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Hi all,
I have looked at this site on a few occasions but never posted until now. Background wise my raised platelet level came to light in pre operation blood tests conducted in March 22. At that point the count was 800+ and there were also a few other abnormal blood readings. I had a three month post op recovery period and then carried on with my life forgetting about the platelets. I had no symptoms until March 23 when I noticed that I had puffy ankles and went to the GP. A blood test showed a platelet count of 1100. A visit to the consultant haematologist revealed that I had Essential thrombocythemia (ET) and was put on a low dose of Hydroxycarbamide but no aspirin - an oversight later addressed - I am now on a daily dose of 0.75mg. Future appointments were a telephone call with the nurse, to discuss ongoing blood tests, platelet count and med adjustments. My platelet levels fluctuated so the meds were gradually increased to 17 x 500mg tablets a week. Fortunately I do not currently have any side effects. After a year of telephone appts the face to face appts with the consultant were restored. I much prefer this way of discussing my situation. In Nov 24 my platelet count was 470 ( at their lowest since being diagnosed ) however a month later a general blood test to look at cholesterol levels also showed raised platelet count at 596. I am due to see the consultant soon for a blood test…
A few months back in conversation with one of the consultants the subject of Interferon alpha was raised - by him - however a somewhat bleak picture was painted with regards to the side effects i.e. extreme fatigue etc also I would have to administer it via injection. If others on this site are happy to share I would like to hear from anyone who is taking this drug and how it effects them also do others experience fluctuation in platelet count?

I also discussed pain killers and was advised not to use Ibuprofin but was told to visit the GP and ask them to prescribe celecoxib as it is better for the stomach. The GP didn’t think so and said I would have to take it with a stomach liner this wasn’t mentioned by the consultant. What painkillers do other people use when the need arises - such as for bad back, painful muscle strains etc? I appreciate these drugs are not long term usage and also in the case of Ibuprofin not great for older people ( i’m wrong side of 60 ) but sometimes paracetamol doesn’t hit the spot.

Essential thrombocythemia (ET) has been described to me in simple terms as ’ sticky blood ’ so I gather cholesterol levels play a part in this?

Thanks
Scott

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Welcome to our forum @sangue and great that you have posted with your experiences and I hope others will respond to you with their experiences.
I attach the Blood Cancer UK details on Essential thrombocythemia (ET)
Essential thrombocythaemia | Blood Cancer UK
Have you got a nurse contact, if not your medical team or GP for your medical questions and about pain reliefs (again)as everyone has different medical histories and reactions.
Really look after yourself and please do keep letting us know what is going on for you

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Hi @sangue and welcome to the forum.
side effects of medication can be a real worry can’t it. I’m sure others can share their experiences but make sure you check everything with your go/medical team before starting anything new.
Take care and keep us posted on how you are doing :blush:

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Hi Scott

I have Polycythaemia vera (PV) not Essential thrombocythemia (ET) but was on Hydroxycarbamide(HC) for about six months and my consultant also proscribed a stomach liner (Opremazapol - I’m in Spain it may be called something different in the UK) for me at the same time because of the effects of HC. There may be a good reason why you were not proscribed it but definitely worth talking about with your medical team.

No one has mentioned painkillers to me so I would be interested in other people’s experience too. I will ask my consultant at my next appointment.

I only found this forum at Christmas and already have found it very helpful and supportive, so use it in whatever way works for you.

Best wishes and take care
Pedro

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Hi @sangue . I struggle finding a painkiller i am allowed to have too. You can’t take ibuprofen if you are taking aspirin as they are the same group of drugs. I was told this includes gels as well as tablets even though some high street pharmacists don’t seem to know that. My haematologist said i could take paracetamol and i have been prescribed short term codeine in combination with paracetemol.

With regard to interferon i would not expect you to be prescribes this at the moment as it is in very short supply. There are side effects that take a long time to calm down. tiredness and aches and pains are the major ones i have . Everyone is different.

Platelets can go up and down very quickly from what i have heard and mine are still too high. Dosage can be changed and i think it will be a while before the right dose is found for me.

All the best
x

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