Update on my GCA diagnosis

[Topcar]

Hi everyone hope you're all keeping as well as possible during these strange times!! Today I finally had my first rheumatology appointment and I was dubious as to whether it would be any help!!! But oh!!! What joy!!! I saw a lovely doctor who really seems to know what he's talking about, he was surprised that my GP hadn't referred me a year ago after my pmr started and said he'll manage the pmr and gca, together with myself and the gp going forward. He said that although I will have regular blood tests he would always expect them to be within normal range whilst they are under control on the correct dose of pred and warned me that it is a long slow journey to reduce to 20mg pred and from there even slower by 0. 5 or 1mg monthly to 10mg after which and depending on the journey to this dose he mentioned several other drug options (quite a lot I've read about in other posts on here) to aid the reduction but stressed not to even start worrying about that stage yet as it is a long way off and he needs to be sure that symptoms are well under control before any reductions along the way. So I'm to stay on 50mg pred for another month at least as he says clinical symptoms always outway bloods which should be OK if symptoms are being managed correctly and said for the same reason a tab would not have been very reliable had all surgery not been cancelled anyway because of covid-19 as I was already taking pred. He even joked about the prevelance of the viking connection saying the illness is fairly common here but not where he's from as there aren't many viking invaders in Bangladesh!!! He gave me an information sheet with tel numbers and said to call with any worries and also confirmed that I should still be shielding as the autoimmune problems combined with high dose pred are still a cause for concern. I do hope this is the start at last of being seen by someone who recognises as all the very helpful and knowledgeable people on here do, that symptoms not bloods etc rule!! and maybe now I'm also seeing a different GP no-one will be in such a rush to taper just because the bloods are normal. Thanks for reading I do tend to ramble a bit.

[DorsetLady PMRGCAuk volunteer]

What a star..,he must have been reading this forum!

Hang on to him...and clone if at all possible!

[Topcar in reply to DorsetLady]

I told him I'd joined the forum as I initially knew nothing at all about either illness and he said it is an excellent source of information and support, he knows about it from research programs the forum has supported. I'm still in shock that he was so informed.

[SnazzyD]

Wow! And were unicorns roaming past the window??

[SheffieldJane in reply to SnazzyD]

Or pork flying?

[Jampad]

What a wonderful appointment. You must be so happy and relieved to have been referred to a doctor who knows so much about GCA and PMR.

[PMRpro Ambassador]

Must have been me in disguise!!!! Where is this second paragon of virtue for the week!!

[Topcar in reply to PMRpro]

As I've said to Dorset lady still can't believe my luck!! Hope it lasts!!!

[PMRpro Ambassador in reply to Topcar]

You are in the north? Northeast?

[jinasc in reply to PMRpro]

I did wonder as well? I checked on profile, no hint.

[Topcar in reply to jinasc]

I've replied with info to PMRpro and as I said to Sheffield Jane hope he's only just started his placement with the consultant's team!!!

[jinasc in reply to Topcar]

Thank you.

[Topcar in reply to PMRpro]

I'm in Leicester generally very good university hospitals with excellent research facilities, husband received wonderful care after his oesophageal cancer diagnosis 5 years ago and still here to tell the tale and great after care too. I was very surprised though to find such a knowledgeable doctor today as I had looked up all their specialities and none mentioned pmr or gca as a particular interest, so after thinking it may be another battle of explanations I came away extremely surprised and hopeful!! 😇

[SheffieldJane]

Gosh lucky you. He sounds like a man who really knows. This will make a massive positive difference to your experience.

[Topcar in reply to SheffieldJane]

Thanks I just hope he's here long enough on the consultant's team to make a difference, hopefully he's only just started his placement and won't move on too quickly!!

[Tamtan2]

Hi there what a god send, I too have a lovely Gp who if I hadn’t met her would still not be diagnosed after seeing Rhuemy she was was very persistent I get a MRI the rheumatologist who said I didn’t have pmr or onset Gca made a mistake a neurologist discovered it on my scan. I was then called back urgently to be told he had misread Gca. Then Not one but 2 calls this morning regarding my CT for SOB and sticking feeling when eating or taking meds, I recently have been taken off Methotrexate and alendronic acid due to side effects. Told to day I am to see respiratory dr and also go for a endoscopy. My Gp quiet concerned as I have had no results or communication on tests I had 2 weeks ago from hospital it doesn’t help my rheumatologist has left hospital and I haven’t seen anyone since early April. My doctor advised me to ring hospital with any other queries or worries I may have as she doesn’t know enough about this illness?

[sara44]

So happy for you that you finally have a diagnosis on the medicine and on your way to recovery and you got it by the handle slow and easy on the tapering have a wonderful day and thank you for your

[Coffeebeans]

That's absolutely great news. So nice to feel supported properly.

[Telian]

What a joy indeed. So pleased you had such a positive experience- will give you a great boost.

Don’t know why but I’m feeling rather apprehensive for tomorrow as having my first telephone consultation with Sarah Mackie, my new Rheumie since moving. I just hope she doesn’t want to make sweeping changes.

I’m 6 years since diagnosis of GCA then PMR and don’t know where to start - have decided to let her take the lead and will go from there.

Would have preferred a face to face for first appt but not possible in these times.

Hope it’s as positive experience as yours.

[Topcar in reply to Telian]

I'll keep everything crossed that you have a positive result tomorrow. I feel so much better knowing someone appears to understand and wants to take things slowly, unlike so many other doctors who want to rush things which appears to be the case for lots of us on here. Once again good luck tomorrow 🤞

[Tamtan2 in reply to Telian]

Good luck all the very best in you quest for good health and guidance.🙏🏽

[Grammy80]

You have struck gold and I'm so happy for you. Your doctor sounds like a treasure.

Symptoms not blood....that sounds like music. xo the best to you and thanks for the update.

[Grammy80]

I'm so happy for you...what a dream of a doctor. How wonderful you have him. xo

[Topcar in reply to Grammy80]

Thanks I was really expecting a wasted journey so was overjoyed with the wonderful outcome!! Now let's hope it continues along these lines 🤞

[Phoenix51]

So pleased to read your positive post .. I had a similar experience a couple of weeks ago and it makes the world of difference doesn’t it? I wonder if medics truly know the influence they have not just on our physical conditions but also in terms of our emotional health. I think one of the key pieces in the jigsaw is the GP, if they are open and honest enough to say they lack knowledge in PMRGCA and then refer on for further advice then the outcome seems to be more positive, providing of course that the ‘specialist’ has the knowledge 😉 sadly it would seem some GPs see referral as a personal weakness and so prefer to struggle on in the dark, meanwhile the patient ( guinea pig) is left in a state of flux at best and at risk at worst. Of course if you live in some parts of Wales the GP has no choice other than to manage ‘in house’ as there is no one to refer on to ! Wishing you all the best with your new consultant 🏅

[Topcar in reply to Phoenix51]

Hi it's nice to hear of someone else having a positive experience as it sadly doesn't seem very common, hence the great value of this forum and yes you've hit the nail on the head about GP's my first GP who finally diagnosed pmr but only after a massive push from an excellent orthopaedic surgeon was very reluctant for any rheumatology involvement saying "I'm managing it" luckily when GCA symptoms appeared I saw a different GP and wow what a difference she did everything right and has spoken to the other GP so she can continue my care along with rheumatology. Maybe there's hope yet that this illness is becoming more recognised in the medical profession!! 🤞Take care