Possible GCA update

[DogAgilityObsessed]

Update for you lovely people. GP ended up referring me to be seen urgently so I bypassed the long waits. CRP done yesterday slightly up from last week and they’ve done another test today. Rather than risk anything I’m being prescribed 60mg pred and going home. Then rheumatologist should arrange for biopsy or Ultrasound next week.

The consultant says he doesn’t think it’s GCA (I cannot get to the bottom of why but he says GCA is rare and I’m no more likely to get it than anyone else 🙈) but at least they’re not sending me home without anything.

Question for now is will an ultrasound still show GCA if I’m already on high pred dose?

And because I have to wait for a few hours before getting a lift home (snow meant we couldn’t drive so neighbour brought me) is there anything else you think I should ask or know before leaving?

[PMRpro Ambassador]

"The consultant says he doesn’t think it’s GCA (I cannot get to the bottom of why but he says GCA is rare and I’m no more likely to get it than anyone else 🙈) but at least they’re not sending me home without anything."

You WHAT? I assume that is the ED consultant? A patient with PMR symptoms that respond to pred is at a far higher risk of developing GCA than the general population!!! About a fifth of PMR patients have GCA anyway. I may have to get my French out again ...

What hospital is that? Just so I know to avoid it!

[DogAgilityObsessed in reply to PMRpro]

Exeter RD&E. Acute Medical Unit.

[RedRum1968 in reply to DogAgilityObsessed]

Interesting as I was referred to a consultant at RD&E Exeter and was told I was too young to get PMR (54) and to come off steroids quickly. Bam - 3 days later all symptoms returned and I was in agony. It took weeks to get it back under control!

[PMRpro Ambassador in reply to RedRum1968]

We have been concerned about GP education - but increasingly we are finding hospital staff who haven't a clue.

[Sharitone in reply to PMRpro]

My friend has Addison's, with frequent crises. Her family have now learnt to rush into A&E shouting 'Adrenal crisis - needs IV steroids urgently!' They have even overheard young casualty officers googling Addison's.

[PMRpro Ambassador in reply to Sharitone]

The new red emergency steroid card to download was introduced because they discovered HCPs were lacking in knowledge about adrenal crises in longterm steroid patients. That was the first year of Covid I think, might have been before. It isn't the card they need - it is education about how they can kill the patient by their ignorance.

Somebody on here was told they didn't have Addisons - perhaps not, but adrenal insufficiency SECONDARY to long term steroids is the same ...

[DogAgilityObsessed in reply to PMRpro]

It was extreme tiredness and me thinking adrenal insufficiency that took me to the GP a month ago. He said it wouldn’t be surprising so didn’t think it worth testing. I didn’t say “I’ll just die then of adrenal crisis shall I?” But the conversation was shelved waiting for general blood tests and then overtaken by the current issue.

[PMRpro Ambassador in reply to DogAgilityObsessed]

Shame - should have said it!

[ncfaaeos in reply to PMRpro]

"...I may have to get my French out again ..." 😄 Love it - so completely appropriate in the light of what you are responding to.

[DorsetLady PMRGCAuk volunteer]

Your question re ultrasound showing any trace of GCA, it really depends how quickly it is actioned…recommendations is as follows,-

Imaging should be performed before or as early as possible after initiation of therapy, best within 1 week, as treatment with glucocorticoids rapidly reduces the sensitivity of imaging.

A biopsy is obviously a bit hit and miss… it’s paramount that the small sample they take contains GCA cells, but that’s not always the case… and if that happens you can get a false negative. .. but if you get a positive result then there’s no querying it.

Won’t comment on the consultants comment 🤨.

Do you know long are you going to be on Pred? Or does that depend on next appointment?

Sorry you’re still hanging around, when all you want to do is get home… all the best… and just be aware 60mg may give you some sleepless nights, and perhaps a lot more energy- but don’t do too much if it does… 😊

[DogAgilityObsessed in reply to DorsetLady]

Prescription is for ten days 60mg by which time I should have seen rheumatologist. I guess that’s the right dose for now.

Very dismissive of forums and you lot! And then they say they have a GCA protocol to follow. Think the protocol should state that existing PMR/GCA patients probably know a lot more about their diseases than some medical staff.

[DorsetLady PMRGCAuk volunteer in reply to DogAgilityObsessed]

Very dismissive of forums and you lot!

Nuffink new there then! 😳

..and agree on your protocol comment - sometimes they don’t do themselves any favours do they.

Could say hope he’s proved wrong - but that wouldn’t be fair on you… but you know what I mean 😊

[SheffieldJane in reply to DorsetLady]

My Rheumatologist loves us. We are very responsible really.

[DorsetLady PMRGCAuk volunteer in reply to SheffieldJane]

Yes but she’s a sensible lady….

[PMRpro Ambassador in reply to SheffieldJane]

Says she has learnt a lot from us ... Even reads now and again.

[CarolF1312 in reply to DogAgilityObsessed]

Pleased to hear you've been seen quickly. It astounds me that some medics are so dismissive when you say you've done your own research whether that be from a forum, charity or Dr Google.Good luck

[PMRpro Ambassador in reply to DogAgilityObsessed]

Probably better to call it the PMRGCA charity - equivalent to Diabetes UK or the like,

I heard there was a move for the NHS to award a badge of approval to certain charities and their forums - would be handy ...

It's just another aspect of the meme you find all over the internet:

Doctor: Don’t confuse your Google search with my 6y at medical school.

Patient: Don’t confuse the 1-hour lecture you had on my condition with my 20y of living with it.

[DogAgilityObsessed in reply to PMRpro]

Good points well made. I do usually say it’s the charity forum but of course they hear what they want which is Facebook!

[PMRpro Ambassador in reply to DogAgilityObsessed]

Exactly! Online helpline??????? Open 27/7 ...

[Sharitone in reply to DogAgilityObsessed]

I omit the word 'forum', which smacks of ignorance-swapping, and just say the PMRGCA charity.

[DogAgilityObsessed]

Although I haven’t eaten yet to test claudication, my jaw isn’t aching nearly so much. I didn’t wake up at 3:00 and the swelling/lumps at side of head are going down. But when should the headache go?

I guess I was remembering the quick response for PMR so thought I’d wake this morning feeling great.

[DorsetLady PMRGCAuk volunteer in reply to DogAgilityObsessed]

I found my headaches didn’t go completely for a couple of weeks [on 80mg]… but I was never sure whether that was the GCA, the brain getting used to monocular sight, tension worrying about other eye- or most probably a combination of all.

The fact that you are getting some improvement can only be a good sign… give it time.🌸

[DogAgilityObsessed in reply to DorsetLady]

Thanks. Having just given the dogs a quick walk I did notice an improvement. Husband thinks I’m already sounding better. Possibly the steroid high of course in part. 🤣

[DorsetLady PMRGCAuk volunteer in reply to DogAgilityObsessed]

Definitely the Pred!… as I said, 60mg gives you more bounce… but just be aware it’s chemically induced…🤣😂

[prunus]

As a GCA sufferer of eleven years standing there are two points I would like to make.

1. My Consultant said to me originally that I would have to educate a lot of doctors because I would know more than them about the condition. I had been in hospital for ten days before it was diagnosed with a CRP reading of 452.

2. I had a biopsy which left some effects which lasted months. If I could choose I would prefer a scan.

[DorsetLady PMRGCAuk volunteer in reply to prunus]

Point 2.. agree, but some patients don’t always have a choice.

[prunus in reply to DorsetLady]

No I didn't have a choice. I was told there was noone there with the knowledge to do them. At the time I was diagnosed I had never heard of GCA. It was only later when I had become more knowledgeable and started to ask questions that I found that out. I am not aware that even now it is done.