Anyone living with Essential Thrombocythemia with JAK2?

I have a question: can GLP-1’s help with platelet reduction, or help with ET symptoms in any other way? Anyone have experience with this?

I am happy to say my platelets are 400, with highest 565 a few years ago. ETJAK2 since 2023, currently HU 500mg Mon-Fri. My spine is badly "stenonis-afide" and I am sure that is the reason for my numb feet. My hemo says that people on my "low" dose of HU usually do not have any side effects (propaganda perhaps). Since I am 79, I think it is impossible to say what is causing what. I am sure ageing, and banging my body around, in sports and adventures as a young person have not helped.

Hello~
I have a question for everyone- I have ETJak2 and on 500mg of Hydroxyurea daily. Platelets are in line after 6 months. At times when I seem to be coming down with some other virus like a cold or flu that circulates, it seems my symptoms from either the ET or the Hydroxy flare up as well. Dizziness, shortness of breath, ears ringing, fatigue... along with the cold symptoms of congestion, sore throat etc... Is this normal? Does anyone else have experience with this?

Also, second question, once platelets are in line and otherwise healthy, do side effects still occur from the ETJak2/Hydroxy? Symptoms of the dizziness, shortness of breath, fatigue, etc....

Thank you!

I have also had to take more than 1,000 mg daily in the past when I was getting steroind injections for my hips and back pain. It has been about 8 months that I have been stable on 1,000 mg daily of the Hydrea.
I had three days a week with 1,500 mg on those days and 1,000 the other days. That was enough increase to get the platelets back in the safe zone. I have also suffered from anemia because it affects the red and white cells also but I am doing better because the doctor prescribed some iron tablets which I take every other day and have changed my diet to include a lot of iron. My iron levels are much better.

@esperanzam are you saying that you had to increase Hydrea because of the steroid shots? Hip pain is starting for me so am curious…
Hope you are feeling better.

@sarahgault Sounds sorta familiar. Some days I have "uh-oh, I'm getting the flu" type symptoms in the evening, especially when the fatigue hits. But flu never develops, and I feel fine next day.

When I do get a cold or something, the lead time seems to last longer. I feel it creeping up for sometimes five or six days, before the bug erupts.

HU lowers your immunity, so my theory is that my system is trying harder to fight off bugs. I do get flu and covid shots, and I sometimes wear a mask in winter if I am someplace crowded, though I have pretty much learned when peak periods are at the coffee shop, grocery store, etc., and I avoid those times.

I have been sick only a few times in the 8 yrs I've been taking HU, and never with anything I could not shake.

@jodyjazz

"I am sure ageing, and banging my body around, in sports and adventures as a young person have not helped."

Right there with you with degenerative spine, but all those adventures are pretty good mememories, no? 🙂

@sarahgault hello. I am on HU since early 2025. 500 mg/day. My platelets are now at upper end of normal range. My symptoms are much better but I still have symptoms. For me some numbness in the feet. I am physically active and even exercise my feet to try to eliminate the numbness I still have. It could be from the HU, but the numbness started before my diagnosis, so I think it is an ET symptom. My dizziness and ear ringing are mostly not noticeable anymore, but occasionally I get some ringing in my ears. Sometimes a little shortness of breath, but much less frequently or severely than before. Provided I have lower platelets, I don’t think I am very sensitive (i.e. symptomatic) to routine platelet variations (they can vary 100,000/mg routinely), but perhaps you are? Also, everyone seems to experience their symptoms a bit differently. So, it can help to track symptoms every day on your own so you can explain it better to your doctor. I use a little notebook to track, but there are also online trackers you can use.

@nohrt4me Would not trade em for anything !!

@dewz13
Well, yes. I didn't know it at the time until my Oncologist PA told me that the steroids do increase the platelets. I'm not sure why we have to learn these things little by little or by accident if we don't know to ask. But that is the way I have found it to be. I am finding out now with my husbands diabetes that steroids also increase the blood sugars and cause lots or problems for diabetics. He was just diagnosed with severe carpal tunnel syndrome but they cannot do surgery or steroid injections to treat him until he gets his sugar levels down. He has been well controlled but illness and stress does not help but elevates the sugar levels.
So, I try to use steroids only when I really need them and work with my oncologist to offset the effects with an increase in the dosage of Hydrea. I have had two hip replacements and back surgery so I have dealt with all of it and learned along the way. Like one of the group said, what we have, Thrombocythemia is not very common and many, even doctors, don't know all there is to know. So we discover. It is good to share our experiences with each other.