Nodules re-inflamed and painful, similar experience anyone?

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Hello all, 

Hoping someone might let me know if they have had a similar experience to mine.  

I've had erythema nodosum for 12 years..I'm 37 years old, general dodgy health, suspected fibromyalgia, possible sarcoid with no evidence to support.. chronic long time asthmatic with a nearlifetime of steroid use..  My daughter was born in September 2004.  I had been hospitalized more or less continuously for the last 3 months of the pregnancy with my lungs and was on massive doses of IV steroids for the duration. When she was 4 weeks old I woke one morning with my legs covered in huge roaring red nodules, the heat from my legs was unelievable and I was in agonising pain. Because I could barely move my arms or legs my husband dressed me and carried me to the emergency on call doctor where I was told it was a rare virus and it would clear up.. needless to say it did not! My GP the following morning diagnosed erythema nodosum.  That flare up lasted approx. 6 months and was the most severe I've ever had, I remember I was still unable to walk in December of that year.. No further episodes then until 2009 or so when it flared up again, the pattern since then tends to be feeling dreadful for the week prior to the nodules appearing, a whole system shut down, like a really bad flu.. a nodule or two appear, things slowly improve, another two or three appear and so on and so forth for anything from a month to 6 months.  This happens around 4 times a year..sometimes very mild, sometimes the joint pain and fatigue leave me housebound and needing sleep from morning to night.   

This current flare up started about 2 months ago, just two nodules, one on each ankle, much larger than the more recent episodes and the usual horrible fatigue, the joint pain was not as severe as usual.. the odd thing this time is that they seem to have re-inflamed (for want of a better description) four times now.. they fade a little, I feel marginally better, and within a couple of days they are even larger and more painful.. No further lumps just the same ones that seem to improve but then return for no obvoius reason.  I would be grateful if anyone who has experienced somethign similar could let me know their experience please.  My GP is lovely but sick of me, and I can no longer take the steroids so it seems there is little else he can suggest other than to suck it up!  Getting weary of feeling like this now! Thanks! 

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4 Replies

  • Posted

    Poor pikkumyy, seems we have the same kind of flare-ups. Have you ever tried a high dose of ethinyl estradiol? The medicin I took with this oestrogeen hormone was called lynoral. This used to work very Well for me. Please try oestrogene hormone pills. A gynaecologist might help you with this.

    I am on holiday right now. Next week I have more time to share my experiences with you.

    Take care and hang in There! The painful nodules will disappear, finally. Trust me!

    Best wishes, Annelice (the Netherlands)

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  • Posted

    I have been through the same thing with going to ER to ER and Doctor to Doctor.  I finally found a Rhematologist that I really like and she started me on Meloicam and Plaquinill both for inflamation and I am now able to live my life without being bed bound.  It can take up to 6 months for the Plaquinill to work but I am telling you it works.  Meloicam is also the best.  I have been steroid free sense March 23 2016 which is what I wanted.  Go to a Mayo Clinic if they can not figure you out.  That is what I did and they work with my local Rhematologist.  Together they have came up with this med plan for me.  I had deep tissue biopsys done on the lumps.  That is the only way to really diagonose you correctly.  I have 2 things that it may be.  Eryethma Nodosum and sweet syndrome which can act alot like Eryethma Nodosum.  Hope this helps.
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  • Posted

    Hi I have a very similar story, my daughter was born in 2008 and about 8 weeks after her birth I became very ill. I had an incredibly high fever 104+ and had red large nodules all over my legs. I was completly exhausted and went to the hospital where they ran several test and diagnosed me with a virus. They didn't know how or why I had it, nor did any of the medication help anything. After that episode I didn't have any other issues untill 3 years ago, when one day I had a huge nodule on my left shin. It swelled up really bad, I can't remeber if I was exahusted, but I was in severe pain all over, my ankles swell really bad. I went to my PCP and he had no idea what I had and sent me to a dermotologist. They biopsied on of the nodules. They thought I had morphea, but it turned out to be erythema nodosum, the doctors gave me a medication, I can't remeber the name of it, but after almost 2 years of having leg issues it was finally gone. The doctors were not able to tell me why I have it, how I got it, if there is any underlying condition nor how to treat it aside from antiinflamitory medication, but I am allergic to ibprofen. Anyway, it went away for about a year and about 2 weeks ago it apeared on my right let, just as painful!! I don't think I have any more answers then you do, but were in the same boat. 

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    • Posted

      Thank you all so much for coming back to me, my apologies for not thanking you sooner. The nodules cleared up eventually and I've had a number since but less oddly behaved! The joint pain/fatigue have worsened during this time however and I've since developed what I suspect is nerve pain in my hands/feet/scalp and am wondering if the EN was down to sarcoid after all.  I'm wondering if these are neurosarcoid symptoms I'm having now. Anyway, lovely of you all to respond, Thank you.  I do hope things have improved for you.

      Thanks again! 

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