I was diagnosed with GCA in March this year. Apart from the usual symptoms I have a symptom which I first noticed in January and I wonder if anyone else has experienced anything similar. It is very difficult to describe but I will do my best.
I was walking back home from having coffee with friends. I was very tired, and it was very cold so maybe I was rushing a bit. It felt a bit like I had acid rising through my chest, but the whole of the upper chest area not just the middle into my throat and around my jaw. There was no reflux and my stomach did not feel acid. It felt difficult to breathe, as if I could not take in any air beyond the level of my breastbone. An ache spread across my shoulders and into my elbows and wrists. The pain in my elbows was quite bad. There was no pain in my chest. Once I was home and sat down it passed quickly.
This happened every time I walked more than a few yards or climbed stairs. When I am tired, I get the same sensation in my jaw and my face feels numb and tingles a bit.
I have been on 30mg pred for 6 weeks and since last week I have been able to walk much further and climb 2 flights of stairs without stopping. I also just feel better. The jaw and face sensation still happen when I am tired though.
At my OH insistence I saw a GP a couple of weeks ago. The GP said the symptoms were not typical of angina but felt he ought to refer me to cardiology anyway. (The hospital phoned yesterday and the earliest appointment they can offer is in November so it is a while before I can rule this out completely) He thought it could possibly be a symptom of GCA but he obviously didn’t really know much about it.
As I mentioned, this started in January at the same time as my jaw claudication and temple pains started and as it seems to have responded to pred I wonder if it is just coincidence or it could be a lesser known symptom of GCA?
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Hmm, well it could be some obscure muscle spasmy or neuro thing, but looking for a cardiovascular explanation would be prudent which your GP is doing. I don’t know whether one can get like a global arterial spasm if you have inflammation in the larger arteries or you had cramp in all your respiratory muscles due to the same thing. It may have been angina and/or a minor version of a major cardiac event. I once had a lady patient for whom I was doing a dressing and she stopped yakking as her finger tips went blue. A few minutes later she recovered and went back to her story. Intrigued I did an ECG and took a troponin blood test. The GP looked at the ECG (I was rubbish at that) and said heart attack so off she went in an ambulance looking very confused about the fuss because she only come in for her wound. It is know now that some, especially women, can have atypically presenting cardiac events.
Did your GP do an ECG? The conditions were certainly ripe for angina; cold air and extra cardio load. I’d say if it happens again dial 999 and say chest pain, because call it what you like, acid or other, it was chest pain. I’d say you need more enquiry into the state of your larger arteries and cardiac function sooner rather than later and perhaps another trip to see another GP might be an idea.
Thanks for this SnazzyD. I did have an ECG which was fine. I have not seen my usual GP for a while as my last two visits were seen as urgent and I saw the duty doctor. I think I possibly have not been taking these symptoms seriously enough so have made an appointment with my usual GP but the soonest available is 30th May. I am back at the eye clinic next week and this doctor says he has had a lot of experience with GCA patient in Leeds. So I will try and talk to him about it.
It sounds extremely like what could happen if you have large vessel vasculitis, your rheumy should be up to speed and an emergency referral to cardiology is more appropriate than a routine one.
My nurse daughter is standing here screaming NO, NO, NO!!! Chest pain is ALWAYS cardiac until proven otherwise. Have you had an ECG? Blood tests? Would your GP accept a November referral for a query MI? Women present with totally different symptoms to men - so s/he cannot say "not typical".
Looking back, I have to say your rheumatology team doesn't sound particularly up to speed either. So other than making a fuss at the GP, showing them this paper:
and asking for a referral to someone with experience in less common forms of vasculitis, Leeds would probably be a very good idea and Prof Ann Morgan would be my choice:
Thanks PMRpro. Last week was the first time I told a doctor about these symptoms! I just kept forgetting and as I say they have improved greatly on the higher doses of pred. I am back at the eye clinic next week and will see a doctor who says he has experience of GCA patients from when he worked in Leeds. Trouble is he talks very fast and doesn't seem to listen much but the letter he sent me was quite an accurate account of the things I said!
I am not sure if I can choose to go to Leeds. I need to be a National Health patient so I think I must go where I am sent?! I will see my own GP (soonest appointment 30th May) and see if I can inject some urgency into my situation. Thank you for the links. I will print them and take them with me.
Have you recovered from your ordeal? I hope you are feeling better. Your OH as well. You both have had quite a time of it.
I had GCA (no PMR) and I can relate to this as when I first started on the 'journey no one ever wishes to undertake' I found if I did too much, I was wiped out quickly.
GCA, is the largest member of the Vasculitis family and can also be present everywhere in your system...........that is why it is difficult to define apart from the most common symptoms.
I was sent to cardiology for a look at aorta and pulmonary arteries within days, my GP and Rheumy insisted as my GP called my Rheumy while I was seeing him. Luckily for me no vasculitis or damage. Fatigue and told to take it easy and not push.
I am pleased your GP has referred you to the cardiology dept, but wonder if he told them you had GCA, ask him the question November is too far away.
I did have very good GP and Rheumy who saw me through those 5 years. Now into 8th year remission.
PMRpro and SnazzyD have said it all................. with GCA you take no chances ..........camp on the GP doors today, or 999 the minute the pain arrives..........
Thanks jinasc. I will see my GP and see what he comes up with. Being wiped out quickly is something I can relate to! It is good that you had proper support but in fairness I haven't really alerted anyone to this. I will start doing so now.
8th year of remission sound wonderful. Are you well or do you have other health problems to contend with?
Remember I am 12 years older than I was when GCA came along I was 69.
Ageing brings along unwanted friends to most of us as the body wears out. I try to make them friends and manage them, fighting is a waste of time and effort............you just don't win that way..............go with the flow and learn to march to a different drummer is my mantra.
I have met and made some wonderful friends because of GCA, people I would never have known and some of them have become very good friends.
My Mam had both PMR & GCA. the GCA because she was not diagnosed quickly enough with PMR.............however that was 21 years before GCA arrived at my door.
I am now less active and have OA, A/F and Arrythmia (we have been talking about this on another thread). I am less active but still have a reasonable life and laughter, and still get angry etc. I look after my 89 year old Cousin who has dementia and will be 90 this Sept and is fit. However I have decided I would rather have all my aches and pains now that I have encountered dementia closely.
Oh dear I have written an too much .............sorry
I was also dx in March with GCA. Do not understand how you could possibly be on 30mg for last 6 wks? Is that where you started? GCA interferes with oxygen/blood flow so you can expect problems, I think you need a higher dose. I started March 22 on 50 mg for 4 wks. Rheumy said after 4 wks and since CRP & ESR were pretty much normal (down from 110 & 78) he wanted me to reduce 5mg every 10 days. first reduction was ok, iffy on down to 40 and 3 days later had to go back up when blood tests are rising and symptoms returning. During that time I also thought I had heart problems, vascular surgeon who did the GCA biopsy referred me to cardiac, had a Holter monitor. By then had been on pred for several wks, and feeling not so anxious/stressed. So they said it was pretty normal, highest rate in the 24 hr period was 120, average 61, and lowest when sleeping 37. I asked if that was a bit low and cardiologist said no. When I was in nursing under 60 was considered slow, and possible pacemaker candidate. So things have really changed. Hope you get this figured out, but my guess is the GCA is nowhere near controlled, and plain and simple your arteries get plugged up. leading to all kinds of complications
I have had PMR for nearly two years (at this time on 6.5 pred) and earlier this year I developed bad headaches in my temple area and jaw claudication but when in April I developed sight disturbance as well I phoned my GP who sent me straight to the eye department at the hospital. The surgeon there diagnosed GCA and prescribed 60mg pred. He did a temporal biopsy a couple of days later.
I returned to the hospital a week later and saw the original doctor’s registrar who told me the biopsy was negative and I didn’t have GCA. They made me an appointment with another eye specialist (who had more experience in GCA but I but didn’t know this at the time) so I don’t think he could have been too certain. He told me to reduce 10mg every 10 days until I saw this other doctor.
I decided that if I didn’t have GCA I could reduce much quicker than that, to 10mg anyway, but when I got below 30mg the symptoms returned so I went back to 30mg until I saw this doctor.
This doctor is certain I do have GCA and a negative biopsy can be wrong for all sorts of reasons, not least because I have been on steroids for nearly 2 years. Apart from that there were queries in the results of my biopsy and he was asking to have it re-examined. I see him next Friday so will find out what happens.
He told me to stay on 30mg pred for a month and then go down to 25mg which I did 2 weeks ago. For the last week my symptoms have been creeping back, so I think you are right, I need more pred. Probably if I had stayed on 60mg for a month or so in the first place the inflammation may have been under control. I will not increase of my own accord as the appointment is now quite close. He does seem to know something about GCA but he is an eye specialist, so I don’t know if his knowledge extends beyond this area.
I would rather be in the hands of the people here!!!!
reading about negative biopsies.....some hospitals that "specialize" in these autoimmune disorders, dissect the sample biopsy material up to 300 times to get a positive. I think mine did 2-3! Has more to do with the lab and so many are dx by symptoms. I had classic headaches, jaw claudication, sore scalp etc My CRP was 110, and ESR 78. Both those values went to normal in 2 wks of pred @50mg. They are up a bit as I am trying to reduce. You will have different values for sure, already being on pred. My eye specialist thru this whole thing has monitored my eye health, and though I had dry eye before. there has (s0 far) been no sign of GCA in the retinal area. But that is no indication it is not elsewhere, because we know it is. Good luck, hope you find the right answers very soon. Joan
Sorry for the long delay. I have just had my first real experience of deathly fatigue!! I am sure it was pred withdrawal as I reduced from 30mg to 25mg just over 2 weeks ago. I realised yesterday that I felt better and could engage in life again! I see the doctor again on Friday so I will find out if the re-examining of my biopsy has produced a different result. It doesn't matter too much but I would feel better about taking all this pred if I had some clinical back up to my symptoms!
Pleased to hear you are doing well and are being closely monitored. Kate
Thanks for this Emerlad. I am seeing an eye doctor on Friday who is supposed to be experienced in GCA so will do my best to describe these symptoms to him and see what he thinks. If they are symptoms of PMR/GCA it would be helpful for us to know. Also avoid unnecessary investigations.
Hi, I have had PMR for about 2 and a half years. In the last 6-8 weeks I have had a similar symptom to yours but not quite the same... I get a very sore feeling in my throat/chest like really bad heartburn, then a pain goes across my shoulders and down both arms to my hands, really a lot of pain for a few minutes and then it subsides....sometimes I get a pain in my jaw but not always....it was worse in the beginning but now not as bad.... but happens quite often but not every day...but often when I get out of the car! I have also in the last week or so been suffering with light headedness which doesn't want to go away... I also have a problem with one eye that I have had for a year or more which I had checked by an ophthalmologist and he said was ok apart from 'floaters' which is normal for my age (65) I saw my doctor last week and mentioned all this...he has me booked in for an ECG and blood pressure check next week.... I don't have headaches or pain in my temples.... so could this be GCA? The doctor didn't mention GCA.... I am taking Prednisolone down to 13mg at the moment and omeprazole 20mg daily.... oh yes and I have osteoporosis! Taking Aledronic acid and calcium supplement for this... I rattle pretty well! I felt fine and was doing lots of swimming in the summer until mid August when all this started and now I feel so tired all the time....
I am still at the eye clinic rather than the rheumatologist but I don't really think I had/have GCA.
I take Pregabalin for neurological pain from my spine and my GP thinks that is what has made my double vision worse. The headaches could have been anything - the only unexplained was the jaw claudification. I haven't had that for ages and I am now down to 9mg pred.
My GP is certain the other symptoms are angina and I have an appointment with the cardiac clinic in November. In the meantime my GP has prescribed Amlopidine and my ability to walk further is much improved!!
Maybe you should mention your concern about GCA to your doctor.
The doctor at the eye clinic told me to look out for any tiny blind spots (I don't think he intended the pun) and I do this frequently. I do one eye at a time and look all around the room. I have no spots of lack of vision at all so I am reassured. If you have one you must of course go straight to A&E.
Sorry about the tiredness, you will know from reading the posts that this affects us all. Family and friends find this hard to understand as well. They understand pain, but well "We all get tired, don't we''
I take gastric resistant pred as I won't take Omeprazole and between that and the angina medication the symptoms I had back in April have all but disappeared.
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