Essential Thrombocythemia (ET) and viruses

I have had ET for four years and doing well, at this time. Before covid I had pneumonia every year, in December. Since I started wearing a face mask I have not had it. I believe, in my case, that a mask has protected me, not only from covid but all the other germs in the air that we deal with. I take 500mg per day, also 81mg of aspirin. I have experienced urinary track infections but not often but constantly battling fatigue and itchiness. Good luck with your treatment

Hi @arti4 When something causes a disruption in the normal function of our bone marrow, such as the JAK2 gene mutation, it compromises our immune system and our ability to fight infections. That means you may be more susceptible to illnesses and recovery times might be longer. I can tell you’re feeling pretty discouraged right now because it seems like life isn’t the same anymore. You’ve had a change in your health with this newly diagnosed blood disorder. But you can live a healthy life with a few little tweaks…

The key will be to avoid being exposed to potential sources of infection whether it’s flu, covid, colds or even food borne illness. Extra caution when out in public settings by wearing a mask, making sure you wash your hands, try not to touch your face and eyes, use hand sanitizer. Actually the best thing Covid has done is to help people realize how quickly germs/viruses can spread and how important it is to safeguard ourselves. One way to do that is wearing a mask. It’s not just for Covid.

As @claire39 mentioned in her reply to you that she wears a face mask now and no long has her annual bout with pneumonia. Masks do work to protect us. I’m also immunocompromised after a bone marrow transplant. I wear a mask anytime I’m in a public setting inside, such as a store. (My husband does too so that he stays healthy and that protects me). I’ve worn a mask since 2 years before Covid. It’s just a way of life now.
I also wear a mask if I’m in someone’s home or if anyone comes to our home. Masking up is routine in our household. I don’t think you have to be that cautious, but wearing a mask when you’re out shopping or at church or family gatherings is a little extra step to protecting your health.

I hope this cold you have is starting to ease up a bit. Did you test for Covid, just in case??

@claire39, @loribmt
Thank you both for you input. I definitely will need to be more careful. Life is different now.
I’m wondering about the ET…I know the bone marrow is making too many platelets, but is it also producing too few white cells and or macrophages? Is this part of the illness along with the overproduction of platelets? Does anyone know the answer to this? I haven’t seen this anywhere.
And yes, I’ve had two covid tests this past week and they’re both negative, thank God. I’m grateful for this forum, knowing I’m not alone. Thank you.

With ET, from my understanding, with your bone marrow producing too many platelets, it is also crowding out the vital red and white blood cells. So with a reduction in the white blood cells, which are the guardians of our body, your immunity is compromised. There are defective cells as well and that also plays into the equation. A lower amount of red cells will leave you feeling more tired.
How were your other blood numbers on your last CBC?

It’s a relief you’re negative for Covid. So hopefully this current cold will subside fast and get you back to normal. I don’t have ET but I did have an aggressive blood cancer 3 years ago. Totally in remission now after a bone marrow transplant. But one of the hardest things I had to learn is to “listen to my body”. So if you’re tired, make sure you take naps during the day. Eat healthy, of course, but resting is key. Also drink plenty of water each day, that helps quite a bit.
Life is different now but it doesn’t mean worse. It just means different. The cool thing as humans, we can learn to accept, adapt and move on. Your new diagnosis doesn’t have to define who you are. ☺️ Accept the changes, you’ll learn what your body can handle and then start fresh from there.

I’m happy you found Connect too! It’s quite an amazing forum for support, encouragement and help from others who are going through similar challenges.
What’s your schedule for blood work?

@loribmt
I’m so happy you have found the help you needed for your blood cancer! I know there’s hope for all this, and I actually don’t normally feel too many ramifications from this diagnosis. It’s mostly just fatigue. It’s depressing though, not to bounce back from a simple cold.
My last CBC was all good-everything in the normal range, except the platelets. I’m getting bloodwork every 3 months now. First hematologist wanted to start me on Hydroxyurea right away. I went for a second opinion and the second hematologist agreed with me that the Hydroxyurea recommendation was perhaps premature in my case. I know that things could change, depending on future blood work. Just trying to enjoy not having to take that drug, for the time being…
Again, thank you for your input and support. 😊

I was diagnosed with JAK2 positive in 12/21. My platelets rose to high 700's and I was 59 so I was started on Hydroxyurea 9 months ago-first 500mg daily, the 500mg alternating with 1000mg and now on 1000 mg daily. My platelets are finally in the normal range but I have gotten sick at least 5 times since starting. I am a physician with four kids and 2 preschool aged grand children and NEVER got sick. One of the times I wound up in urgent care and then on steroids, antibiotics and an inhaler which has never happened in my life-even when I had COVID pre-vaccination. I don't have much to offer-but it is reassuring to me that I am not the only one experiencing this. My Hematologist keeps telling me HU is only "mildly immunosuppressive" but my body is telling me something else. I take Liposomal Vitamin C and zinc/daily, try to stay rested and am much more careful about being around sick people (ie preschool children) than I was before but it's frustrating. I'm so excited to find this discussion. It's hard to find information let alone people who understand what you're going through.

yes, my hemo didn't think my bone pain in shin and toes was from ET Jak2, but ????.I agree, Also breathlessness, but not cardio or pulmon.....and why did it just start?
I think we are in high risk group with supressed immunity. I don't think they know everything. ps....also nice support group on Facebook

That's me. I am getting sick: Chills/sweating, nausea, headache, just plain feel awful, what seems to be about every few weeks. And seems like it is lasting longer and longer. Still feeling sick and it has been since Saturday night and its Thursday.

I'm so sorry to hear that. I also don't seem to "bounce back" as quickly as I used too. I'm trying to do as much as possible to boost my immune system. My ability to exercise also seems significantly diminished. My Hem-Onc did tell me after I had bronchitis (that was a 3 week illness) that I could stop the HU for a few weeks if I got sick like that again. I also just took a two week HU hiatus when I went of vacation (with my Hem's approval)-I felt great-no nausea, less fatigue, less headaches. Maybe you could ask about a break from HU?

Hi shhanks. Welcome to the site.

After I had seven vaccines (2 Moderna, 1 booster, 2 Shingrix, flu, Tdap) in 2021 I developed psoriasis on my scalp and some on legs. First time I ever had a skin condition and I am 78. I believe they affected my immune system.

Then in 2022 I was diagnosed with ET JAK2. I was put on 500 mg HU every day…had daily headaches. I was taken off HU for a few weeks (I take a blood thinner so was protected). I restarted 500 mg HU but every other day. My platelets were down from high of 735 to 434 at last CBC. My CBC are monthly so I hope I am stable and can continue every other day.

I had Covid at the beginning of 2022 and one bad bronchitis…otherwise healthy.

This is a great website and Lori, our moderator, has great input.

Best wishes, Eileen