Anyone living with Essential Thrombocythemia with JAK2?

@esperanzam
Forgot to say that the PA told me that day that the way they treat those with LOW platelets is to give them steroids ... to increase their platelets! I still take them on occasion if I really need them. I would not be terribly afraid of another steroid injection but I just have to work with my PA on my chemo (Hydroxyurea) dosage. Right now I am having shoulder problems which I have had before. In the past (about 7 or 8 years ago) it was a calcium deposit and the treatment was a steroid injection with dissolves it, hopefully. Well, it took two steroid injections about 4 months apart but it did dissolve it and took care of the problem. I am not sure if I have the same problem but possibly will have to do the injections again.

@esperanzam thank you for your information. Hips, shoulders, backs…it would be nice if our bodies would give us a break now that we are dealing with ET! I am waiting for an appointment for my hips so more to come. I hope your husband can get his levels down, carpal tunnel can be so painful.

@dewz13
Thanks! Let's stay in touch. It can only help to learn from each other.
Sandy

I was diagnosed 10 years ago and began taking hydroxyurea daily to reduce the platelets from 1600 to the 600 range. My count is still above the 400 normal range. I take 9 hydroxyurea caps weekly as higher doses cause my tongue to swell and restrict breathing and eating. I am blessed with a balance that works for this day.

Wondering does ET cause you any pain and are you permitted to take NSAIDS? for the pain

I never had any pain with ET ...and I've had it for 9 years...probably longer before it was diagnosed.
No problem taking pain meds.
Hope that helps.

@1995victoria I get leg / bone pain at night occasionally. I think it has to do with water and exercise. Both seem to help eliminate the pain. But my Dr said I should only take Tylenol. I am on Hydrea 500 mg daily and low dose aspirin. Take care.

@jfranz60 yes, my oncologist also said only tylenol. Luckily a friend told me to make appointment with pain mgmt doctor. As I told my oncologist, tylenol doen't do anything for my pain. I was taking tylenol and still had horrible bone pain, I kept asking oncologist (5 years) for something else, said no NSAIDS, only tylenol Pain Mgmt Dr confirmed that tylenol doesn't alleviate pain for everyone, bingo, that's me. I was rx'd tramadol for my bone pain. My bone pain is worse when I have a lot of activity during the day. and I agree hydration is important, dehydration can make pain worse.

Interesting bit of news for ET patients: Yesterday, 8/31/26, The FDA approved Besremi for the treatment of Essential Thrombocythemia (ET). It improves not only the platelets levels (in some patients by 56%), it also decreased the JAK2 mutation burden, actually modifying the disease.

Several article links:
Onco Daily https://oncodaily.com/hematology/besremi-essential-thrombocythemia578363

Health Tree:
https://healthtree.org/mastocytosis/news/08-31-2026-fda-besremi-approval-for-et
This is the first new drug approval for ET in 30 years. For some patients this may have the potential for durable remission. HU can help keep the platelet levels lower but it doesn’t impact the JAK2 mutation. This may be something to talk over with your hematologists. Feed back from ET members?

@pattycz best wishes to you, I know the word "chemo" sounds so bad. But, if its going to keep us around for a while I can deal with it. I also, hate the word "blood cancer" There are doctors that says it is "a Blood disorder" so that is what I am sticking with. I do contribute it to the Covid shot. My platelets are staying in the 200s, I see where some doctors lower the dosage, hoping that can happen. However, I haven't seen much side effects. Best wishes.