Long term steroid reduction and skin discoloration

[Polarabbit]

I was diagnosed with GCA & PMR in December 2012 and at the beginning of this year got down to 2mg prednisolone a day at long last, after many problems along the way. In the weeks proceeding this monumental success (for me at any rate), the skin of my legs had started to discolour, going a patchy brown/red. It was deemed to be varicose eczema, although it didn't itch at all. I maintained it had something to do with the reduction of my steroids but my consultant did not agree. In February I had to increase my prednisolone to 5mg daily prior to a cataract operation and within a week my legs were back to normal, all discoloration gone. Unfortunately due to circumstances I couldn't return to 2mg as hoped after 2-3 weeks but have had to do another slow reduction, albeit not as slow as previously. When I got down to 3mg a day again, the patches started to return and now, back at 2mg both of my legs are badly discoloured. I know that many years ago, when I first began this journey with GCA and PMR, I read about this being a side effect of reducing long term steroids but I cannot find the reference anywhere and I just wondered if anyone experienced this or know of it please?

[2013mayo]

hi,

Very interesting, I too have this problem, I get petechia on my legs and sometimes they can be large, when they start to fade they leave these brown/red patches on my legs. During the summer they all cleared up, no reduction on pred or increase, so I’ve no idea what causes them, to me they look horrendous, if anyone has an answer I’d be most grateful.

[PMRpro Ambassador in reply to 2013mayo]

Pred makes the capillaries in the skin layers delicate and scraping or bumping the skincauses them to leak, slightly different from bruises. Small ones are called petechiae, larger ones purpurae.

[Seacat30]

I believe that skin darkening is meant to be a symptom of adrenal insufficiency?

[DorsetLady PMRGCAuk volunteer]

As mentioned by Seacat30 it can be a sign that adrenals are struggling - do you have any other symptoms -

“….One symptom of the disease is darkening of the skin in places like scars, skin folds, elbows, knees, and knuckles.”…..

Does the above sound familiar?

Maybe speak to your GP, if your consultant is not helpful….

[Bridge31]

I have the red brown patches all over both shins. They have appeared almost from the start over three years ago. Every time I get a knock the injury heals and then fades to this very unsightly discolouration . Sometimes I know I’ve done it and the dark purple appears straight away but sometimes I get up in the morning and I’ve no idea where it came from.

I’m nervous of dogs and grandchildren unintentionally catching my shins. One incident took weeks to heal.

I wish there was an answer because I can never go out showing my legs again. 😔

I don’t know how I created the underlining by the way.

[PMRpro Ambassador in reply to Bridge31]

You probably caught the U symbol in the reply box just below the area you type in - the B makes script Bold until you click it again, I makes it italic, U underlines

[PMRpro Ambassador]

Hyperpigmentation is a symptom of primary adrenal insufficiency and it is due to low ACTH levels. It doesn't happen in the secondary adrenal insufficiency that is what we tend to suffer from as we are reducing our pred dose since the ACTH level is usually OK.

It's a conundrum but I distrust doctors who insist something can't be due to the presence or absence of a medication when there is plenty of evidence to show at least correlation! As we know, correlation is not causation BUT it merits a bit of investigation. I would want to be referred to an endocrinologist - and your GP could do that if your rheumatologists remains uninterested. Do you have any other symptoms of adrenal insufficiency such as fatigue etc?

I have darker patches on arms and legs due to healed petechiae and bruises the higher doses of pred caused. They are improving a lot now I am at a much lower dose.

[Polarabbit in reply to PMRpro]

Thank you for your replies. I also remembered reading that skin discoloration is due to adrenal insufficiency and have asked for ACTH to be tested but keep being told it's not necessary/appropriate (!). Don't have the fatigue except that I frequently wake at 4 or 5 am sweating buckets and throbbing especially in the extremities of my fingers and toes p, so of course I am tired through lack of sleep. I'm told this has nothing to do with andrenal insufficiency, probably just because I am getting old (73) and can't cope with the stress affecting my life just now. I have a rheumatologist appointment at the end of this month and if I don't get any joy then, plan to ask my GP for a referral, so thank you for confirming that is the best course of action. The easy bruising has always been a way of life since the early days but this is quite different. Many thanks.

[PMRpro Ambassador in reply to Polarabbit]

"I am getting old (73) and can't cope with the stress affecting my life just now."

You don't specify the stress as far as I can see and I don't want to pry - but that alone may be a reason for needing more pred. While I was caring for my husband until his death last year I needed a lot of pred to cope both with the PMR symptoms and the stress which at times still floored me. And it didn't stop with his death - the worst was 6 months later.

[Exflex]

As PMRPro informed us about capillary becoming delicate and leaky, I’m taking Aspirin 75mg on top of Pred. (currently transitioning from 2.5mg to 2mg) and bruise so easily. The skin on my right hand - my dominant hand - has a permanent purple / red discolouration. Dr says it’s because of the iron in the blood and there’s nothing to worry about - effectively get used to it.

[Indigo2417]

Hi, have just discovered this forum and this discussion. As you will see from my bio, I now have PMR. I’m interested to know how you have got on with your varicose eczema. For as long as I can remember I have bruised very easily. As I’ve got older I’ve acquired spider veins in my legs and one or two larger ones, but in 2021, I got problems with swelling and discolouration in my left ankle and foot, particularly after being on my feet for long periods. It doesn’t itch. Went to my GP who advised me it is venous eczema. Said she couldn’t give me anything for it and told me to put my feet up to ease it. Having now got PMR and just started on prednisolone, I wonder how you are getting on now?

[PMRpro Ambassador in reply to Indigo2417]

"Said she couldn’t give me anything for it "

How strange - even the NHS thinks there are things to help:

nhs.uk/conditions/varicose-...

I think I would seek another opinion.

[Indigo2417 in reply to PMRpro]

Thanks for the reply. Yes, I thought it was a bit strange at the time. She’s not there anymore and I thought, in view of recent diagnosis, that I’d raise it again with new GP who seems a bit more receptive. A couple of days recently, before I was diagnosed, both my feet swelled up quite badly and were red and tender, so that it was hurting to put weight on them walking. Thankfully, that didn’t last long, but some days in the last spell of hot weather my ankles swelled up after I’d been on my feet for a while. I’ve swapped over to soft grip socks as the ordinary ones leave quite a ridge on my leg. But when I wear trainers in the summer, I wear trainer socks and they leave a ridge round my ankles when they swell up. I want to try and look after my legs as there is a history of varicose veins in my family. Paternal grandmother had ulcerated legs and I don’t want to end up like that. I think I’ve collected quite enough conditions as it is. I don’t want to be greedy!!

[PMRpro Ambassador in reply to Indigo2417]

If your feet are swelling and developing oedema like that then you probably need proper support socks for which you must be assessed and measured to be sure it is safe. I was having swollen ankles and poor return was blamed - but in fact it was obviously my atrial fibrillation since when the medication was changed and it improved markedly, so did the fluid retention.

I wonder WHY she is no longer there ...

[Indigo2417 in reply to PMRpro]

Will send you a chat message to explain.