Hi all, has anyone experienced chest pain as part of their PMR?
I've always had chest pain with my PMR and assumed that it was "normal" for some of us. I had my last chest x-ray in August 24, all clear. My BP and heart rate are fine, no shortness of breath.
I am flaring again. I'm on 8mg pred and it has happened every time I've gone below 10mg. This time the chest pain is really high, makes me wince and sometimes cry out it is so bad. Other symptoms are the usual shoulder pain, arms, hips and neck. My GCA type (they never found it) symptoms are low but still there - jaw ache, difficulty swallowing, tender/sore head, mild headaches. Eyes are fine.
My GP and Rheumy advise use of codeine and paracetamol as pain management, I find that both are mildly effective but not really helpful. Your views on this would be helpful too.
I have a Rheumy appointment Feb 3rd, and bloods are due next Monday, but thought I'd ask the experts first!!
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Progfan
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Codeine and paracetamol for the types of pain you are experiencing? I fear you are being neglected. There are many reasons for chest pain and if x-ray is the only investigation you’ve had you are, in my opinion, being short-changed. Your other pains, shoulders, arms,etc are typical of PMR and are highly indicative of insufficient prednisolone. The ‘experts’ will be along to advise your next step. What investigations did you have to rule out or confirm GCA.
One more thing, does your chest pain come on after eating? Acid reflux can cause quite intense pain.
Hi, thanks for your reply, and advice. The pain management advice I believe to be a ruse to ensure that I keep reducing my steroid dose. Codeine is brilliant normally but has little effect since getting PMR.
My chest pain follows the same pattern as my other symptoms, increases during the night from about 2am, is worse when I take my pred, then reduces.
To test for GCA I had a biopsy. Even though research tells us that a biopsy isn't perfect all the time, it was enough for my Rheumy to say that I don't have it. He can't tell me what I do have mind you. My eyes improved with the high pred dose but all other symptoms are still there, but mild now.
Hello, can you describe the chest pain a bit more? Is it rib based such that you can put a finger on a point and make it hurt and if so is it where the rib joins on or between the ribs?
A negative biopsy result, as you probably know, doesn’t guarantee no GCA. The sample, simply may not contain the affected cells. If they were treating GCA from some time in August, to have got to 8mg in 4/5 months is quite fast. I was on about 18mg at this stage having started on 60mg for a week, dropping to 40mg for 6 weeks. It is not surprising that pain killers aren’t really helping as they generally don’t, or is it assumed that the rib pain is mechanical? Is anyone medical aware that your GCA symptoms aren’t controlled? They really should be.
Thanks for your response. I have read about the sternovclavicular joint being affected by PMR, that is where the pain is - at the top of my chest. No-one has looked at it other than the 2 chest x-rays, I assume that, like me, they think it's part of my PMR. As I said to 123-go just now, it does come and go with my other symptoms. I'm definitely flaring again.
I agree with you about fast taper. My Rheumy ruled out GCA on the basis of the biopsy (didn't offer a suggestion as to what else it could be) and put me on the fast taper. I reduced much more slowly and we had a row about it at my next appointment. I believe that now I will have the evidence to show him that he was wrong, as long as my bloods support what my symptoms tell me!
Just want to prepare for my Rheumy appointment, you guys are so knowledgeable it will help me to put my notes together.
Here is ine example of papers that state that a negative biopsy does not discount GCA, or indeed normal bloods. I was one with both of those but was treated for GCA on the basis of my good resolution of symptoms on 60mg Pred. There have been people on this forum whose Rheumy has discounted GCA on the basis of negative biopsy and/or normal inflammatory markers.
I had rows with my various rheumatology docs about reducing, even though I never had flares and never had to increase my doses. It was horrible having to go into ‘battle’ each time. Can you get a second opinion on your diagnosis? You do need to tell your GP that your GCA-like symptoms are present again. I might ask them how they might protect you from the risks of GCA given that you are flaring. If they will stand by it not being GCA, what other differential diagnoses are they offering or checking for?
I believe you have the mindset to question and ask for answers, Profgan. As long as you are polite and respectful- even though it may be through gritted teeth- you should be treated with respect in turn.
Some practical advice/reminders for the consultation was learned through my own experience, and that is to have your questions and points you want to make written down with what you consider the most important at the top of your list. Cross off each question after asking. You probably know this but ( just in case) You can jot down notes as the consultation progresses and ask for anything that isn’t clear to be repeated or clarified. The next bit of advice is to ask at the end of the conversation if the rheumy will read out the notes he has made to ensure that you are ‘on the same page’. It’s happened to me that a new rheumy’s follow-up letter bore little resemblance to what actually went on during the appointment and it was one of those rare occasions when my husband didn’t accompany me as a second pair of ears/eyes.
Very best wishes. Apologies if I am teaching my grandfather to suck eggs 🥴.
Thanks for your detailed and considered response 123-go, much appreciated. It is best never to assume anything so I'm grateful for your input - anything I already know will reinforce that I'm on the right path. I do take notes with me, which is why I'm asking questions today, it will help me to prepare. Interestingly, my Rheumy doesn't like it, told me it wasn't necessary, but I still do it. He's very good, and I'm lucky to have him, but he is an expert on PMR/GCA, not me and my situation.
That's a great idea to ask him to read me his notes, thanks for that, I will do that this time.
Rest assured, I'm always polite and respectful, yet assertive, you are right that it gets best results but also we are all human and have feelings, and deserve to be treated well. In any case, we should display the behaviour that we want from them in return.
Thanks again for taking the rime to respond. This forum has been a real help to me, at times this journey is a very sad and lonely one. Knowing that there are people out there who care and understand is important.
"but he is an expert on PMR/GCA," - is he really? I'd say the majority of rheumies might claim that - but few really are.
In a presentation, one such rheumy said that the way to become a world expert was to announce the fact (or words to that effect!). He has his own views - which really don't often fit with his patient's experiences!
Fair point, well made PMR Pro! When I met him he was unaware how educated I was (from this forum and reading research etc, plus my own experience) but he passed the test - he was very knowledgeable. The problem was that he focussed on PMR/GCA and not me and my PMR, and wanted to stick to his one size fits all plan. That's when we clashed.
You’ll never be alone here, Profgan. I wish you well and look forward to hearing the outcome of your consultation.
I’m back because what you said about your rheumy being an expert on PMR/GCA and not on you and your situation rang a bell. See here: england.nhs.uk/personalised...
My GCA was diagnosed by PET/CT when they were convinced that I had multiple myeloma. Negative biopsy. Actually, I do remember getting chest pains now. The type that when I tried to lean over to pull the car door shut had me wince with pain. I assumed I had somehow pulled some rib muscles. I did not have any inflamed arteries in my head north of my upper jaw, but all other arteries including down the femoral showed bright yellow.
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