Posted last week for advice. Rheumy nurse's opinion on GCA symptoms - go on - you know you need a laugh.

[Dontwannabesick]

I posted last week for some advice as I was worried my GCA was flaring. I went for a blood test to establish what my inflammation markers were, and then increased my pred from 7 mg to 12mg. Over the 5 days at this higher dose my symptoms have gradually disappeared, so today I phoned to ask about my blood results. I explained that symptoms including a banging headache which was waking me at 4am, neck and shoulder pain and nausea, had returned. She said, 'Oh, no,they're not GCA symptoms'. I said, well they have settled down after I took 5mg extra pred for a few days. 'Oh, no' she said, 'you mustn't do that, we need to get you off pred' ! Eeeeeek. Sorry for long post.

[SnazzyD]

😂😤😫

[Rache]

Oh dear, really shocking how little some medical people know 🤦🏻‍♀️

[DorsetLady PMRGCAuk volunteer]

Oh gawd- don’t you just luv ‘em🤦🏻‍♀️

No response required !

[Dontwannabesick in reply to DorsetLady]

I'd like to love her really tight around her neck!

[SheffieldJane]

Too horrified to laugh. 😱

Does that only leave A&E for you if this continues or is there a senior competent figure? I would worry that 5 mgs was insufficient.

[Dontwannabesick in reply to SheffieldJane]

It is settling down Jane. I'm on 12mg and will stay that way for at least another week.(had got down to 7mg, but after 4 weeks, symptoms started to surface).

[SheffieldJane in reply to Dontwannabesick]

Be vigilant ! X

[PMRpro Ambassador]

Er - sound like GCA symptoms to me.

But you're right - if you don't laugh you would cry wouldn't you!

[Dontwannabesick in reply to PMRpro]

I'n gonna just keep doing it my way, with the astute guidance of this great team.

[Longtimer]

I`m beginning to think it`s in their training....we need to get you off pred!...grrrrr

[fmkkm in reply to Longtimer]

Or lack of training. On several occasions I have had to explain to the triage nurse the difference between arthritis and arteritis! Even then many times they are just clueless and proceed to ask me which joints are hurting.

[Dontwannabesick in reply to fmkkm]

I think you're right there. Initially I was lucky. My GP picked it up straight away. Even refused to put his name to the dosage the rheumies wanted me to taper to, and continues to approve enough pred for me to regulate myself. Then my dentist said 'oh I did that as part of my degree'. So lucky me in that respect.

[Constance13 in reply to Dontwannabesick]

Perhaps we'd be better looked after by a dentist rather than a rheumy in future......!

[Longtimer in reply to fmkkm]

That is disgusting..and should not be necessary......I always think about people who aren't so able to do that.....I keep saying nothing shocks me anymore..but we are dealing with health!.....😏

[Phoenix51 in reply to fmkkm]

I’ve had exactly that experience .. the triage nurse asked me how to spell it and ‘googled’ Arteritis in the end. When I eventually saw the A and E Dr she said it was most likely my ARTHRITIS causing the pain 🤦‍♀️

[PMRpro Ambassador in reply to Phoenix51]

I trust you corrected her?

[Phoenix51 in reply to PMRpro]

I absolutely did and have been on a ‘crusade’ (albeit very limited) to enlighten and inform those around me, including medical professionals of various disciplines ... just last week my osteoporosis consultant said ‘I don’t think you will have GCA you are too young’ and I’ve lost count of the number of ‘oh yes, arthritis, I have that’ comments. I don’t blame lay people for their lack of knowledge, I was one of them until my diagnosis in January, but I do blame medics that are a) ignorant of the specifics of the illness and b) continue to consult and prescribe on the basis of this lack of knowledge. Who would want to fly in a plane, piloted by someone who hasn’t read the latest manual and is still relying on the information/evidence used to write the initial document? (My guess is pilots don’t read manuals these days but my point is the same😉)

[SnazzyD in reply to fmkkm]

Oh yes, I’ve had a nurse trying to correct me, “ no it’s not arteritis, is aarthritis”.

[Dontwannabesick]

Makes you mad. I think they all focus on PMR. ( No disrespect to you, PMR family). They don't seem to know how dangerous GCA is, and also it's not common, so maybe they don't experience it.

[PMRpro Ambassador in reply to Dontwannabesick]

Sorry - but the PMR people all felt very left out at the AGM where, yet again, the focus was on GCA. It took me 5 years to get a diagnosis. Unmanaged PMR can progress to GCA, I was lucky. But I still lost most of my 50s to PMR and pain. Most of us who take a long time to get a diagnosis seem to have long and complicated journeys - after 15 years I still need pred to manage my symptoms and there are a few of us. GCA rarely lasts more than 5 or 6 years.

[Dontwannabesick in reply to PMRpro]

PMRpro, I hope you would never think I minimalise PMR. I just think in the medical system GCA is less understood. Please don't be offended because I really appreciate your guidance on my own journey.

[PMRpro Ambassador in reply to Dontwannabesick]

All I was trying to express is that PMR is very misunderstood too. And there are a lot more of us. I'm not offended - takes a lot to offend me

[prunus in reply to PMRpro]

I can understand that, but having had GCA I found it a pleasant change for there to be a GCA specialist speaking. Most meetings I have attended have concentrated on PMR and I have felt left out. What also hit me was that there is no London hospital using the fast track diagnosis. It needed Dorothy to confront our second speaker and thank him for coming into the lion's den!

[PMRpro Ambassador in reply to prunus]

Those are the local support groups I imagine? There is a good reason for that - there are far more people with PMR than GCA requiring support in the practicalities of living with the disability PMR creates and which really isn't typical of the majority of patients with GCA. I do realise that for the person with GCA it is 100% for them - but they are maybe 1 or 2 in a support group of 20 or 30 or even more.

[Hidden in reply to PMRpro]

Out of interest, we, in the East Midlands support group, have 12 people out of 35 members with GCA.

Bridget

[Dontwannabesick in reply to Hidden]

Wow, that seems unusual.

[prunus in reply to Hidden]

That is very unusual. That pushes the % up to 33. I thought we were only about 20%. When I spoke to my Consultant about it she seemed to indicate she was seeing newly diagnosed patients every week. It left me wondering at the time if there were more of us than printed figures indicate. Thank you for that.

[PMRpro Ambassador in reply to prunus]

I don't always believe even consultants! "I have loads of PMR patients" claims a GP and it turns out they have 1! I think it may depend on the region/hospital and how many good rheumatologists there are who specialise in GCA. Once someone gets a reputation they will attract referrals in England. In Scotland and Wales the referral rules are different.

I also suspect the incidence is increasing.

[prunus in reply to PMRpro]

I take your point about people travelling miles for a good Consultant. A couple of years ago I was waiting at the hospital for a blood test and got talking to the lady next to me. I was surprised, not just by the fact she had GCA, but also the distance her son had brought her to see the other Consultant in Rheumatology. This Consultant had waited for them to arrive on one occasion when she was not well. She did have other problems as well.

[prunus in reply to PMRpro]

Bridget 1001's observation is very interesting. All printed figures suggest there are not many of us about. Yet when I spoke to my Consultant she indicated she was seeing new patients every week. At the time it left me wondering if the printed figures were truely accurate.

[prunus in reply to prunus]

(don't know what happened). medical problems.

[SheffieldJane]

I honestly believe that PMR and GCA are one disease now.

[Hidden in reply to SheffieldJane]

I am a little unsure of what you mean by "PMR and GCA being one disease". They are both autoimmune conditions, of course, but only one of our 12 people with GCA has PMR as well. I think Prof Dasgupta and Dr Quick, who spoke at the Webina, would take issue with lumping them both together.

Bridget

[PMRpro Ambassador in reply to Hidden]

I doubt it - as this paper illustrates:

academic.oup.com/rheumatolo...

In a large population the figures are very different:

"GCA and PMR commonly overlap. PMR is observed in 40–60% of patients with GCA at diagnosis, and 16–21% of patients with PMR may develop GCA, particularly if left untreated [2]. Modern imaging studies using vascular US and/or 18-fluorine fluorodeoxyglucose PET/CT (18F-FDG PET) have demonstrated that at diagnosis, up to 80% of GCA patients as well as one-third of patients with PMR have subclinical LV inflammation. Patients with treatment refractory PMR commonly have cranial and/or extra-cranial arteritis on imaging [5–11]."

Just as lupus differs in how it manifests in different patients, so do PMR/LVV/GCA (LVV is non-cranial GCA except it isn't always possible to demonstrate the presence of the giant cells as they need a biopsy which isn't really practical).

That is why the charity is for both - before it existed there were 2 forums, one each, on patient.info. Five women met there - some with PMR and some with GCA - and got together. One of their first actions was to get the two forums combined and then they set off to do more bringing the charity into being. There was already one in Scotland which is still very active and independent of this one. In the interim and before PMRGCAuk was formed there was also one in the NE, based in Gateshead. Prof Dasgupta has been involved from the outset.

[Hidden in reply to PMRpro]

Thanks, I am familiar with the article but as it says they are conditions that "commonly overlap. PMR is observed in 40–60% of patients with GCA at diagnosis, and 16–21% of patients with PMR may develop GCA".

AS you say, of course it makes sense for the charity to be for both conditions, and yes I am familiar with the history of the charity.

[SheffieldJane in reply to Hidden]

I am so glad that PMRPro came in there, her understanding is so clear. My PMR has morphed into non cranial GCA and there may well have been large cells present for some time, in other parts of my body, making tapering problematic.

[SheffieldJane]

I have been meaning to ask you. Having reduced Pred from 40 mgs to 9 mgs with the support of Tocilizumab without too much trouble, I seem to have hit a wall. I felt so ill the last couple of days, like I was coming down with flu. Or worse .Not sure whether to press on with reducing or stop and take stock.

[Constance13 in reply to SheffieldJane]

SJ - you already know the answer to that (last sentence).

[SheffieldJane in reply to Constance13]

🤦‍♀️🙇‍♀️

[Jackoh in reply to SheffieldJane]

Sorry you are having problems Jane xx💐

[Constance13]

😂 NO 😰😰!

[AussieMel]

Honestly, it must be a viral disease that infects certain Rheumatologists. I just made a post about my experience today.

At least we can laugh about it, as frustrating as it is.

[Jackoh]

I wish I could laugh - makes you want to cry or scream!! In the end though you have to shrug it off and carry on doing what you know is right for you. All the very best x💐

[SheffieldJane]

Thank you for taking the time to share this. I have been following what my Rheumatologist advised with the rapid taper. I have no pain just flu-like symptoms at 8 mgs. I am on Entric Coated Pred. Tonight I took 1 mg of uncoated Pred and 8 mgs of Coated. I felt loads better in about half an hour - so I’ve hit my mark. I tend to forget what I used to know. I do have GCA after all. No more rushing.

[Grammy80]

It is scary... terrifying. Without PMRGCAuk, I'm afraid I'd be examining the root systems of the daisies, not watering them. I had a neurologist ask me just yesterday, "Now, will you be on 20 mg of prednisone for life?' I just looked at him....I was out of there!💖