Shingrex and ET platelet levels

Flu shot almost killed me as a teenager; bloody vomiting and bloody diarrhea and hospitalized for 3 days (yet: every one tries to push flu shots) Shots are helpful when you don't reacted. The child next door almost died getting his vaccines and landed in hospital. My children got all their vaccines. It depends on your health and reaction. It's not your fault and every one system is different. The 2x that I got flue shot; I almost died so when doctor pushed Covid 19 shot I had to say no; this made some doctors angry. We know our bodies, we know our reactions. Do what's best for you! Find doctors who will listen. Extra prayers

The patient in the article cited did not have ET. There is nothing I see that indicates any danger to an ET patient, unless that patient also has a history of ITP (immune thrombocytopenia).

I have had Shingrix, pneumonia, yearly flu shot, umpteen covids. Blood counts did not change for me after any if these shots, probably because I have never had a history of ITP.

Anyone who wants to discuss with their doc, the direct is: https://onlinelibrary.wiley.com/doi/10.1002/ajh.26143

I had seven vaccines in 2021 (3 Covid, 2 Shingrix, flu, Tdap booster. I developed psoriasis on my scalp and some on my legs. I have never had a skin condition before, So I feel they affected my immune system.

I did not know I had ET JAK2 at that time. I looked back at my labs for that year and platelets rose slowly.

Yes, we all react differently to vaccines,

Eileen

ET can do a number on your skin, hair, and nails in lots of ways. Could be the hydroxyurea/could be the ET itself.

My hair is thinner and drier, skin is more sensitive, face, hands, and feet sometimes burn. Nails grow in odd shapes unless I keep them short. I use hypoallergenic, fragrance free soap and shampoo. I keep my skin moisturized religiously. No topical hair products. I tried biotin for a year, but didn't see much difference.

For me none of this is much more than a minor nuisance, but it hits others harder.

I REALLY wish that docs would address some of these side effects when they prescribe HU so people can be prepared. Most seem to think you should shut up and be grateful that you don't have to undergo the infused chemo that acute cancer patients get.

Do you have ET? While not attributing causality, vaccine might reduce platelets in someone with ET, not necessarily ITP. I will have a follow up blood test to see if my platelets returned to "normal" Or there might be interaction between HU and shingrix vaccine? Will be interesting to explore.

Yes, I am CALR-ET for at least 15 years, and I'm sure I come off like an insufferable know it all at times.

I used to talk to a lot of fellow ET patients, and it seems like everyone has different physical and psychological responses to it. The type of mutation also seems to cause different responses to the disease. Some experts have talked about seeing CALR and JAK2 as different diseases altogether, and they treat them differently.

I'm not pooh-poohing anything, but I do try to be a bit skeptical. Some anecdotal info just scares people and adds to the stress of carrying around a chronic illness. Last I heard from Dr Mesa at Mayo in an online forum and from my own hemo is that the two main vaccines are safe for most ET patients, especially since ET patients are more susceptible to the clotting effect covid may have.

ET patients who are unvaxxed can wear masks during surges and high transmission seasons to protect themselves and others.

The two things that I know of that have a proven cause and effect on lowering platelets are infused chemo for an acute cancer and pregnancy.

yes, I had hair thinning first year. My nails are still splintering and still on HU. but worst side effect (gut) stopped after about one year. I never had any symptoms of ET, symptoms came from HU

I was dead tired and had concentration problems and headaches. HU helped that, which I was pleasantly surprised about. I didn't have gut problems, though that does seem to be a common complaint for many others, and it's a documented side effect of the drug.

I think symptoms from ET might vary with age, progression stage, mutation type, an individual's tolerance for discomfort, what kind of work they do, etc.