Treatment protocol for ET

Hi, new ET member - a bit confused over treatment!

I was diagnosed nearly 2 years ago with possible MDS/MPN overlap syndrome with low risk essential thrombocytosis, +ve Jak2. I was 49 then. Considered Low risk, high platelets were just discovered on routine blood test for other reasons (I was thinking menopause, thyroid, vitamin deficiencies…)

Over the 2 years, platelets typically range from 750-1300 ish, although for some reasons my Haematologist thinks its Ok to directly compare capillary blood with venous blood results, even though I can see there is a huge difference between the two. (One time I had both tested on the same day and the difference was 869 capillary blood. v 1306 venous blood!) Most of the time he just checks my capillary blood. I suspect I have had this for 10+ years as I found a really old blood test from 2005 which also showed slightly elevated platelets 451 (range 150-400) but this was never acted upon. Thankfully 95% of the problems I saw the GP about 2 yrs ago went with correcting my vit B12 deficiency, especially the headaches, fatigue and burning feet, which seem common symptoms of ET too. I had to treat myself as the GP & haematologist firmly stick to the ref ranges which are well known to miss lots of B12 deficient people.

Anyway, the haematologist would like me to take aspirin. I would rather not, considering my age, low risk and no previous thrombotic events plus there are also risks of taking aspirin which he totally ignored. I reluctantly tried it for a while, but after suffering from severe bruising I decided it probably wasn't a good idea. After all, if I was bruising that much on the outside, what was it doing on the inside?

Having read lots of comments on this site, I am mightily confused with regards to treatment protocols. It seems so variable I wonder where the scientific evidence behind it all is? The BJH 2010 guidelines seem to suggest caution with using aspirin for people with platelets in excess 1000-1500. It also states platelet count per se does not correlate well with thrombotic risk.

onlinelibrary.wiley.com/doi...

onlinelibrary.wiley.com/doi...

This article states: Patients under the age of 60 years of age who are otherwise asymptomatic with a platelet count less than 1500 × 109/l have a comparable risk of thrombosis approximating to the normal control population (Ruggeri et al, 1998).

Obviously, there is plenty I don't know about ET but I am keen to learn. I am very interested to hear from others about which protocol their haematologists use so I can weigh up the evidence myself. I do think it is vital that patients are empowered with information so we can have a proper discussion with the specialist about what really is the best treatment.

If anyone has found some interesting and helpful research papers, can you please send a link.

Thanks.

[Rachelthepotter]

Hi Debra. The mpnreseach foundation mpnresearchfoundation.org/U...

is an excellent patient oriented site that has up to date links to reaerch papers and treatment protocols. Have a browse and see what you think.

It sonds as tho you don’t have much cnfidence in your haematologist: you couod ask Maz about haematologists in your area that have expertise in MPNs. God luck, , and keep posting..

Rachel

[Hidden in reply to Rachelthepotter]

Thank you Rachel. Looks like a very helpful site. I live in the Netherlands so not sure if Maz can recommend anyone over here. And you are right, i don't have any faith in the haematologist. If he can't even recognise a simple vitamin deficiency, why should i trust him with more serious things.

[Ebot]

Aspirin only is pretty routine treatment for low risk ET and PV patients. I’m under the Heam team at Guy’s hospital and I do have faith in. As far as I recall in a discussion with Prof Harrison on one occasion when my aspirin intake was reduced to every other day I was told the evidence suggested that less aspirin was just as beneficial but that too high a dose was harmful. I would however be wary of research papers that are now twenty years old. The understanding and management of MPNs has changed exponentially in the last five years and almost out of recognition in the past twenty. I think you will find that some others on this Forum take alternative medications to aspirin.

[Hidden]

Hi Ebot, that is very interesting. Had not heard about taking aspirin alternate days. Sounds a bit more reasonable and with hopefully less side effects. Do you know if a paper was written about that or was it only mentioned in passing?