PMR with Erythema nodosum

[cmj33g]

I am just wondering if any of my dear friends on here have Erythema nodosum alongside PMR.lt is much more rare at only 1 in 100 000 but causes horrible sores and blisters on my arm together with severe inflammation of the joints near the lesions. It is more common on the legs actually. Strangely my PMR is virtually resolved and only on 1mg pred now. Hence the resurge of my EN l guess.

[Hidden]

Hi

I’ve not heard of it before so have attached a link from the British Association of Dermatologists. (BAD)

bad.org.uk/shared/get-file....

How long have you had it & what is the treatment?

Kind Regards

MrsN

[cmj33g in reply to Hidden]

Thanks for replying. I had it in 2015 2 years before onset of PMR .treatment is difficult. Steroids are preventative but not useful if an attack is in full swing. Tetracycline helps.

[Hidden]

Oh dear that looks sore. It's getting the balance I suppose and it a shame its rearing it's head.

[PMRpro Ambassador]

If the higher dose pred helped - I'd be asking to stay there ...

[cmj33g in reply to PMRpro]

Yes l agree. But they are adamant l must get off them. X

[PMRpro Ambassador in reply to cmj33g]

Find a realistic doctor. Quality of life is all. What dose worked reasonably well?

[cmj33g]

It was ok till below 5 mg x

[PMRpro Ambassador in reply to cmj33g]

So you could be far better on 5mg pred?

medpagetoday.org/rheumatolo...

There are many many people on a similar dose of pred who are fine and able to live well. That is more important than any possible putative risks of low dose pred.

[cmj33g in reply to PMRpro]

Ok great. I've an appt with rheumy in 2 weeks. I think she'll go with it.

[MariGrace]

I had erythema nodosum with Behcet's Disease. That was in the early 90's and after 2 years of major meds (100mg pred a day) plus 5 other meds, hospitalization, awful.

It is in remission. My rheumatologist asks me about symptoms every visit. My nodules were large, deep, nearing the bone.

Not good. Does your doctor know?

Thinking of you.

MariGrace

[Coachev]

I had erythema nodosem when my kids were very small. When they were in high school I developed PMR. Do you think it's related? Do you think the erythema nodosem caused the PMR?

I was also put on put on steroids. Rheumatologist kept saying that I was not having another flare up, and at that point I had such pain. He didn't bother looking in to see if it was pmr, because I was too young. They also would not diagnose the PMR. They said I was too young. However, when my pulmonologist put me on prednisone for an asthma attack all the pain went away. Surprise surprise.😣steroids made me whole.

[PMRpro Ambassador in reply to Coachev]

How old were you?

[Coachev in reply to PMRpro]

Around 35 for erythema nodosem. PMR when I was 50ish.

[PMRpro Ambassador in reply to Coachev]

Relief of pain with pred isn't diagnostic for PMR - it is just one building block in the wall of diagnosis, especially when a moderate dose achieves a result in a very short time. It also differentiates between fibro and PMR - which can appear very similarly.

I would be surprised if the EN caused the PMR and if it resolved quite quickly 15 years ago with appropriate treatment and has never returned since it might suggest it was a stand alone episode. BUT cases have been seen in early vasculitis so it isn't impossible that a similar underlying problem has caused both.

I had what fits the pattern for ME/CFS when I was in my mid-20s, the acute episode lasted about 6 months before burning out and hung on as fatigue for a few years. In my mid-30s I had another episode of fatigue which my gynae thought was early menopause and used HRT which worked brilliantly. Within a year of stopping HRT, PMR sailed into town. There is one form of PMR (that is only the name for the symptoms, caused by an underlying disorder) which is caused by hormone imbalances. But a great deal of the diagnosis to link the things is still in its infancy - or not even discovered.

I think there are a lot of interlinked conditions - but you only see them in hindsight, sometimes 20 or 30 years later. You can't blame the doctors at the time really.

[Coachev in reply to PMRpro]

Interesting. Thank you for taking the time. Perhaps i wasn't clear. The PMR or whatever it was, kept retuning every time i tried to wean off.. i saw a multitude of rheumatologists, and they had no idea what was going on.

[PMRpro Ambassador in reply to Coachev]

PMR can last a long time (median of just under 6 years, 40% of patients still need some pred after 10 years) - and the pred doesn't cure anything, it just manages symptoms. You need as much as you need to manage the symptoms and if you go too low they return. You are never heading relentlessly to zero, you are looking for the lowest dose that manages the symptoms and this appears to be a fact that escapes a lot of doctors!

[cmj33g]

Thanks for this. It wasn't 15 years ago it was 2015. Then in 2017 PMR started and at this time ESR and CRP were raised. Fibro was ruled out on this basis and no tender places corresponding to fibromyalgia. Steroids brought it under control. Hence EN was also kept at bay. As PMR declines after 2 and a half years my steroids are reducing so EN returns. Azathioprine would control both but l kept being sick. Thanks for your insight

[PMRpro Ambassador in reply to cmj33g]

My reply immediately above was to Coachev

[cmj33g in reply to PMRpro]

I'm sorry my email alert said for me. Atleast lve found someone else with it though.

[Hidden in reply to cmj33g]

The poster gets informed of all replies... Whether or not they are the direct recepient of a message. 🌻

[PMRpro Ambassador in reply to Hidden]

Beat me to it!!!

[cmj33g in reply to PMRpro]

Yes sorry folks!! But even with my stupidity l am very grateful for every ones' responses. It's all helped me.

[PMRpro Ambassador in reply to cmj33g]

No problems - the logic of this forum escapes me at times believe me!

I have to say, in your case I WOULD wonder if it was linked to the vasculitis initially - but how do you tell?

[Coachev]

I also had high CPR aaaand sed rate. They sent me to infectious disease Doc. He didn't find anything. For many years I felt I was imagining the crippling symptoms.

[Jo1947]

I developed EN with Sarcoidosis. My treatment was steroids, can’t remember the dose, but EN was the lesser of the ailments and went very quickly, I avoided hospitalisation by promising the rheumy I would rest up. I was overwhelmingly tired and couldn’t do anything. I was 50 at the time. I seem to get unusual things. Have PMR at moment getting Dow to 3-1/2 msg after 2 years, have under active thyroid and need B12 injections every 3 months for life, are all these things connected I wonder

[PMRpro Ambassador in reply to Jo1947]

Possibly all autoimmune yes - B12 injections is usual for pernicious anaemia and hypothyroidism is often a/i

[MsDirecto]

I had EN when I was in my late 20's, Doctors guessed at everything from spider bite to heat reach (?on my shin in winter? The only medication I was taking was oral contraceptives. I took myself off them and the EN vanished. About 3 years later, I got them briefly during pregnancy. Since I felt they might be hormone-related, I just waited them out. They didn't last long and have never reappeared. Mine seem to have related to estrogen.