Anyone living with Essential Thrombocythemia with JAK2?

@pps26

My diagnosis was quite a shock to me, too. I have ET with a JAK2 gene mutation, no symptoms of which I was aware other than abnormal bloodwork. I'm not used to having anything really wrong with my health, but I try to count my many blessings.

I don't even take a Tylenol, so when my platelet count got above 600k and I had to start on HU I wasn't thrilled to say the least. I expressed my concerns to my oncologist and he assured me that HU, while a chemo capsule, wouldn't make all my hair fall out and wouldn't make me throw up. He said not to let the "chemo" name scare me (but honestly it still did!). But I take it, because I don't want deadly or disabling blood clots that could cause strokes and heart attacks, which because of age and family history I was already at increased risk of having. I am thankful there are medicines that can manage this blood disease. I'm also on two low-dose aspirins a day. I am now 79, btw. I feel very blessed that I'm not suffering any really life-altering side effects so far from either the ET or the medication for it, although at 79 I don't have the stamina that I did when I was younger. That's probably normal for many of us.

I also asked him if I could start at a low dose. He told me 500mg/day IS a low dose and that some people take multiple doses of it daily especially for other conditions.

At my last checkup I was having some tingling in my feet, calves, hands, and forearms (mild neuropathy), so my HU was reduced from 500mg daily everyday to only five days a week M-
F. My platelet count was in the low 200s at the time so we had some room to play with. Since reducing the HU dosage, the neuropathy is much better. I'm also now taking an under-the-tongue vitamin B12 supplement which might be one reason it's better. A B12 deficiency can also cause neuropathy. There can be quite a few different causes, and HU doesn't cause it in most people. It's only a "possible" side effect.

As you already are having tingling before starting HU, you might want to ask your doctor if there is anything you can do to help with the tingling or neuropathy. Most of my friends have to take B12 shots because their B12 levels are low.

As a couple of others have noted, HU is not like the strong chemotherapy that is given temporarily to patients with other more deadly types of cancers. It's a very mild chemo drug and even children routinely take it for sickle cell disease. We with ET need it to control our abnormal and dangerous runaway platelet production. Many people have taken HU for decades (unlike the strong chemo for other cancers). So please be reassured that thankfully it's not like the chemo your sister had to have.

Prayers and best wishes for a good outcome in controlling this blood disease we have.

@williamsjen
Jennifer, I share quite a few of your feelings. I too have grandchildren although they are all now young adults. My husband was a vet of the cold war although that was before I met him. And I too trust in the Lord to see me through the rest of my earthly life and I am thankful for my many blessings. One of my family members was also forced to take the Covid shots or else lose her federal job.

I also share your concerns about the Covid shots and ET, although I feel I'm putting on a tin foil hat when I mention them, LOL. (I don't say Covid "vaccines," because they weren't like other vaccines and the approval was rushed. They affect our RNA and that type had never before been approved for use on humans.)

Regardless, my platelet count and some related bloodwork had always been perfectly normal until my checkup in October 2020, five months after I took the Moderna Covid shots in May 2020. They had an abrupt spike which continued to get worse after that and resulted in ET due to a JAK2 gene mutation.

My doctors use an online service named "My Chart" which allows patients to view our medical records. The "My Chart" graphs of my platelets and the related bloodwork (red cell abnormalities, etc.) are flat and normal for years, until the checkup in October 2020 when they first start going haywire. I know this could possibly be pure coincidence, but the timing is very suspect. But, either way what is done is done and I don't dwell on it. I'm just glad my ET can so far be managed although I was having some neuropathy.

Just know that you are not the only person with reason to suspect an ET connection to Covid shots. I suspect that too, because of the specific timing of the onset, although there's no way to know for sure. I do not take the booster shots.

God bless and congratulations on the grand baby-to-be!

@cec2 thank you for sharing, it is great to know someone else understands. God bless you!

@eileen11108
It takes 2 - 500mg tablets daily (one AM and one PM, I guess to spread out the impact 🙂 ) 7 days a week to keep my platelets at 500,000.
I guess whatever it takes, and it seems different for each patient. It has been that way for all these 11 1/2 years. Right now things seem to be pretty stable so I get my blood checked and see my doctor every 3 mos. at my Oncology Clinic.

@cec2
Hi, i could have said the same thing, you did. I m also 79 and been on HU( five days per week) for about 4 years now, and it is controlling my platelets around 500 +/- a few. I try to remain active but either my age, HU, or ETJAK2 are making me way more tired than usual. My feet and calves are tingly but my spine is pretty stenosis-a-fied. So am looking into that now.
We are lucky to be so old and still mobile, and not on oxygen :-).
Best to you all.

I've been on HU+81 aspirin for getting close to 7 years now. I don't know if the HU or the blood cancer has caused my fatigue, I have to push myself to get things done. With regard to shots, so far I've had all the shots - DTaP, RSV, covid, pneumonia (flu shot next) and if anything, my platelets plumet down after the shots, especially the shingles shot. I sort of forgot to mention to Dr, and the drop in my platelets got them a little concerned, but gradually my platelets started going up to mid-range. I spread the shots out, don't do multiple shots at once. I spread out 3-4 weeks.....just to be on the safe side.

@appraiser1946 thanks for sharing, I put a cold towel to my feet when its tingling, it goes away and I do sleep good afterwards. Just leave it for about 5 minutes. I read it somewhere on a post.
Jennifer

Hello, I have been taking HU for about 5 months for my ET with the Jak2 gene and I'm wondering if anyone else is having sores on their scalp as a side effect of the drug? Twice in the 5 months I have taken the drug I have gotten sores on my scalp ( along with thinning hair ) but it's unusual to get sores on my scalp. I've made an appointment with my dermatologist just to cover all my bases, but just wanted to ask if anyone else has experienced this.
Thank you
Connie

Hello,
I was diagnosed with ET- JAK2, June 2026 at 67. I was told my past bloodwork indicates this may have been present for 13 years prior. I am on a low dose aspirin.
Nancy P.

Hi Nancy, @przybillan Welcome to Mayo Clinic Connect.
It’s not unusual for blood conditions like ET or even types of blood cancers to only be discovered randomly through routine blood work. Because many of these disease are very slow to develop it can take repeated labs trending over time to indication a potential disorder. So, according to your past blood work your doctor must have taken a closer look to see that the platelet level was trending up over the past 13 years.

Being on the low dose aspirin helps to prevent platelets from sticking together, avoiding blood clotting issues.
Was this your primary care physician or are you working with a hematologist?