Chest pain

[Soinoi]

Hi all, I'm 52 and recently diagnosed with Sjorgen's syndrome and possible PMR... shoulder, leg & hip pain. I was put on 15mg of prednisolone for four weeks and just under a week ago reduced to 12.5mg. Feeling pretty rough and tired as a result and also get chest pain... sometimes a dull ache centre of the chest and sometimes stabbing pains. I have had it checked and take a double dose of Lansoprazole as I was getting awful indigestion; but I just wanted to ask if anyone else gets chest pain as a result of their PMR. It is always the symptom that causes me the most anxiety despite having a chest xray and ecg. Grateful for any responses.

[SnazzyD]

Hello, is there a pattern to when you get the pain. For example, time of day, type of activity, time from taking Pred, time from eating. Does anything help it or make it worse? How do you feel generally when you get it, apart from anxious?

[Soinoi in reply to SnazzyD]

Thank you for your questions. I haven't noticed a particular pattern. It predates taking prednisolone. I think since prednisolone it's hard to distinguish chest pain from indigestion. It is possibly worse with stress and my anxiety around it. It isn't triggered by activity and usually lasts a couple of days and then disappears for a while. Rest helps I think. Sometimes it's a lone symptom but today I also feel flushed and tired which I guess could be related to prednisone.

[SnazzyD in reply to Soinoi]

I found that with every dose drop I would get withdrawal symptoms starting somewhere between day 1 & 4 after the drop that lasted a few days to a week. This included any old niggle or weak spot giving me grief. Sometimes I would feel so fluey and tired I would spend some of the day in bed.

[Soinoi in reply to SnazzyD]

I did wonder if it was a reaction to reducing the prednisolone. I am just at the beginning of my prednisolone journey so I really appreciate you responding and sharing your own experiences. Yes, it was a day spent mainly in bed for me! A bit of a knock back but, hopefully, short-lived.

[SnazzyD in reply to Soinoi]

Once you have had Pred for some months, you get used to the patterns and can work out generally if it is withdrawal or not.

[SheffieldJane]

Is it around your ribs? Costochondritis can join in with PMR. I have had a couple of bouts of it. It is inflammation of the tendons that hold the ribs. It makes wearing a bra painful and is pretty unpleasant. Paracetamol seems to help. Mine lasts a few weeks.

[Soinoi in reply to SheffieldJane]

Hi, thanks for your reply. Yes, I agree about it being paiinful to wear a bra... a ring of pain around where the bra lies. I had thought indigestion but costochonritis might make more sense it light of the fact that I had reduced steroids about 5 days earlier but kept lansoprazole the same. I will try paracetamol and see if it eases.

[Chrisellie]

Be vigilant. If it continues get medical people to check for large vessel vasculitis just in case.

[Whitecliff]

Hi Sjogrens is a systemic disease and much more than dryness. Also, it is not unusual to have Sjogrens and have other autoimmune conditions that have many symptoms. I would ask your rheumatologist, and if you don’t have one, ask your GP to refer you to one, (preferably one that specialises in Sjogrens and connective tissue disease rather than Arthritis) as they should be able to help.

[Soinoi in reply to Whitecliff]

I am under Rheumatology but they were a little dismissive of Sjorgen's and said 'it's a fairly benign condition and we just treat symptoms' ... eye drops etc. I am on prednisolone for likely pmr... which I think is right because symptoms match and I have responded to steroids. I would love to see a Sjorgen's specialist... a very good idea. Thank you.

[PMRpro Ambassador in reply to Soinoi]

"it's a fairly benign condition and we just treat symptoms"

They are a bit dismissive aren't they! Yes, it is really a case of managing symptoms and it isn't generally life-threatening BUT they are now realising the extent to which it affects the entire body and isn't just the patient is a bit dry. The same applies to PMR - it has also been regarded as a simple, benign, short-lived disorder that lasts a couple of years. No it isn't, no it doesn't for everyone. It is a heterogenous disorder with a wide range of symptoms and management requires a bit more than handing out pred tablets and an unrealistic fixed tapering schedule.

[Whitecliff in reply to Soinoi]

If you look at the authors of the BRS Sjogrens Guidelines and Google their NHS clinics that is a good place to start to find an expert in the UK close to you that your GP can refer to. The most up to date guidelines are the current draft for 2024. I wasted years seeing different Rheumatologists that didn’t have a clue because you need to see an expert of which there are few in this country.

[Soinoi in reply to Whitecliff]

Thank you - much appreciated

[PMRpro Ambassador]

Hi and welcome!

I also immediately thought of costochondritis. I also had sharp pains in my ribs with PMR - pretty sure they were due to nerves being pinched by spasming muscles due to myofascial pain syndrome affecting the back muscles alongside the spine. It is something that has persisted all through my PMR, worse some times than others.

I think a lot of rheumies are unaware of the extent to which Sjoegrens affects the patient with its systemic effects, they need a bit more than eyedrops!

This may be helpful - they appreciate the potential severity of the disorder:

sjogrens.org/understanding-...

[Soinoi in reply to PMRpro]

Thank you - interesting to read.

[AtopicGuy]

Hopefully, your doctor will seek to rule out anything nasty based on your risk factors, including other ailments (comorbidity), family history, and lifestyle. The commonest cause of "indigestion" and mid-chest pain is heartburn, also know as acid reflux. This is when the natural acid in the stomach leaks upwards, past the valve (sphincter), into the gullet (oesophagus) and inflames the lining. The side effects of medication often make it worse. Check out this NHS link for information:

nhs.uk/conditions/heartburn...

[Soinoi in reply to AtopicGuy]

Thank you - yes, certainly an element of that to it I'm sure. Speaking to GP on Friday so will ask about it then & the possibility of trying enteric coated tablets.

[Creas]

I still haven't got a formal diagnosis though I think I have PMR. I also have pain in the chest area (back rather than front) and it worried me at first but I think it's quite common. All linked, and muscular/soft tissue rather than anything more sinister (muscles attaching the back of the shoulders - scapula - to the lower spine perhaps, not to mention the intercostal muscles between the ribs). All of the above could alternatively come from a shoulder injury which I suspect is how mine began; continuing to play tennis dramatically worsened it.

[Soinoi in reply to Creas]

Yes, reading on here it does seem to be a fairly common symptom. Probably I just ignore the aches in other areas of my body more than I do the chest area.

[Creas]

(my chest hurts terribly whenever I sneeze or cough; I have to actually brace myself when I feel a sneeze coming on!)

[PMRpro Ambassador in reply to Creas]

Where in your chest?

[Soinoi in reply to PMRpro]

It varies a bit but around the bra strap - front & back plus stabbing pains in breast area and under shoulders... went to get it checked again - blood tests and ecg and thankfully no sign of it being cardiac related.

[PMRpro Ambassador in reply to Soinoi]

Could it be costochindritis?

[Soinoi in reply to PMRpro]

Yes, it could. I did ask about that. Dr said ibuprofen though and I thought that was a 'no no' with steroids but maybe the gel is different... will ask pharmacist

[PMRpro Ambassador in reply to Soinoi]

I doubt it will help though! The odd dose of ibuprofen is OK, especially if you take stomach protection with it ad with food, it is longerterm use that is a problem - though not only with steroids, longterm consistent use of NSAIDs has implications for heart and kidney health.

[Soinoi in reply to PMRpro]

Thanks for that information. Dr was concerned that I am currently taking a double dose of Lansoprazole (as advised by GP) because of awful indigestion. She said it interferes with Vit D absorption and I think I've read on here that some people struggle to come off that drug as well.

[PMRpro Ambassador in reply to Soinoi]

What drug - lansoprozole? That's because you also have to taper it or you get rebound acid production which can be even worse. A lot of doctors don't know that and even pharmacists haven't a clue sometimes.

Is the indigestion related to the pred or do you have it anyway? What other drugs are you on? Alendronic acid by any chance?

One way of dealing with the getting off a PPI is to switch to the older H2 antagonists - almost as good, the difference is minimal, but very different mechanism and different side effects.

[Soinoi in reply to PMRpro]

Gosh, I'm learning a lot from this site 🙂 I'm not on any other drugs apart from HRT which I've been on, with no issues, for a few years. I think for me initial indigestion from prednisolone has now got all muddled with inflammation/ costochonritis and hard to know what's causing what - will taper lansoprazole as I taper steroids I guess.

[PMRpro Ambassador in reply to Soinoi]

I'd ask to switch to an H2 antagonist - much easier to wean off apart from any other concern. They may also be willing to offer you enteric coated pred - the more potential confusers you can eliminate the better in diagnosing what is what.

[Soinoi in reply to PMRpro]

I did ask about enteric coated tabs and Dr said I'd probably still need something to protect tummy as coating on them could cause irritation! Will ask about the H2 antagonist though. Thank you.

[PMRpro Ambassador in reply to Soinoi]

The colouring can but you can wash it off. The coating lets them pass THROUGH the stomach, not sure why it would irritate.

[Achyjoints]

Hi I've just seen your post from 2 days ago. I'm a 60yr old male who's had PMR since December 2020, so three and a bit years now. Currently on 6mgs which I can't seem to get below.I.5yrs ago I started to get back pain in my muscles not the bones and 3 months ago started to get chest pains every morning in the centre of my chest which reduces as the day goes on.

No-one seems to know what my back pain is but it's clearly causing inflammation and tomorrow I intend to go to my nearest A&E with a book and a packed lunch to have my chest checked out.

Clearly you've been tested and it was all clear?

John

[Soinoi in reply to Achyjoints]

Hi John, I think it's good to get it checked as it will give you peace of mind. Mine has been on & off for a while and my GP actually sent me back to the Medical assessment unit yesterday to get an ecg test and blood tests just to be on the safe side. They came back clear so the conclusion, in my case, is partly indigestion from the steroids and partly just inflammation from the PMR. Good idea to take a book as I was there 6 hours but happy to have seen a GP that wanted to be thorough and happy for good results. Let me know how you go on. Kate