The story below is in Elaine's own words. She wrote it response to my request several years ago and, when she sent it to me her final words were:
Also please say how beneficial I found this site. I felt after diagnosis the GP did not need to see me, I waited 12 weeks to be seen by a Rheumy, this site saved me during that time. Thank You.
My Journey with GCA:
I was almost 51 years of age and about to go on a cycling holiday. I began to get shooting pains in my face and Trigeminal Neuralgia was diagnosed. I took the medication and the pain stopped. Six weeks passed and I knew I was not well. I was unable to do my usual walking as my head hurt too much, I was having very bad night sweats, having to move to another bed in the night and I had lost a stone in weight. I took myself to the GP who took blood tests and the GP diagnosed GCA and prescribed 50mg/day prednisolone but did not make an emergency hospital referral or request any further tests.
I work 10 to 12 hour shifts as an Immigration Officer and this involves very early starts, very late finishes and a week of nights every month. I asked the GP should I take time off, he informed me "No, there is no need"! I then struggled taking 50mgs of Pred, not sleeping yet working! I was feeling so run down, alone and afraid as the GP said he did not need to see me until I had reduced to 25mgs and by then my rheumatology appointment would have come through!
It took 12 weeks to be seen by a Rheumy who then said because of my age and because I did not have all the classic symptoms of GCA I may not have it after all, but I would need to keep on Pred in case I did have it! She said she would have liked me to have had biopsy but it was now too late. During this period I suffered a lot of face ache, my face hurt when wearing glasses and ached when laying on the pillow. I am still not sure if this was GCA related or Trigem related. Thankfully, my face no longer hurts. I did not like this Rheumy, but she did say I should not be going to work and signed me off for 6 weeks, this developed into 5 months. This made me very worried as there were redundancies at work and I felt my ill health made me vulnerable.
This was my worst period of having GCA, I felt isolated because after being diagnosed I did not want to tell work as I was afraid I would not get support and I struggled on without telling anyone. Eventually with the support of this group and then with the Rheumy ordering me too, I informed work of my condition. Once I had been off work for a certain length of time, I was referred to OH automatically and they were sent my case file from my GP.
I had heard horror stories regarding OH, but the doctor I was seen by was wonderful and understood GCA and its implications. He then recommended that I no longer work out of doors so I am now based inside which made returning to work so much easier. This resulted in a huge relief. He explained GCA is covered as a serious illness and my ill health would not be counted against me, all that worrying had been for nothing and now I had the support of the workplace, what a relief!
The first Rheumy I saw had signed me off work but I felt we had no relationship: she was a very cold woman, no people skills at all. She did assign me a Rheumy nurse who again I did not find very helpful. When she was not available I spoke to another Rheumy nurse who was the nurse for the other Rheumy who was at the hospital. (I was referred to him to begin with but as he was off ill I got the female Rheumy) I found this nurse very helpful, friendly and approachable. I said I much preferred her approach, she laughed and said she and the Rheumy had this approach. I asked if I could swap, she said yes but I needed to ask my GP. I explained how I felt to my GP - by then I had also found a much more approachable GP in my practice. He said it was not a problem and wrote a letter and I got my swap.
Looking back, I had had more symptoms of GCA than I told the Rheumy. I now remember having very sore spots on my head before I had the headaches, also I found the top of my head used to hurt so much if I went to the toilet, I guess now this was inflammation going on then. I also had mouth ulcers but my most obvious sign was the night sweats which involved the mattress having to be dried out each day and me changing beds in the night, much worse than the menopause. My head was very heavy and I was not enjoying walking.
I do wish a biopsy had been done, just to eliminate any doubt because of my young age. I also found once I reached 20 mgs I was able to continue to reduce without any problems although my new Rheumy, who I liked very much, instructed me to stay on 5mgs for 4 months, just to make sure all inflammation was under control.
I have now been back working in Brussels for 4 months and am now off Pred all together. My next challenge will be to resume my old shift pattern, which will include nights again, as I have been exempt but only whilst on Pred. How this will go, I do not know, as there is evidence that there can be a link between illness and shift work. I will have to wait and see but I know now which signs to look out for. I will also ask for a further appointment with Occupational Health and for a gradual introduction to night shifts. I am also hoping I can return to Brussels in December which will mean a break from night shifts once again!
PS
Elaine's story is quite unusual in some ways but all too typical in others.
She is very young at just 50 but whilst many GPs believe young people don't develop GCA and her first rheumy was sceptical it is possible. She met with a GP who recognised the possibility of GCA and treated it - that was good, it is a bit late once visual loss has occurred because of indecision - but he did not send her to hospital as an emergency which would probably have allowed a biopsy to be done.
Many GPs were unaware that an "Urgent" referral merely meant you would be seen within about 12 weeks as opposed to 18 weeks and in some cases it can now be even longer as some of the "targets" set by the previous government have been revised. The best response is for the GP to write a referral letter and send the patient to hospital immediately where there is a rheumatologist on call - or a neurologist or ophthalmologist is also acceptable. All can initiate pred therapy and do the tests/examinations required. A same day referral is best - just in case! Patients have lost vision overnight whilst a doctor thought about what to do. In Bristol they have a "rapid access" clinic where a patient with PMR will be seen within a couple of weeks, a patient with GCA will be seen within 1 day of referral. The aim is to persuade hospitals to have more such clinics across the country and there are a few - Southend and Luton hospitals have one, Kirkcaldy in Fife as well. I don't have a list of all fast-tracks though,
Unfortunately - not all GPs or even rheumatologists are aware that a negative artery biopsy does not mean the patient does not have GCA - it is positive in as few as 40% of patients whether or not they have had pred already. The diagnosis must be made clinically, on the basis of signs and symptoms. Other tests are being introduced which will help - but it all takes time and an expert opinion is needed.
Elaine was fearful of informing her employers - and that didn't help her experience at first, especially since her GP didn't sign her off work. She really was very unwell, not only because of the probable GCA but also the high dose of pred required initially. Always tell your employer - if you are really concerned, take a union rep with you.
She found both her her GP and the first consultant at the hospital difficult to relate to - if that happens to you don't be afraid to seek an alternative. Single handed practices are a problem - one which shouldn't exist any more in fact - but in most practices there is a choice of doctor. You do not HAVE to see the doctor named on your medical card whatever they try to tell you, you are free to see anyone. It is likely that another GP has had more experience or is simply better able to relate to you and your fears and worries and most hospitals have more than one rheumatologist. You have a choice of which hospital and you can still be referred to a named doctor by your GP though there are no guarantees. And of
GCA is a scary diagnosis - but Elaine's story shows it isn't necessarily the end of your world. She was first ill in the summer of 2011 - and in the summer of 2013 was recovered and happily working again.
To all GCA and PMR patients: 
Rheumy Appointment 
QUICK TAPER; CRP RISING STEADILY; FLARING
Rheumy leaving practice, yet another search 
Cheek bone pain, deep earache on left side of head plus headache
