5 hours in A&E last night, diagnosed with GCA.

[Judyliz]

I was diagnosed with Polymyalgia rheumatica at the end of May and started taking prednisolone. I had one problem with dosage at 3-4 weeks but that was sorted and I started on 10 mgs this week. I truly believe my PMR has responded well to the medication, I go to yoga twice each week and walk 5 miles easily and other than an arthritic hip I feel extremely well in fact life was normal and nothing changed.

However over the past 3 weeks I have been having mild headaches, they were frequent but would only last a few minutes and I could have 3 or 4 an hour but this had started increasing. I also had jaw pain which again was not too painful but enough for me to dig out a tooth guard my dentist had given me some years ago. I kept thinking, "is this the start of GCA?" but it wasn't severe. Yesterday I started getting a much tighter headache and throbbing over both temporal arteries and pain in one carotid artery, I would suggest it still wasn't severe but because of all the reading I have done on this forum I knew what it was and went to A&E in Queen Alexandra's Hospital in Portsmouth. Other than the triage nurse who took my details on arrival all the other staff I saw new exactly what I had from my symptoms and acted spoke with knowledge. These included the senior nurse in charge, my named nurse, (a student nurse), and the medical student who oversaw my care, there was a consultant I heard in the background but didn't see. I thought I would have to explain a lot more but no, I think everything more or less happened as this forum suggests it should.

I am now back up to a high dose of 60mgs and am feeling utterly deflated, I know I was beginning to feel smug that all was moving forward so well with the PMR and is still doing so.

Not really sure why I am writing, disappointed and a bit miserable I suppose and felt the need. I have to return for a follow up later today as my blood tests were not all back, CRP was up from last routine check but ESR not back and as it was by then 2 am I think they and we felt I was sensible enough to go home. What a wretched thing it all is, not just the underlying vasculitis but the auto immune process and all the added on complications of drug side effects.

Bye for now Judy

[suzy1959]

I'm sorry to hear that you got GCA. I can only imagine how disappointing it must be, the only good news being that you didn't have to fight for a diagnosis or treatment. I will wish for a speedy recovery for you. x

[Judyliz in reply to suzy1959]

Many thanks for your kind and supportive words and taking the time to contact me. Judy

[DorsetLady PMRGCAuk volunteer]

Hi Judy,

Sorry to hear about GCA, but good to hear that your trip to A&E, although no doubt traumatic, was dealt with as well as you describe. Aware that QA has not always had a good press in the past, but they seem to have come up trumps this time.

Yes you will feel disappointed having thought your problems were diminishing, but I think you can only console yourself with the fact that you did the right thing at the right time and saved yourself from any more serious problems.

Good luck.

[Judyliz in reply to DorsetLady]

Very many thanks for your support.

Poor old QA, during the 5 hours we were there security had to be called twice! I was a health visitor prior to retirement but during my clinical nursing days and whilst working in A&E and on other high stress wards I don't remember even one occasion when colleagues were abused either verbally or physically. I was completely horrified and in awe at the calm and polite way the staff coped.

[polkadotcom]

Great that they all knew what was what - and what to do about it! Not so great for you, in fact bad news altogether. You are truly entitled to a pity party, but don't let it turn into a weekend.

And if you can't let us here know what's happened, then I don't know where else. We do understand and can both sympathise and empathise. In fact it's part of what we are here for.

Let us know how you get on - and come here to vent, rage, cry, whatever is needed.

[Judyliz in reply to polkadotcom]

Thank you Polkadotcom

I totally agree with you, My husband and I were home by 2: 30 this morning but I tried to keep the day as normal as is possible under the circumstances. I was up by 7 and had tears and misery on and off for a couple of hours. But reading the posts and a few emails from chums and a phone call from my closest friend, (we met when we joined the Queen Alexandra's Royal Naval Nursing Service 45 years ago) I realised your point about a pity party but not a weekend. So many thanks.

I do wish I knew the derivation of some of our fellow members names, they are just wonderful. I am not sure if you are really into fast and exciting dancing or colourful spotty fabric or both.

[MARION7 in reply to polkadotcom]

So glad you are here.

[PMRpro Ambassador]

What hard luck that your PMR was a symptom of GCA. I do hope it all goes smoothly now - it has been identified and treated very promptly - kudos to you for recognising what it could be and not ignoring it and even more kudos to the hospital for an exemplary response.

On another thread someone has been told by her rheumy "you can't get GCA when you are on pred for PMR" - glad you didn't meet him!

Onwards and upwards - it will get better as you know. And as PDC has said, feel free to come for a whinge/paddy/hug any time you need.

[MARION7 in reply to PMRpro]

What a lovely thing to say... So, so pleased I found this site, so much comfort here. You and all are in my thoughts.

[Judyliz]

Enormous thanks for your reply, it has been on my mind all day and I realize I will have to do a lot more reading and research.

I have been feeling anxious for the past 3 weeks thinking is this the dreaded GCA etc, but probably always aware it truly was. Your comment about the PMR being the symptom of GCA made me think and looking back I had made an extra trip to my optician between the routine checks because of unusual vision disturbance and eye behaviour. I had completely forgotten about that. On reflection I think it is all related. Also my dear friend said she remembers me commenting on the GP mentioning GCA during an appointment around the same time. Again I had completely forgotten. I am really glad you worded your comments as you did they have calmed me down more than you will ever know. I know there is some dispute amongst the professionals and researchers but for me it is now only one condition that I am dealing with it just affects many more bits of me than I had hoped.

When you have time and a few thumb twiddling minutes I would be grateful if you could direct me to some fact based papers and or research reading. I have read quite a lot but some a little too technical and specialist at my knowledge base. There is no rush for this I now have plenty of time to ponder. Slightly more than I would have liked but hey ho

Again enormous thanks

[Valnvaughan in reply to Judyliz]

Hi

A group meet up might cheer you up.

As you went to QA, you probably live near Port Solent.

A group of people travelling through the PMR/GCA experience are meeting at the Harvester in Port Solent on Monday 19th September at 11am. You would be welcome to join us for coffee, chatter and laughter.

Valerie

[Judyliz in reply to Valnvaughan]

Thanks Valerie I shall look forward to meeting you. I had read about the meeting and have sent Barbara a message through the forum system but you have contacted me first so that is splendid. Judy

[PMRpro Ambassador in reply to Judyliz]

What sort of thing? In the meantime, is anything here of any use?

patient.info/forums/discuss...

It's another PMR/GCA forum but I don't think you have to join to see the post. Not that we mind - all welcome! There are other people there with GCA besides the members her.

And yes - all building blocks towards the diagnosis I would surmise!

[Marcy47]

Hi Judyliz

Sorry to hear you have GCA, but glad you found sympathetic medics to sort it out. Hopefully it won't be too long before you can start reducing the dose again. xx

[MARION7]

Wishing you all that's good and hope you feel peace of mind soon. x

[MARION7]

Wishing you well and hope you have peace of mind soon. x