Essential Thrombocythemia (ET) and viruses

Posted by arti4 @arti4, Oct 8, 2022

I was diagnosed with Essential Thrombocythemia a few months ago, and I’m positive for JAK 2. So far, I have a “mild” case (platelets are below 600) and currently taking only 2 low-dose aspirin a day. Since my diagnosis I’ve gotten 2 colds/viruses. The first one turned into pneumonia, and I’ve never had pneumonia in my life; I’m currently sick with another cold or virus and on day 6. I feel like it’s getting progressively worse each day instead of better. Is this because of the ET? Is this how every little illness is going to be from now on?

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

I think research is being conducted on whether an anti-inflammatory diet (basically a Mediterranean diet) can help with ET symptoms. It will be interesting to see what they find. A lot of people take big doses of turmeric supplements because it is an anti-inflammatory. However, turmeric can also interact with aspirin or other anti-coagulants. So I'd discuss supplements with my doc to make sure I didn't run a risk for bleeding.

My hematologist and GP both recommended that I take a multi-vit with calcium.

I find that cutting back on sugar and wheat-based starches (bread and pasta) seems to help with my energy levels. I will absolutely crash in the afternoon if I eat any kind of highly processed food. I learned this the hard way when I was dealing with my mother's funeral arrangements and estate and stupidly went through the drive through for a smoothie and small bag of fries.

I think everyone has to balance health and quality of life. In my case, I'm nearly 70, I already have ET and some co-morbidities to worry about, and I am not going to deny myself some small eating pleasures once in awhile, though I might wait to enjoy them in the evening, when the fatigue isn't going to hit me as hard.

REPLY
@appraiser1946

Hello there, I was diagnosed with ET in the summer of 2022. My platelet count was over 700 at that time. My hematologist/oncologist put me on 500 HU and a baby aspirin per day. This brought my platelets down to 500. My oncologist then put me on 1000 MG’s of HU and one baby aspirin per day and this brought it down to 420. My husband and I caught Covid. After five days my husband tested negative and did not feel that bad. It took me two weeks to test negative with Covid, and I felt much worse than he did. I am very tired each day and have some dizziness. I did take the Covid vaccine and booster prior to developing ET. I am now reading and looking at some studies on the Covid vaccine. These studies are showing that the vaccine will cause platelets to change. There are many articles about Covid vaccine and platelets if you Google it. Can anyone relate to this Connection between Covid vaccine and change in your platelets. This is so very upsetting.

Jump to this post

Hi there my son is only 25 and has been diagnosed with ET and IBD that at started after his second Pfizer vaccine. He had never been to that doctor and started to feel weak and tired after the second does I too have read up in this but doctors say no.

REPLY
@claire39

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

Jump to this post

I also have ET. I need to find out if it is Essential Thrombocythemia or thrombocytosis? I don’t think I even spelled those right. My Dr said your platelet count for a woman should be around 500,000 and mine were 1.2 million. I was tested for leukemia that was a painful test but gratefully negative. Dr said no hormones and an aspirin daily. But I need to know more. Not a day goes by that I don’t have a major headache. Im tired and I do get sick a lot. Spent a week in the hospital with pneumonia. Any advice would be appreciated. Im 58 years old.

REPLY

Hi. I have ET and I have been taking Hydroxyuria for almost two years. It is keeping my platelets at an acceptable level. I find I am fatigued quite a bit. I was just wondering how to combat the itching. I take an allergy pill daily, but I break out in hives and they come and go. It’s just sometimes they are just relentless.

REPLY
@julieanna57

I also have ET. I need to find out if it is Essential Thrombocythemia or thrombocytosis? I don’t think I even spelled those right. My Dr said your platelet count for a woman should be around 500,000 and mine were 1.2 million. I was tested for leukemia that was a painful test but gratefully negative. Dr said no hormones and an aspirin daily. But I need to know more. Not a day goes by that I don’t have a major headache. Im tired and I do get sick a lot. Spent a week in the hospital with pneumonia. Any advice would be appreciated. Im 58 years old.

Jump to this post

I was confused by this also. My hematologist told me I have Essential Thrombocytosis but my paperwork said I had Essential Thrombocythemia. I investigated this and found they are one and the same. Reason why?

Eileen

REPLY
@eileen11108

I was confused by this also. My hematologist told me I have Essential Thrombocytosis but my paperwork said I had Essential Thrombocythemia. I investigated this and found they are one and the same. Reason why?

Eileen

Jump to this post

according to the nhlbi.nih.gov website: Thrombocythemia refers to a high platelet count that is not caused by another health condition. This condition is sometimes called primary or essential thrombocythemia. Thrombocytosis refers to a high platelet count caused by another disease or condition.

REPLY

Hi Artie 4
Have you had the covid Vaccines?

REPLY
@sandy1959

Hi. I have ET and I have been taking Hydroxyuria for almost two years. It is keeping my platelets at an acceptable level. I find I am fatigued quite a bit. I was just wondering how to combat the itching. I take an allergy pill daily, but I break out in hives and they come and go. It’s just sometimes they are just relentless.

Jump to this post

I heard Claritin works for the itching.

REPLY
@bettyk49

I had a TIA at the end of 2014. After seeing many Doctors one Doctor referred me to a hematologist. Who is also called an oncologist. I have chrons and most of the past 9 years I have been anemic and I would just go and have an iron infusion. I usually have low red blood, white, hematocrit but high platelets. I have infusions for chrons also. I was looking for something on my My Chart and found I had Essential (hemorrhagic) thrombocythemia. I have so many conditions on My Chart I never noticed it. I never really fill great but I thought it was because of my chron and fibromyalgia. My Oncologist has never suggested I take anything for this disease and never really mentioned it. I can't take asprin because of chrons. I do take a blood thinner which was prescribed by another Doctor. I am usually given a choice of whether to come back to the Doctor in a month and a half or three months. I just thought if I get to feeling too bad I would just make an appointment and have another iron infusion. Does the name ( hemorrhagic) make the disease I have different from essential thrombocythemia?

Jump to this post

Hi @bettyk49 I see you’re new to our forum and I’m happy you found us. You recently discovered that you have essential thrombcythemia. With your history of a TIA, the blood thinners you’re already on play an active role in treating ET since having too many platelets can cause abnormal blood clotting. So the blood thinner is taking the place of the aspirin.
It’s good that you’re seeing an oncologist/oncologist. That is a blood specialist. I’m surprised he/she didn’t talk over your diagnosis with you. I think at your next appointment with your hematolgist or their Nurse Practitioner, you should discuss what you’ve found on your My Chart so there is some clairification for you.
You were wondering if hemorrhagic thromboyctyemia is worse than essential thromboyctyhemia. They are one in the same. Essential thromboycythemia was formerly know as Hemorrhagic thrombocythemia.

When is your next appointment?

REPLY

Thank you so much. My next appointment is March 13. They have been giving me a choice of 6 weeks or 3 months and tell me to call if I need to come in sooner. I choice 3 months but after reading my chart I wished I had an earlier appointment. I have had many iron infusions. So when I start feeling real tired I call for a sooner appointment. I had the TIA in 2014 and I have had chrons since 1990. I just thought they were keeping check on my anemia. Is Essential thrombocythemia a blood cancer? When I looked it up that is what it said. I definitely will talk with my PA. Thanks Again!!

REPLY
Please sign in or register to post a reply.