Is there any link between ET or any MPN & Osteoarthritis
I’m 48 & have ET, started getting swollen & painful finger & thumb joints which I believe may be osteoarthritis, just wondered if there’s any connection or just coincidence!
Thankyou for any replies
Melanie
I think there is a connection between joint pain and MPNs. I'm 42 and have had ET for a long time. For about a decade the joint pain would come and go but about a year-and-a-half ago the joint pain came and it never left. It was severely affecting my life. It was mostly in my feet. I started on Cymbalta and I feel much better now.
Thankyou clubdino 👍
Hi. I don't know what medication you are taking but what you describe is the exact side effect I suffered when taking hydroxycarbamide. In four weeks, I had lost the full use of my hands. My thumbs were so painful and swollen, I couldn't do the most normal everyday tasks.
It took me almost a year off the drug to find that my hands had recovered.
When this happened I was told 'it's nothing to do with the drug'! My nurse and my doctor said this but if you read the extensive documentation that arrives with the drug, this is an exact effect of the drug. When I challenged my nurse she told me that if it was the drug, it would have gone immediately I stopped taking it. Well, hey ho! Wrong again.
I have now been using Pegasys since June 2018 and although it took a while and I took no medication to treat the condition; my hands are back to normal.
I hope this helps. All the best.
Thanks Jacklina
Glad you have it sorted now
I’m not on any medication so it’s not that for me
Another mystery!
Thankyou
Melanie
Aaaw! I thought I'd cracked it for you. how wrong I was. I hope you soon solve the mystery and can move on. all the best.
Hi I am 47 E T and have osteoarthritis. But it affects my knee and hip joints. I effortlessly think there is a link. I am now waiting on a hip replacement.
Thanks Arty
I’m wondering about my hips too as ever since my bmb I have had trouble with that hip
Good luck with your hip replacement, that’s so young to be having it, I hope it helps you
Melanie
Thank you. It's to be a ceramic joint I really feel it will make a massive difference
I have been on HU since May, the past one and half month(from August) I have bone pain on my left hand and both shoulder bone pain, I can easily blame on my osteoarthritis and cold winter (in Australia) but my arthritis has never given me bone pain on those spots and coldest month was July. I do believe it's the HU contributed to it.
Gout is also very common with MPN's. As those extra cells die, they release, among other things, uric acid, which can lead to gout. Check it out with a Rheumatologist...... I have gout fro ET and it's very treatable.
Thankyou for that, I’ve just searched & found a very good list of associated issues, the uric acid being one but I don’t know how to add a photo on here!
Thankyou
If you are JAK2 positive, then there is a possible link. the JAK-STAT pathway signaling does more than increase hematopoiesis. It also can increase the production of inflammatory cytokines. These cytokines are thought to be responsible for a number of the secondary symptoms that people with MPNs experience. there is some good emerging research on this topic that is readily available if you are interested.
I have JAK2+PV along with osteoarthritis, eczema, GERD, insomnia, and additional potentially inflammation related issues. I have tried high-dose ibuprofen, meloxicam, and Lyrica for the osteoarthritis. None of these meds worked as well as a Turmeric-Curcumin blend. I have not taken/needed a NSAID in over three years since starting on the supplement. If you want to try this, be aware that supplements are not well regulated and you need to find a reliable source that provides improved bioavailability. turmeric is also mildly blood thinning and may potentiate the aspirin to some degree.
I have just engaged the services of an Integrative Medicine specialist to help with the wide variety of medical issues I am facing. She is looking into the common link between various conditions and at least initially is looking at the role of systemic inflammation. I am hopeful that something useful will come out of this.
All the best to you.
Hunter, my chemo/oncologist says that ALL NSAIDS except Celebrex are forbidden with MPN's.......
Pretty much all NSAIDs potentiate aspirin, increasing your risk of hemorrhage. Celebrex has this same warning. See below from ePocrates.
Avoid/Use Alternative Celebrex(celecoxib) + Low Dose Aspirin(aspirin)
Avoid/Use Alternative
celecoxib +aspirin
avoid aspirin >325 mg/day; otherwise, monitor bleeding s/sx: combo may incr. risk of GI ulceration, perforation, bleeding, incl. life-threatening (additive effects)
Celebrex falls in two drug classes: Nonsteroidal Anti-inflammatory Drugs (NSAIDs); Spondyloarthropathies. Perhaps the risk of additive effects is lower with Celebrex than other NSAIDs. There is a dose specific indication in the warning. Different docs seem to have different takes on the risks of combining these meds.
The increased risks of combining NSAIDs with aspirin is why I stopped using them, even though my docs [prescribed them. Add to that - the Turmeric-Curcumin works better than any NSAID I ever took for the osteoarthritis. Fewer risks/adverse effects and better efficacy is a win-win. There is even some recent research indicating that there might be some benefits from curcumin on the JAK-STAT pathway. There is also some research ongoing regarding the use of turmeric-curcumin for treating gout. Here is one ncbi.nlm.nih.gov/pmc/articl... .
Hope you find solutions that work as well as the Turmeric-Curcumin has worked for me.
What do you think about glucosamine?
Did not seem to help me, but some people seem to really benefit. My osteo-doc said that is how it works - great for some, ineffective for others.
Thankyou very much, I am also Jak 2 positive
Lots of information to look at & your history is mind boggling, I hope you are getting somewhere with getting doctors to look at the whole you, you are so right, everyone just does their little bit & you end up with contradictory treatments
Thankyou so much for replying, I am concentrating on anti inflammation as I believe that’s where the causes lie & it can only help with everything else
I wish you well too
Melanie
It gets worse. I am 83 yrs have Jak2ET and have sustained six broken bones in the last five years. The most recent was a spontaneous fracture of the left hip April 25 while simply standing still. The second was August 2 while walking with my physical therapist, essentially recovered. My foot caught in a frost heave on the sidewalk. I went down like a tree, pulverized the left leg, and shattered the right elbow.
The medical consensus was the cancer. we are investigating osteoporosis. The hip had no problem accepting the screws. The knee was a nightmare. I am small and of an advanced age but was swimming a mile daily before this began.
Fortunately I mend quickly and the arm splint is gone ( leaving a metal plate and any screws but the leg is still in a hip to ankle brace.
Please,friends, stay upright.
Hugs to you Rita Lou. I'm 60, and tiny, but fit, so this is good to know. I know ET is why my dentist says my teeth won't stay in my freakin' mouth anymore after lifelong primo dental care........ARGH!
My teeth are still in my mouth with the help of a lot of metal rods and a remarkable dentist. ET has not made things worse. Have hope
Yes. Swelling is slight but painful. I feel my symptoms are from my ET. I had these symptoms for 5 years before ET diagnosis.
Hi Melaniem59,
Another possibility might be inadequate anti platelet effects, particularly when you eat inflammatory foods. Try speaking to your medical professionals along these lines. Drs. Scherber and Geyer have published some articles about anti inflammatory diet specific to MPNs.
Good luck.
Jawas
Thanks Jawas
I’ve been following the anti inflammatory diet for mpn for some time so very careful about what I eat
Thankyou
Melanie
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