Polycythemia and joint pain in big toe

Posted by sen1991 @sen1991, Apr 9, 2023

I have Polycythemia and recently have severe joint pain in my big toe, I read this can be caused by Polycythemia, went to dr. Had x-ray of it and he said it’s arthritis, question is could this be caused by it and what are my options or is there none?

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I found out I had ET last fall and in January had a severe case of gout in my big toe. I have read from others in some of these threads in similar circumstances. I suppose they could be related, but my oncologist did not make that connection.

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@sen1991 Welcome to Mayo Clinic Connect. Ow! Having pain in the big toe can be pretty frustrating, right? It may make you not want to get out and walk much, or try to find a pair of shoes that fit comfortably for the moment.

Here is what Mayo Clinic has to say about polycythemia vera: https://www.mayoclinic.org/diseases-conditions/polycythemia-vera/symptoms-causes/syc-20355850
You will see that indeed pain in the big toe can happen with this condition. Are you under any treatment for the PV? What lifestyle changes have you made to work with the PV condition?
Ginger

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@gingerw

@sen1991 Welcome to Mayo Clinic Connect. Ow! Having pain in the big toe can be pretty frustrating, right? It may make you not want to get out and walk much, or try to find a pair of shoes that fit comfortably for the moment.

Here is what Mayo Clinic has to say about polycythemia vera: https://www.mayoclinic.org/diseases-conditions/polycythemia-vera/symptoms-causes/syc-20355850
You will see that indeed pain in the big toe can happen with this condition. Are you under any treatment for the PV? What lifestyle changes have you made to work with the PV condition?
Ginger

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I’ve been getting checked since 2007 for it. I started eating grapefruit this winter, I do exercise a lot, so basically pretty healthy, I’m not overweight I do have type 2 diabetes, I’m back to getting phlebotomy’s every 2 months. Dr say’s this is arthritis but I think it’s caused by poly

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@springer44

I found out I had ET last fall and in January had a severe case of gout in my big toe. I have read from others in some of these threads in similar circumstances. I suppose they could be related, but my oncologist did not make that connection.

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So did anything help?

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@sen1991

So did anything help?

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I didn’t consult my doctor or pharmacist when the gout started as I had had it once before about 4 years ago. I thought I knew what I was doing but I guess I had forgotten what I had done previously. I started taking 2 naproxen sodium once a day and it didn’t seem to help much. I also was not drinking enough water. Then my pharmacist recommended taking both Tylenol and naproxen 3x a day (staying under the daily maximum dose) and I started drinking a lot more water. after a couple of days the swelling, inflammation (heat) and pain decreased considerably. A week later, it was mostly gone. Unfortunately, I suffered a lot in the first two weeks. That gout pain is horrendous! So the take away: drink lots of water and consult you pharmacist or doctor right away to come up with a plan to treat it.

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