Suspected GCA

[jessiem]

Hi

Was told today by my GP that I have suspected GCA - I’ve started on steroids right away and will have Rheumatology appointment this week. I’m just a bit anxious about it all. Any tips greatly appreciated and I’m glad to have found this site.

[DorsetLady PMRGCAuk volunteer]

Hi. And welcome

A bit more info would be good - for example what symptoms led dr to think GCA / what dose are you on.

Good that you’ve got Rheumy appt.

You might find this helpful - it’s a bit lengthy and maybe a bit disconcerting at first read - but do hang on to it.

Your Rheumy should explain your illness and the way forward, but I’m sure you’ll have plenty of questions - so come back once you’ve seen him and read attached - healthunlocked.com/pmrgcauk...

[jessiem in reply to DorsetLady]

It started about 4 weeks ago with a stiff neck and headache on waking. Thought at first it was muscle strain making my head ache but it hasn’t gone away. Blood test showed high level of inflammation. Dosage 40mg a day.

[Hidden]

Hi and welcome. It must be a shock but at least you are started on your treatment now and further investigations. Make sure you get that appointment. I "only" have PMR so haven't done the higher doses of pred, but expect a bit if a trippy feeling. Dorsetlady's intro is an excellent tool for you to start to get to grips. And we always say there's no such thing as a stupid question do make sure you ask if at all anxious about anything.

I have linked an aide memoire type link that just helps you prepare for your rheumy appointment. I had a better one but can't find it ...but this gives you a bit of am idea how to prepare for appts. 🌻

simpletasks.org/first-visit...

[jessiem in reply to Hidden]

Thank you so much

[PMRpro Ambassador]

Welcome to the club no-one really wants to be part of! At least you have a GP who is on the ball - whether it turns out to be GCA or not, better safe than sorry. If you get any visual symptoms don't hesitate to go to A&E/the ED - whatever time of the day or night,

[jessiem]

Yes, I will - thank you.

[SnazzyD]

Hello. Yes it’s a bit of a bombshell to go from a stiff neck to this lot. There is so much to learn just when you are zapped with high dose Pred. Anyway let’s see what the rheumy says. Impressed with the GP.

[jessiem]

Thank you

[Pippah45]

Welcome Jessie it's about 13 months since I was where you are except no sign of a rheumy for me! So a plus for you. I found Kate Gilbert's book very helpful before I found this forum. So much great advice here. It's been a roller coaster but you are in great company.

[jessiem in reply to Pippah45]

Thank you

[Daughters2]

Dorset Lady is amazing and all on here are so helpful. Glad you have had diagnosed early. Take care of you and any blurred vision at all don’t delay. That’s a good dose you’re on and sounds like you’re in good hands. Do you mind me asking how ‘young’ you are? X

[jessiem in reply to Daughters2]

Thanks for your reply - I’m 61

[ChinaWuntoo]

What others have said.

I was diagnosed with PMR end January. Now I suspect GCA as well. Dropped a long letter with all my 'symptoms' to surgery over the weekend and expected a call yesterday - hasn't happened yet.

As PMRpro says - any eye problems go straight to A&E, bypass the GP. That's a symptom that I do not have but we cannot wait to see if it happens - thus my urgency with GP.

[jessiem]

Thanks for replying - I would give your surgery a call and speak to your GP.

[Telian]

Welcome Jessie’s and sorry it’s in the circumstances. You have a good GP to act so quickly but do not hang around if you get visual disturbance as GCA is classed a medical emergency. Go to A&E or equivalent.

How are you feeling since you started the prednisolone? Has the head and neck pain improved? If it has that’s a sign you probably have GCA. If it hasn’t does mean you haven’t got it - might need a higher dose - starting dose is around 50/60mg. At least you’re on the right treatment if it is - if not no harm done.

Best wishes.

[jessiem]

Thank you - yes my pain has improved a little - not so severe. Hospital called and they had a cancellation so I’m going later today - rheumatology.

[Daughters2 in reply to jessiem]

Which area are you? My mum is Leeds and hospital are great x

[Telian in reply to Daughters2]

I’m Leeds too and so far can’t complain - OH been in St James (Jimmies) twice since moved so first hand knowledge. Moved here last October and very happy here. You not here then?

[Daughters2 in reply to Telian]

Hi my Mum in Leeds being looked after well now. Bit late but support is excellent there. Just wish we’d got to them sooner.

[Telian in reply to Daughters2]

Sorry to hear your Mum isn’t well.

Pleased to hear she’s getting good support though.

Best wishes.

[jessiem in reply to Daughters2]

I’m in Devon.

[Jackoh]

Hello and welcome. You seem to be treated very well medically. Long may it continue!

[Skysey]

Glad that you have been prescribed steroids as this will be protective. I am in the early stages of my treatment programme as I was formally diagnosed with GCA in January. I was also treated with steroids when my symptoms started in December. Let us know how your appointment goes. I am sure you will find this forum beneficial as there are many people with lots of experience in the GCA and PMR field who offer advice and support.

[Grammy80]

I just wanted to say hello and welcome. How wonderful that your GP was on top of things!! You will find everyone here so helpful and there is an endless supply of support. You've already been embraced by some of the seasoned old-timers----nothing to do with age, girls, the longevity of membership only. They are a wonderful bunch, Jessie!!💖

[jessiem]

Hi everyone

Had my appointment yesterday - did full exam, blood test and ultrasound. No sign of GCA but suggested PMR. Said though, no need for steroids for that? My GP rang this morning and couldn’t understand the reasoning for no steroids. She spoke to other colleagues and all suggested 15 mg daily of Pred. So here I am!

[PMRpro Ambassador in reply to jessiem]

"no need for steroids for that" - PMR??? There's a level of ignorance I'd rather not see in a rheumy! Unmanaged PMR is said to be 7x more likely to progress to GCA! Another rheumy on the list for "I hope they get it too ..."

I'm very glad for your sake that your GP practice is a bit more clued up!