Essential Thrombocytosis - what's your experience with Jakifi?

Hello @susanflower and welcome to Mayo Clinic Connect. I am sorry to hear your itching and burning skin is getting so bad. Member @scottmatteo shared about their experience with Jackifi and may be able to come back and share more with you.

What would be the tipping point for you to consider trying Jakafi?

The tipping point for me to try Jackifi would be if/when my hematologist decides my platelet count is at a level that I absolutely need a chemo drug. Right now it is 526. My only symptom now is the itching skin especially on arms and back. I’m going to see a dermatologist soon to see if possibly it could be from other skin condition, allergy, etc.
Thanks for your response. This disease can be frightening.

If you don't want to take a chemo drug, you could ask about Pegasys (interferon).

I take hydroxyurea for platelets. They came down from 800 and swim around in the 400s now. Docs prescribe chemo more on clot history, age, and mutation type than platelet count.

Actually feel better on the chemo, but it didn't do much for itching.

MPNs cause the body to over produce histamines, hence itching. I take Claratin every day + Benadryl lotion or tabs if it gets bad. Helps.

I too have ET and take Hydrea.......it is not as scary as it might seem. I only have occasional nausea, nothing I cannot handle. I would be afraid to be without it because of the platelet count

I also have ET. For 10 years now hydroxyurea works to keep my platelets in normal range
but it’s side effect for me is the skins cancers. I see the dermatologist every three months and she freezes early stage . But have had 37 surgeries. Most squamous, others basal cell and one melanoma Yes I wear lots of uv protective clothing.

Today, My husband is on his last infusion therapy of Rituximab. His platelets count on 1/23/2023 was 1,000 & Dr sent him directly to the hospital. After 4 days in hosp, IVIG, steroids, antibodies, platelets rose to 150,000. Two wks later, they dropped to 10,000 & began Rituximab. Platelets count have bounced downward from 62, 29, & today the last IV treatmt was 36. He'll continue with blood tests every 2 wks per his oncologist. His doctor believes this is a residual effect from covid during Christmas this year.
Has anyone else had similar stats & what has helped you?

Sorry, I didn't quite follow this. Does your husband's doc think the jump to 1,000 was caused by covid infection? Then, with treatment, it fell back to normal?

What is rituximab? Another JAK inhibitor like ruxolitinib/Jakafi?

I have not had covid and am CALR+ (not JAK2), but something I will ask my doc about. Thanks for posting.

@nohrt4me
Oncologist currently is thinking my husband's low platelet count is a result of his being sick with Covid at the end of Dec, 2022. He never had a problem before then. A normal platelets count is between 150,000 & 450,000. He was admitted to hosp because his platelets count was at 1,000. That is VERY DANGEROUS. The doctors were shocked that he hadn't begun to bleed anywhere in the body, even inside from organs or from the skin, or even nosebleeds. The blood would not have clotted & high chance of death. In the hosp he was given iv platelets & antibodies, plus steroids. When his Platelets went to normal at 152,000, they sent him home. A couple weeks later, it dropped again & has stayed low (29,000, then 62,000, then 36,000 yesterday.) He's had 4 IV infusions of Rituximab, which to my understanding it is antibodies. I'm not savvy on medical terms or names of meds. Feel free to Google the med, that's what I always do.

@nohrt4me
I looked up your CALR, too many blood cells? Is that correct?
My husband's cell count is ok, just the platelets are way off. Thrombocytopenia is what he has. I hope & pray you get better as well as my hubby.

I have essential thrombocythemia (ET), too many platelets. All other counts were normal as of January, and I have been stable on daily oral chemo, knock wood

The main concern for ET patients with covid seemed to be the clotting effect of the virus, because we already have clot risks as part of ET. I had not heard that covid or the covid vaccines might cause thrombocytopenia, so your husband's experiences were news to me.

Hope he continues to improve!