PMR and gastrointestinal problems

Bones, joints and muscles
1

My mum was diagnosed with PMR a few months ago. I have found the posts on this site very informative, and I would very much appreciate any suggestions you may have to help my mum, who is feeling very unwell indeed at the moment.

Although mum has had the more typical symptoms of PMR, such a extreme fatigue and originally some shoulder pain, a feature of her illness seems to be loss of appetite, her food tasting 'synthetic' and frequent reflux, where her food won't go down, and comes back up. She has lost more than 3 stone in weight over the past year, and has become very weak as a result. This usually gets worse as the day goes on, and she feels much better with an empty stomach.

Mum did have some problems with her stomach over the year or two leading up to her PMR diagnosis, and had terrible vomitting over two prolonged periods when she had to take antibiotics. At that time the hospital said she had a hiatus hernia, although when mum has mentioned this to her GP he has not suggested any investigation or treatment for this.

She has tried various medications for the 'reflux' as she calls it, including one the the GP said would push her food through her, but these made her feel very nauseus and she could not continue. She does take Omaprezole twice daily without problems.

When she started taking prednisone, she did not notice the dramatic improvement she had hoped for although her ESR plummeted. There was a gradual improvement in her fatigue and appetite over about three months. Then the GP reduced her dose. At 10mg she seemed to be OK, but then when she was reduced to 9mg about a month ago the eating difficulties came back. She was reduced to 8mg last week and has gone significantly downhill with regard to her ability to keep food down, and the fatigue has increased along with a general feeling of being unwell. Today, for example, all she has managed to keep down is a build-up drink, and everything else she has tried to eat has not stayed down. There are very limited things that she can tollerate, mainly milk and banana, sometimes a little porridge or a build-up drink.

The GP seems unsure as to what the problem is with Mum's digestive problem. I'm so worried about her as she is feeling very unwell indeed at the moment and her weight loss is continuing steadily.

I have come up with some possible causes: hiatus hernia, prednisone withdrawal, PMR relapse. It would be great to hear whether anyone else has had similar symptoms and what caused them.

I am going to the GP with mum on Thursday, and some pointers as to what we should be asking would also be much appreciated.

Thank you very much.

2

Welcome Clare - and I really feel very sorry for both you and your mother and that you need to be here at all.

My immediate reaction is that whatever it is your mother has - it isn't PMR, or at the very least, it is not a simple case where a GP can deal with it using pred. Simple PMR should have shown a dramatic response in the symptoms within 48 hours - about 70% better. Yes there are things that will then improve more slowly, but without the dramatic response there must be a massive query about the diagnosis.

It is not uncommon for patients with PMR and hiatus hernia to have problems but not to that extent - have they done an endoscopy? Is her oesophagus (gullet ) OK? If she is having reflux there MUST be some damage. That needs an endoscopy to establish. What other medication is she on besides pred and omeprazole? Omeprazole can cause all sorts of gut problems itself and if they handed out alendronic acid (as many do without further thought or investigation) that can also cause horrid problems, especially in someone with existing gullet problems.

"The GP seems unsure as to what the problem is with Mum's digestive problem." - in that case he is totally out of his depth and needs to pocket his pride and find someone who can investigate it properly. And frankly - to be prepared to leave a patient in that sort of state with a dx of PMR indicates a lack of interest.

I have come across a few cases in the last few years where I wished I lived nearer and could go to the doctor with them. It is true that pred can make people less bothered about food, though usually it gives them a ravenous appetite. But this is more than that!

What should you be asking for? Referral to a specialist, not a rheumy (has she seen one?) and as an emergency - not urgently, that means within about 3 months. Emergency means a letter in her hand after a call to the hospital saying she is being sent in. A&E doesn't just mean Accident & Emergency, it can also mean Admissions & Emergencies depending on the hospital.

Good luck and let us know how you get on.

Eileen

3

Dear Eileen,

Thank you so much for taking the time to write to me. I really appreciate it. You sound like you really know what you are talking about. Can I ask whether you are a PMR sufferer yourself, or are you a medical professional?

Luckily, Mum is seeing a different GP on Thursday - to date she has always seen the same one. This may be helpful. Her usual GP has been very nice and shown a very caring attitude to her (which is, I think, why she has persevered with him), but he has not referred for anything at all and has just relied on blood tests. She has not had an endoscopy or seen a rheumatologist.

So, perhaps it's not PMR after all, or at least not just that.

With regard to the PMR diagnosis, Mum is 74 years old and she did suffer from shoulder pain before starting the prednisone. She did have a very big improvement after starting the steroids, however it was gradual, over 3 months, rather than dramatic within a few days. Her ESR reading was high (mum describes how the GP showed her a graph on the screen at the start of her treatment and that her ESR reading was right at the top of the graph. Then at her next appointment after starting the medication it had, as mum put it, gone right down to the bottom of the screen, although at that point she hadn't started to feel better in herself.

We'll ask for an emergency (not urgent) referral and press for for an endoscopy. At this point we have no idea whether her oesophagus is OK - my guess is that it isn't and we need to know what is going on there. If this isn't forthcoming I'll ask for her to see someone privately and will pay myself for the endoscopy/consultation if I have to.

I'll ask mum whether she's had alendronic acid, and advise her against it in future, should it be offered.

I would need to check with Mum exactly what other medication she takes - I'll check and post full details later. There are quite a few different things including warfarin (for arrhythmia); inhalers (for CPD - she has 70% lung function); and thyroxine (for a very longstanding underactive thyroid).

I would just like to send healing thoughts to anyone out there who is feeling unwell and reading this post.

4

I'm both - I've had PMR for over 9 years altogether and have been on pred for nearly 5. It wasn't diagnosed at first, "too young, no raised bloods..." and ignorance! When it got really bad I found this forum whilst doing online research to work out what it might be and have been doing online research ever since! I have a medical technical background and a physiology degree and worked in the NHS and allied areas for most of my working life and have been doing medical translation for 30 years into the bargain. You learn a lot of stuff like that - and I can read a medical paper and textbook as well as most GPs seem able to do ;-) and you are more likely to find me reading something like that than a novel!

It can be hard life being a GP, I'll grant them that. But when they don't know or it doesn't behave as it should - please ask! I can't believe that someone has had reflux to this extent and nothing further has been looked at. It is possible it IS partly PMR - but there is a lot to suggest there is more going on and it needs looking at. Just because you have PMR doesn't mean you are immune from other illnesses. PMR is the name for a set of symptoms and it can be found alongside a lot of other illnesses - and a thorough investigation is required to decide none of them applies. Had you said your mum improved dramatically I wouldn't have queried the diagnosis in the same way.

Your mum probably is one of the generation who thinks doctors (and priests) are special. I went to uni with them and have worked with them long enough to know some have feet of clay and others are a bit lazy. I wonder would they have been satisfied if they had been the patient.

BFN, Eileen

5

I'm sorry to hear you have been unwell for such a long time, Eileen. It's great that you are sharing your personal experience and research-based knowledge with people like us on this site.

I'll be back after Mum's appointment with an update...

BFN! Clare

6

Hi. Mum has seen the GP and is getting an endoscopy. She has been told there is a possibility she has cancer. I feel a bit upset at the moment so will get back another day with an update. I am so grateful for all your support and information.

7

Clare - I'm so sorry you now have this hanging over you but I'm not surprised at the suspicion I'm afraid.

What I can truthfully say with my hand on heart is I know just where you are at the moment, cottonwool brain and all the rest - I was there with my husband 20 years ago. Hang in there - with all its faults the NHS is usually brilliant when the chips are down.

All the very best to you both, Eileen

8

Eileen - it's good news. No cancer! Mum has a hiatal hearnia and Barrett's oesophagus as well as the PMR. What a relief!

She is still feeling very unwell, and it's certainly not the 'all clear', but she has started some medication to help push the food through her and she has more-or-less stopped being sick, which is at least some progress. She's awaiting a further consultation with a specialist to see what can be done about the conditions she has been diagnosed with.

I will check out the posts on these other conditions on patient.info to see what further advice we can find.

Thank you so much for your help - it was very much appreciated.

Hope you have a good weekend.

Clare

x

9

That is SUCH good news Clare, I'm so pleased for you! I can imagine the relief you both feel. I was wondering what had happened this morning.

If you haven't already found it, the article on here is very good - I'll add the link in a separate post in case it disappears for monitoring but it also comes up high on the list for a google search for Barrett's oesophagus and is by someone called Tim Kenny (to narrow down the choice!).

I just don't get why they didn't look for something like that earlier - yes you often lose weight with PMR but not that much usually. If you did it would make the weight gain with pred less of a problem!

The primary link with PMR that I know about is that she must not be given bisphosphonates for osteoporosis prevention alongside the pred. Not that that stops some doctors wanting to give it!

Anyway - do have a wonderful weekend and now you can get on with getting ready for Christmas without this hanging over you as a big black cloud. Do let us know how she gets on - if only because when you tell us about this path we have better knowledge to help others. Apart from that - I'm nosey ;-)

Eileen

10

https://patient.info/health/Barrett's-Oesophagus.htm

It's good and quite readable for anyone.

I'm sure one day I'll be told rejoicing because someone's been given an unpleasant diagnosis means I'm wierd. Never mind - this is definitely better than the big C!

Eileen