5 weeks to diagnose GCA

[Groda]

Hi. I started to get sick June 24, 2023. Progressively worse each week. Headache, sore temples, sleeping a lot. Week 2 fevers every 4/5 hours. Tylenol for that. Night sweats. Week 3 getting weaker, symptoms more severe. Glands in neck swollen. Week 5 jaw does not want to open much or chew. Painful. Blood cultures now showing very elevated ESR and CRP.

Husband took me to Emerg. Was put in a room. Next day Chief of Internal medicine said 95% sure it is GSA. Had biopsy that day. Was then put on 60 mg Prednisone and 1 hr later went home. Biopsy came bake positive.

As of Sept. 1 my doctor said reduce prednisone to 55mg. Having blood work on Sept 8 and meeting for the first time my rheumatologist on Sept. 19. Having bone scan next week.

I feel very energetic all the time, getting about 5/6 hrs sleep with melatonin and hot milk. I know things won't stay this way all the time. For now I feel ok.

Groda

[KittyJ]

I’m not sure you’ve posted in the correct place Groda, apologies if I’m wrong, this is the National Rheumatoid Arthritis Society page, do you have RA too?

[Groda in reply to KittyJ]

Hi Kitty. I am so sorry I have posted in the wrong place. I was not given an option for anything b ut NRA, which I did not know stands for Rheumatoid Arthritis Society. I do not have RA. I will find out somehow where I am supposed to post fofr CGA. Thanks, again , apologies.'Groda

[KittyJ in reply to Groda]

No worries, stay till you find somewhere, you never know if someone here has it they might be some help 😊

[KittyJ in reply to Groda]

you could try here

healthunlocked.com/pmrgcauk

[Wobbies]

GCA is often associated with RD, at least as I understand it. My mother, my sister and I have all had it and all have RD. All got better with steroids but with my mother it returned on occasion.

[Lizard28]

I was urgently referred to a rheumatologist with suspected GCA, Your symptoms sound like it especially as your biopsy proved positive. I was on 60mg of steroids for three weeks before they could do a biopsy on the Temporal artery. Unfortunately mine proved negative but this is quite common as they might have taken a bit of artery that wasn’t bad. They still had to treat me with steroids for a very long time. 60mg makes me jingle, I could have run a marathon when on them. Your rheumatologist will keep her eye on other things in months to come as it could go into polymyalgia rheumatica, I was lucky mine didn’t. You were very lucky you were seen quickly. Looking back I should have gone into A& E as my head was so sensitive, I couldnt even put it on my pillow and washing my hair was agony. I had the worst drenching night sweat ever when the inflammation in my head was bad. I did see my GP quickly but she said it was prob just flu, I told her I don’t go to doctors for flu,something is clearly wrong I felt so ill, she reluctantly did a blood test, when it came back she instantly called me as my CRP and ESR was through the roof. I’m sure the dreaded steroids will bring the inflammation down in time. Best wishes

[Hidden in reply to Lizard28]

Uk is slow treatment and slow to see a patient.

I have a long story of that.

[Runrig01]

Hi, I was unfortunate to develop PMR in September 2011. In March 2012, I developed the GCA symptoms, the tender scalp, jaw pain, byrig temples, vascular lesions on my tongue as well as spasming. I was only 47 so was not taken seriously, as I couldn’t be unfortunate to get both. I’d been on steroids 10 months when I had the biopsy and it came back negative. So I was sent to 2 of the countries top d sad pecislists, 1 in Leeds anc the other prof Dasgupta who wrote the guidelines for Drs to follow. They both did a special coloured ultrasound which showed the inflammation.

You will find more support on healthunlockeds pmrgcauk site. Mines unfortunately lasted till 2016, I’m still on steroids to this day, as the steroids caused severe adrenal insufficiency, which was diagnosed after a severe stroke at 52, due to an adrenal crisis. Hopefully you have a speedy recovery 🤗

[springcross]

Hi Groda. Sorry to hear you've got GCA, my sister had it so I can sympathise. To get to the GCA site just click on Search box above, then type in GCA, when the next page opens up, make sure you click on Communities at the top, this will bring up the PMR GCAuk page and you'll be able to join from there. I hope all goes well for you. x

[KittyJ in reply to springcross]

The link is already here in my reply from last night 😊

[springcross in reply to KittyJ]

Yes, I noticed that after I posted, sorry!

[Vonnie10]

My neighbor had it felt so sorry for him.