COVID & Steroid users - not good news

[rocketman42]

medpagetoday.com/rheumatolo...

[PMRpro Ambassador]

I thought their conclusion that pred dose should be tapered to the lowest dose required a bit redundant! But that is all aimed at patients with disorders that can be managed with other drugs. Unlike PMR and GCA.

[rocketman42 in reply to PMRpro]

Exactly, which is why I find it disconcerting since we all try to get to the lowest dose we can.

[PMRpro Ambassador in reply to rocketman42]

I'm not going to be forcing anything - that way lies a flare and Prof Mackie thinks a flare of the disease probably is even more of a problem.

[rocketman42 in reply to PMRpro]

Agreed

[rocketman42]

Unfortunately not everyone is a candidate for a biologic.

[Siral in reply to rocketman42]

what's a biologic

[DorsetLady PMRGCAuk volunteer in reply to Siral]

biological drug -

A substance that is made from a living organism or its products and is used in the prevention, diagnosis, or treatment of cancer and other diseases. Biological drugs include antibodies, interleukins, and vaccines. Also called biologic agent and biological agent.

The one usually talked about on here and used in conjunction with steroids for GCA and PMR (in some countries, not all) is Tocilizumab or TCZ

[PMRCanada in reply to rocketman42]

Or we do not qualify for the biologic as it’s not approved for treatment. Here in Canada GCA patients can get approved for Actemra...PMR patients cannot (sigh).

[rocketman42]

Not solely dependent on time. In some cases there are medical contraindications.

[123-go]

I'm sceptical about the article as it's from an American publication. PMR is said to be less well-known in the USA than in the UK.

[Noosat in reply to 123-go]

Yes, read my reply to earlier post

[123-go]

I should have said 'less understood'.

[AtopicGuy]

The potential risks of being on steroids during the pandemic were expected all along. I'd only just been diagnosed with PMR (on the back of responding well to 25mg of prednisolone) when Wuhan hit the news. My doctor then tapered me off it ASAP, despite the symptoms coming raging back at 15mg. I'm hoping to see a rheumatologist (trouble is my bloods are normal) and/or go back on prednisolone once I've had my second Covid vaccination. I can't live like this much longer.

[PMRpro Ambassador in reply to AtopicGuy]

It hasn't worried me - and any doctor who put getting his patient off pred like that above caring for the patient would be a former doctor for me. I had 5 years of PMR without pred and it has still been rampant after 15+ years and requiring 15mg pred during the epidemic. I have just been extra careful when out - not that it makes much difference because if I brought it home to my husband it would be curtains given the state of his lungs!

[AtopicGuy in reply to PMRpro]

Hi. I'm new to the forum. I haven't had the energy to put my case summary on my profile yet, but I believe it's a very unusual presentation. My GP and the local NHS Consultant Rheumy (who refuses a referral) seem very reluctant to settle on the PMR diagnosis, but bereft of ideas for what to do next. Covid may be just a timely excuse.

[PMRpro Ambassador in reply to AtopicGuy]

What do they claim is atypical? Most people who tell us that and describe it are drowned in a chorus of "that isn't atypical"!! Some doctors seem to have led a very sheltered life. Or don't listen to their patients which is even more likely!

[AtopicGuy in reply to PMRpro]

I've just put the whole, sorry saga in my profile. In a nutshell: I've suffered the symptoms of PMR all my life and they've got worse year by year. It's now seriously debilitating, but my bloods are fine. I'd never heard of PMR until late 2019. I've had dozens of pointless, misguided tests and interventions down the decades.

[PMRpro Ambassador in reply to AtopicGuy]

Ah - but if you have suffered the symptoms ALL YOUR LIFE, the chances are it is not PMR as we mean it. The symptoms we call PMR are a sign of an underlying condition and there are several which can mimic it. That you have a pred-responsive inflammatory autoimmune condition seems fairly obvious. But it doesn't fit the criteria for PMR. It could be some other form of vasculitis - and a simple local rheumatologist probably isn't the person to go to, you need someone involved with research and wider testing.

And the way you were told to reduce is the approach used for short term use of pred for whatever reason - far too big steps. The idea is to identify the lowest dose that works - not necessarily get off pred altogether,

[AtopicGuy in reply to PMRpro]

Agreed. I don't fit the template. That's why it's gone untreated for decades. I had pretty much settled on the atopy-inflammation-pain-fatigue-anxiety-depression link years ago, but I assumed doctors know best. BTW, if you google "24 year-old with PMR" you'll find a case that the doctor termed "atypical PMR". I think my PMR is even more atypical.

[PMRpro Ambassador in reply to AtopicGuy]

I'm really familiar with the paper, yes. But that's what I'm saying - they had ruled out everything else. it doesn't sound as if they have with you.

[AtopicGuy in reply to PMRpro]

What other condition has: 90 min waking stiffness, shoulder pain, fatigue, depression and responds to prednisolone?

[PMRpro Ambassador in reply to AtopicGuy]

Possibly quite a lot - autoimmune disease is a very broad church and morning stiffness, fatigue and depression are common to a lot of a/i disorders. Pred is a very effective broad spectrum anti-inflammatory and inflammation can be the cause of the symptoms too. A great deal has been discovered since that paper was written over 20 years ago - and there is even more about a/i disease to be discovered.

[PMRpro Ambassador in reply to AtopicGuy]

What I forgot to say is that PMR isn't the disease - polymyalgia rheumatica is maybe better expressed as polymyalgic syndrome with an underlying cause. There are a lot of causes, some aren't autoimmune and include cancers and a few other conditions. Once they have been ruled out you look at a/i. And if you can't assign the patient to a specific label and the clinical picture is appropriate you can say PMR as we talk about it.

[AtopicGuy]

I attended hospital outpatients every 6 weeks from birth to 16 for my eczema. The dermatologist tried lots of new treatments - including hydrocortisones - throughout the '60s and '70s, without much success. Then in the '80s I was given Locoid cream and the improvement was immediate. I've been using it most days ever since and have thinned skin on my hands. Doctors told me "it's only 0.1%, and so quite weak". Only after about 15 years did I discover hydrocortisone-butyrate is much more potent than previous 0.1% ointments. I was never a big salbutamol user but have been on a daily preventer inhaler and a steroid nasal spray since about the '90s, I think. Along with non-steroidal eye drops and two antihistamines a day, these medicines massively reduced my allergic symptoms and improved my quality of life. I reckon I was fitter in my late 30s than any time earlier and even took up some sport. My chronic pain always went through the roof after playing, of course, despite lots of rest and pacing myself. What price a life, eh?

[AtopicGuy]

Thank you! You're both being very helpful and that is much appreciated. It's because of the long term affects that I have been glad to avoid oral steroids previously (I had intravenous steroids for asthma in A&E twice, I think, as a teenager). It sounds like the tell-tale PMR symptoms in the shoulders have been a godsend, in a way, because I've been waiting for my disease to either go away or get worse and show itself. The weird weakness in the upper arms became noticeable in the late '80s and worsened very slowly until recently. Previously, the pain and fatigue seemed very widespread, generalised and hard to pin down due to the tests being normal.

[AtopicGuy]

Apologies, I didn't answer your question; the last few days have been hard. I don't feel as if my doctor has ruled anything out. Every time the possibility of rheumatoid arthritis is mentioned I point out that not a single joint in my body is - or ever has been - hot, swollen, or painful. Fibromyalgia was mentioned during our last consultation, despite me exhibiting every one of PMR's classic symptoms. I feel as if I am a slave to the test results: if they are normal then I'm not ill.

[AtopicGuy]

It's a long shot, but you have reminded me of something that happened about 10 years ago. I had just changed job and we moved house to a new area. The local GP refused to take us on unless we underwent a barrage of screening tests. Everything was clear except for a tiny trace of blood in my urine. These days the advice is to ignore it, but back then I was obliged to go through a whole series of investigations, some of them invasive and all of them pointless. For someone with chronic pain and fatigue, who runs on empty all the time, it was the last thing I needed. Anyway, one of the tests was an ultrasound of my bladder and kidneys. Part way through, the sonologist said he'd spotted something that was probably congenital and irrelevant. I hadn't the strength to question it; I simply wanted to get back to work. He called in a colleague for a second opinion and they exchanged a few mutters in front of the scanner. I was then sent for an x-ray and later to suffer the pain and indignity of a pointless cystoscopy. Now I wonder whether the 'congenital abnormality' that showed up on the ultrasound was anywhere near the adrenal glands. I wonder whether this was mentioned in the report that should still be in my notes? I also wonder whether the persistent trace of blood in my urine has any relevance to my worsening condition. Is there a link to inflammation and/or vasculitis?

[AtopicGuy]

It does, thank you. You've been very helpful. I'm going to learn more about vasculitis before seeing my GP in two weeks' time.