ET and Joint Pain

[Trueblue8]

Hi, I am ET JAK2, having been diagnosed earlier this year. I'm on 1000/500 Hydroxycarbamide alternate days. I'm managing pretty well and keeping active by running to try to alleviate the tiredness. One side affect I do have is quite severe joint pain in my lower legs first thing in the morning. This might be nothing to do with the condition but just wondered if anyone else has experienced the same symptoms? Kind regards

[Mica11]

Yes, I had bone/joint pain quite badly. Doesn't happen often now my platelets are in normal range.

[Trueblue8 in reply to Mica11]

Thank you for your reply it's much appreciated. Ian

[Stefandjill]

I have PV and get joint pain very badly. We are currently away with friends who are avid walkers but we have to make our own entertainment because my knees and lower joints are torturing me. I think I need a knee replacement much sooner than I wanted to.

[Trueblue8 in reply to Stefandjill]

Thank you for your reply it's much appreciated. Ian

[hunter5582]

Hard to be sure, but is possibly related. If you are JAK2+ then there may be an increase in your levels of inflammatory cytokines. The JAK-STAT signaling pathway does more than increase hematopoiesis. It also can increase the production of inflammatory cytokines that are thought to be responsible for many of the secondary symptoms we experience.

I have a JAK2+PV and experience secondary inflammatory symptoms including: osteoarthritis. eczema, insomnia, GERD, an other issues possibly inflammation related. The one thing I have found that helps is a Turmeric-curcumin blend. I have not needed nor taken an NSAID in over three years since I started on the supplement.

All the best.

[Trueblue8 in reply to hunter5582]

Thank you for your reply it's much appreciated. Ian

[clubdino]

Yes I had the horrible pain in the legs and feet especially first thing in the morning. The pain progressed to the point that I asked for a reduction in work hours. I'm only 42. It was the first time any of my doctors took my complaints about the pain seriously and I was started on Cymbalta for the pain and my pain has drastically improved. I want to scream it from the rooftops for anyone with MPN induced joint pains....CYMBALTA!!! Lol

[Trueblue8 in reply to clubdino]

Thanks for your reply, it's very much appreciated. I will look into Cymbalta! Kind regards

[Bea_W]

I am also ET JAK2 and have experienced bone and joint ache. I spoke to my consultant about this last time I saw them and it turns out I was very deficient in Vitamin D (unsurprising as I've spent a lot of time in hospital and not much time enjoying the sun)! Since then I've been taking prescribed supplements and have really noticed a difference. Just thought I would mention it in case it could be something that is amplifying it.

[Trueblue8 in reply to Bea_W]

Hi, thanks for your reply, some useful advice about supplements, which I will look into. Kind regards