Hi, I'm relatively new to this but just wanted to check in to ask if many of you have just not received any real help in regards to a proper GCA diagnosis? I have had severe symptoms come on in April 9f this years ago after ESR results came in my GO put me on steroids asap. I had been suffering with undiagnosed PMR for a long time prior to this. I have been on 60mg of prednisone after 40ng wasn't quite enough to address all of the inflammation (even though they made a significant difference to the OMR pains. I have been in hospital twice when I tapered back to 40mg. The doctor in the ER told me I am too young to get this at 60 and told me to try kinesiology for stress! I just paid a local rhumotolist £200 for a more accurate diagnosis and he only read my hospital notes and echoed the same thing the ER doctor told me. After a short 10 mon visit where I was talked over, he told me to get off the steroids 10mg a month so I can then have a proper diagnosis as he doesn't think I have it. I cried on my way out as I have had every symptoms and my scalp is still so painful and tight, and my head is still tingling. I have shooting pains behind my left eye too. I don't thibk I was put on a high enough dose of steroids to knock out the severity of the inflammation, but what do I know. I feel something bad will happen when I reduce back down. I wish I had an expert in South Wales I could see about this as I am not going to lose my sight for anything/anyone. Sorry for the long post but I feel so alone and im poorly most of the time.
Feeling a little desperate : Hi, I'm relatively new... - PMRGCAuk
Feeling a little desperate
I'm so sorry that you are feeling desperate and can understand why. You've been treated with a lack of compassion and understanding. I can't help with your question re a recommended rheumatologist in South Wales but someone will be along to advise you: hang on in there for a little while.
Morning, I understand your frustration and fear too. Certainly sounds as though you have PMR/GCA. I have the same. PMR first diagnosed in Dec 2019 with I think GCA lurking in the background. You're right about the different sort of headache. I found mine a tingling sensation too. In case you haven't seen all my posts. I had to pay to see firstly a private doctor (mine was treating me for Osteoarthritis) who then referred me to their resident rheumatologist. Blood test were taken, chest X-ray and urine samples. Blood test ESR/CRP came back 515, so very high. 15 mg did the trick on the PMR within fifteen minutes of taking them. pain had gone. However, once I'd tapered down to 8mg GCA kicked in. Like you, tender head, my back top teeth ached, painful jaw and headaches. Rheumy then upped the Prednisone to 40 mg in March 2020, I've been using the Dead Slow and Stop method of tapering ever since. I managed to get down to 6.5mg.....tapering by 0.5mg every month when problems started. Achy arms and shoulders, tender head (one side only) and slightly tender right temple. Advice given by some good and experienced ladies on this forum was to increase steroids, things now seem to have settled down again. GCA frightens me as I only have the sight in one eye, so I have to be cautious. Request a blood test to see how high your markers are reading. Having taken 60mg you should be covered, but my experience on both diseases is limited. Just reading up on them and listening to the ladies on here I've gained a little knowledge. There are a few ladies of your age and younger that have the disease too. But mainly it's a seventy year old disease. Do you live in Oz ?
Take care and let us know how you're getting on.
Best wishes
Anne
Hello and thank you for your reply. No, I live in Wales and it is so difficult to find someone who is well versed in treating GCA. I have had blood tests and they seem to have come back as normal as I am on a high amount steroids. I will have to keep pursuing a few other avenues to try and prevent this turning into something even more sinister. Its the strangest disease to experience, yet alone try to convince medical professionals that this is not all in my mind. Its amazing that only my doctor seems to be the one informed, although he says his knowledge is limited. I really wish you the best as it seems you have been through the works on your journey.
Hi again, I should have thought Wales and not New South Wales in Oz haha.
You did use the word ER though so that threw me. Many people with lots of
pain and know they have PMR, their markers are still normal before steroid
treatment, so mainly docs go on symptoms. We have to look after our bodies
these days, particularly since Covid. My Rheumy discharged me at the
beginning of July, 'Sods Law' something would go wrong !! Dreadful they
thought it was in your mind....maybe you should refer them to this website,
so they can educate themselves in PMR/GCA. Particularly as GCA can cause
blindness in a short period of time, and it's been experienced by some on this
forum, with one lady going completely blind, how awful is that.
Still let us know how you go on.
Anne
Hi there. Yes, you are correct about my saying ER. I lived in the US for many years, do ut just came naturally to me. LolIts strange that you mentioned referring the medical experts to this group, as it is actually mentioned iand the links are provided in the hand outs given out by the NHS and from the GPS surgery. Im going to mention this to anyone else who is a non believer to see what they say about it. Looks like nobody is paying attention to the organization that they recommend we seek out. Very odd and it speaks volumes of the way these two diseases are overlooked. Sorry if I'm rambling but I feel as soon as I am feeling well enough, I'm taking this up with the NHS, if I can get through to them as a layperson
You ramble as much as you want. I do hope you get yourself sorted asap.....seems we have to sort out our own meds re the steroids. I emailed my surgery the other day asking for help and a blood test. I received a 'phone yesterday agreeing I can have a blood test to check my markers tomorrow, result Tuesday, then doc said a face to face in 4 weeks time with him.....what good is 4 weeks time. I need to know now. Fortunately, things have calmed down for me since increasing Pred.
Take care
I agree with you. There is no sense of urgency with this. It seems that very few are well versed in this disease. Good luck with getting what you need soon. x
Sounds as if your GP is the only sensible one in this sorry mess…..certainly sounds very GCA-ish to me…and certainly 60 is not too young.
How long were you on 60mg? ..needs to be 2-3 weeks to get a real grip of the built up inflammation….and how have you reduced back to 40mg each time, if it’s too quick, which is sounds as if it is, the it’s no wonder you flare.
The Rheumy is being irresponsible if he is not taking your head issues seriously enough…..telling you to reduce 10mg a week if it is GCA is not the way to go.
If you don’t get a response from this post about another Rheumy, then maybe raise a new post - with title some like ‘recommendation for rheumatologist please’ and state how far you are willing to travel.
In the meanwhile, any good talking to GP again…..
Unfortunately there isn’t a local group in South Wales, but there is one in north Wales, might be worth contacting them - see picture
Thank you so much for this information! I will certainly look into this. Perhaps something good may come of it. I plan to leave no stone unturned. I didn't list all of my symptoms as I had all of them prior to taking the steroids, especially my eyes, and I was not able to speak or respond to anyone or anything. It was pretty dire. I was advised to drop from 60mg to 40 as this is the standard that the doctor gave me, but this was too fast as you have said. I do not feel like the initial dose was not high enough to address the inflammation fully. I will just try to keep with my GP and try to get as much help as I can with this, but I am afraid he is going to just believe what the rheumatologist is saying. We shall see.
I am now tapering by 5mg a month as I feel this is more manageable, but I am really scared about what to do in the event of another flare up. Surely this should be more under control before I taper?
I know my case is a bit extreme -as had already lost sight in right eye before diagnosed - but I was on 80mg for 2 weeks until ophthalmologist happy second eye was okay - then 60mg for 6 weeks, 55mg 50mg, 40mg all about 3-4 weeks. Led by ophthalmologist- who are more aware of sight issues than Rheumies - and GP who was ultra cautious (she had misdiagnosed me so understandable) - didn’t actually see a rheumatologist for 7 months….and then only twice.
Having read on here of the attitudes of some Rheumies I think that may have been a good thing!
…and yes, things should be better controlled -,but you need someone who’s prepared to give a definite diagnosis of GCA based on symptoms!
This is so true. I am really disappointed for you that you had to go blind in order to get a diagnosis and treatment. Absolutely terrible way to diagnose this disease (after the fact) and give you the correct treatment. Im appalled!
Trouble is, bloods were tested early days, and deemed okay so GP discounted PMR ( in hindsight now know - a) not everyone has raised markers, and b) they were a bit on the high side anyway) - so because issues were in shoulders only, left more painful than right she diagnosed frozen shoulder. Consequently everything after that was considered related to that and/or age and caring for late hubby.
Once she’d gone off on a tangent, there was no consideration of GCA, I had never heard of it, and honestly not sure she had either….and I didn’t do enough research probably due to worrying about hubby, and trusted her judgment.
She was devastated that she’d missed it, and I just hope that it never happened again to another of her patients.
I was diagnosed at 55, first on 70 mg for 2 weeks and then spent a good number of weeks around 50/60mg level, until symptoms under control. I had to go back up to 60 mg from 50 mg, after pressure headaches, neither hospital or private Rheumatologist think it was a flare, have to say they have not convinced me they are correct!
Opinions do seem to differ, as hospital Rheumatologist was not convinced I had GCA, but private Rheumatologist said unless had some weird and wonderful double type of inflammation was certainly GCA.
Can you try and speak to your private Rheumatologist about your concerns? I have not seen my private Rheumatologist f2f, my choice, so if you need another opinion location is not necessarily a problem.
I am going to seek out an expert and bypass the rheumatologist i saw last week. Just have to get in it asap. Most of today, I have felt terrible and weak, but tomorrow I hope to have more energy to seek this expert out
The doctor in the ER is an idiot - over 50 is the guideline age and that doesn't mean it doesn't happen in young patients, just that it is unusual.
What were the symptoms/test results that convinced the GP that GCA was a possibility?
I fear S Wales is a bit of a desert for good rheumies in the NHS - and apparently also privately! There are decent private rhemies in the Bristol and Bath area - is that an option?
I had most of the symptoms pertaining to GCA and was told by a chiropractor to get a blood test asap as my temporal veins were prominent. This, coupled with the severe pounding temple headaches and severe pain in my face, jaw, scalp, neck, shoulders etc raised the alarm bells. Blood tests showed a raised ESR,etc. I have been very unwell for quite a long time now, but being on steroids have helped to reduce a lot of the pain, but not all.You are correct about getting the best help in Wales. Its surprisingly difficult as they seem to not pay too much attention to this disease.
I have been told by a Vasculitis expert that many times when people have gone over the border to England and have been given a form treatment plan from a doctor in England that most of the time this is ignored. People have payed a heafty price for this too. I don't want to get into politics but this doesn't look like its going to change as Welsh ministers have been challenged regarding this issue, and have done nothing about it. Ots exasperating!
A lady on the Lupus forum has been fighting for specialist help. She was assigned to a GP "with a special interest in dermatology" as an expert for lupus. And he then left without her being told. She goes privately to a lupus expert in London - but the clowns in SW Wales ignore the expert ...
I live in North Wales, but had no idea that there is a support group here until Dorset lady mentioned it above. However there is quite a big north/south divide in Wales geographically, so if there is a support group over the border in the south, then that might be physically easier to reach. Where abouts in Wales are you Feathercraft?
That would be nice. Im in Cwmbran
Have been advised there is a group in South Wales - have asked for contact details…will get back to you..unless the person who advised me contacts you…….
Attendum…
Cardiff Central Library, The Hayes, Cardiff CF10 1FL, UK
Contact us
0300 999 5090
cardiff@pmrgca.org.uk
Susan Lewis
Thank you so much. Im going to reach out to them tomorrow.
Could anyone tell me if there is a support group in South Scotland? Very very new to this!
You even have your own charity n Scotland - pre-dates the Uk version by several years!
with their own Helpline personed 
by expert patients (can't say manned as at least one is a lady!)
Let me know how you’re progressing, I’m having the same battle up here in Norfolk. Rheumatology emphatic in their opinion that this is not GCA (all symptoms say yes but all clinical tests say no). Exhausting !
I have the same problem with my GP and bisphosphonates, a constant battle. Have you tried going through an ophthalmologist, mine is very knowledgable about GCA.
I certainly will. Looks like we are having to jump through hoops to try and negotiate our way through this. I thought there was. Fast track system in place so that we could have a biopsy very shortly after being diagnosed in order to stop all of this confusion after the steroids have taken hold completely. Ill let you know as soon as I find out anything new.
I am sorry that you are getting such horrible treatment. I was find my diagnosed in 2020 at the age of 56 right before going blind. I was very close to total vision loss. In hindsight I had been symptomatic for years. with normal lab work. At one time a friend of mine suggested walking into the next specialists’ office saying “I have been told by a doctor that I have GCA, but I don’t believe that I have it, and I don’t want to take steroids”. That line should work.
I am so sorry this happened to you. Im also shocked to hear that so many others have had the same outcome too.
Can you see an ophthalmologist in your area, instead of depending on sparse rheumatologists? You may receive more practical help with testing/diagnosis, AND be treated better! In the meantime look to your GP for guidance, direction and medication.
Unfortunately we must, at times, advocate for our health. Shame you’re having to do that while feeling so ill.
Thank you. I'll be looking onto this too.
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