My husband was diagnosed with MPN, ET in 2018 aged 59 and has taken daily Hydroxycarbamide and alternate day aspirin. Physically we have bumbled along with the odd excessive nose bleed, no major physical changes although he did suffer with his mental health but thats improving.
But 6 weeks ago his left leg, below the knee and above the ankle swelled badly, he was sent for a blood clot scan which was negative; swelling went down, was advised no more action needed.
Last week his right leg swelled in the same place but was red, angry and very painful. Sent for a blood clot scan which again was negative. He has been asked to make a follow up appointment with GP.
Has anybody experienced this? Does he need to ask any specific questions? Thanks in advance. He doesn't do computers so asked me to ask for him, many thanks ☺️
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jyah
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That sounds like it could be edema, which is a known hydroxycarbamide (AKA hydroxyurea) adverse effect. Note that renal failure is another known adverse effect. I would also wonder about ruling out gout. This would require checking kidney function/uric acid levels.
WARNING/CAUTION: Even though it may be rare, some people may have very bad and sometimes deadly side effects when taking a drug. Tell your doctor or get medical help right away if you have any of the following signs or symptoms that may be related to a very bad side effect: ... Swelling in the arms or legs. ...
Suggest you follow up with the hematologist ASAP, Hopefully this doc is a MPN Specialist. If not, suggest getting a second opinion from a doc with MPN expertise.
Hi, I have had intermittent swelling of my left foot and ankle. Just last week my big toe became swollen, about 50% larger than right one, also very red , foot and ankle also swelled. Turns out it is gout. I guess gout can be fairly common with PV or HU, I was told. I was initially diagnosed with ET 4 years ago, turns out it was really PV.
Whatever the cause I think you need follow up with a mpn specialist or a internal medicine specialist. Best to you.
I have ET with Jak2+ and I am on Peg Interferon now for 8 years. About two years ago I had my left foot, jus under ankle swelling, red and angry looking. My GP diagnosed me with Encephalitis, two times antibiotics to clear that dangerous infection. However, since then I still have slight swelling on my left foot, some time more than other. GP and docs don't know why. My suggestion is to get GP/docs to keep digging in to find the reason?
hi, I take hydroxycarbamide and aspirin everyday for PV. My side effects so far, mouth ulcers, weight gain and fatigue. At one point I thought I had swollen ankles and foot - but wasn't sure if this was to do with weight gain. Am now on diet. I hope the doctor does some investigations for your husband. Good luck.
I have been taking hydroxycarbamide for about 5 years but have not experienced symptoms like this. My advice would be to contact your haematology doctor asap and ask for his opinion. It may be a reaction to the drugs but equally it may be something quite unrelated, so you do need to get professional support.
I have had swelling of my feet and ankles, but not my lower legs. I've had lots of other side effects, but not life threatening. It doesn't sound like gout to me. I've had that PRIOR to taking HU, and it was strictly limited to my foot, and base of the big toe. I agree with Hunter that kidney function should be checked due to the edema.
I havnt had swelling but i often get all manner of sensations in lower legs. Particularly my left. Cramps, pains, restlessness.
Ive had scans done one when the pain was severe i thought there may be a clot. But nothing was found.
What helps me though, is staying active thoughout the day. Avoiding long periods of sitting. Housework, walking, stretching, massage. Actually i self-massage quite alot with heat creams. Thats been the only i found to minimise these sensations.
We saw our GP tonight and gout has been ruled out, last blood test showed kidneys functioning well within the range. He was asked to contact our Haematologist Consultant tomorrow and see what they suggest and he's booked in for another blood and urine test. swelling and soreness has subsided. Thank you for your help...
have been on hu for nearly 15 years , but not asprin - but other blood thinners.
i have had red/ hot/ painful swellings on legs. those that have not been insect bite related turning into infection have been now diagnosed as 'lipodermatosclerosis' that now involves a loss of flesh, but started with swelling. and pain.
it all relates in my case with problems with the large veins and swellings of valves etc. my pv has been a bit uncontrolled and platelet count too high for a few years which i think has affected my legs. warfarin was good. now on rivaroxaban.
i have been diagnosed over 20 years so this may not be relevant to your husband at all and i agree with others - more systemic issues need to be discounted. more scrutiny until you have an answer.
oh dear yes see your haemotologist straight away, I've had no swelling, sometimes itching but i would stop taking my tablets if anything unusual happened. Good luck, hope it gets sorted quickly.
Sorry for a slow reply and I really hope that things are now a bit better. I would take people's advice above and ask to see a specialist. Hunter has a wealth of knowledge and is very generous with his expertise so that is worth taking note of too. I started Hydroxycarbamide a year ago with daily asprin and was proper poorly with ghastly joint pains and a awful rash. After a visit to A and E, it turned out I was alergic to the various meds they had given me for the side effects. It took a couple of months to get this out of my system but after that I am fine and have no symptoms of Hydroxycarbamide that I can see. I am 61, do loads of exercise and my ET platelets are steady at around 340 . None of this is much use I guess, but just to say you can get through this with the support of the group as I did last year. Good luck and take care.
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MPN ET Jak2+ HU Photo attached
Leg Pain With ET & PV
ET and low ferritin with fatigue
