big toe swelling

[marleque]

I have E.T. and my big toe is red on the back side and has swelling. I have had this for months. My hematologist says it looks like gout and see a podiatrist if gets worse. It was painful in the beginning but not much pain now. Have read where toe problems are common with MPNs. Anyone else have a problem with big toe without an injury?

[malachy]

Hi Marleque please read Ska r's posting below you may find it useful. I have heard many people with MPN ' who suffer with toe and gout like problems. I hope you get yours sorted out! Good luck!

[sschram]

i posted a reply on an earlier post that my right toe swelled about 2 years before my PV was identified. it was not the gout and was not an infection. I believe this was the first sign of my PV. The swelling almost disappears after giving blood but comes back as my blood count rebuilds.

[marleque in reply to sschram]

Thanks for your reply. I have E.T. and am not taking any medication. Hydroxurea was recommended but have not taken it as I am trying Nattokinase. Prior to diagnossis have never had a problem with my toe.

[linds]

Hello Marleque,

Gout was how my PV was discovered. It started with my toe and spread to my whole foot. Doctor ordered immediate blood tests and results were very fast - appointment with haemetologist very next day. Since then even with venesections my gout returned so once inflamation was down I was prescribed Allipurinol daily which I still take two years on.

Best wishes

Linds

[marleque in reply to linds]

thank you for your response. Does the Allipurinol keep the gout from returning? And without side effects. Funny my foot swelled and turned almost purple the year before on the same foot.

Hematologist said after last resort it is a broken blood vessel. How sad that so little is known about our diseases even by our specialists. Hoping this is now changing.

[linds in reply to marleque]

I believe that is exactly what it is meant to do - I certainly have not had any recurrence since taking it. No side effects for me and I do have a friend who has taken this drug for many, many years with no side effects. His gout had no relation to an MPD by the way.

I had wondered about seeing if I could manage without it only because I seem to be taking so many pills since beginning Ruxolitinib and my regular blood pressure pills, however, the gout was so miserable I then think, no I'll keep to the pattern. Good luck to you - foot pain of any type is horrid so hope you get rid of it soon.

Linds x

[marleque in reply to linds]

Thank you for your reply. I will keep that in mind if they determine it is gout.

[sksar]

Hi Marleque As Malachy has pointed out I have just posted on this very subject ie both big toes looking as if they have had some trauma but they haven`t. I`ve just been told its probably gout - hope you get sorted soon.

[marleque in reply to sksar]

Thanks. My last uric acid test was excellent but that has been a couple years so better ask to have it done again,