I was diagnosed with cellulitis 5 or 6 weeks ago, I’ve had 2 lots of antibiotics, 2 scans to make sure no blood clots, this redness has spread around my leg and is now starting in the other one. My left leg and foot are quite swollen. I’ve seen various nurses and GP’s - never the same one twice - the last GP was a locum, only there for a couple of days, who said he thought it wasn’t cellulitis but connected to my ET. The patches are warm and tender.
I came off Anagrelide just after this started as I’m starting new treatment shortly, probably peg interferon. I have a haematology appointment on Thursday, I called them to inform them about my leg and they’ll check it then, however none of them had heard of erythromelalgia - don’t know if I’ve spelt that correctly.
Anyone had cellulitis before and does it look like this? Or erythromelalgia?
Any advice gratefully received.
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lizzziep
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This is very much like what happened to me in early 2020. I had a very sore ankle to start with, which was diagnosed as cellulitis. It cleared with antibiotics but seemed to return a couple of weeks later on both my lower legs, with swelling. It looked like your photo. Eventually they diagnosed venous insufficiency, I was told there was no cure but I should wear compression socks every day. However, I was later admitted to hospital with breathing difficulties and diagnosed with progression to Myelofibrosis. My legs were carrying 10kg of excess fluid by then, but over a couple of weeks after leaving hospital, my legs returned to normal and I never had signs of venous insufficiency again. I have no idea whether there was a connection to MF or whether it was a coincidence. In hospital, they also found that I had dangerously low sodium levels which may or may not have been related to the swelling (I would have thought swelling would result from high sodium but I suppose bodies are complicated!).
I am NOT suggesting that you are progressing but I thought sharing my experience might help a little. I would suggest that you urge your haematologist to investigate this.
Thank you. I am, apparently, transforming to mf, according to bmb a few weeks ago. Which is why I've been taken off Anagrelide and probably going on peg interferon. I'll have that confirmed on Thursday. I did wonder about venous insufficiency, I don't know anything about sodium, another question I need to ask! Thank you.
The haematologist I was seeing at the time didn't think that my blood results pointed to MF. Once diagnosed, you won't be surprised to hear that I changed my haematologist! I think that the blood revealed a possibility but a BMB was needed to confirm it and to show the grade of fibrosis.
That does not look like any erythromelalgia I have ever heard of. I have experienced that myself in the feet/tos. It looked quite different.
The one doc may be thinking that this could be a DVT. That would be ET related. It sounds like the other docs are thinking cellulitis. That certainly seems possible, but none of us are qualified to provide an informed opinion on what this is. It is clear that whatever this is, it is beyond the scope of a GP to assess and treat. This condition requires an assessment by a specialist, likely a dermatologist. This is an emergent condition that should require urgent care. If it is a treatment resistant cellulitis or some other dermatologic condition, the dermatologist is best qualified to treat it. If it is actually an ET-related vascular issue, then the hematologist is best qualified to treat.
Please do let us know how you get on. Wishing you a speedy recovery.
I also believe that it has to do with the veins. My mother-in-law’s leg looked like this for a while and then turned to a leaky sore.
I’d go to a vein specialist and have a thorough check with a proper ultra sound to look at all the veins in your legs. So important for us especially! I do that every two years at the latest.
regarding dropping anagrelide: I changed to Besremi last October, and until today, I have only been able to reduce my anagrelide by half. My MPN specialist is trying to reduce one while increasing the other. I should be dropping to a 1/4 the original dosage next week. I don’t know about Pegg but ropeginterferon alpha 2b takes longer to kick in in some patients like me.
I don’t have MF. Please ask an MPN specialist about that. Make sure the thrombocytes are in a reasonable range. Please advocate for yourself. 🙂
I hope you have a speedy recovery. If you have sweating or a temperature make sure you go to A/E my brother in law had septis and was in hospital for two weeks .
Im not saying that's what you have but you need to have it checked and they need to make sure your blood isn't showing any infection in it
There is a dermatological condition called erythema nodosum which looks similar to this ....it may be worth you looking it up and discussing with your GP...you can look it up on derm net nz which is a reliable source, with good clear explanations and images too xxx
Thank you very much for speaking up. I have two spots on my shin that baffled two clinic nurses last week. Pictures I found upon researching erythema nodosum that you noted nailed it. I have a dermatology appt next week for experts to tell me what it is. Wondering if they will be baffled, too, so taking my notes and pictures along. I started Peginterferon low dose injections one month ago and that surprised them, too. They knew it is usually referenced for hepatitis treatment which is apparently not so common here and which disease I don't have. No mention of it for MPNs, however, so surprised them twice in one visit. Invaluable information about MPNs being shared on this site. So grateful for the helping hands.
I used to work as a nurse in dermatology....but have met someone recently with similar problems with her skin...and I think that was her diagnosis. Good luck with your appt and hope you get things sorted x
Yes. I was diagnosed with that in late February when I also had a blood clot. yes, it is associated with ET . My legs improved in about a week. Cool ice packs helped. Jyst last week I had tingling and pins and needles in my legs but it went away. I read that baby aspirin helps so perhaps your hematopoietic will suggest that. Please let us know how you get on.
Thank you, this has been going on for 5 or 6 weeks, I do get tingling, pins and needles in the red patches. The scans indicate no blood clots, going for another one to check blood flow.
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