Joint pains : Hi all I was wondering if anyone... - MPN Voice

MPN Voice

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Joint pains

TB66 profile image
TB66
12 Replies

Hi all I was wondering if anyone else withET Jak2 suffers with joint pains… My hands are very sensitive as are my feet but recently I’ve had problems with my elbows , especially when I first get up . I’m starting my chemo tablets tomorrow and I was also wondering what other people have to say about being on these ? Do they help ? Any feedback would be appreciated 😊

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TB66
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12 Replies
April-May profile image
April-May

Lots of people experience terrible joint pains - as I did in the early days - but after taking Hydroxycarbamide they all went away. Hope you find the same happens when you take yours.

TB66 profile image
TB66 in reply to April-May

Thank you and fingers crossed 🤞 it reduces the pain 😊

hunter5582 profile image
hunter5582

Joint pain is a known symptom of MPNs. The mechanism of action may be related to bone marrow activity and/or overproduction of inflammatory cytokines. I also experience this issue, with diagnosed osteoarthritis, tendonitis, and plantar fascitis. Inflammation is the key theme in all of these conditions, including the PV. Hydroxy did not work for me and the interferons help with hematologic control but not joint pain. What does work for me for joint pain is curcumin. Under the direction of an Integrative Medicine doctor, I am also taking L-Glutathione and a Pro-resolving Mediator. Specifically targeting systemic inflammation is this way has been very effective. It makes a significant difference in reducing the level of pain and increasing level of function.

Wishing you all the best and success moving forward.

TB66 profile image
TB66 in reply to hunter5582

Thank you I have suffered with bilateral trochanteric pain syndrome for the past 20 years and had two operations . The severity of the pain in awful and I have also had tennis elbow on and off for a few years . So it looks like this could be the reason .. I will ask the GP about the medication you have mentioned.. again thank you

hunter5582 profile image
hunter5582 in reply to TB66

Curcumin is an herbal supplement. It is the active ingredient in turmeric. Your GP may or may not be familiar with it. My GP is not knowledgeable about complementary health interventions which is why he referred me to an Integrative medicine doctor. It is important to know that cyrumin is not readily absorbed by the body. It is important to find a bioavailable formulation. A medical provider with complementary health expertise can give the best guidance.

TB66 profile image
TB66 in reply to hunter5582

Thank you ☺️

william-Indo profile image
william-Indo in reply to hunter5582

Add some black pepper into tumeric will increasing the absorption of curcumin 20 times.Cheers

hunter5582 profile image
hunter5582 in reply to william-Indo

Piperine is one of the approaches to making curumin more available. Liposomal formulation is another. regardless of the approach, it is worthless if it is not bioavailable,

micky10 profile image
micky10

Hi, I was diagnosed in April, ET & JAK2 was having joint pain, mainly wrist & elbow. Since taking aspirin everyday the pains have stopped.

TB66 profile image
TB66 in reply to micky10

Thank you 😊

Planting profile image
Planting

hi

Yes I have experience of hydroxy and have been fine on it. I do have joint problems and hydroxy hasn’t been a cure for them but it keeps my platelets behavin the problem for me now is that I have to embark on a chemo radiation path for 5 weeks and have to give up the hydroxy for 8 weeks. Only been off it 2 days and my feet are really sore. Whether this because of giving up the hydroxy for the moment after 8 years I don’t know. I’ll keep you posted. Good luck to you bit scary at first but I’ve been fine on it

TB66 profile image
TB66 in reply to Planting

Good luck and thank you 😊

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