Anyone living with Essential Thrombocythemia with JAK2?

@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.

@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.