PMR and Chronic Spontaneous Urticaria with Angioedema

[calibriel]

Just wondering, as this is yet another autoimmune condition that I appear to have developed, whether anyone else with PMR has been diagnosed with this? FYO, if you’re not already aware, it’s a condition where allergic-like reactions - maddening rash, swellings of the face and tongue - are generated spontaneuosly, i.e. without an identifiable trigger. Ho-hum. My immune system seems to have been upset by everything I’ve been through medically this year. Fortunately, now they’ve ruled out drug intolerance and allergy and fallen back on this diagnosis, I’m now on a medication that seems to suppress it.

[Sophiestree]

My husband had what they called Idiopathic Angioedema. His face would swell up to unrecognisable sizes. He knew when it was going to happen as his lips would start to tingle first and if he could get to a doctor quick enough for some pred then he would be OK, if out or working with no GP then it was awful.

He was put on very high doses of antihistamines - fexofenadine and montelukast. I personally think it was stress related, but who knows. The problem with those high doses of both drugs is they can affect the liver and as his was not great to start with, by the time he was ill (and died) he had developed some serious liver issues.

[calibriel in reply to Sophiestree]

So sorry to hear about your husband: it sounds awful. Yes, Fexofenadine and Montelukast are the drugs I’m on. I don’t know if it’s stress-related for me: I am under a low level of stress most of the time - my partner has fronto-temporal dementia - but there doesn’t seem to be a pattern to my episodes; except for the fact that it generally starts with the rash. I haven’t found any short-term stimuli: and believe me, no-one has ever accused me of under-thinking anything!

[Sophiestree in reply to calibriel]

So does the pred not help with the episodes? I mean higher doses.

Love that.... under-thinking!!!

[calibriel in reply to Sophiestree]

My PMR is fortunately quiet at the mo (🤞) so I’m normally on a low dose of pred, though I’ve been given a temporary bumper dose a couple of times to clear an episode of angioedema

[PMRpro Ambassador]

There have been one or two people in the past with urticaria but it hasn't been common as far as I know, You have my sympathy - itching is a pain ...

[calibriel in reply to PMRpro]

The itching is bad, but the facial swellings are worse. I’ve had my tongue swell up more than once, and that’s seriously scary

[PMRpro Ambassador in reply to calibriel]

That I can imagine!!!

[YogaJM]

I developed urticaria a month or two after developing a PMR type illness. Treated with cetirizine as required and the skin inflammation subsided with the decreasing inflammation in my body. Good luck!

[Towdy]

AERD and CIU followed. By PMR. Dupixent sorts the first 2 & pred the last . Steroids now for 14 years and on a downward trend

[Broseley]

I developed chronic idiopathic urticaria about 10 years before PMR. I would suddenly get hives, mainly in the areas where you sweat most: between my legs, under my arms etc. It could happen at any time but it mainly occurred when I was at work (as a secondary science teacher) so may have been stress related. I noticed that before the rash appeared I would get a strange electrical feeling in my head and around my mouth. Luckily I didn't get any swelling or rash there.

My GP referred me to dermatology who put me on loratidine. This kept it at bay - totally. She said it was related to my T cells and would either last a year or twenty years and to come off the tablets after a year and see. Sure enough it had gone, never to return.

[Waves2]

I have recently developed urticaria after several years on pred, currently on 4.75 mgs. It appeared a couple of months ago ... itchy skin and rash on my back, arms and legs..after a stressful situation at the beginning of a holiday. Initially diagnosed as eczema and treated with steroid cream with diagnosis changed to urticaria about 10 days ago. The itching has reduced but the rash remains. Now advised to use emollient cream ..supplied on prescription...and take a daily antihistamine tablet. I asked for a prescription for the latter but was told to buy it at the chemist.. I thought I had come to the end of unexpected side effects but then...you should always expect the unexpected with this condition 😁

[AtopicGuy]

I found an interesting information sheet from the British Association of Dermatologists here:

mft.nhs.uk/app/uploads/site...

[calibriel in reply to AtopicGuy]

Thank you. That is interesting

[Hoofprints]

Is it worth getting a referral to an angioedema specialist? I think there's someone at the Royal London Hospital, but bound to b others across the country.

Also consider having your bloods checked again to see if there's any other autoimmune or different type of vasculitis going on. I am anti-C1q antibody positive and know to that is associated with both hives and angioedema.

I think there are tests around blood markers to do with C1 esterase inhibitor that look for acquired and hereditary angioedema. Such tests might be helpful in tailoring treatment.

Good luck 🍀

[calibriel in reply to Hoofprints]

Thanks. I had a blood test last week. Not sure what they were testing for - I’m normally quite alert to detail but tbh I’ve had such a blizzard of medical experiences and info recently, I’ve slightly lost track. Hoping to hear soon if that shows anything up

[Hoofprints in reply to calibriel]

Completely understand. Good luck 🍀