Diagnosed w GCA in May2017. Finally, using the v slow tapering method, took my last Pred on Sep 13th 2022. Since then BP shot down to below 120/90. Mine has always been around 135/75 on meds. My pulse rate, normally around 75 shot up to 133.
Is this to be expected? I’m having a blood test and ECG today.
Well done on getting down so low - and hopefully off - pred. I don't take anything for granted after just a few weeks 
That the BP has fallen without pred isn't entirely surprising - though I would have expected it to be similar at the very low doses. The pulse is a bit of a conundrum though.
Did you drop from 1mg to zero? Over how long? Recent work suggests that as little as 2mg pred is enough to compensate for adrenal insufficiency - much lower than the traditional level of about 7mg. Is it possible that you were not suffering any effects of poor adrenal function on even such a low dose but having no pred in the system is having some effect. Adrenal insufficiency can lead to hypotension - accounting for the drop in BP - and also to tachycardia. Is it constant or intermittent? Have you any other symptoms?
I dropped to 0.5mg daily then over six weeks dropped 0.5mg each week. Just come back from blood test and ECG. Looks as though it’s atrial flutter so more but different meds! My only other symptom was short of breath.
My atrial fibrillation is due to damage to the electrical cells done by the autoimmune part of PMR - did you never have any sign of it before? Pred usually gets the blame, but I am sceptical about that.
What has been added to your diet? If it isn't one thing it is another ...
Did you get an medical confirmation of that or is it a strong logical opinion? I ask as I have been blaming Prednisolone when it is dawning on me it might be the inflammation of PMR. It was 5 months before PMRGCA was diagnosed but the BP and ectopic only surfaced after being on prednisolone for about 2 months. I don’t think it was there before as I had a battery of tests which would have seen heart problems. Although Rheumy has said PMR is probably the culprit the GP mentioned ‘steroid high BP. I have been blaming the steroids thinking ‘robbing Peter to pay Paul’ sort of thing. I now have Afib and am on blood thinners with Beta blockers to hand
I suppose it doesn’t matter as long as we treat the current condition or conditions but I have been racing to the bottom which has probably been unhelpful!
The palpitation-type symptoms had started about the same time as the other PMR symptoms, 5 years before I took any pred. It is paroxysmal - happens for short periods now and again. At the start I could go weeks between noticing it - and even now, unless a recording is made during an episode there is absolutely no sign of it at all. Once I was on pred it probably improved and it wasn't until I was in hospital for severe back muscle spasms that they found it - they used i.v. diazepam as a muscle relaxant which worked like a dream except after the second infusion I had a known but rare reaction: several hours of severe a fib! That resulted in a week extra in hospital while it was very thoroughly investigated - scans including an echocardiogram and an audience with the Big Cheese for arrythmia in the regional big hospital. Still absolutely nothing dodgy to be found anywhere else and his opinion was that it was autoimmune damage. It was treated medically and it was after that I realised these episodes I'd had in the past had also gone. As long as it is well controlled I notice very very little but it is always slightly worse when I have a flare. Part of the reason for the high pred dose I was on was to control the afib better. I am now on tocilizumab and it seems to be less. The cardiologist here agree it is linked to the vasculitis.
Oh wow! What a journey! I have a myriad of questions.
First ‘the cardiologist agrees it is linked to the the vasculitis’. So that is certain acknowledgment that PMR is vascular? I know that GCA is and they are linked in some way but not necessarily in a vascular way. In hind sight I realise that I had PMR roughly 2weeks before the headaches. The headaches were so bad that the body was almost forgotten but they were both linear pain. Down the arms, mainly the left, the back of both legs and from behind the right ear up to the back of the eye up over the temple. Never the left side of the head. For me if GCA was vascular then so was PMR. And yet as far as I understand they are not the same but cousins. I’d love your knowledge on this and forgive me if it is already out there but Dr Chetan Mukhtyar said they were only linked. Has anyone tested for giant cells in the arteries of the legs and arms?
I would also love to know but do tell me to go away if this is too personal but how did you cope for 5 years undiagnosed? I just can’t imagine that. Did any doctor try to help? It must have been dreadful and so confusing.
And thank you. Thank you for helping.
Depends who you are talking to. I think everyone I associate with accepts it is vascular. There is a much closer association than many doctors understand.
academic.oup.com/rheumatolo...
Someone said on the forum the other day about the concept that in GCA it is the microcapillaries in the walls of the arteries that underlie the cause - and it is possible that the microcapillaries supplying the soft tissues around the joints do something similar in PMR.
It is a bit difficult to look for giant cells in most arteries, it can only be done via biopsy and actually removing a piece of artery which isn't practical except during certain surgeries such as open heart surgery or at post mortems. The only reason the temporal artery is used is because it isn't essential and is superficial - not because that is always affected.
I wonder what CM means by linked - and he has already modified some of his ideas about managing GCA! He has said in my hearing that he checks all PMR patients for GCA - I suspect he realises there is a very close link between them!
How did I cope with PMR undiagnosed for 5 years - you just get on with it and adapt. As I realised I couldn't continue with the gym classes I was doing, I changed gym to one with a pool and good range of more appropriate off-peak offers. They had aquafit so I did a class every morning Mon-Fri which meant I could move enough to do Pilates and Iyengha yoga afterwards and that helped the stiffness too. I worked freelance from home as a translator so could arrange my work hours to suit myself. I could only go anywhere if I could drive and park close by, long walks weren't an option because of the bursitis. I did continue to ski for a long time - and discovered the hip action in skiing really helped the stiffness! I used to sit with my back against a radiator - heat did help. I gave up a lot of things - my hands hurt so cooking and baking reduced a lot but my children were no longer living with us and OH didn't eat much anyway so it didn't matter. It was a wonderful relief when I got the first dose of pred - but the ongoing journey hasn't been easy, mostly I believe because of the delay in diagnosis and management.
Did you go to doctors?
I did think that old age had come all of a sudden. There were days when I though I was recovering then all of a sudden….! I just couldn’t work out what I had done. I only sought help with the headaches.
Repeatedly in the 5 years - my blood markers were in normal range so he decided there couldn't be anything wrong. I was old (a whole 51 when it started) and unfit - at the gym every day. And I told him he needn't suggest "all in your head". The mistake I made was not trying other doctors in the practice. The one who it turned out was good at PMR was on maternity leave a couple of times and only worked part time. She was good - so impossible to get an appointment to see. I worked out what it was in the end.
Oh you must be so angry. Well I am a bit after 5 months , 4 visits. But I have heard of some awful mis diagnoses.
How did you get diagnosed in the end?
I spent a lot of time researching online and while reading a blog by a GP came across a description of a patient which matched my symptoms. I suggested it to the GP and he referred me to a rheumy - who was unconvinced but gave me pred to take me through a working trip to the US. My response to 15mg pred - massive improvement in under 6 hours - didn't convince him, mainly because he wouldn't listen to me, but it did convince the GP in the practice who thought I was pretty textbook anyway. I moved here to Italy soon after and no-one here has suggested it is anything else, and that includes a rheumy-trained GP, the main rheumy in the rehab unit and my own rheumy who is a world name in the field. In the UK there was mention of osteoarthritis and inflammatory arthritis as the cause of the symptoms - no sign of either 15 years later.
Re the link between PMR and GCA: I was diagnosed with PMR in March 2020, then despite having to slowly increase the dose to 25mg, was relatively ok for the following Summer. During the autumn, I could walk shorter and shorter distances, until the following March I had the headache and the GCA/LVV diagnosis. So it's my secret opinion, based entirely on m own experience, that they're are pretty much the same disease, with different manifestations in different people; in my case the GCA/LVV was probably there from the start, slowly chuntering away until it got too much for the PMR dose.
GCA patient, with tapering issues after 4 years
Bit shaky after first taking pred
35mg Pred after a year of GCA,PMR
Vomited after taking pred
Weird feeling after 3-4 hours of taking Pred? 
