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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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 would be looking for a new rheumatologist! It doesn’t sound as if they know what they are doing, which is quite terrifying if you do turn out to have GCA!
Thanks for your feedback Tappo. It is helping me to prepare and get things in perspective. I have had 2 appointments, one good, one bad, this is the last chance! He did treat as though I had GCA but the fast taper was wrong. Hey ho.
I know it’s not easy, but it’s not impossible. What is the point in seeing someone who clearly has no interest in one as a patient? Knowledge is a waste of time then, as it is about the application of knowledge to patient centred care. As we know, it is that which produces the best results.
Absolutely. Way back in 2012 there was a document produced called ‘no decision about me without me’. It is quite staggering that these things take so long to filter down or are blatantly ignored.
What is helping me is getting all of the different perspectives rather than go it alone. Ideally he will work with me, I will work towards that, but if not then things will have to change. As many of you understand, the last thing we need is further stress and change, we are all looking for support.
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...
Hi, I will be posting shortly, but wanted to reply to your supportive post 123-go. I had my appointment today, went fully prepared (thanks!) and the meeting went well. Rheumy has now backtracked and says he thinks I have GCA, has upped my dose of pred and started me on MTX.
Thanks for your help, I hope things are ok with you.
I’m pleased your rheumy was more receptive this time. I’m sure that the many people who replied to your original post will appreciate an update. It’s good when a plan comes together and I know the feeling of empowerment that having the confidence to question brings. You did well!
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.
Hi Peofgan.I can't comment on the GCA aspect of your post, but I had very severe issues with both sternoclavicular joints and rib pain (referred to by my doc as costochondritis, but not really matching that description as the pain in as all the way around my ribcage). My sternoclavicular joints were swollen and red & tender to touch. My rheumy sent me for ultrasound investigation which I was told showed severe arthritis - unusual in a joint that doesn't move much. They offered me a steroid injection which I refused partly because by the time I got the appointment for the ultrasound the pain had reduced somewhat, partly because I just didn't fancy the pain of the injection. Anyway over time (3-4 yrs) the pain redness & swelling have all reduced and the joints seem to be entirely normal now so I guess my "severe arthritis" has magically disappeared! I was initially on 15mg of pred and now, after a very long very slow taper I'm down to 2.5. I realise that pred can help with arthritis but I really feel that the pain & swelling I had was part of my PMR except not recognised as a symptom.
This forum has been a great source of info for me for years now but I've never posted anything before cos I've not felt I had anything to offer. I hope my experience helps you. I wish you the best of luck with your PMR/GCA journey. For what it's worth, I think you need a new Rheumy.
Thank you Cowgirl Jo, this is really helpful and reassuring to me. I thought it was PMR, but started to doubt myself. You and others here have really helped me get some perspective so thank you. I'm so glad you posted. I'm a watcher not a poster too, this is my first question to the forum. Should have done it before!
Everyone has something to offer - everyone has had a different experience and it may help someone. And it isn't always for what you can give - if you are down about anything someone will give you a virtual hug!!!
Thank you. Yes, I've come to realise from reading so many posts that you guys are amazing. The knowledge I've gained from here has helped me so much in my PMR journey. In the past someone else has always asked the questions I needed answering so I've not felt the need to post, and someone else has always seemed to have a better answer to posts than I could give from my experience. Profgan's post just seemed to strike a cord cos I've not seen anyone mention the sternoclavicular joints before. 😉
But even just saying "thanks for asking that question" or "I have that too" is a very positive participation because the whole point is that so many things that doctors think have nothing to do with PMR do crop up again and again. "You are never alone" and the more people who say "me too" the more backing we have to tell rheumies we don't agree. Even if it is anecdotal.
It was that that gave rise to the "ears study" when some ladies with GCA at a support meeting mentioned they had ear problem in the run-up to their GCA diagnosis. The local PMR/GCA expert who was speaking took a straw poll and the charity provided funding for the first step of a patient survey. This gave enough evidence to apply for NHS funding for a study whih established that GCA doesn't only affect eyes - the blood supply to the 8th cranial nerve can also be affected and result in hearing loss!
Very interesting! I've had GCA twice since the start of my PMR journey, and I now suffer from hearing loss!
I had no idea that the drop in my hearing could be linked to the GCA bouts I suffered, but thinking about it, I do wonder if there could be a connection?
Do you have any links to the findings of either the charity's survey, or the NHS one, because if you do I'd like to learn what the findings were, and whether there's anything that can be done to help mitigate my hearing problems.
Link to the original and a patient-friendly translation ...
The primary purpose is to warn doctors not to ignore complaints of ear symptoms in a presenting patient and diagnose more quickly. Too many think it is all about eyes and it isn't.
Wow! Ok, so I now realise that it's good to contribute no matter how small or worthless one thinks one's contribution is, I guess it could mean the world to someone else. Thank you for that. 💕
Absolutely - and the post just above is a case in point. I have just mentioned the ears study which someone hasn't heard of before. I do go on about it at intervals but unless you read all the posts and most of the replies, it is easy to miss something and then it comes as a surprise.
I had chest pain for about the first year. My pain was felt with breathing - inhaling caused pain. Turned out in the end to be caused by misaligned ribs and once I did some exercise the pain went away and has stayed away - now in my sixth year of PMR and hoping to keep my reduction on a steady downward direction - at 6 MG now with no pains or discomfort - blood work staying good with low ESR and CRP.
At the time they did all kinds of diagnostics on my heart and all was normal. Chest Xrays were also fine so they never diagnosed the cause - it was a deep massage therapist that found the rib issue.
Yes, & I was diagnosed with costochondritis last week. Luckily, my symptoms fit it well, but it’s most unpleasant, & the first time it happened, I rushed to take my blood pressure, thinking it could be a heart attack!!
I think it's quite common with PMR and/or Pred (see other posts on the forum). I had chest pain on and off through the 3 years that I was taking Pred for PMR with no definite diagnosis of what it was. I was given exercises by a Physio who thought it might be intercostal muscle strain due to them doing the work of other muscles that were affected by the PMR. The exercises helped a bit and the pain eventually went away with the PMR and the Pred.
Thank you alangg, I'm reassured by the responses I'm getting. My chest pain definitely does follow the same pattern as other pain, and does respond to Preds. I think that my flare has increased the chest pain too.
Thanks Pixix, glad you have a diagnosis now. We do fear the worst at times don't we? I was worried too which is why I posted. I'm glad I did, it looks like it is part of the PMR - the condition that just keeps on giving....
Just a tip - if you want to reply to a specific person, click/tap on the blue reply box immediately under their reply - then they will get a notification to tell them you are "speaking" to them, Otherwise only the people who actively follow a thread and the author are told. Most people only return to a thread after replying if someone then replies to them.
I also experienced chest pain at the onset of PMR and it still comes back when I flare. They thought originally I had costochondritis as it was a very similar pain, just between my breasts and across my ribcage.
I also had chest pain that seemed to depend on the effectiveness my doses of pred. The pain was most severe when I was lying in bed, reading, when even a slight cough or deep breath caused pain, always in the middle and top of my chest. Chest X-rays showed nothing. I was diagnosed with PMR about 6 years ago. I've been totally off pred now for almost 3 months, thanks to monthly infusions Altemra over the last 7 months that allowed me to taper down without flareups. The chest pain has pretty much gone away, returning every-so-often as a very mild pain when I cough.
Hi Golferman, its reassuring to hear this, you could be describing my chest pain. I'd not heard of Altemra, sounds like it has worked wonders for you. Fingers crossed for you.
That's right - I usually put both the brand and the substance name but it was really the spelling I corrected. Most people who are on it are given it as Actemra in the USA and Ro-Actemra in the rest of the world. Only the UK sticks to tocilizumab - and I have got into the habit of calling it Actemra now because if I call it tocilizumab to the nurses here they look at me as if I have 2 heads!!!
Yes I had/have chest pains feel like I am being punched. I also have low Bp when it happens. I have been on Pred for 7 years minus 6 months recently when I was put back on them for a glare. Doesn’t matter the dose of Pred. Had ECG and checked over but they disappear when seeing GP 😊
Thanks Suffererc, sorry that you have suffered for so long. Seems like my chest pain is linked to PMR, so many of you have replied and told me your stories, it is so helpful.
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