Swollen ankles & feet. Red legs.

[Maisie10]

Hello everyone. I have PV Jaks 2 positive and was diagnosed 4 years ago, I am 58. It has been very comforting finding this site reading everyone’s experiences and realising you are not alone. Does anyone suffer with swollen ankles and feet with painful red legs? This happens occasionally. I went to my local GP and she has made an appointment for a blood test to check for protein in my heart. Just wondering if anybody else has had this condition.

Many thanks to you all x

[Rachelthepotter]

Dear Maisie

Welcome to the site. I haven’t had the symptoms you mention, and I have a different MPN, but its good to know that here you can reach people with the same rare condition.

Rachel

[Maisie10 in reply to Rachelthepotter]

Thank you Rachel. Hope you’re doing ok with your condition.

[MPNBlog]

Hi Maisie10

I am not a medical professional (PV Jak 2, dx 2yrs) but it sounds like erythromelalgia. Treat with 300mg aspirin daily for 3 days. I also had the symptoms you describe and GP tried many potent creams and antibiotics, suspecting a range of causes including chilblains. Haem diagnosed it in seconds. Its quite rare but linked to MPNs. It is associated with constrictions in the micro vascular circulation due to abnornmal blood. Something to consider. My GP had never heard of it. Hope you get a solution soon.

[Maisie10 in reply to MPNBlog]

Thank you so much. I am seeing my GP next week so I will mention it. I don’t see my heam until October but I see a specialist nurse 2 weeks time for my blood tests. I take 75mg aspirin at the moment and i am on Hydroxycarbamide. I was taking blood pressure tablets but my GP has now taken me off those to see if it made any difference and my blood pressure at the moment is normal. Thank you for replying as it’s good to know you are not alone.

[Susana7]

Hi Maisie, I also have PV and if I stand for very long periods I can sometimes develop swollen ankles and feet. But in my case, I think it is a side effect of my blood pressure meds (Amlodipine). All the best, Susana

[Maisie10]

Hello Susana

My blood pressure tablets were Amlodipine as well. Only 5mg daily. My GP has now taken me off them this week and so far my blood pressure is in the normal range. Legs and feet much better at the moment still slightly swollen but the redness has gone. Thank you for you reply. Hope you’re doing well

[Anag]

I had this and will always have it. Two years ago, I finally got to a vein doctor and found I had 2nd stage deep vein insufficiency! At 52! Two weeks later was a TIA and my diagnosis of ET CALR with a 823 thrombos count. I have a feeling these two illnesses go together. Thick blood just doesn’t like to move and makes friends with gravity.

I just wear stage two compression knee high stockings even in the summer (especially in the summer) even during 40 degree weather. They are a life saver. They gave me a lot of my energy back and my heart is given a break. My legs feel great. No more redness, swelling or pain. I just wear them during the day: put them on as soon as I wake up. There are very nice sheer ones too: knee-highs, thigh high and also up to the waist. My feet stay warm with them even on the cold winter. Hope to have helped. Anag

[Maisie10]

Hello Anag

Thank you very much for your reply. I will buy some and give it a go. Glad that this has worked for you .

Maisiex

[Cjsassy]

Oh/ I can relate to swollen feet & ankles.

Haven't found the diagnostic reason YET.

Changing Dr's for this.

I'll follow.

Good luck!

CJS🌹