Last Thursday I arrived at my Hospital A&E just after lunch with worrying temple pains which were of concern as I have GCA.
I waited hours and eventually was seen by a Doctor at 5pm.
I explained my symptoms and illness in detail and noticed a puzzled expression on his face, well you don't need to see a Rhumatologist I will have a word with someone in the eye clinic he said and left the room.
When he returned five minutes later he informed me that he had spoken to someone and advised me to see my Doctor in the morning and get a referral if I thought it necessary to see a rheumatologist, but this could be a medical emergency I said, His reply was classic, You seem to know a lot about your illness I suggest you decide at what
Level of prednisolone to take and in the meantime book a Doctors appointment.
It was no real surprise to me that this Doctor did,nt have a clue as you read these stories all the time on this site.
Fortunately I doubled the dose of prednisolone to 20 mg when. I got home and things have improved for the time being and this is my fifth day at that dose, anymore problems and I will go back on to 40 mg, but I think I have got away with it this time.
I know that I may be playing Russian roulette with my eyesight but without professional guidance I don't feel confident in self proscribing massive dosages of steroids because the help that you need is not there.
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Classicmike
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When that happened to me with an arrogant little s&^£ I was able to call his bluff. My younger daughter had query appendix problems but they couldn't decide. She had another episode and I took her to the GP who told me to take her to A&E (admissions and emergencies in this particular hospital). The junior doctor I saw was quite rude and insisted she wasn't "guarding" - i.e. curling up to avoid him touching her stomach (she was) so it couldn't possibly be appendix and, basically, go away. I watched him write in the notes "hysterical mother" (I'm very good at reading upside down).
I went to a friend who was a GP and also worked in the hospital and she took me in to the ward to find the consultant she worked with. He took my daughter into the exam room on the ward and had a quick look and then called all the junior staff to a "ward round". At the back of the group was the arrogant little s&^£. The consultant demonstrated how to examine, pointed out the guarding, the distension of her abdomen... Conclusion: it may not be appendix but it is definitely something and, since we can't see through skin, we'll take her to theatre tomorrow. They drained a lot of fluid in theatre which was probably causing the pain and removed her appendix "then we know it isn't that if it happens again".
Alas there is a lot of it about but it is such a shame that as well as dealing with an illness you have to deal with this sort of attitude where ignorance and arrogance seems to be the norm.
Thank goodness for this site this can be a very isolated medical condition if you let it and the support you get from other sufferers can be very comforting thanks PMRPro
Mike, whatever do they teach them at medical school? Not only is he ignorant but sarcastic as well, with an attitude problem.
I hope you have by now been in touch with your GP who should refer you urgently back to the rheumatologist. No-one should have to self-medicate, particularly with steroids and especially at these high doses.
You are within the first couple of years of treatment and, unfortunately, flares are quite common during this time.
The guidelines state that with relapse involving the symptom of headache, treatment should be with "the previous higher glucocorticosteroid dosage".
Perhaps it would be wise for all of us to download a copy of the BSR Guidelines and take them with us in the event of a visit to A&E in case we come up against similar arrogance and inefficiency.
I could'nt agree more Celtic this is all a bit tricky at the moment as I am having an angiogram in September as recent tests (CT Angiogram) results show occlusion in my two left arteries so I am holding out until then as going back on very high dose of steroids may prevent me from having the surgery?
I am due to see the professor when I am down to 7.5 mg (fat chance) ,he wants me to include Leflunomide alongside the steroids to tackle the PMR pains so I am hoping that in September i can resolve things more.
Mike, you say going back on very high dose of steroids "may" prevent you from having the surgery. You shouldn't be left to make these decisions alone. Would it not be possible for you to bring your appointment with the rheumatologist forward - perhaps he can link up with the cardio people and get clarity.
Hi Celtic, I don,t have an appointment with the prof at the moment, he has left it to me to get on touch when I get down on the steroids, problem is I am now back at 20 mg? (The same level that I was on when I saw him) got to 10 then the temples started playing up I will try to see if I can speak to him on the phone as I am not up to the 120 mile round trip at the moment and I have no faith in my local hospital.
I may also write to the cardiac surgeon to ask his advice, in the meantime I can put up with the PMR pains as long as my temples are ok.
Pick up the phone NOW Mike and call the Prof and/or the cardiac surgeon. DON'T write, that takes forever. Having an angioplasty for something they obviously don't perceive as an emergency at present comes secondary to possibly saving your sight. You are risking that maybe without knowing the view they will take. If reducing your pred brings back the GCA problem then he must balance the risks of the two. That is what he went to uni for 6 years and then spent a similar amount of time doing his Membership - and if he's a prof he's way past 14 years as a medic I would imagine! We can't advise here, other than to tell you to speak to him urgently. That's what he's paid a lot of money for. That, and to discuss with colleagues what do do about a problem like Mike.
Hi PMRPro just spoken to the professor and he has advised me to get the pressure in my eyes checked right away (I am having a pre-assessment tomorrow at 3 pm so I will contact the eye clinic to see if they can do it, failing that I will go to an optician.
The prof thinks that the steroids may be giving me the symptoms as I do not have either jaw pain or visual disturbances.
He has advised me to go back on 15 mg tomorrow and within a week down to ten
After my op I am contacting him again as he wants me to start leflunomide as soon as possible.
I will in the meantime be mindful of worsening symptoms of temple pain and will be rushing to the pred bottle if showing signs of concern.
Thank you PMRPro and Celtic for your invaluable help.
Good lad! I have often said to people to go along to a good optician and ask their advice if they can't get to A&E. Pressures and the state of the optic nerve when examining the retina can be done by an optometrist - probably without the sarcasm of little boys who think they know it all. Once you know - contact PALS at the hospital to make a complaint. It might do some good though I wouldn't hold my breath...
Mike, I echo everything said by PMRpro, and when you talk to the Prof, don't forget to pass on the arrogant reply you received from the A&E Dr when you mentioned wondering whether you were facing a medical emergency. This should be reported.
Hi Celtic many thanks for your help please see my reply to PMRPro regarding the profs advice
No patient should be expected to diagnose themselves. Even doctors, when unwell, see another doctor for diagnosis and medication. No patient should be expected to prescribe for themselves either, especially without access to blood test results, scans, etc., and without medical training and experience. I am appalled and shocked by the huge amount of confusion that exists by professionals about these 2 autoimmune illnesses, whether PMR is a rheumatic condition or not, or a muscular condition, or related to GCA, and whether when temporal arteritis is in remission (which they only seem concerned about because they are afraid of being sued if someone loses their eye-sight), whether the inflammation of the arteries elsewhere in the body is still active and should therefore not be ignored. Why are rhematologists seeing patients if this is not a rheumatic but potential damage to arteries and vital organs? The consequences of poorly treated GCA could be an increased risk of stroke, heart attack, dementia, etc. Why is there so little preventative understanding? Why are people not campaigning with placards outside surgeries and hospitals and writing to their MP to end this ridiculous occult perversion that prevents patients from getting necessary care? Professionals are paid, especially to attend to those who are in pain and disabled. Unfortunately, patients who are knowledgeable about their illness often create defensive reactions from doctors who don't know much and can't be bothered to spend 5 minutes looking it up.
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