joint pain

[TB66]

Hi all just wondering if anyone has the same issue, was diagnosed with ET JAK 2 in May, looks like I’ve had it for the past few years. I’m suffering with joint pains in my hips ( for the past 20years) but have had pains in my elbows and ankles on and off for about 4 years but they are now constant and becoming more painful.. and on aspirin and Hydroxy I thought once I started these I would feel better. Not the case, has anyone else had this.. thanks

[hunter5582]

We can have joint pain that is unrelated to the MPN; however, this kind of pain can also be related to the MPN.

mympnteam.com/resources/mye...

mympnteam.com/resources/pai....

the deregulation of the JAK-STAT pathway causes the overproduction of inflammatory cytokines. This systemic inflammation can cause its own issues. It has the potential to exacerbate other inflammatory issues.

To complicate the situation, hydroxyurea can cause arthralgia and joint pain as well as increased uric acid/gout.

drugs.com/sfx/hydroxyurea-s...

epocrates.com/online/drugs/...

The body is an integrated system where the different parts work together and influence each other. Sometimes issues like joint pain are multidetermined. Pain is a warning that something is wrong and if it is increasing should not be ignored. Suggest that you consult with a MPN Specialist regarding this issue. A MPN-expert doctor can help sort out what is related to the MPN/HU side effects and what is caused by something else. You may need to consult with other doctors, including a rheumatologist and/or orthopedist; however, do not expect the other doctors to be familiar with MPNs and how they present.

Wishing you success moving forward.

[TB66 in reply to hunter5582]

Thank you so much for your reply. I’m at the hospital on Friday and will discuss it with my consultant.

[MissLesley13]

Hi . I am also on hydrea and can say my bone pain can be awful sometimes. I remember last year when it was in my left hip I couldn't get any relief. I ended up having to take codeine as nothing would touch it. This year my hands are probably the worst for the pain. My fingers ache and my thumb constantly feels stiff and sore. I will say there are days when it is really bad and I just want to lie in a bath and then get ro bed. I hope this helps.

[TB66 in reply to MissLesley13]

Thank you 😊

[Threestreams in reply to TB66]

Some of the symptoms you describe …/are also what I experienced for a few years .. kept thinking arthritis.. I was diagnosed last year ET calr .. and now some things make sense .. 🙏

[TB66 in reply to Threestreams]

☺️

[TB66 in reply to TB66]

Thank you

[Sammy_s]

My mum was diagnosed in the summer of this year with Polycythemia Vera jak2 gene fault and put on Hydrea. A low daily dose, and in afew days she started to feel severe joint pain and general aches. Her nails also turned grey and was generally looking worse than before the treatment. These symptoms were listed as side effects of Hydrea. Mum was taking various pain killers daily due to the now constant joint pain. We sought a referral to an MPN specialist, and 10weeks later we had a consultation, and was advised the pain was due to the Hydrea and changed the medication to Ruxolitinib. Within 3 weeks, what a change, the joint pains were pretty much gone, except for the minor arthritis in her hand She always had.

Definitely ask your MPN specialist about Ruxolitinib, it has fewer side effects and is much more effective than hydrea.

Best wishes

[TB66 in reply to Sammy_s]

Thank you so much ☺️

[mag123ben]

I have had bone pain for years. From head to toe. Last year diagnosed with same as you, on aspirin and hydr and still in pain. Was taking ibuprofen but found out we shouldn't take it. Nothing else seems to work.. if anyone has a good pain killer please let me know.

[Annula]

very constructive comments from Hunter.. I had a hip replacement on 2018 which was amazing unil 3 months ago.Now having a lot of pain -it's like an action replay of pre-op pain.My physio saysI hav no gluteus muscles - I think he is wrong .Xray shows impant is in place - so why after 6 years have I started with severe pain now? is is it due to ET treatment of Hydroxy, ? I have been told it's not by McMillan nurse...???

[Hbm1]

Hi TB66

I too am JAK 2 E.T. , also diagnosed in May this year and on aspirin and 500 hydroxy daily. At the time of my diagnosis and for some months before I suffered from terrible hip pain which I knew was bone related and not joint. I’m pleased to report that this particular symptom has disappeared. I put it down to the treatment and the fact that my platelets are now under control but who knows?? Are your blood tests showing positive results?

[TB66 in reply to Hbm1]

Have a hospital appointment tomorrow so will see how bloods are doing , I’m hoping they are going in the right direction.. thank you for your reply. Everyone on here is amazing and so supportive 😊

[Hbm1]

Well fingers crossed and do let us know.😉