PMRGCAuk
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Introduction

Hi All,

I have found your contributions invaluable and express my appreciation. My situation is as follows:

- Diagnosed with PMR and commenced on 50mg Pred by GP in August 2017.

- Having returned to Sydney (home) following two weeks of travel, saw rheumatologist who reduced dosage but in October, experienced an "eye episode" so dose was increased to 50mg again just in case GCA had presented.

- Dose again decreased slowly but lethargy issues meant cancellation of further travel.

- Then allergic reactions commenced! Since April, I have had throat and mouth swelling, angioedema, which has necessitated hospitalisation on four occasions...Adrenaline twice and now, still in hospital, following intubation for 6 days!

The whole experience has rheumatologist and immunologists baffled. I am wondering if any of you might have any thoughts on my situation? Any contribution will be most appreciated.

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Nothing intelligent to suggest, just heartfelt sympathy and healing vibes sent your way Ang. what a nightmare. I have a lot of faith in Aussie medicine, it goes the extra mile.

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Oh Wow... you have had a rough time of it haven't you? I am so sorry. Are you allergic to the steroids??? I do hope your rheumatologist and immunologists figure it out soon!!! Best of luck and I hope this nightmare end s soon!!!!

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Thank you Mamici1. Initially the docs thought Plaquinel was responsible but has been ruled out. Now Methotrexate is being dropped yet again. I don't know about the steroids?

I suspect it is food related but docs don't agree. At least I am now in ideal situation to test reintroduction of food groups, having been intubated for so long....on the positive side!

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Wow that's a tough ride, Kia Kaha from over the ditch xx

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Thinking of you

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Hi Angie,

That’s a bit of a bu**er, but like you would think it’s more likely to be food related, anything spring to mind! But I guess the docs have to rule out all options!

Wishing you a speedy recovery from whatever it is!

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Wishing you well again soon Angie ,l hope you will be home from hospital soon too.

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Wishing you well and hope you get sorted soon!

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Dear Angie,

Sounds like a complex situation; I also had an eye episode; loss of vision for several minutes, central retinal vein occlusion found on Doppler of orbits, plus ringing in ears, headaches was enough for docs to diagnose GCA with polymyositis. That presented during a taper.

So sorry for all that you're going through. Is there any food or meds you could be allergic to? Products In your environment?

I understand the lethargy problem with tapering. This is the first year since 1978 that I have not left home to go abroad for same reason. Have become a homebody.

I have read in a scholarly journal that some researchers believe that some people are allergic to their inflammatory disease! I will try to find it and send you the link if I can find it.

It strikes me that allergies are also conditions of inflammation; I have nothing else to offer but hugs and best wishes from across the pond.💐💐🌹🌹

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Thank you...I would be most interested in reading that.

Many thanks to you all for your good wishes...certainly helps!😊

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I hope you're feeling better sooner than later! This stuff is awful.

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Hi Angie,

You have certainly been through the wringer! Just in case you decide to go down the 'looking at allergies' road, my son's m-in-law (74) had a severe episode requiring ambulance, out of the blue. No known allergies till then, but what I was getting to is, IF you decide you want to check out the allergy type areas (I'm not suggesting anything or other, but just in case you do.....) The allergy clinic at RPAH is excellent and you just need a referral from your GP. Doesn't hurt to check everything out just to make sure?

Hope you're improving now, xD

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Immunology is going to test tomorrow ...so back to ICU for safety reasons.

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How did the testing go yesterday? Best wishes... xD

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Immunologist unwell so tests postponed. Thank you for good wishes.

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Still waiting for allergy testing to pork😖!

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What dose of pred are you now on? Steroids are usually used to manage angioedema so while it is possible to be allergic to pred it is less likely.

I developed food intolerances/allergies early in PMR and they improved out of sight in higher dose pred but tend to manifest to lower doses so have to avoid them again.

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Very interesting...such weird processes at"play"! Thank you😊

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Hi Angie

Welcome to our Group 💐

I’m so sorry to read about your experience, particularly with the allergic reaction’s as it is so very frightening.

I’m the mother of a Son who was/is exceptionally allergic particularly to diary/eggs.

I sincerely hope they get to the bottom of this for you, with you having such severe reactions l’m sure the Medical Team will strive to get answers for you.

Very Best Wishes

Mrs N 💐 (Another Angela)

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Thank you for additional responses. To update:

- I am still in hospital...I guess now over 6 weeks.

- I have since had another bout of pneumonia then pleural drainage.

- IV antibiotics which ceased just over a week ago.

- since ICU, Pred went down to 35mg and currently at 25mg.

- also taking mycophenylate 250mg x2 daily.

- Two days ago had "eye episode", temporary loss of vision, lower half of one eye...lasted 15 mins. However eye check ok and possible TIA suspected.

- Rheumatologist suspects I am morphing into SLE (Lupus).

- The meat challenge has been put off for the time being.

So, I am making some progress, few steps forward and then back again. However have yet to determine the triggers for the angioedema.

Best wishes to all.

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Morning Angie

So sorry to read you are still in hospital, you are most certainly going through the mill.

The angioedema is certainly concerning & being on that dose of Prednisolone one would have thought it unlikely.

Sorry to hear about the pneumonia & the possibility of Lupus.

My Very Best Wishes that you get some answers & Get Well Soon 🌺

Angela xx

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