Hi everyone . I previously did a post regarding a rash or red spots on my lower legs which some of you kindly replied to ....the rash itself appears to be beneath the skin and is sometimes quite red first thing and then gets lighter as the day goes on .
My question is to those who have it is does it ever go away or is it a side effect of hu or et that is common and stays put ....my doctor doesn't seem to know what it is and says ask your heamotologist ... I've had it for about 8 weeks and I have an appointment on the 8 th of May ....Thankyou to everyone for all the support on this forum
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Pippa63
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I know someone also with MPN and she suffers badly with vasculitis which she describes as looking as if she has chicken pox. It seems as if blood vessels are bursting under her skin. It may or not be that but maybe someone else here can have any ideas.
Hello Pippa, I too have a nasty rash ever since I started with PV and BEFORE Hu started . So I do think it is part of our type of disease. I find the description I put to it is like mini bubble wrap very itchy and very red and sometimes hot sometimes cold. it too is on my shins, I have been through so many treatments Light therapy about 12 different types of creams, ointments and so, nothing seemed to work then after about three years it disappeared, hooray and I had been clear for the past 7 months and I thought that's the end of it, this week wham it's back to full volume and intensity. My doc sent me to the skin specialist after biopsy's light treatment and the creams ect he ended up just shrugging his shoulders and said 'well I don't know what it is' I tried vasaline which helped to a certain extent, then Tea Tree Oil Cream. that helped a lot but I had to get in on line. Less expensive that the chemist.
I have no clue how to get rid of it. Or how to stop it reoccurring , just know you are not alone and remember it could be the disease rather than meds. Sorry to be so negative but we need to be aware of all possibility of treatment available , so try Tea Tree oil cream and I do hope it works for you. Best wishes J.
Is it some kind of chronic hives? (I just happened to be reading up on allergic reactions, hives, urticaria etc - one of my kids!) Though I guess dermo would have ruled it out.
Hi Ebot, Been tested for everything and all they do is shrug their shoulders, I guess I will have to except I am a unique person, an enigma, so to speak . Hey ho , off to the docs again in an hour to see if there has been a breakthrough. Holding out NO HOPE, but thank you for the suggestion, best wishes. June
Well good luck. I think we’ve got to a stage where we think there must be an answer for everything - and there just isn’t. My MiL - who has been very poorly for months and has been tested every which way - and my daughter which her odd allergic / anaphylactic episodes are both in this boat. Have come to the conclusion that once all the nasties and not so nasties have been ruled out, and on the basis we’re watchful, we just have to find new ways of ‘being’ and living / managing. It’s a bit of a philosophy in progress! 🙂🙂.
I think I have commented before on this, sorry to repeat myself. My ankles and lower legs are covered on the little rashes and spots. I am going to get a biopsy next week to make sure it isn’t a pre-cancer sore. I am still blaming the Hydroxiacarbonide, which I have been taking for 12 years now, I am very worried about taking this chemo drug for such a long time.
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