Hi Everyone, wishing you all well at this incredibly sad time. Covid19 is so scary but I also wonder if taking low dose Hydroxurea (I take 2 per day, so1000mg) for Essential Thrombocytosis (JAK2 mutation) makes you more susceptible to a virus like Covid19. All my other markers are fine eg white cells, ferritin etc... platelets are half what they were when I started Hydroxurea.... now only 650 and hopefully might reduce a bit more. Appreciate your thoughts... otherwise will just wait and see what haematologist says although in the meantime just wondering/ worrying....
Ciao Elizabetta
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Elzbietta
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I have ET and on Hydroxy with Jak 2 mutation - i spoke to my consultant for a catch up yesterday and said re our condition it is using social distancing measures but not sure what additional risk our medication would add - so basically said go for a walk once a day - try to visit supermarket once a week if possible etc - he said if i were to develop any symptoms that I am to ring them to discuss - they think they would ask us to come off our meds straight away (they told me this when i had pneumonia 3 years ago also) to help aid recovery and then see what other additional measures they would take. They said to come off meds only after discussion with them. I felt really reassured as obviously if we waited to ring 111 or GP as per guidelines at the moment we would be waiting 5-7 days! So basically fever with or without dry cough or if you feel really ill in other ways to ring them. My platelets are 497 at the moment which is pretty normal for me to be honest and stay within 420 to 500 normally Hope this helps - so glad we have this site to share experiences and advice given especially in times like these.
People react differently to HU, so the answer may not be clear. Maz referred you to the website that also states that it is not entirely clear. You are aware of your leukocyte levels, which are WNL. Theoretically, you should not be at increased risk to contract the virus. The truth is that no one is entirely sure what the answers about our risks are. I would think (theoretically) that the increased risk would actually be if someone on HU contracted the virus. HU decreases all hematopoiesis - including the production of leukocytes. It seems to me that when your body needed to be producing more leukocytes to fight an infection, the HU could inhibit that response to some degree.
That is just my own thinking and I am not a doc. Please discuss your concerns with your doc, perhaps asking some specific questions about your risks. That is what I did with my doc and got some good feedback about my risks. FYI - Answer was - with JAK2 PV Age 64 Phlebotomy-only my risks are likely not much different than any other 64 year old - but no one really knows for sure. My solution - social distancing, but not isolation. Due precautions when out in public, but not going out much. Living with caution, but not in fear.
I agree with Hunter. I go as far as saying, a day wasted on worrying is more than a day lost of Good living.
I (55) have ET on Anagrelid thrombos hover between 650 and 850. I also have inborn anaemia, and have had 30+ bronchitis and 3 pneumonias. I am really in danger if I contract Corona, but I know what I have to do. The swine flew almost got me. But I’m definitely not living in fear. I’ve done a lot to fix up my immune system in the past 3years and am much better prepared for a corona infection than I was before getting the swine flu some 10 years ago.
I stopped all outside contact with people 3 weeks ago. I started stocking up on food 4 weeks ago. I live in Vienna. The infections are doubling fast here, but the medical system is well prepared and 95% of citizens are complying with the lockdown.
I am really enjoying this close time with my husband and 16 yr old daughter. We are cleaning basement, rooms, finished tax returns, taking walks in the woods, we don’t get close to anyone, stay 2 m away, we watch great movies after the evening news, then singing, exercising, crossword puzzles, dancing, trying to turn our home into a 4 star restaurant, joking a lot, keeping in touch with friends, praying. We might never again have such concentrated, valuable down time again in our lives. Even my friends, who live alone are doing well.
Most of the fear is being produced by false or missing information. Please take extra precaution! We must. We are high risk. Then enjoy your life. Reorganize your priorities, Live life well inside your home, take careful walks, where a good mask in the supermarket, get in and out as quickly as possible or get someone else to do your shopping, wash/disinfect your hands, door knob, gloves to open post. We can’t do more than that except, eat lots of fruit and veggies, take vit C, do everything that strengthen your physical and emotional self. I wish you all blessings, safety and good health!!
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