects. We will see.

I also read that eating pomegranite seeds might help so I've been doing that while waiting for the diagnosis to be confirmed ... it didn't appear to have much of an effect though.

I haven't any knowledge or experience to impart but will keep in touch with any info I manage to glean.

Hello ChrisAnnSen,

Welcome to the discussion group, not that you really want to be, but we have ET so we better try to find ways of helping each other, even if it's just being able to have a moan to someone else who understands. Hopefully by sharing first hand information we can help each other.

I have got to see my GP on Wednesday to discuss hydroxy and clopidogrel, I missed a dose of both yesterday and felt better today, so need to discuss trying aspirin with my GP. Back on the pills today, see how it feels tomorrow. I am not suggesting others do the same !

The more ETers who join in with the discussion, the  better, even if they do not have side effects.  

Hello ChrisAnn and welcome to our chat.  I was diagnosed over a year ago and started taking 500mg hydroxycarbamide (1 per day).  This was increased to 1 capsule 1 day and 2 capsules the next, then increased to my present dose of 2 x 500mg capsules daily. I also take 1 aspirin daily. My main problem is extreme tiredness - I don't know if this is a side effect of the capsules or if it's due to the ET or if it's just "an age thing" (I'm 70 years old).  I'd never heard about the pomegranite seeds being of any help, but anything is worth a try!!  Looking forward to hearing from you again.

Hello Linphy and welcome to our chat.  I was diagnosed over a year ago and started taking 500mg hydroxycarbamide (1 per day).  This was increased to 1 capsule 1 day and 2 capsules the next, then increased to my present dose of 2 x 500mg capsules daily. I also take 1 aspirin daily. My main problem is extreme tiredness - I don't know if this is a side effect of the capsules or if it's due to the ET or if it's just "an age thing" (I'm 70 years old).  It's not just normal tiredness - it's as if I just have to go to sleep (even for just half-an-hour) and cannot stay awake. Sometimes inconvenient - ok if I'm at home when the feeling happens.

This is where I read about pomegranites:

http://www.wikihow.com/Decrease-Platelets

I must point out that I've not talked to the haematologist or my doctor about the contents - I just thought it was worth a try with the pomegranites as there was nothing suspect about eating them (except that I'm not keen on the pips :D )

It's so good to chat to people in the same situation.

It is interesting that it is not known why we are finding ourselves in this situation. However, I am a woman, over 60 (11 years over actually!) and overweight - which appears to make me more likely to suffer from ET. I have never been a smoker though.

Thanks for all the replies.

I was out all day yesterday ,  so forgot to take my Hydroxy and Clopi, (that's two days in a row )  and must admit I feel so much better this morning, virtually no back ache or muscle pain,  I will resume the Hydroxy today and see how I feel tomorrow when I see my GP, he is very understanding ( hopefully ) so will see what happens.

I found some Pomegranate juice in the local health food shop -  made by Optima® website www.optimah.com   made in Swansea , Wales UK. Not cheap , doesn't taste too bad, can be taken straight from the bottle or diluted.  The best one I have found, some of the supermarket Pomegranate drinks appear to be a bit doubtful. 

Strangely I was taking to a friend who has some health problems the other day, he has exactly the opposite problem - too few platelets - pity we can't do a swop.

I am still working on the diet issue, and as a result of my research , no doubt you have all done some , I am going to try to produce a list of platelet production inhibiters, and platelet production helpers. In other words if you have the wrong platelet level , what may help and what to maybe avoid.     Would welcome any sugestions.  

Hi everyone,

I hope you don’t mind me posting on your thread.

Although it is likely that you would have been asked to avoid anything that might affect the safety and effectiveness of a prescribed drug please do let your specialist doctors know if you want to take pomegranate juice.  Pomegranates contain a substance called CYP3A that may have an effect on how some treatments work and could interfere with the effectiveness of some types of chemotherapy, some types of biological treatments (ALK inhibitors), the anti-epileptic drug carbamazepine and some other treatments. 

There is also very little evidence that taking pomegranates can decrease platelets. Taking it really should be discussed with the doctors caring for you.  We have some information about this here

I hope this has been helpful.

Take care

Caroline.