Anyone living with Essential Thrombocythemia with JAK2?

@janemc
This is great, I'm so glad I found you. It did two things for me,
one: started taking the sun thing a bit more seriously (though I still have a glass of red wine everyday) and
two: I no longer feel alone with the HU and/or ETJAC2. When I start to describe it to my friends their eyes glaze-over. 🙂

@kc7adk54 Thank you for sharing this. And sorry you had to undergo that. I was just curious, as I had not heard about infusions for osteoporosis. I used to take a bone formula tablet, then stopped that bc I was concerned about calcium getting deposited in arteries (eventhough I was also taking vit K with it), and now looking into taking some supplements again in addition to making sure I am getting enough calcium from my diet as my latest bone density test revealed I had osteopenia.

@jodyjazz
Yes, or they tell you how you don't really have a serious condition (like they KNOW) because it's not like cancer, and you can just take that HU, after all, they are on cholesterol meds for life, so that 's sort of the same....., like, what's the big deal. Etc.
So, yes, being able to talk about everything related to your disease/condition/experiences without being dismissed is huge. Learning how others managed this that and the other is huge. And no longer feeling alone with it is huge also! Glad you checked in here.

@gigi05 This is revised from a few minutes earlier. I believe there are drugs on the market for osteoporosis that do not cause the jaw fractures. They don't have bisphosphanate in them. I was diagnosed with osteoporosis at 65 (I'm now 72) with my first density scan. No health issues of much concern prior to that, so it was a shock. I tried calcium supplements for 2 years with no difference. Enrolled in a study at a lab in Seattle to determine if a generic form of Prolia was as effective as Prolia. It was. That was 2 years of Prolia every 6 months with an injection to my abdomen. Quick. But had to sit around for 30 minutes afterward to be certain there were no side effects. Prolia has bisphosphanate, and is in the drug family of denosumab, which can also cause jaw fractures. Guess I'll be doing some more research, as I'm certain to require further invasive dental work.

@gigi05
Actually I don't talk to anyone about it. Friends and family know I have something weird and I take a chemo pill for it..............I'm sure that is all they could say.

I did not do my "go down the rabbit hole thing" I usually do-- about the HU. I just figured if I had to take it, I would just do so and not quibble. Although quibbled to my hematologist for months before agreeing to take it. After getting on here I see how debilitating the disease and/or the medicine can be. I thought I just had an age spurt!! Which I may well have had :-0)

@kc7adk54 Now I understand about the jaw fracture. I thought you had had an accident. That's really disconcerting that you had a jaw fracture due to the drug that was supposed to prevent fractures?? Also interesting, and no doubt frustrating for you that the calcium supplements did not help. My internist is recommending calcium citrate, along with Vit D of course with K which I was already taking.

@jodyjazz I did a bunch of research on the HU. Found this discussion thread. Found a MPN specialist, or rather bonemarrow diseases specialist, after my HEMO said to just take HU, and aspirin, like no big deal, HU after all is "generally well-tolerated"!. Well, that was a bit of a shocker for me, as I , like many on here, was not on any medicines, take quite good care of myself, and did not even have aspirin or tylenol in the house. As a result of now seeing the bone marrow specialist, I have been on 'just' aspirin, and we are watching my platelets via bloodtests every 3 mos. They have been 'stable' around 480 for the past year and half. So, I have saved myself that time of not being on HU.

@kat260 thank you so much for your precise description of your appointment with this fabulous specialist. I am pretty relieved after knowing that this expert emphasizes the necessity of acting instantly. And from my understanding, it is exactly what I have hoped for. First of all it is so vital to reduce the platelets and HU is the only medication which is capable to do this. And after the successful process of lowering those dangerous thrombos the next step could start. And obviously, she prefers the more modern path of treatment, namely interferon. Has she already defined if she’s gonna use Pegasys or Besremi? Can’t wait to hear her recommendation. And I guess you are absolutely right to do this nasty biopsy. I guess this is the gold standard although I have to admit, I am happy that I could have avoid the procedure yet .

By the way, you kindly inquired about my ongoing treatment . Until now the side effects are pretty low. I only perceive red marks at the point where injection has been administered. However, my other blood numbers are too low and we closely observe this development, otherwise the danger of severe infections will increase. Tomorrow I am gonna have my next appointment and afterwards I know the exact numbers and how to deal with this issue. Hopefully we will be in touch to share our stories. I wish you a good start with HU, pleas have in mind that sun protection is key🏖️your Birgit

@gigi05
Wow, I did not know there was such a thing as a bone marrow specialist. MPN??
Good for you, ever if you eventually have to go on it, later, you have saved yourself a few years. I unfortunately cannot take aspirin in any form, with out serious stomach pain so that is not an option for me.