We go there so you don't have to

[whisperit]

It's the question setting the Twittersphere ablaze, the question on everyone's lips.....what happens if you have a diagnosis of UCTD and adrenal insufficiency and wake up with a temperature of - well, hotter than July?

We've done the research, gentle reader, and can set your minds at rest. Now read on...

It's 5.30am and you wake feeling strangely chilly. 'Time to pop the hydrocortisone tab', you think. Half and hour later, your teeth are chattering. ''Double up!' you think. An hour later, a strange man is sitting beside you saying something about being a surgeon 'helping out' and 'next time just ring 999'. You tell the ambulance men that your name is Geraint Thomas and it's important that they put you back on the bike because the yellow jersey will be yours after today's time trial.

Some time later you realise this is not the case. Rather, you are lying in an unfamiliar room, opposite an elderly gentleman who proceeds to give a night-long commentary at volume, and in some colourful language, that he 'don't want to be here'.

A variety of needles are inserted into you at regular intervals. You are asked to repeat your name and date of birth three hundred and seventeen times. The following night, a different elderly gentleman lies in the bed opposite, declaiming the truth about the private life of his neighbour, 'Jezebel'.

On your second afternoon dans l'hopital, two pleasant gentlemen with posh accents come to speak with you. They say nothing about not wanting to be there, or about their neighbours. instead, they tell you, 'We can find no source of any infection. So it appears to have been something to do with your ongoing rheumatological condition. The good news is that your CK levels are nearly down to normal'

'What happens next?' you ask.

'You may choose to stay a further night on the iv antibiotics - as a precaution - or you may prefer to go home'.

'Who's providing the floor show tonight?'

'It's a speciality act. You might enjoy it'.

'Does it involve an elderly gentleman shouting at all?'

'Er... probably, yes'

'I'll go home then thanks'.

So now you know.

[EOLHPC]

OH BOY...this is No Picnic, Mike....glad your Funny Bone is in Good Shape: thanks for starting my day with a GRRREAT laugh! Am feeling concerned about you...please keep us posted

🍀😘🍀😘🍀😘 Coco

[whisperit in reply to EOLHPC]

Oh, don't worry, Coco. This one is going to run and run....x

[Hidden]

Good gracious Mike - how can all this have happened and yet you’re none the wiser about what or how? It’s straight from a vision of hell painted by Peter Brueghel the Elder or Hieronymus Bosch?!

Has anyone at all attempted to work out which med or condition caused this awful admission you can’t even recall? Who called the paramedics or doctor for you?

I had a very similar experience in 2015 when my rheum and 2 GPs encouraged me to restart Azathioprine after one ten day hospital stay where they got it all wrong. The second stay a week later was more like yours. I have no recollection of how I got there but was put in the self harmers bay on the acute ward - which meant that the Eurovision on tv was intermittently turned right down at the instruction of an elderly lady sipping tiny cans of Pepsi from her can stashed in her drawers, then vomiting loudly and screaming “oh the pain oh the pain!” The nurses asked me to count intervals between illicit Pepsi sips and her vomits and screams?!

Then came a woman from ICU who had tried to take her life with an overdose 2 days earlier and was on watch until her community psychiatric team could attend her . However it appeared to be me who was on watch - judging by all nurses asking me when exactly she’d gone to the toilet - how long had she been in there? She got very angry with the elderly vomiter and sat on my bed telling me her littany of woes.

Then came mother of a neighbor who was having blood transfusions due to alcoholism. She sat right by my bed with her blood bag and drip and was in a thorough grump for not being able to smoke or drink booze so was very rude to the nurses and demanded that I “entertain” her.

I discharged myself with great enthusiasm and lots of fond hugs from my fellow bay sharers on the Monday morning - received thanks from doctors and nurses for helping them out for free - almost running backwards. Like yourself I have no idea how I came to be there at all but the dulcet murmer of “AI disease of some kind” was regularly whispered in my ear by a very an otherwise superior looking loccum consultant, known by me as “the beautifully attired the Johnny Depp look alike”.

I do hope that you somehow feel much better soon. If not Myositis could this have been an Addison’s crisis perhaps? Please keep us updated on next steps xx

[whisperit in reply to Hidden]

Well, it's been said before, but one thing these episodes are good for, it's amusing anecdotes. The surgeon was in fact doing some locum out-of-hours GP work and it was he who called the ambulance. Like you, I am highly suspicious that this may have been the result of a combination of azathioprine plus an inadequately characterised adrenal problem, and hope to get some more action from my so-far-altogether too-complacent endocrinologist when next I see him (which, coincidentally, is later this week) x

[Hidden in reply to whisperit]

Aza induced anything is always worth considering Mike - hence my own related ward tales. X

[Hidden in reply to whisperit]

...and also why I felt sort of at home on that self harmers bay. It was me who suggested that I try Aza to my rheumy over retrying Methotrexate injections . X

[Melba1 in reply to whisperit]

I think we should all make a book of our combined amusing hospital stories but also very worrying. Have you had any follow up? Did you take your AZA today? I had a similar reaction several weeks in to taking MMF - shaking, hot, cold, losing consciousness and it resolved on stopping it so presuming it was that but with your adrenal issues that obviously needs considering too. How do you feel now?

Well you got your rheumy trained eventually, now it’s the endo’s turn to have the gentle Mike guidance!

Sorry this is so rubbish for you at the moment. I keep hoping for a spontaneous (or even heavily drugged induced!) remission for you. It’s just finding all those pesky puzzle pieces first of what exactly is going on.

Xx

[whisperit in reply to Melba1]

Yes, thanks. I'm collecting the badges and T shirts you've already got I resumed my aza this morning - after 4 days break - and have been sick as a dog, which is a shame as I seemed to have no real problems in the 'breaking in' period. Awaiting instructions from the rheumy via the rheumy nurse as to how to proceed - I will skip the rest of today anyhow. x

[Hidden in reply to whisperit]

Ooer this whole sorry tale is almost same as mine Mike. My hubby had to call the GP to our house within 3 hours of me restarting Aza. He tried to tell us it was cholecystitis but by this time I knew without any doubt and then my amylase showed high so they knew.

I admit I had two sweet male hospital doctors sympathetically perplexed as I wept with frustration during my second inpatient stay from Aza. I had to explain to them that Aza had worked almost immediately on my awful peripheral and facial nerve pain and was my fourth DMARD to date.

Your rheum will find others that don’t make you ill though. I don’t think you’ve tried as many as I have?

I’ll go back on Mycophenolate willingly if my rheum will allow me to. No side effects worth mentioning for me. Have you tried it yet? X

[whisperit in reply to Hidden]

There's no getting away from it, these are basically poisons so it's always going to be a balancing act to keep them the right side of doing more harm than good. I did try MMF ages ago but stopped after just a few days of nastiness. Who knows what lies round the next corner? x

[Hidden in reply to whisperit]

So true. I come off each one breathing a sigh of relief (Aza aside) but then spend the intervening months worrying that I’ll be abandoned to my inflammatory fate! X

[Melba1 in reply to whisperit]

Hmm that does sound rather strongly indicative of an adverse reaction. I did just the same with another trial of MMF and was very quickly and strongly unwell, and just the same in that it had felt ok for a few weeks at the start. I think the reaction can become more severe with each subsequent trial. I had immediate chest pain and palpitations on AZA which just got progressively worse. Like you said to Twitchy - essentially poisons 😬 and it’s finding one that we don’t react to (at least not too badly) and even us ‘reactors’ often eventually find one as twitchy did well on MMF and I’m tolerating methotrexate well and finding it quite magic in improving the symptoms - especially fatigue. Although my rheumy and immunologist remain convinced it’s rituximab working it’s magic!

I thought that was the next step for you too? Now you’ve failed AZA (sorry failed is a horrible word and I always felt it meant I’d failed but of course it doesn’t) you should certainly be eligible? Good news your CK levels are down, any corresponding improvement in symptoms or probably all too confused with feeling rubbish with adrenal dysfunction and reaction to drugs 😬

X

[whisperit in reply to Melba1]

Isn't it funny how you can see straight away the need to consider these pieces of the puzzle together, whilst the clinicians seem to struggle to look beyond their specialty? The underlying problem for me - myositis and possible drug reactions aside - remains that after a short boost, after a week or so of higher steroid dosing, I enter a steep decline that leaves me struggling with severe fatigue and discomfort every day. This has still not been properly addressed, as it doesn't seem to fit with how a UCTD patient is supposed to react. Rituximab was mooted before aza, so maybe that will be next up? x

[Melba1 in reply to whisperit]

Fingers crossed rituximab is the drug for you. I can’t see how you cannot be an urgent case for it and hope the Welsh issues don’t slow things down. It makes me so cross at the unfairness that some of us in London hospitals can get it approved and funded in days yet equally or more unwell people in other areas have gatekeepers and hurdles. You’ve come a long way in putting your own puzzle pieces together and helped a lot of the rest of us along the way. I wish the clinicians would read this forum and see how we all have our own diverse yet similar CTD versions and really need their help and teamwork with each other and us to help us figure it all out.

I had an interesting 30 minute phone chat with my immunologist (rather brain bending as he thinks I’m more intelligent than I am as I’d read some articles so could talk the talk until deeper understanding was required 🙄😂) and he said (very kindly!) I was using highly academic recent research as a guide to what I then presumed could be used in clinical practice yet clinicians and the lab tests I needed to put my remaining puzzle pieces together (I feel I nearly have a completed puzzle but then as we all know consultant’s still take pieces out or try and squeeze pieces in where we can quite clearly see they don’t fit!) were many years away from what was being discussed academically and experimented with in specialist labs. So basically I could go to America for the tests but then he said it’s incurable and untreatable at the moment anyway so what’s the point of knowing! (This is not for the lupus but for a part of my complement system which is missing or dysfunctional - like the rest of me!) He then said the most helpful thing he could do was write to educate my future clinicians (especially neurologists who don’t understand it!) and A&E drs about all the problems caused by this defective/ dysfunctional immune system so they can more quickly identify and treat the problems as they arise. Which is sort of very useful and probably what we all need (in the absence of a cure!)

Hope you get a better night’s sleep. I was isolated at my last hospital appointment so quite missed the amusing interactions with the other patients! Although still woken every hour...

Did you feel the drs in hospital understood your disease at all? Did they speak to your rheumy?

X

[whisperit in reply to Melba1]

you are really in the front line there, melba. your immunologist sounds like he appreciates that. the consultant on the ward turned out to be the brilliant respirologist who first diagnosed me with ILD. Sadly, since I was there over the weekend (and he wasn't, being a consultant and all) he only saw me to discharge me. it'll be interesting to see if his discharge report is anything more than 'admitted for ?sepsis; discharged to care of rheumatogy' x

[Melba1 in reply to whisperit]

Fingers crossed rituximab is the drug for you. I can’t see how you cannot be an urgent case for it and hope the Welsh issues don’t slow things down. It makes me so cross at the unfairness that some of us in London hospitals can get it approved and funded in days yet equally or more unwell people in other areas have gatekeepers and hurdles. You’ve come a long way in putting your own puzzle pieces together and helped a lot of the rest of us along the way. I wish the clinicians would read this forum and see how we all have our own diverse yet similar CTD versions and really need their help and teamwork with each other and us to help us figure it all out.

I had an interesting 30 minute phone chat with my immunologist (rather brain bending as he thinks I’m more intelligent than I am as I’d read some articles so could talk the talk until deeper understanding was required 🙄😂) and he said (very kindly!) I was using highly academic recent research as a guide to what I then presumed could be used in clinical practice yet clinicians and the lab tests I needed to put my remaining puzzle pieces together (I feel I nearly have a completed puzzle but then as we all know consultant’s still take pieces out or try and squeeze pieces in where we can quite clearly see they don’t fit!) were many years away from what was being discussed academically and experimented with in specialist labs. So basically I could go to America for the tests but then he said it’s incurable and untreatable at the moment anyway so what’s the point of knowing! (This is not for the lupus but for a part of my complement system which is missing or dysfunctional - like the rest of me!) He then said the most helpful thing he could do was write to educate my future clinicians (especially neurologists who don’t understand it!) and A&E drs about all the problems caused by this defective/ dysfunctional immune system so they can more quickly identify and treat the problems as they arise. Which is sort of very useful and probably what we all need (in the absence of a cure!)

Hope you get a better night’s sleep. I was isolated at my last hospital appointment so quite missed the amusing interactions with the other patients! Although still woken every hour...

Did you feel the drs in hospital understood your disease at all? Did they speak to your rheumy?

X

[Melba1 in reply to whisperit]

Fingers crossed rituximab is the drug for you. I can’t see how you cannot be an urgent case for it and hope the Welsh issues don’t slow things down. It makes me so cross at the unfairness that some of us in London hospitals can get it approved and funded in days yet equally or more unwell people in other areas have gatekeepers and hurdles. You’ve come a long way in putting your own puzzle pieces together and helped a lot of the rest of us along the way. I wish the clinicians would read this forum and see how we all have our own diverse yet similar CTD versions and really need their help and teamwork with each other and us to help us figure it all out.

I had an interesting 30 minute phone chat with my immunologist (rather brain bending as he thinks I’m more intelligent than I am as I’d read some articles so could talk the talk until deeper understanding was required 🙄😂) and he said (very kindly!) I was using highly academic recent research as a guide to what I then presumed could be used in clinical practice yet clinicians and the lab tests I needed to put my remaining puzzle pieces together (I feel I nearly have a completed puzzle but then as we all know consultant’s still take pieces out or try and squeeze pieces in where we can quite clearly see they don’t fit!) were many years away from what was being discussed academically and experimented with in specialist labs. So basically I could go to America for the tests but then he said it’s incurable and untreatable at the moment anyway so what’s the point of knowing! (This is not for the lupus but for a part of my complement system which is missing or dysfunctional - like the rest of me!) He then said the most helpful thing he could do was write to educate my future clinicians (especially neurologists who don’t understand it!) and A&E drs about all the problems caused by this defective/ dysfunctional immune system so they can more quickly identify and treat the problems as they arise. Which is sort of very useful and probably what we all need (in the absence of a cure!)

Hope you get a better night’s sleep. I was isolated at my last hospital appointment so quite missed the amusing interactions with the other patients! Although still woken every hour...

Did you feel the drs in hospital understood your disease at all? Did they speak to your rheumy?

X

[PMRpro]

Think I'll stay here - when OH had his "I don't remember anything but why am I here..." episode the week before last he was in isolated splendour on the stroke unit, a subdepartment of ICU (by that stage a stroke/TIA had been ruled out but it was a nice bed for monitoring). And apart from that, quiet.

The paramedics will have loved you - they like a worthy job! Especially when the subject doesn;t mess up their taxi.

Get well soon!

[whisperit in reply to PMRpro]

Always impressed by paramedics - they immediately spotted the blood sugar meter on my bedside table and asked whether I was diabetic - something the on call doctor had failed to do. Though they may also have fueled my Geraint Thomas fantasy by squirting a glucose gel into my mouth as we got under way. Hope things are sorted for you and OH now x

[PMRpro in reply to whisperit]

A blood sugar reading is part of the basic metabolism assessment - I thought anyway.

Come on - he was a surgeon! Hasn't done medicine for years probably

And thank you - once they sorted out the potassium level which was in the cellar (or even maybe the foundations of the cellar) and rethought the diuretic regimen the ward had put him on a couple of weeks before he seems to be fine! Slowly getting back to a level of fitness he hasn't been at since about this time last year!

[whisperit]

Thanks, lou. You too x

[Treetop33]

Nooo! Terrifying. You are being very brave with the humour, but are you any the wiser about what you should do when fever strikes? The people on the AI forum say double your daily dose when you might have an infection, but sometimes it runs away with you and only a fast acting injection will do.

Hope you recover soon and get some answers x

[whisperit in reply to Treetop33]

Yes, that's the difficulty - at what point do you think, 'OK, time to break out the needle?!' x

[leslieliesel]

Oh MY!!!!!!

[misty14]

Oh Whisperit

So sorry to read how much your suffering. I admire your sense of humour in adversity and can relate to your post!.

From experience I've found that repeated admissions into hospital does help to concentrate consultant's minds. I hope that your visit to the Endo will give you the help and advice you need. Especially as the nasties were ruled out but your left with coping with these baffling and serious symptoms!.

I can particularly relate at the moment as just had the all clear from Gastro Biopsy results which is good news, but had hoped for better colitis treatment!. I ended up feeling foolish as my Fab Gastro laughed that my nausea and abdominal pain could be due to constipation!. Just left with coping with weird symptoms aren't we, a prison sentence without parole? .It's wonderful to read on forum of similar experiences isn't it.

I look forward to your sequel but hope it doesn't include any more re-runs into hospital!.

Fingers tightly crossed for youX

[Hidden in reply to misty14]

Just a quick aside Misty. No one should ever be made to feel foolish for having constipation. It can actually be a killer - my father in law died of sepsis from diverticulitis caused by chronic constipation. Along with neuropathy it’s the bain of my life! X

[misty14 in reply to Hidden]

Hi Twitchy

Thanks so much for your kind reply. No, constipation is certainly no joke and can make you feel horrible!. He was laughing because as he said he never thought I'd have this problem, its always been diorrhea!. He is going to make recommendations in his letter. I'm glad your neuro-physio apt was helpful. X

[Hidden in reply to misty14]

I do understand where your gastro was coming from Misty - I have the opposite problem presently (constipation is my body’s default but the other extreme is my present reality😬😝) and I know it really is equally debilitating and potentially serious either way. Who wants to spend their life worrying about where the nearest toilet is or feel compelled to lug around fresh undies and wipes or pads? Life is for living and we autoimmuners don’t really get to do enough of it Xx

[misty14 in reply to Hidden]

I couldn't agree more Twitchy, hear , hear.Xx

[whisperit in reply to misty14]

Aw, thank you, misty. That is a good result from your gastro biopsy, but colitis is surely a real misery and deserves serious treatment. Weird or no, these are the things that make the difference between living and hanging on grimly, aren't they? Hope you do find a useful way forward soon x

[misty14 in reply to whisperit]

Thanks whisperit for your lovely reply. You only get the heavy duty treatment for colitis if you've got very active, serious symptoms. I've been caught out that its quite mild but symptoms still affect my life. It seems perverse that these last few days I've wished that it was worse so I could be treated better. Something else we auto-immuners feel a lot I guess.X

[whisperit]

You're not wrong. I had to return to spend last night in A&E too, as it turned out! Keep on keeping on, Lou x