Recent GCA diagnosis and now constant left sided chest pain

[Horsewhisper]

Hello everyone, I posted here about my GCA diagnosis about a month ago and received some very helpful advice and guidance. I’m wondering if anyone else has experienced chest pain at the same time as having GCA and I’m looking for some help.

I am currently on 27.5 mg Pred on a slow taper plan from 30 mg Pred. (Only started on 30 mg due to Covid risks.) The chest pain is a constant, dull, “squeezing ache” which radiates from mid left chest up under my collarbone up the left hand side of my neck. I have a hard, painful area going up the side of my neck aswell. The chest pain is worse when lying down, I get occasional palpitations, breathlessness on mild exertion, constant light headedness and feelings of nausea. I have seen the GP a couple of times in the last month about the chest pain and yielded normal ECG and normal bloods including CRP and ESR. She changed my PPI meds which has helped a little bit with reflux style symptoms and I am doing some physio chest exercises to see if that makes a difference, which it hasn’t. I have been referred urgently by the GP to cardiology but currently caught up in confusion as to which clinic is open during the pandemic. More clinic chasing to do next week. The last couple of days I have felt more fatigued than usual and felt generally more unwell, but no raise in temperature.

I woke at 4.30 am this morning with severe chest pain so I took myself off to A&E. Normal ECG, X-ray and bloods. They didn’t want to entertain any further tests/scans or listen to me about my autoimmune conditions that may possibly be causing chest pain as “I wasn’t about to drop dead of a heart attack”. I felt they ushered me out of the door rather quickly leaving my many questions unanswered and told me to speak to my regular Rheumy Nurse, if I thought it was autoimmune related, which I have already done so as she suggested the cardio referral! Feel like I’m going round in circles and not very happy with the worsening pain that doesn’t respond to OTC meds or even Tramadol. Any suggestions gratefully received, thank you for reading.

[Hidden]

Don't want to scare you, but I will. Please ring 999 for an ambulance as you would normally for such left sided pain into the neck etc. Let us know. Xx

[SnazzyD in reply to Hidden]

Do you mean A&E again?

[Hidden in reply to SnazzyD]

Yes if worsening. Better to be safe than sorry. Pain relief minimum if enough to get you to a and e in covid19 situation at 4.30am.

[Horsewhisper in reply to Hidden]

Good idea - I think a few blue lights might get their attention, will keep you posted and thank you

[PMRpro Ambassador]

Bit difficult if A&E said no isn't it!! I have come across heart attacks that didn't have an abnormal ECG but they do tend to have raised blood markers. My suggestion would be to call 999 next time - they do take someone brought by ambo a bit more seriously with chest pain and might not be so dismissive.

Don't know - the gubmint is insistent that the NHS is concerned about cardiac patients who aren't presenting in the current climate but it seems when one with suspicious symptoms turns up they aren't being helped ... Did you tell them you had had an urgent referral to cardiology?

[Horsewhisper in reply to PMRpro]

Yes I did tell them about the cardio referral and was met with a blank stare. I even asked if I could have an ultrasound of my neck or to pop me in the CT scanner just to double check everything and he said “no, I wasn’t having a heart attack and I was to go home.” I was quite surprised at the way I was dealt with as this A&E department thought outside of the box and correctly suspected the GCA a few weeks back. Today, I was initially dealt with a Junior Doctor who kept complaining about how tired he was and at 8 am shift change the Doctor in charge looked like a rabbit in the headlights. The place was deserted - just me and another lady having chest investigations. I also got the feeling I was in the “too difficult” bin, having GCA and UCTD, on a range of meds, already in regular dialogue with Rheumatology and GP, I think they took the easy option for whatever reason and didn’t want to investigate further. So I don’t think I had the usual 5 star service today, that I’ve had from this department in the past 18 years. I take your point about the ambulance - I think I’ll do that next time. Thanks for your help.

[PMRpro Ambassador in reply to Horsewhisper]

It is rough and maybe they have had a hard time - but that isn't an excuse for anyone.

[SheffieldJane in reply to Horsewhisper]

I agree with everybody’s sense of urgency regarding your symptoms and I feel dismayed at the signs of strain and exhaustion in our emergency services.

I did have a drama about a year or so ago. I felt as if I had swallowed a large stone and it was stuck in my chest, I had pain radiating down my neck and jaw. It was so severe ( and had been grumbling for a number of weeks) that my husband called an ambulance. The paramedics took me extremely seriously and did tests and gave a spray, if I recall. They insisted that I go with them to hospital even though the pain was wearing off. A& E was extremely busy and I was literally left on a trolley for hours. This was long before the crisis. Eventually I discharged myself without being seen. On reflection I believe that it was an Oesophageal Spasm. I learned how to offset an attack with sips of cool water in the weeks to come. I also showed no signs of cardiac distress. I believe it was related to my steroid therapy but who knows. I do not regret going in the Ambulance, had it been a heart attack I was in exactly the right place. I think you should go too Paramedics are wonderful.

[Horsewhisper in reply to SheffieldJane]

Ok thanks - I think being taken seriously is reassuring - and to get treatment and assessment on the way in saves time too. Never been in ambulance so that’ll be a first!

[Rose54 in reply to Horsewhisper]

Dont leave it

Last May I was feeling unwell attended A and E one weekend was told everything OK and to see my own GP .

Saw GP who told me to increase stomach meds

3 days later HA and spent 10 days in hospital

Call 999 Paramedics said ECG was fine but as my symptoms had not improved thay would take me in .

Hope all is OK

[Devoid]

Hi have LVV and have experienced left side chest, arm and neck pain , ecg normal was booked for a heart scan that was cancelled just before lockdown and then not rescheduled. Definitely some improvement on reducing dose of pred but still experiencing just not so frequently, find rest helps even though it’s not bought on by exertion