Hi probably unrelated to my polycythemia but does anyone else have painful joints since diagnosis? My wrists and fingers hurt - especially when I’m doing yoga or putting weight/pressure on them. I’m only 49 with no history of arthritis but wondering if it is or if it’s this annoying disease of mine!
Thanks Louise x
I've always had that, but the doctors always say it's unrelated. I don't believe it.
Hubby who has ET/PV Jak2+ has bad finger joints & bad pain in his hips & thigh bone. Haemo says not related to MPN however he takes cherry concentrate & that helps the fingers a bit as helps uric acid levels but not the other pains. He's had it for years & same age as you, I moaned at him for not taking cod liver oil etc... But that doesn't help. He has GP appointment tomorrow to see what's going on & hopefully to go back to Haemo & say it is related as a lot of others in a group I'm in have the same symptoms.
Would you please let me know how he gets on with haemo. It’s frustrating that they don’t listen to us!! Thanks Louise x
Will do
I also have joint pain due to osteoarthritis. I do believe it is related. I have JAK2+PV. The JAK2 mutation can cause your body to produce an increased load of inflammatory cytokines. There is some thinking in the current research that this increased cytokine load may be responsible for many of the secondary symptoms people with the JAK2 mutation driven MPNs experience.
I following up with an Integrative Medicine specialist today regarding this and other possible related issues. Inflammation related conditions include: GERD, osteoarthritis, eczema, insomnia,; and possibly linked to some intermittent conditions: sinus tachycardia, hypertension, prediabetes, hypercalcemia. While some of these may not be "related" in a causal sense, they are all happening inside one body and certainly all affect me.
FYI - for the joint pain I am using a Turmeric-Curcumin blend. it works better than NSAIDs. I have not needed/taken a NSAID for over three years since finding a blend that works.
Ahhh thanks for taking the time to respond to me!
My haematologist also said it was unrelated - but he also said my pulsatile tinnitus and various other ailments were unrelated too! However all you guys on here are far more knowledgeable when it comes to the annoying extras that our conditions create!!
I’ll try your ideas to see if it helps.
Thanks again xx
Hi Louise, I also have aches and pains, which only started when diagnosed with ET/Jak2 2 1/2 years ago. Been to doctors so many times I think they think I’m a hypochondriac! Also my Haemo says unrelated. But read so many things on here about joint pain. Hunter5582 can I ask what turmeric you take? I use to just put the one out of a spice jar on my food then took tablets from health shop but my Haemo nurse told me not to take as effects platelet count! Sometimes I feel I get nowhere with this condition that I have to live with, but then I come on here, which I’ve not been on for ages as looking after my poorly mother, more stress, which I think definitely increases symptoms, and read all about other people suffering the same, and don’t feel so alone and disheartened. So need to start checking in with you all again. 😀
I sometimes put turmeric in my food too but don’t think I use enough to make a difference.
Did the doctor not give you any useful advice or help at all? Does anti inflammatories help? Although probably not a good idea long term.
This forum is definitely a life line when you’re feeling low. Only you guys know how it feels living with this. Thanks 🥰
Hi Louise, gp has given me amitriptyline, which although is classed as a mild antidepressant, it is for pain and tingling, and sleeping, but I don’t like to take them all the time, so just take a couple of times a week. Yes agree, this forum is a great help for advice, etc or just if you want a moan or chat 😍x
It's definitely related...it seems there is a new post about joint pain at least once a week. I'm 42 so kind of young for your run of the mill arthritis. My doctor put me on Cymbalta and I felt a difference 12 hours later. It's amazing stuff.
My husband has PV and suffers from painful shoulders, elbows and wrists. We’ve always been led to believe that it’s a symptom of the PV. He takes a big dose of cocodamol day and night or he simply couldn’t function. Interested in the cherry extract and the turmeric mentioned in the posts. Will have to do some research! It would be great if he could ease off the drugs.
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