Low esr and GCA

You were very lucky barb - less than half of patients with GCA have a positive biopsy! It should be a diagnosis made on clinical evidence and if the surgeon confirmed it there and then he must have done that. The biopsy must be sent for histological examination which means making slides and looking at many samples - that takes some time. The biggest positive for you is that no one can argue with your diagnosis - you had concrete evidence. Anyone who gets a false negative is always at the risk later of someone deciding they don't agree with the original diagnosis and wanting to stop the pred.

Thank you. I have been referred to rheumatology but my appointment is not till next month. My doc is reluctant to believe the PMR diagnosis cos of my age. j am 46 and although it is unusual at this age, it is not unheard of. I am hoping the report from the ortho specialist changes her mind (I was going there for my hip pains on both sides-it feels like someone is driving a screwdriver through them sometimes, particularly at night and when I have had to sit for more than about 20 mins).

Thank you. I do feel somewhat reassured, as my jaw pain is there all the time, not just when chewing, and I dont have any new visual problems, my eyesight has been deteriorating over the last few months and has been blurry all that time, so thats probably just normal. I will do as you say though if things suddenly become worse. How awful that some doctors are sarcastic! Its  bad enough we have to put up with the illness without them knocking us down too! My rheumatology appt is next month but I may go back to gp tomorrow anyway. Work are on at me cos occy health said I should go for CBT and I havent been and physio which SHE was supposed to arrange and hasnt! She told me to arrange CBT through PAM assist, but they dont even do that in this area. Sge told me there are fibro experts on the Wirral I can see - there are not, its just rheumatology. She was useless actually and even though I could not sit down the whole time I was there and could only walk with my stick and then very carefully, she insisted I would be gine to return to work after some CBT and physiotherapy. So now, work are wondering why I have not returned. I really cant see how either will help. My pain is widespread and so bad I am in bed most of the time. They are taking me down the capability route which will ultimately lead to dismissal! I have applied for EVR but seem to have been ignored for the second time. Blimey I dont know how much more I can take x

The fact you responded so well to pred says two things: one is that it is most likely to be PMR and the second is that it is very unlikely to be fibromyalgia - pred does NOTHING in fibro.

I think a good approach might well be to return to the GP with the documentation you have and point out to her that either she allows you to have a moderate dose of pred in the meantime or you are likely to be out of a job. IMHO occy health are a mixed bag - either they are good or they are awful. It depends on what you do but I find it mind-boggling that she thinks that if you can't sit you can return to work after 5 minutes physio, it doesn't work like that - and if it is PMR physio is not advised. You need a bit more support from the orthopaedic consultant - a phone call to his secretary is definitely called for and tell her what is going on. 

Good luck - I hope you get a bit of response from this rather feeble GP. She is talking rubbish insisting you have to see a rheumy for pred - the guidelines say that only patients with atypical PMR need to see a rheumy. Waiting months for an appointment is useless to someone who can barely move - and you have responded typically to pred.

Well that is very interesting that you say fibro will not respond to pred! She assured me that ANYONE taking pred will feel great when I told her how wonderful I was feeling. I have just returned from dropping my son at work and I am in so much pain in my legs and hips. He has not worked out how to get to his new job yet and I dont want to let him down but driving more than 20 minutes absolutely cripples me. I will have to go back to see a different gp and hope they have my report from the orthopaedic specialist. I really feel I would have been able to return to work if I had continued on them, and was devastated when she said I could not have any more, based on my low esr results. Thank you for your advice x

That is drivel - what a daft woman! At higher doses there is an element of euphoria in the side effects but not everyone experiences it - I didn't. The main reason for feeling well is you are no longer in pain! And it is an absolutely typical textbook response of PMR to pred - how ignorant on her part I'm afraid.

I had a GP like that - no elevated bloods, no pred. But had I gone to one of the other members of the practice she would have treated me on symptoms and did give me pred on the basis of my response when the rheumy wasn't interested. Can you see another doctor in the practice?

The not being able to walk on getting out of the car is so typical - I looked about 90 when I got out of the driving seat for most of the 5 years I had without pred. You need another doc!!!!

I will definitely book to see a different gp. Thank you again for your advice. Her answer was "we'll be giving you diabetes, we'll be giving you osteoporosis, we'll be giving you heart problems etc" but what about all the codeine, tramadol and liquid morphine they are so happy to prescribe?! Surely at the doses I am having to take that cant be doing me any good! I have to take more than I am prescribed to just get some relief, it never goes away completely, but ut did with the pred. I was literally dancing around my boyfriends flat feeling back to my old self, thinking about all the things I could  do again. It is not on really. Thanks again x

"we'll be giving you diabetes, we'll be giving you osteoporosis, we'll be giving you heart problems etc" 

Well, possibly but I have none of the above after 5 years on pred at above 10mg most of the time. I do have a heart problem, atrial fibrillation, but the cardiologist is confident that was due to the underlying autoimmune bit of PMR doing the damage - it was there mildly since not long after the PMR started and I wasn't on pred then. And leaving the long term inflammation of the arteries can CAUSE vascular problems, including heart attack and stroke, and make it more likely you could develop certain cancers. 

But the bottom  line is: it will give you your life back. Without being able to live normally I think saying she trying to avoid something that isn't certain anyway is a bit daft. If you are immobile then you are a high risk of osteoporosis anyway.

Yes, that is exactly what I thought. The problem with going to see anyone though is that they dont give you time to discuss things. I was just rushed out last time. I will keep trying thanks again x

Either you demand (nicely of course) a double appointment, preferably last of the session, or you sit there and say you haven't fully addressed my single complaint - because a single complaint it is, it is all part of a single illness.

I hate saying this - but taking a partner often achieves a change of mindset on the part of a doctor who is dismissing a patient as "hysterical" or attention-seeking. 

Thank goodness for the system here: you turn up and wait your turn (how old-fashioned) but you can also phone and make an appointmnet outside the normal 2 hours of surgery. And when you go in they deal with EVERYTHING in that session, no "you'll have to make another appoinment in 2 weeks..."

Yes thats a better system, sounds good. Well my partner insists on coming with me anyway and has been to all of my appointments. But yes I will definitely be standing my ground next time. I couldnt go today as they were all gone, but will aim to get up early in the morning to ring at 8. They are all gone by 8.30! And i really want to see someone different this time.

thanks again Eileen x