My platelets are now on 990, I've been suffering with painful prickly sensation on my skin for a couple of weeks now, whenever any thing touches my skin, even cold and hot air. I've spoken to a nurse who says if it gets worse go to A&E. How concerned should I be about this symptom? The hospital have moved all ET patients appts on a month. I should be going next week and have had the blood result at 990, but my nhs Dr says he doesn't need to see me until May 2nd. Do you know if the nhs guidelines are that they are not permitted to prescribe HU until the platelets are over 1000?
I am seriously thinking of going private as the nhs may well move my appointment again !! Hope you can help??
Sandra
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Sandra9Burt
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My first mutation was also CALR+ Type 2. When I was first diagnosed it was ET, well that was until they reclassified me MF after my BMB results. However, the point I wanted to make was that I also suffered from Pruritus, and particularly when I was on Interferon Alpha. I did not notice the itching quite as much when I was on HU, but I also struggled w/ those meds' too prior to commencing Ruxolitinib (Jakafi).
One of my main concerns was & still is high Blood Platelets (BPTs). My last results showed 755, and down from over 1M recently. I have already suffered from two (2) TIAs (minor brain strokes), where it is generally speculated that high BPTs might be a contributing factor.
It really does not hurt to seek a second or even a third opinion if one is concerned about the treatment they are receiving etc...
Everyone's MPNs are a tad different from each other. We might be different ages, different levels of health, and a great variety of many other salient factors. That 's why we need to put our trust in our medical teams... I always ask questions!
I am not a medical expert Sandra, just another MPN family member, however, w/ your BPTs so high it might worth asking a few more questions to deal w/ your concerns. Perhaps find another GP, and ask for a referral to see another MPN specialist...
I have PV. My platelets aren’t high. I’ve had pruritus since before I was diagnosed. Everyone is difference. What helps me is heat, drying my skin quickly and meds (ranitidine and Atarax). I live in Scotland where getting a second opinion is a very lengthy procedure. I did my own research and came to my own conclusions, what I needed to fight for. I went private for me this helped explain my concerns to my nhs consultant.
You should definitely go to a private doctor and you should definitely be on a something to lower your platelet count. With this disease you can get symptoms at different platelet levels, it is more of an individual thing. I had atypical TIAs with a platelet count in the 800s. I eventually went on Pegasys and have been in remission for 8 years.
Remission, wow, so happy for you! Does that mean you are not on Pegasys anymore and your platelets remain stable? Are/were you Jak2+ or Calr+? If so, is your allele burden now not detectable?
Hi.. i was given hu when my platelets where 833 it worked fine for a while then it stopped working so they put me on interferon injections which are working well. The only drawback.is the side effects.. i also have a nerve problem.in my leg due to a slipped disc... maybe you need your back checked not all disc problems are painful... my leg is numb.. burns and extremely sensitive to touch be it ait or people or clothing.... get it checked. Read about allodynia and also meralhia parathetica.... hope you get sorted soon x
The magic numbers for drug intervention (other than aspirin) are 1500 for platelets and age 60 plus. BUT each patient is different. Your general state of health, any previous thrombotic episodes and your symptom burden will all impact on any decision to start treatment. And even if your platelets are around 1500 and / or you’ve turned 60 that is only a guide for commencing drug treatment.
If you are in good general health, under 60 and aren’t experiencing any / particularly significant symptoms then a platelet count of 990 is probably not going to cause major alarm.
Prickly skin i’m afraid can go with the territory. MPNers will have lots of advice on that! It can be especially bad after showering or swimming. Drying quickly can help there. Anti histamines and topical cream are usually first line treatments. Again, if it becomes unbearable this is something to discuss with your haem and may impact on any decision to commence drug treatment. Personally I decided to put up with it and deal with it as a lesser evil than starting on HU.
Burning / tingling sensations in your extremities - toes and fingers - on the other hand should be raised with your haem or CNS more urgently.
By all means seek a second opinion. The key is to ensure you are seeing an MPN specialist. And they are far and few between. So private may not necessarily equate with more knowledgeable. The leading specialist in the UK does not have a private practice. Best wishes.
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