painful elbows

[Fairydust1111]

I have now been taking Hydroxy for 3 months having been recently diagnosed with ET in February and from week 2 of taking, both my elbows are extremely sore. My consultant doesn’t think the pain is a side effect of the drug but I am a performance dancer of many years and never have had issue with elbow pain in my life. Very interested if anyone else suffers pain on Hydroxy ? I would really appreciate any feedback, thank you.

[Cat1001954]

I suffer with painful legs and arms sometimes I believe it’s a symptom of ET

[Fairydust1111 in reply to Cat1001954]

very interesting Cat, thank you for replying, appreciated

[hunter5582]

Hydroxyurea can cause a number of adverse effects, including joint pain, arthralgia, and gout; however, that does not mean that what you are experiencing is necessarily a HU adverse effect. Dysregulation of the JAK/STAT pathway causes the overproduction of inflammatory cytokines. This predisposes us to a variety of inflammatory issues. Joint pain can also be something completely unrelated. Sometimes timing of the symptom is the only clue we have as to which is which.

You will need to seek consultation with the appropriate specialists to get to the bottom of what is going on. Consult with an orthopedist is certainly indicated. It would also be a good idea to consult with a MPN Specialist rather than a regular hematologist if you are not already doing so. MPNs are rare disorders and most doctors have little experience with them. Here is a list just in case. mpnforum.com/list-hem./

I experience significant joint pain due to osteoarthritis, tendonitis, fascitis, etc. Systemic inflammation can be a real problem for people with MPNs. I consult with an Integrative/Functional medicine doctor for help with this issue. Fortunately, I have found some things that help. I use Curcumin, L-Glutathione, and SPM Active. Note that this is under a doctor's care and my entire care team knows what I take. Some complimentary interventions can really help but should be used with care in regards to the potential for drug interactions.

Wishing you all the best.

[Fairydust1111 in reply to hunter5582]

Hunter, I cannot thank you enough for taking the time to reply to my question at length. You have provided me with very relative and informative information all of which is very enlightening, bless you x

[J-fd in reply to hunter5582]

I also suffer with pain and never knew this , so it’s answered a lot for me , thanks

[plum27]

My experience is that I was on hydroxyurea for the first couple of years after diagnosis and suffered progressively worsening arthritis in my hips and knees, to the point that walking and getting in and out of and sitting, in the car were quite painfully unpleasant, and sometimes just sitting at home or laying in bed. I didn't have such problems before. Thinking I might soon have to give up walking, I told my haematologist and I was then switched to pegasys interferon on the premise that I might be intolerant to hydroxyurea. Over the following year or two the arthritis gradually abated, as well as other adverse effects of the hydroxyurea. I now go on hour long walks with only occasional, slight discomfort if I'm too aggressive and get in and out of the car without thinking about it, except sometimes I remember how it was and appreciate how lucky I am. The aching in my legs persists, but the pain in my joints is entirely gone.

[Fairydust1111 in reply to plum27]

Thank you kindly for sharing with me as I am a newly diagnosed patient. I am glad that you are feeling much better with a change of drug and I wish you continued improving health. I will mention your comments to my consultant. Thank you

[ritaandscooter1]

Sometimes I think the MPN it's self causes on and off joint pain. Having not been on any drug but aspirin for over 20 years, I get on and off pain in a knee that eventually needs to be replaced and have a recent muscle glute injury that is taking forever to heal. I think that the bodies increased cytokine production and increased inflammation can make joints that have been readily used over the years have the most inflammation. Sounds like your elbows have been readily used over the years as a dancer........perhaps that is where the inflammation goes due to overuse? Just guessing. It may have nothing to do with HU. (I have PV Jak2) Best of luck. Kerry

[Fairydust1111 in reply to ritaandscooter1]

Thank you so much for replying Kerry. Your tho ughts are very informative and helpful and I take them on board. Take care of yourself🙏

[RazB]

I’ve been on Hydroxy for 15 yrs, I have joint and bone pain periodically. I have always thought that it’s the ET causing it but perhaps it’s re drug too. It’s definitely a side effect of ET. Hope you find a helpful and natural solution, as Hunter says there are several things that can support and help. Xx

[Fairydust1111 in reply to RazB]

thank you for your reply, very much appreciated. Glad to know I’m not the only one 🙏

[Oscarsboy]

I can appreciate your pain. At the moment I have severe pain in both shoulders down to my elbows to the extent I can't even turn over in bed as its too painful. It's there all day but not as severe as when you suddenly sit for a while, watch TV etc. I too am Et jak2 and 2 years on hydroxy. I have a f to f in july when I am going to tackle this once again. In the meantime I was fortunate to see a physio 1 to 1 at our surgery who did a thorough check of movement, or lack of it and now have ultra sound scans in June to see if it will show up the inflammation he thinks is there. Again I never encountered this before Et or hydroxy. Its all a bit of a quagmire working out exactly what causes what living with an inflammatory disease. Hunter's info is always so helpful. Many thanks to him and hope you can sort your elbow issues out.

[Fairydust1111 in reply to Oscarsboy]

thank you so much for your reply, much appreciated. Thank you for sharing, I feel your pain as well. Just getting older is bad enough… without this 🥴🙄 takcare of you and hope your pain subsides soon 🤞🤞

[mbr8076]

Hi Fairydust1111

I was diagnosed with ET Jak2+ 5 years ago an and have been on Hydrea and aspirin for the same amount of time. I have just started having elbow pain every once in a while; it doesn’t last long. I believe it is in relation to the systemic inflammation we have with the MPN more than the Hydrea. Today, my feet are burning with inflammation:/

We all need to find a way to reduce the inflammation in our bodies to reduce the symptoms of our condition.

Best to you on your journey

[Fairydust1111 in reply to mbr8076]

thank you so much dear friend for your opinion. It is very much appreciated. Wishing you good health and sending my best wishes to you

[ET500]

Thanks for this inquiry, it has generated some good information. I have had joint pain for many a year with Hemo doctors saying it isn’t anything to do with ETJak2 or medication . My GP thinks and is treating it as fibromyalgia, as have all the symptoms and tender points.. think I will try and get some more information . Take care everyone…

[Fairydust1111 in reply to ET500]

thanks ET500, your response is much appreciated. My consultant doesn’t feel the pain is drug related but I am a dancer and never experienced pain like it before . As long as my other joints aren’t effected in time, can live with it but to never dance again is not even worth the thinking about. Take care of you🙏

[Plavers]

hi Fairydust,

It’s difficult to tell sometimes what’s from what! I was diagnosed with arthritis in the hips before ET but the pain now is in the knees. I’m 73, Then a couple of months ago I suddenly got Bursitis in one of my elbows with pain and a pouch! Never had it before. I’m an actor but with all plays these days the seem to want ‘interpretive dance’ to mask the scene changes. I find it’s the knee bending that’s murder for me. Lovely to have a forum that we can moan in and yet get very good advice as well. Good luck with elbows.

[Fairydust1111 in reply to Plavers]

Thank you Plavers for replying and sharing with me, much appreciated. I can cope with the elbows, just… dread to think as a contemporary dancer what it would be like if pain does to my knees, arrggg!! Keep trucking on and best of luck with acting and health 🙏