This morning, I went to GP to ask for Biopsy, as the rheumatologist asked me to, and dictated the letter to her in my presence saying this. This letter gave the instruction, that I should have a biopsy as soon as possible as I was on no prednisolone at all.
As I had heard nothing after four weeks or so, I went to see her. During the conversation, I discussed the two documents that PMRpro has advised me to read and had with me, these the one by 'Quick' and this one:
She told me, strongly, told not to read them, as a little knowledge is not a good thing.
I explained the following: If we take the symptoms listed in the documents, and the biopsy shows positive, then the positivity is >90%.
I explained that I have had claudication of the jaw and of the tongue preceding the onset pain in the TA, and that I had none at the moment.
I also mentioned, that I had no scalp pain at present, having experienced that prior to the onset of the temporal acute pain.
She asked what is the level of the pain at the moment, and I replied about 25 to 50% of the pain level at inital onset, which was acute and totally unbearable.
She asked what I wanted her to do, and I replied: 'get the biopsy arranged asap'.
She then stated that, from what I have said to her, there will not be any point in doing a biopsy as there won't be any GCA in the artery. Come back when the pain is greater. I then left.
She had the rheumy's letter on her display, I noticed.
She has never looked at my temple area, and I am sure I can see swelling on a blood vessel visible there. it is the one that runs fairly horizontally towards the eye from the temple. She has not felt for the strength of the pulse either.
Am I worrying too much, probably as she thinks so, but, I must agree, ''A little knowledge is not a good thing!!!!!!!!!!!!!!!' By definition, GP's must have a little knowledge about all medical matters, but not a lot about any one of them.....otherwise they would not be GP's. (ooops what have I said)
But what do I do now? I took an aspirin to try and reduce the level of pain, but could feel no difference in the pain level afterwards (four hours ago).
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Old_Bedfordian
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Your rheumy is at fault too - someone else was told this at Christmas time. I'm fairly sure it is the place of the rheumatologist to arrange for the TAB as an emergency matter immediately - not to write a letter to the GP which can take weeks to get there. I don't even think a GP would be allowed to arrange a biopsy - there are regulations about what they are allowed or not allowed to do.
If a patient may have GCA on the basis of clinical symptoms then they should be dealt with immediately and the BSR Guidelines which you will find here:
"Early TAB in all patients with suspected cranial GCA is
desirable [11, 12], since it is of prognostic as well as diagnostic
importance. This should be performed preferably
within 1 week of starting glucocorticosteroids [12].
However, reports suggest that TAB may remain positive
for 26 weeks following initiation of glucocorticosteroids
[12, 13], and glucocorticosteroids should not be
delayed while awaiting TAB. It is the only specific diagnostic
test routinely available to all hospital units. A trial
of glucocorticosteroids is not an alternative diagnostic
test as it may be misleading due to a non-specific
response. This is relevant in view of the toxicity associated
with long-term glucocorticosteroid use and missing
an alternative diagnosis [14]. Patients with isolated
large-vessel GCA and no cranial involvement may not
require TAB."
Were you not copied in to the rheumy's letter as well? Go back to that or (IMHO, preferably) another GP in the practice and ask them to read the recommendations for suspected GCA in both the BSR Guidelines and the Quick & Kirwan paper and also ask if they are going to refuse to act in accordance with expert recommendations. If the GPs won't act on your rheumy's letter, ask to see the practice manager and get your own copy of said letter and take it and the other documentation to the nearest A&E department - if you go to the one where you saw the rheumy that letter must be in your notes. Ask for their advice and express your fears to them.
What a clown - she can see through the skin to the artery wall can she? It is true it may be negative - but there are other reasons for that, the giant cells can skip sections being one.
And ooops - what did you say? You expressed a truth! The expert felt a TAB was justified - who is she to disagree?
Thank you PMRpro. I did of course try very hard to explain your points carefully and completely expressed above. I even showed her the print out of the documents, including the guideline. It was this that prompted her to say that a little knowledge is not a good thing, and I must stop reading them. She just glanced at them. I feel so upset, I have been depressed all afternoon. I do not know how to act, however, you have confirmed one thought. Get a copy of the letter and take it to A and E. In this county we are far behind on most things, of that I am aware.
Please tell me what IMHO is, I cannot find it anywhere. Only one GP in practice and I am thinking of changing to another practice that is larger and has more GP's.
I have been thinking that her instruction is nonsense, as if I wait until the pain is more, say 2am tonight, by morning it may be less, and anyway, by the time I get to a biopsy or even manage to see her, it could be lower again.
Please would you answer this for me: In the guidelines BSR Guidelines and the Quick & Kirwan paper, stipulates a >90% predictive value, if I have claudication of the jaw, +scalp tenderness+new headache, should the TAB be +ve. Well, I have had all these plus the tongue + a few other symptoms early on, such as weight loss and night sweats, (never all at the same time (thank goodness!)), does this still apply? There has been weeks between the claudications and one week of scalp pain only then the sudden onset of the immense TA pain, at 2am.
By the way, this GP has only made one blood test on me. ESR and that was after three days of the pred, because I had to go to the hospital for it and wait until Monday. I now know from you guys that CRP should have been done as well.
Yes, I am in Bedford, and I did not know this point about single practices. I believe her father who is now retired is her practicing partner. He does not appear anywhere but I guess will come in should someask ask (just a guess). This is important, but no doubt his daughter and he have this covered. I made a big mistake. My wife is getting the copy of the rheumy's letter this morning, well she is asking to get it, it may be hard for her to get it. I have autism as well, and do sometimes get my knickers twisted, but she was with with me when the Rheumy dictated the letter, looking at me as she did to make sure I understood (the rheumy not my wife). She will and should be with me at all appts but was absent at the GP's one. WHen she is with me, I have noticed that people take more care of what they say to me too.
"I have noticed that people take more care of what they say to me too" - the same happens to women with many doctors. Having a male partner with them suddenly achieves politeness, listening and even action. It's disgusting whichever way round it happens.
Another aspect is who you are - one of the partners in our practice in Durham was downright rude to everyone and the first time I came across him I was most unhappy when I had to see him again. He walked in and was the life and soul of the party! The difference? In the meantime he had seen me at the lunchtime medical lecture at the hospital - in my white coat and with an NHS label. Grrrrrrrr!!!!!!
I think you have to take this GP to task. Get a new GP. Go to A and E.
I had some bad and unusual symptoms recently and phoned 111. They couldn't have been better. I was down at out of hours within 45 minutes. They gave me a thorough check up. Did bloods and said they'd call in the night ( this was all happening late evening) if I needed to increase the steroids. I would complain to practice manager, senior partner and threaten the GMC and BMA.
Well, this is good advice of course, and so glad you had the response that you did, how did the bloods go? I bet they did CRP, something I have not had. Thanks again
Hi. They checked everything in the blood. They thought it was not GCA -- I have PMR and not had the GCA symptoms until this particular evening. But they took me seriously. I think if you are not getting any joy with your GP then use the hospital -- and you can make the case that you wouldn't be using A&E time if you had a more effective and responsive GP. But it's your eyesight at stake not hers!!! Good luck.
The latest update on the episodes with GP and rheumy is that firstly, the rheumy did copy me on the letter on 19th March when I saw her, but I did not receive one. The letter is now with me, as I went to the hospital having organised a copy with her secretary. One problem is that the letter is wrong in the most part and does not give any true facts about my history. This paragraph is the most relevant and so I have copied it here:
'' I suggest that if he does develop these symptoms again, and or even if he is concerned, it might be worthwhile organising a temporal biopsy. After all, temporal pain can come from a cervical spondylosis, and his blood tests have virtually been normal, so it would be very helpful to have the exclusion of giant cell arteritis by a normal biopsy. However, contact with the Vascular Surgeons can usually achieve a biopsy within days.
Thank you for doing all the blood tests. I don't think he needs another review, but I am hoping that if he does develop the episode of temporal-sounding pain again the Vascular Surgeons would give you the answer.''
Without telling you the rest of the letter which states the opposite of all my symptoms over the last ten years (with only two short visits, one in 2008 and in 2015) to convey any info, in my opinion this paragraph is sufficient for GP to organise a biopsy.
I have had only one blood test with this GP and that was for ESR after two days and three nights of the five day course of pred at 40mg/day.
To make sure you are aware of my dillema, PMRrpo, my GP in response to this letter by telling me: ''come back when the pain is more severe and I will consider doing a biopsy''.
She refused to take note of the guideliins you sent and that I had with me.
My TA pain is there all the time, and sometimes increases and sometimes decreases. I use a bottle of brandy to overcome the pain when it gets too severe to cope with. Nothing else works.
I have so many questions, but I feel in despair now. I have arranged to talk to the theumy's nurse. The rheumy being on hols until 12th May.
Yes - a common story, I didn't recognise the letter the rheumatologist sent to the practice and me as describing the consultation I had either. Yet in your case you say it was dictated in your presence - what does your wife have to say? She was there too you said.
Well, my wife agrees with me, so what was written was not correct at all. However, since I wrote this post I have spent 30mins going over the points with the rheumy nurse. Achievement1: The rheumy will write to the GP again instructing the biopsy. Achievement 2: I have managed to dictate the correct info to the nurse to give the rheumy, and also will write a bullet point type letter and get it to her, so that the facts are clearer.
I can't understand why your rheumatologist has referred you back to the GP with a request for a biopsy rather than instigating it himself. If I were you, I would go to A&E, explaining your temple pain and telling them that, although not on them now, you have recently been on steroids for a short while for suspected GCA/TA with an immediate good response. Hopefully they will prescribe another 40mg starting dose, in which case, if that improves your pain, you should not attempt to reduce from that dose for several weeks. The 5 days at that dose previously was nowhere near long enough to completely stabilise the inflammation. Then hopefully you will be able to change your GP to one with a little more knowledge and listening skills.
This is concise and precisely to the point. 100% agree. Will do. Thanks Celtic, I feel better having this forum to give me a lift, I felt so low today, almost suicidal to be honest, much better now though.
If you can face it it may be worth phoning the rheumatologist's secretary and ask her if the specialist books the biopsy as you have been blocked by your G.P. The switch at the Hospital you were seen at can usually put you through. Also some clinics have a specialist rheumatology nurse and if yours does she I am sure will be able to offer some advice. These sorts of struggles really would get anyone down, I am fed up with G.P.s who cannot communicate with other professionals and patients despite having more technology to help them.
I am far from happy with my own G.P. But don't want to change horses mid-stream and at least they do the blood tests at the surgery.
Sally, thank you. Yes, this is our next call if we can get the copy first. Of course, even if we cannot, as they will have one. Not thought of that before, silly me. This is a good course of action. There is a nurse, I remember. Your words of 'blocked by my GP' are good ones. Thanks, and yes, I had (note had) that feeling about plodding on with her, until yesterday's visit. She poo-poo-ed the docs I had showing the guidelines etc, and sneered at the mention of the time limit for ESR measurement and the effect that pred has on it over the two days and three nights I took it before the test was done at 8am. Even the old blood test guy mentioned ''hmmm, no crp required, that's strange''.
Hi , I have PMR diagnosed June 2009 and GCA diagnosed September 2009. You need to go to A&E immediately your sight is at risk!
I don't mean to scare anyone but you can't take risks with your sight. You should have been referred for a biopsy or ultrasound immediately. Do please go to A&E and change your GP and check on the Internet which rheumatoid specialist who is interested and has experience of GCA is reachable from where you live. Good luck!
Hi Cumbria. Yes, as you can see from all the lovely people writing to me (thank heavens for this forum), I am now taking all the actions advised, except your last point. Another very good suggestion about the Rheumy close me. However, I bleieve there is only one in Bedford Hospital. Dave
I am astounded that a rheumatologist would send you away asking GP to organise. This is usually booked by Rheumys. I seen my Rheumy in clinic and had biopsy 6 days later as an urgent case. I would phone your Rheumy and explain and ask if he can book it. Hopefully you are protected to some degree bty steroids. As others say if you are displaying GCA symptoms attend A+E, they are very supportive of people with concerns re GCA. Good luck x
Thanks runrig, but no, I am not on steroids or anything, and the pain is getting me down. However, I have made headway today, and will write a post tomorrow as it is too late for me now. I have just finished with the rheumy sec and GP and written a long letter for my new GP, and for the rheumy. I understand what has been happening. Still no excuses though. So much to say, but must go to bed. I will be awake at 2am as usual.
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I don’t have to eat my hat!
GCA temporal arteritis 
GP gave me a sensible stamp lol…
Please can you give me some advice about seeing my GP?
Incorrect diagnosis??? 
