Visit to Rheumatologist : When I was admitted to... - PMRGCAuk

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Visit to Rheumatologist

Janann25 profile image
63 Replies

When I was admitted to hospital before Christmas with a suspected heart attack, one of my symptoms was a tightness in the chest, particularly in the area of the diaphragm. As my angiogram was - thankfully - clear, the consultant felt the tightness could possibly be related to PMR. So, yesterday I had my appointment with the rheumatologist who I’ve seen in the past.

Apart from the usual “why are you still on Pred after four and a half years when PMR only lasts two years!!!” she gave me a brief examination which seemed not to show any problems until she pressed on the actual area where I get the tightness. It felt really uncomfortable and she commented that it could be something caused by the use of Pred. Unfortunately she has a knack of telling you something, then changing the subject and then, before you know it, you’re out of the door.

So, I’m wondering whether anyone else has experienced this. I’ve had a hiatus hernia for many years, for which I take 30mg Pantoprazole, and I also take Greek yoghurt before taking my enteric coated Pred. I obviously don’t want to ignore this symptom if it’s gastric related but. before I bother my GP, I just wonder whether this could related to PMR.

Thank you for any advice/comment.

63 Replies
PMRpro profile image
PMRproAmbassador

Can't really help - but WHY is there this cohort of rheumies with this fixation of "PMR lasts 2 years"? Though I suppose you answer the question too - they don't listen and take notice ...

cycli profile image
cycli in reply to PMRpro

I am thinking there are sadly a cohort of rheumatologists who are fixated on their theories. They really don't consider the patient capable of interpreting symptoms. They won't change and in my opinion are a dangerto the patient. They are "overworked" with too many patients so can just about manage the initial consultation but unable to follow up and monitor progress.

Viv54 profile image
Viv54 in reply to PMRpro

I really dont have a clue ! My visit with the New Rheumatologist, was i disaster this time ! So bad that i lost my temper ! and told him what for , just had enough of being brushed aside . He said i will see you in 6 months ! I told him not if i see you first !! The arrogance of the man. Anyway, i have told my GP not to send me back to him as its a waste of everyones time. Dont want to waste NHS funds !

tangocharlie profile image
tangocharlie in reply to Viv54

I once put in an official complaint about a rheumatologist, and was told 'I wasn't the first'. I got allocated a new rheumatologist.

Viv54 profile image
Viv54 in reply to tangocharlie

Yes, I should have I was so upset and frustrated with his behaviour, I just wanted to get out of there, needless to say I have made it clear to my GP I will not see him again.Some people should not be in their chosen profession , if they feel the patients are a burden !

tangocharlie profile image
tangocharlie in reply to Viv54

It's not too late to put in a complaint now you've had a chance to reflect, it's the only way things can get changed. How doctors deal with patients and patient feedback counts as part of their appraisals.

Karenjaninaz profile image
Karenjaninaz in reply to Viv54

I had a similar experience with a dermatologist. After waiting two hours, in one of those skimpy gowns, in a cold waiting room, she tells me I didn’t have a proper blood test which I indeed did have. I whipped out the report because I kept a copy in my purse. I ended up telling her to her face that she was blowing me off and never went back.

cycli profile image
cycli

sounds very like my experience last week I have gca and pmr. Had a flare recently and now back up to 40 g pred. Under control I think. I spent 14 hrs in A&E last Wed/Thursday. After a lot of tests and thought suspected heart attack and possible clot it was diagnosed as a reflux reaction to meds and the pain was affecting my BP and heart rate. It was the stomach they think and Lansoprasole increased to 30mg daily and the pain has gone. I was concerned and the paramedics were brilliant but couldn't explain the pain I was experiencing and breathing was getting harder. So far so good but no thanks to any rheumatologist who wouldn't have any notion of the problem. Several blood tests, ECG's , x rays to check lung infection and scan to check clots were the correct process to determine the diagnosis not rheumy speculation.

Janann25 profile image
Janann25 in reply to cycli

I can definitely empathise with you - the cardiologist wants me referred to arrhythmia clinic but - and wait for it! - because they have NO idea when there will be an appointment, I feel the rheumatology appointment was almost “to keep me quiet”. Not funny when the heart is involved😡. I hope you continue to feel better.

PMRpro profile image
PMRproAmbassador in reply to Janann25

You have evidence of an arrythmia? Are you at least on anticoagulant therapy until they can investigate properly?

Janann25 profile image
Janann25 in reply to PMRpro

I could write a book!! No, I’m not on any anticoagulants because the irregular heartbeats only happen periodically - I just call them palpitations. The hospital stopped all treatments - apart from those for high BP once my angiogram showed the arteries as clear. There doesn’t seem to be any urgency but I’ll be pleased to get it sorted.

PMRpro profile image
PMRproAmbassador in reply to Janann25

I will say - they are absolutely on top of potential arrythmias here. Even the pharmacy had a big ad in the window a bit back warning people about the risks. And I get such a lecture if they think I'm missing a tablet! They care more about the anticoagulant than anything else - including the anti-arrythmic.

Janann25 profile image
Janann25 in reply to PMRpro

That’s good to hear.

Broseley profile image
Broseley in reply to Janann25

I am on anticoagulents after wearing a heart monitor for a week which had a 2 second incident "suspicious of atrial fibrillation". A few years later I asked for a repeat test as I don't really want to take anticoags with all the issues they entail. No signs of anything were found, but cardiologist instructed me to stay on the anticoags anyway! I'm in the UK. Where are you?

Janann25 profile image
Janann25 in reply to Broseley

In the UK also. The A&E department have been great but, as the doctor there explained to me, they can only deal with the immediate problem and then refer the patient to the appropriate doctor/specialist. Unfortunately, referrals appear to be many months away.

Broseley profile image
Broseley in reply to Janann25

I guess that's the covid effect as I didn't have to wait very long however the results took 8 weeks! Try asking your GP if she/he can push it along quicker.

RoadTrip profile image
RoadTrip in reply to cycli

Just read this post. Sorry for your experience, I had similar on high dose pred, hubby called ambulance as pains in chest, jaw arms etc. not heart attack but bad indigestion due to pred.

I have had the beginnings of a number of similar experiences since and find downing 1-2 litres of water, immediately stops the pain, as recommended to myself by someone on the site ( sorry can’t remember who).

Obviously if pain continues it may actually be a heart attack!

Janann25 profile image
Janann25 in reply to RoadTrip

I’m still waiting to have 24 hour ECG tape and also BP tape!! Doesn’t help with symptoms when I still don’t know what exactly is causing them ☹️

cycli profile image
cycli in reply to Janann25

It's the waiting to know which is the worst. Hope they come up with a diagnosis soon.

RoadTrip profile image
RoadTrip in reply to Janann25

Hope you get your tests soon, always worrying waiting for tests.

cycli profile image
cycli in reply to RoadTrip

thanks. will try next time if it happens again. All ok for now . Started furosemide to clear fluid in legs. yet another variable. It would be nice if this condition just stayed the same so I could work out how to react. Every day brings new joys. :-)

RoadTrip profile image
RoadTrip in reply to cycli

Hope the new meds work and you manage to stabilise the side effects, it took me a while. However, I had been on an even keel for some time, then had minor flare which have struggled with, such is things.

SnazzyD profile image
SnazzyD

Well that sounds like a foray you could have done without. Just out of interest, during my journey with GCA and any other major illness I’ve had to keep up with various physical issues that my body becomes set into. One of the usual areas is in the region of the diaphragm/bottom ribs. This has been noted by osteopaths, chiropractors, Bowen therapist and latterly my excellent physio. Once that bit tightens up it has a subtle knock-on effect with breathing, chest comfort and musculoskeletal function, including chest and shoulders. The breathing won’t feel like a problem for me but once they’ve done their bit, I realise how much freer it feels to take a deep breath even though if anyone had asked me if I had problems I’d have said no. Sometimes areas can feel really quite tender to press and it can feel organ like or even a cracked rib. Also, they can spot problems missed by docs because they are coming at it from a completely different angle. It is this kind of physical dysfunction where medicine really struggles and it’s not helped in my opinion, when some of it’s practitioners feel they have to have an answer any answer to everything and if all else fails, blame Pred or blame the patient. Also, sometimes conditions are missed because it’s too early to tell. Chronic illness doesn’t come without its costs and holistically it’s up to us to sort that bit out and be a better detective than the one that sees Pred walking past a crime scene after an honest day’s work and then charges it with murder.

Anyway, where was the painful bit exactly? Was it over a soft area or a hard area or is it diffuse over a general area?

PMRpro profile image
PMRproAmbassador in reply to SnazzyD

I have spots on the bottom rib on both sides that sometimes feel as if they are crunching on something - I THINK it is muscular in origin. But who knows.

Janann25 profile image
Janann25 in reply to SnazzyD

ForThank you so much for sharing your own experiences. Strangely enough, my breathing hasn’t been so good of late but, because having been diagnosed with Mild COPD five years ago, I’d assumed it was that. But, thinking about it, the increased breathing issues only started about the time this pain starts. Very interesting. But, because our health service doesn’t have Tudor “joined-up thinking”, I feel I’m not going to get any answers any time soon.

I forgot to answer your question about the location of the pain - it is usually generalised in the area of where I THINK my diaphragm is, but the area which hurt during the rheumatologist’s examination was in one spot, I think on the diaphragm at the front. Sorry, not very good at describing parts of the body!!

Just noticed another necessary edit - where on earth did “Tudor “joined-up thinking” come from?!!

SnazzyD profile image
SnazzyD in reply to Janann25

COPD won’t help and respiratory conditions can set up all sort of unhelpful ways of holding one’s torso and a slow change or decline can be a devil to spot. Also, breathing habits become altered so you need someone to keep reminding you where the benchmark is, especially with chronic lung conditions. Out of interest, if you poke it, is the area soft and squidgy or bone (ribs) or where the two join? If it’s in the middle where there’s no bone, I’d suspect something in the gastric region.

cycli profile image
cycli in reply to SnazzyD

that's exactlythe spot snazzy. Pain started just below shoulder bledes and I thought GCA/PMR muscle, then developed and seemed to move central and forward .Heart raced and BP went up and breathing was tight. When I bent forward pain increased that's why I went to A&E. Paramedics said it was a different cause so gave me 1000mg paracetamol which when I arrived at hosp. was taking effect so definitely not pmr. I took 15mg pred 2hrs before paramedics arrived and they helped the head pain. Beta blockers, heart rate and blood thinners complicated the diagnosis but eventually yhey seem to have it right. Gastric issues. All seems ok. at the moment. We live and learn. Sounds just like Janann's issue

Janann25 profile image
Janann25 in reply to cycli

It most definitely sounds the same - it will be interesting to see what happens.

cycli profile image
cycli in reply to Janann25

it's complicated trying to work out what is happening. We need to think outside of the box but with all the variables we need help. It requires those helping us to believe we know what we are talking about. It also needs us to be as accurate as possible so we give the right leads. Any specialist with fixed ideas and a god complex is not going to help but make it worse.

Karenjaninaz profile image
Karenjaninaz in reply to cycli

Beta blockers can interfere with breathing by causing bronchconstriction. So would hyperventilation. These are contraindicated with asthma and copd.

cycli profile image
cycli in reply to Karenjaninaz

many thanks for the input. I'll raise this with GP and heart consultant I'm seeing next week.

Janann25 profile image
Janann25 in reply to SnazzyD

Sorry, just noticed your other question about the area. It’s in the middle where it’s definitely soft and squidgy following lockdown😉

karegodd profile image
karegodd in reply to SnazzyD

Wow you just hit the nail on the head with that one. I’ve been dealing with the exact symptoms you described of soreness in the diaphragm lower rib cage and in my case wrapping around to the lower thoracic spine. Excruciating pain at times and effecting function greatly. Bad bout of diverticulitis laid me flat with the side effects of the antibiotics and infection and the forced rest helped the musculoskeletal pain tremendously that with meditation and deep breathing. Thanks for sharing. Medical doctors made me think it was trivial but my body said otherwise 😉

SheffieldJane profile image
SheffieldJane in reply to SnazzyD

Pred walking past a crime scene and being charged with murder made me laugh. Sometimes though, I think it is the crime scene, thankful for it as I am. 😉

Brilliant insights about the physical disfunction by the way - really helpfully thought provoking. I almost daren’t touch the diaphragm area because it feels all wrong.

Mazwendy profile image
Mazwendy

Hi there not sure if this will help you.I am on preds for PMR and back in 2017 was on 60mgs for suspected GCA after tapering down I began to get pain in the middle of my chest going through to my back extremely painful called 999 and was taken to hospital had tests and that injection that's shows if you've had a heart attack which was slightly elevated but they sent me home.

A few days later was just stood in garden and got the pains again but worse called 999 again off to hospital and was given GTM spray which did get rid of the pain. Was told I had ascending angina and sent home and was told I would be contacted for a angiogram.

Had this and the consultant said I had arteries like drainpipes and I wouldn't have any problems with my heart.

But the consultant

did say that I had an hiatus hernia and I have had the pain again and I took liquid gaviscon which gets rid of it so I kinda think that sometimes I may eat something that caused this.

I take 30mgs of lansprazole daily, the consultant told me that steroids can do all sorts of things and he was sure it was this as well and I do believe him as I am still on 11.5mgs and I have many problems like fluid retention etc which does get better as I come down on the steroids.

Sos this is long but hope it helps.

Marilyn

Janann25 profile image
Janann25 in reply to Mazwendy

Gosh, that sound so similar to me. I don’t get acid reflux but, the more I think about it, the more I realise that I sometimes get a tight feeling just where I imagine the hiatus hernia could be. I’ll try the liquid gaviscon when that happens - won’t do me any harm. Thank you.

SheffieldJane profile image
SheffieldJane

You need to have this explained properly to you. What an unpleasant ordeal to go through, especially at Christmas. I have had a lot of digestive upset due to Prednisalone in recent years. My PMR was diagnosed 6 years ago then it was joined by GCA/LVV about 18 months ago. I went through a phase of very unpleasant, painful and frightening oesophageal spasms. During the first one my husband called an ambulance and I was treated for a suspected cardiac event initially. I can only describe it as if I had swallowed a stone and it was stuck in my upper chest. This symptom was accompanied by jaw pain. I occasionally get the ghost of those symptoms especially if I am trying to swallow large tablets or I don’t swallow food mindfully enough. It is as if my oesophagus is swollen and tender. It really helps that I am able to keep calm and take sips of cold water. Ordinary over the counter indigestion remedies work quickly. I feel as if my whole digestive system has been damaged/ become sensitised due to long term steroid use. I don’t know if this chimes with your experience?

RoadTrip profile image
RoadTrip in reply to SheffieldJane

I get the same, not pleasant especially if I have any spicy food which I can no longer eat since taking pred. 1-2 litres of water usually stops it in its tracks.

Janann25 profile image
Janann25

Certainly some of it does, especially your comments about long term use of Pred, which could have been exacerbated by the hiatus hernia which I’ve had for many years. When it next happens - which it probably will! - I’ll try gaviscon as recommended by Mazwendy.

Bridge31 profile image
Bridge31

Exactly the same happened to me 2 years ago just before Christmas . I was in hospital for 6 days because they were so busy with angiograms. When I finally had the angiogram my arteries were completely clear. I was sent home on Christmas Eve with various heart meds all of which I’ve stopped now. I knew it wasn’t a minor heart attack but in the absence of any other diagnosis I’m stuck with it on my records. I still get the tightness in my chest occasionally but I no longer worry about it and it goes away. Whether it’s the Pred or the PMR or unrelated indigestion is another unanswered question ( like many other questions with this illness when we are not sure what is causing what. )

Janann25 profile image
Janann25 in reply to Bridge31

It’s the not knowing what’s happening which is the worst thing. I’ve just had a very disturbed night with loud - but not particularly fast heartbeats - accompanied by tightness in my chest so feel exhausted this morning. But, because all tests regarding my heart are clear, the doctors just put it down to stress. Maybe they’re right but it doesn’t help.

k-mac profile image
k-mac in reply to Janann25

I have taken Pred for over 7 years and am down to 6mgs... with some pain and have experienced irregular and ‘loud’ heart beats for over two years which do show up on bp monitor but which docs don’t think important. They start in the afternoon and definitely cause changes to breathing. They do stop me sleeping and I take a zopiclone 3.75 . Having an ecg today . I am finding the stress response very unpredictable now and wonder if it’s years of Pred ? (Especially driving) I suggested this to doc . who certainly put me in my place 🙈😀hope you are able to rest 🌈

Janann25 profile image
Janann25 in reply to k-mac

Please let me know how you get on with ECG. Hope all is well.

k-mac profile image
k-mac in reply to Janann25

Thank you. I have an appt. with a GP Monday to discuss (one who tends to maintain a sphinx like silence!) Pain flaring badly .Rheumie said not PMR in May - something he referred to only as Sero Negative! (but he said not PMR before with disastrous results🙄)so have after nearly 8 years, decided to contact Dr Rod Hughes hoping for a joined up analysis and maybe a realistic assessment of what to expect 💚🌈🤷‍♂️

Bridge31 profile image
Bridge31

How much Pred are you currently taking ? I’m on 6.5 and sometimes get the irregular heartbeat or palpitations but we don’t look ill do we ? 🤷‍♀️🤷‍♀️🤷‍♀️

Janann25 profile image
Janann25 in reply to Bridge31

I’m currently on 7mg, hoping to start reducing - very slowly - to 6.5 next week. It would just be so helpful if we could get an explanation. I would just love to be able to catch up on my sleep - I don’t need to be up early today but sleep just won’t come😞

Bridge31 profile image
Bridge31 in reply to Janann25

We are exactly the same then with the Pred. I did get down to 3.5 but simply couldn’t cope so went back up. I’m starting the taper to 6.5 again this week after being on 7 for 3 months.I don’t sleep too badly except the nights when the hot sweats take over. There is no rhyme or reason to those either. I occasionally take half a 3.75 Zopiclone sleeping tablet if I’m desperate for sleep. I don’t have any ill effects from them.

Looby60 profile image
Looby60

Same thing happened to me too . I was admitted before Christmas with suspected heart attack .

All tests were clear .

Consultant said it was a reflux , gastric flare . Blamed it on steroids .

Fortunately they let me out on Christmas Eve .

Janann25 profile image
Janann25 in reply to Looby60

This illness and medication has a lot to answer for.

Uglow profile image
Uglow

Hi I had extremely bad pain in middle of chest thought it was costrochronditis but Gp said no. He diagnosed GERD google it! I took large amounts of gaviscon 2 omeprozol and oxycodone for a week and thankfully it’s under control. I’m not taking omeprozol or oxycodone now just gaviscon. But it was soooo painful. I’m hope I don’t see a return. I did think it was my heart.

Janann25 profile image
Janann25 in reply to Uglow

That’s so interesting and I’ll definitely investigate. I’ll tell you something though, this PMR is the illness which definitely keeps on giving! My list of associated problems is growing and growing😉

Uglow profile image
Uglow in reply to Janann25

Iv had cancer chemo and this is treatment wise just as challenging. It’s stolen parts of my life but I’ll go down fighting. Well on a good day. The others I might just cry😂😂 I wish you strength to overcome this horrible disease. We shall overcome. Day by day. Xxx

Viv54 profile image
Viv54

Im sorry to hear this, you seem in the same boat as me , its scary when your brushed aside. Maybe best to go and have a chat with your Dr. At least i have a kind one ! Best wishes Viv🌷

Avadip12 profile image
Avadip12

Yes I had very painful chest and arm deltoid area. My GP sent me for an ECG that day. It was normal. Conclusion PMR , the end . No follow up carry on trying to reduce. Back to on your own again .

cycli profile image
cycli in reply to Avadip12

that's it precisely for the most part. They don't have an answer so pass us off and then expect us to just carry on without a resource, but they still don't think we are knowledgeable enough to tell them when we are in trouble or know what we are talking about. That's my rheumies current status but at least my GP listens..

Janann25 profile image
Janann25 in reply to cycli

I know my GP would listen - if I could only get an appointment with her!

cycli profile image
cycli in reply to Janann25

keep trying, it's worth it. I'm thinking that I am very fortunate in my GP and the practice in general. Good pharmacy and instant service with head honhco ringing me to discuss any new medication or need to increase/decrease.

in reply to Avadip12

I had a good experience over the years with my rheumatologist. We had some lively discussions. during our face to face visits. I could also contact her via a patient portal. I apologized whenever I messaged her but she said she didn't mind my messages because my messages were brief. Her replies were cryptic and subject to interpretation. I agree with cycli because the doctors don't really have an answer for an exact best way to manage our conditions.

For a condition that doesn't have many treatment options things tend to get complicated rather quickly after that. Taking pred is straight forward enough in the beginning. It's that "getting off" part of pred that gets complex.

Nightingales profile image
Nightingales

Rib pain has always been one of my worse symptoms. I had many investigations over the course of my six years of PMR, first it was costochondritis, then heart investigations, then a neuroma caused by gallbladder surgery, then a stomach polyp, then GERD. No treatment worked until a pain dr did nerve blocks along my thoracic spine and steroid injections in the particularly painful areas. Finally relief, he explained that the thoracic nerves serve the ribs, breasts, other chest areas and I have degenerative disease of the spine. The injections aren’t a permanent solution of course but blessed relief for a while.

Janann25 profile image
Janann25 in reply to Nightingales

So pleased you have eventually got some relief. Enjoy it while you can.

PMRpro profile image
PMRproAmbassador in reply to Nightingales

And of course - if you have tight muscles, as in myofascial pain syndrome for example, they can also pinch the same nerves. If x-rays show nothing - this is always worth considering.

Barbaracole profile image
Barbaracole

Hello there I definately have this ,plus raised green veins on my arms occasionally . I have put it down to steriods but have already planned to tell my gp soon as have had 5 similar incidents last year put it down to stress or pred .

tangocharlie profile image
tangocharlie

When I flare or my PMR isn't under control one of the first things I notice is a tight band of inflammation going around my upper body, chest around the breastbone, shoulders and upper back between the shoulder blades. It's been fully investigated over the years, heart and lung tests etc and everything comes back clear, so we assume it is inflammation from PMR, but as we know steroids 'work on all sorts of things'. I was interested to hear the other day that many people with long Covid complain of a similar things and now they have invented a new test where the patient inhales xenon gas before the scan, and this reveals inflammation that doesn't show up on other scans. I haven't had Covid but am interested in this new development

bbc.co.uk/news/health-60154398

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