living constanly for over 3 years with Erythema Nodosum

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I am a 40yr old female.

Ive have had this condition for over 3 years without any respite.

I have had X rays, blood tests, biopsy, scans you name it!

For 3 years i have had painful red lumps and bruises on the front sides and back of my calves, Swollen ankles and knees often accompanying them.

I have to take care when travelling/flying. I am very aware of how ugly they look and am very consious of them in the summer.

As one lumps disapears and leaves a bruise, another one appears, at the moment i have 6 on my left leg and 5 on my right leg including one that is 4inches long and 2 inches wide that looks like a nasty bruise, this one has been there for the last 3 months.

I have read that the lumps disapear after 6 weeks, not in my case, i havent had a break from this condition since day 1. As yet, no underlying condition has been found, my consultant has just prescribed the drug DAPSONE.. The side effects this drug can cause are quite worrying so im undecided as to wether to forget the drug and continue to live with the pain and the lumps.

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5 Replies

  • Posted

    I hear your pain. It's been 4 and 1/2 years for me and they are still unable to find any cause for it. As the same as you mine have never gone away. Mine had now gone to affect my ankles.
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  • Posted

    Hi, I had this condition on both lower limbs. It turned out I had sarcoidosis, of the lungs. When the sarcoid cleared up, so did the erythema nodusum. I expect this has been ruled out in your case. But just a thought.
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  • Posted

    i have been on dapsone for just over a year and mylump cleared up. in fact at first i thought it was a bite. have been off dapson for 6 days and can feel that there is trouble brewing under my skin as it is tightening. mine started on the shin, cleared itself and moved down to near my ankle and that is when i went on dapsone. had no side effects on dapsone but it did not read well when i got it.
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  • Posted

    smile

    I've also suffered en for over 4 years, it started after I had a marina coil fitted! 4 consultants later, I now travel to London 4 times a year to see a rhumatologist called Dr xxxxxxx. He has given me my lift back... Things are not perfect, but getting there. He originally prescribed declefenac which reduced the flare ups so I no longer need crutches and sticks. For the last year I've been taking Methotrexate (used for rumatoid arthritis), this has really transformed things. Now the lumps and bumbs on my legs are tiny and occur rarley, usually just under the skin so not visiable at all. My right ankle has residual damage so still causes a few problems. So don't give up hope.

    I've never had my hormone levels checked so after reading a lot of coments linking en to estrogen unbalance I'm going to push for that!

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  • Posted

    i've had the condition for 10 years now.... i don't see any dr's for it anymore, they couldn't find the obvious cause after 6 years.. the red lumps appear not only on my legs but also my arms,but never on the torso. they do get me down and now they are hell of a lot bigger and more painful than a couple of years ago.... i do go through some months of having nothing at all and then they just flare up.. i might look at the usa medical sites, just to get a different view. i'd like to see them gone though! NSAID's are ok' but after 10 years on and off them i have developed a stomach ulcer..... just a tip,to stop joint pain then give up eating tomato's and anything tomato based.
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