Urgent help needed please

[Hoofprints]

Hello. Writing from acute medical ward after admission Saturday afternoon following a severe reaction to taking codeine (a single 30mg dose). It's a big ask, but if anyone reading this could reach out with any ideas as to why I have now reacted so badly to this drug when years ago I could take it, I would be grateful. Bear with me and apologies for what will be a lengthy post by necessity.

A week ago, I developed severe headache again with stomach pains (around umbilicus and sharp and griping) and nausea and diarrhoea. I have been shielding with my partner for 3 months, meticulously cleaning food delivery etc. These symptoms persisted all week until Friday morning when it ramped up symptoms- wise and I began vomitting. I couldn't hold liquids down and so called the G.P. as temperature by Friday was v hot here in UK. She prescribed anti emetic and codeine for headache. I explained I'd had some stomach pain like a burning discomfort the last time I'd used codeine and so no longer used it. She said that wasn't a usual thing for the drug to cause and suggested I try it again.

I tried it. Around 15 minutes after, I started to get the burning pain and realised I had correctly remembered this happened before. I was laying in bed and thought, oh well, I won't take this again. I got up to go to the toilet and my legs were extremely weak. My partner had to support me to the bathroom. I layed back in bed and thought I'd sleep off the effects. Around 15-30 minutes later, the burning pain in my stomach ramped up suddenly into a violent, severe stabbing pain around my stomach/gallbladder area, spread to my chest and up my back. The pain was a 10 , utterly shocking and worse than the gallstone pain I had years ago before gallbladder removed. I was having difficulty breathing and was writhing around on the bed. I genuinely thought I was dying.

My partner called an ambulance. My blood pressure when paramedics attended had shot up to a systolic pressure if 170 and is usually low. It had been very low the day before at 105/54 and I'd felt quite unwell then. My ECG was normal.

I was taken to A and E but could not weight bear at all - I had no power in my thighs and my legs collapsed. I was lifted out by the paramedics. I had a chest x-ray, which was normal, a head CT also normal, and an abdominal x-ray, essentially normal save for appearance of some kind of calcium stones which Dr gave a specific name to which I forget and told me they were insignificant as many people have them.

I was admitted reluctantly to the acute medical ward and put in a side room as I have an MBL deficiency and anti c1q antibodies. My COVID swab came back negative, but the antibody test for COVID is awaited. I have had numerous blood tests, not sure which but including to rule out liver and pancreatic issues. I've been told my bloods are looking good, but no details. My electrolyte balance was I think only slightly out, bearing in mind the diarrhoea I'd had all week and problems eating Thursday and Friday. This was corrected with Hartman IV fluids.

I have not had any bowel movement since the codeine - it's as if I'm in shock in that department now. As of yesterday and today, I've been able to eat and drink . Today, I was able to stand and walk almost to my usual level (which has been poor due to yet unexplained thigh muscle weakness which came on over last 3 years and has been associated with these severe, meningitis type headaches, swollen face and eyes which I have now, and pains in my abdomen).

The first set of doctors I saw on Saturday when admitted to the ward took on board the anti c1q antibodies and my diagnosis of urticarial vasculitis syndrome which has not been classed as hypocomplementemic but my C3 and C4 have mostly been just below the normal range for the past 6 years. I was diagnosed last October and am being treated as a lupus like syndrome but not started the hydroxychloroquine yet ( another lockdown story). I heard the doctor question her colleague as to whether I have C1 esterase inhibitor issues. I mentioned that I was tested by the hospital treating me in their immunology department for this at my request and it came back negative. The doctor then said that unless I had been tested while the swelling was flaring, the results would not be reliable which is a fact missed often by those testing. I was not flaring when tested. She then mentioned that such issues would cause gut pain and diarrhoea.

She ordered bloods and I assumed she would be testing for that now, but I found out today that they have not run that test or any other tests on my immune system or autoimmunity as far as I am aware. They have not run a test for the anti c1q antibody, not the C1q itself which has never been tested for and should have been along with a skin biopsy in order to make the diagnosis of UVS.

A nurse came into my room yesterday afternoon and told me I was going home. This ward has not made a diagnosis, but listed my symptoms on the discharge sheet. They contacted the immunologist at the hospital that diagnosed and is managing me to see if they wanted them to run any other tests on me before discharge. Surprisingly, the immunologist who gave me a letter that I've carried in my bag for 2 years so that if I had s bad enough episode of headaches that I had to go to A and E, I could present the letter and ask for a lumbar puncture to rule out meningism or a recurrence of viral meningitis (had in 2013) said she didn't want them to do a lumbar punch or any other tests. She apparently said there was a plan in place for me at their hospital. So despite actually being somewhere I could be tested during a flare, that is not going to happen and the only active plan for me is dermatology in August (assuming the clinics are running) for a skin biopsy hopefully, and to go on hydroxychloroquine as prescribed by a rheumatologist.

I have a massively bloated stomach, feel utterly dreadful and have no explanation from this ward of why I reacted to the codeine, or what has been happening that this is the third bout of diarrhoea in 3 months during a period of self isolation. Stool tests are negative for infection. I am going to be discharged in a matter of ? 6 hours and have no idea how I will climb the 2 flights of stairs to our flat. My oxygen sats are going up and down, sometimes 94-95, other times 97-100.

Have lots of undiagnosed neurological symptoms and can't help but wonder if codeine reaction is not a clue to a yet undiagnosed part of my picture. Anyone else out there suffered a similar reaction? Any thoughts or advice desperately welcomed.

[PMRpro]

I haven't read all your post in detail - but I just wanted to say that you never react to something the first time you meet it. It can be the second, the hundred and second, the thousand and second. And it is possible that the ingredients have been changed over the years - different manufacturers of generic drugs use different fillers in making up the tablets. But I think I'd be a bit unhappy at the apparent lack of interest ...

All the best

[Hoofprints in reply to PMRpro]

Thanks so much for that💐

[Melba1]

Oh you poor thing ☹️ Sounds like you’ve had an awful time and that level of pain must have been frightening.

Unfortunately we’re a complicated lot to deal with in hospital but that doesn’t mean they should discharge you without trying to get to the bottom of it when nothing has been solved and you still feel so unwell.

Getting the right tests is also so important and you’re right your complement levels should be tested. I have a list now that I give them when hospitalised of all the tests I need because I got so fed up of them just doing the usual basic ones and saying they’re Ok when actually the tests that show a flare in me were very abnormal - but we only know that if they get the right tests! 🙄

Have you seen a rheumy whilst an inpatient? If not, I’d ask/ insist. It’s hard to insist when you think they want you discharged but they shouldn’t be discharging you without either a diagnosis, symptoms treatment and a quick follow up - preferably all of those - and especially when you still feel rubbish.

I’m in hospital a lot and it’s only happened to me twice where I was discharged too soon (by junior staff) but both times I was back in within a week so it’s in their interests too to get you sorted now.

I hope you feel a lot better and get some answers xx

[Hoofprints in reply to Melba1]

Thank you. I have asked them if they have checked my anti c1q and complement profile, but they said they are specialist tests and take a long while to come back. So what - they could at least check them and let me know late via the GP. I would have thought they'd have checked the C1esterase thing as it was the first Dr who raised that issue proactively and made me feel hopefu that constructive help might actually be coming my way. I will ask again but as I'm in a coveted side room on an acute medical ward, I think they will pretty much push me on. I will ask again. Thank you so much for replying 💐

[Melba1 in reply to Hoofprints]

Best place to get the specialists tests whilst you’re in hospital, Like you say, even if they take a while it’s more clues for you. And some complement tests take ages (my CH100 takes about 5 weeks which is so annoying when it’s the key marker of a flare in me- worth asking for them to take that whilst you’re there) but some like the C3/C4 etc would be back within the day I think, not sure about your C1q antibody but that’s an important result of its been abnormal before.

Are you under rheumatology in that hospital? Sometimes communication doesn’t happen very well and they might not have been informed you are there? My rheumy team were really cross when I was hospitalised a few weeks ago that they weren’t told by the acute ward team I was in hospital so get them to contact your rheumy (even if at different hospital). I just emailed my rheumy myself once when I was in hospital and feeling like they were not understanding lupus at all. Not sure it’s correct protocol but he turned up to see me quickly and sorted things out and I felt so much better seeing him.

It’s even harder to be pushy when you feel rubbish and your bloods aren’t giving them clues (or the ones they’ve taken aren’t 🙄) but you are just as deserving of that room, their investigating it properly and getting sorted as anyone else so don’t let them push you out if you feel awful. I’ve seen it lots of times in hospital where it’s just about freeing beds and people have been discharged in terrible states. Say you’d ideally like to know what’s wrong before they discharge you but at the minimum need to see a rheumy and feel less unwell

Xx

[Hoofprints in reply to Melba1]

Thank you- that's good advice. I will ask about the CH100 as that has been high in the past when taken by immunology, but they dismissed it's significance as they said it wasn't really high ( can't remember if it was 1100- so frustrating not having my notes here). I am at a separate hospital for immunology, rheumatology and neurology. The neurologist does have one day a week here, but that's on a Thursday. IThey did contact the other hospital to see if they wanted them to run any tests before they discharge me, so I don't understand why the other hospital have told them don't run any other tests. Surely these things have to be run at intervals of time? The anti c1q was taken last July and never since, the C3&4 in Jan/Feb this year. It is totally confusing me as the hospital that manages me ordinarily and has stressed that seeing me in a flare would produce the best results, is now saying don't run other tests. I will put my case again but it is so hard without backup and I'm sure they are going to go down the line of thinking me an anxious and troublesome patient rather than someone trying to help herself and them! My GP would willingly run these tests for me but can't order them from the surgery. Thanks again for your support

[Melba1 in reply to Hoofprints]

Possibly what happened when they called your other hospital is that they spoke to a registrar who doesn’t know you, your case or even much about lupus. It’s happened to me before and one junior registrar even cancelled my planned tests that always show a flare (they are more unusual ones but my rheumy, GPs and other specialists know what they mean) for different ‘usual’ ones that always show nothing in me. I was livid as it affected how the other hospital could treat me, just because she was following a text book of tests to request rather than any knowledge of an individual patient.

Please don’t be put off pushing for answers by worrying they’ll think you’re anxious. Many on here have felt like that when we’re not getting the answers to our symptoms and not pushed enough for fear of being thought anxious or hypochondriac but you know you feel really unwell. It’s not anxiety, they just need to get to the bottom of it - that’s their job. It is a difficult job with us with dodgy immune systems as our results don’t show what less experienced drs expect them to show, but then they need to keep looking!

Have you seen a senior dr? That’s worth asking for too.

And check your discharge certificate before accepting it! The number of errors I’ve found on mine are shocking and that can then influence other drs and send things down the wrong track. I’ve had someone else’s test results, wrong medications, omissions of important key results and jnr drs just writing inaccurate things. So these days I make it into a joke and say give me a red pen please and I’ll correct it. The young drs are often quite relieved I’ve picked up mistakes although one old prof was very stroppy at being corrected 🤣 My favourite little first year doctor who looked after me so well during a long admission had his ‘draft’ discharge certificate returned a few times and I wrote him a more thorough summary draft. The senior dr I saw afterwards then congratulated him and said it was the best, most thorough and helpful discharge certificate they’d ever seen. The first year dr and I laughed and kept quiet about the fact it was largely because the patient know themselves and their disease and had written it mostly themselves!!

Good luck xx

[Hoofprints in reply to Melba1]

Well done you for helping that doctor. They have a tough time of it as juniors. They give a pre printed discharge sheet out which they don't require me to sign. They have told me they have not written a diagnosis as they are not giving me one as they don't want to label me in case I have to come back in. Never heard that one before! Can't they just say they don't know what's wrong and then try to find out.

I've asked again for the bloods you mentioned. They refused saying it's not helpful to have bloods taken across two different trusts and that the other hospital will be reviewing me. Dr said wouldn't it have been better if I had just gone to the other hospital as I was being treated there - as if I had a choice in an emergency ambulance that took me to this hospital which is just around the corner to where I live.

Unfortunately they did definitely speak to one of my consultants in immunology, not a junior, that is why I am feeling so perplexed and let down. The Dr here is clearly cheesed off with me now, but I explained why I thought the tests would be helpful now, especially since they have not actually given me a diagnosis of why I've had severe headaches, abdominal pain , diarrhoea and on Friday vomitting. I've felt unusually rough for over a week now. If they can't say what is causing it, I don't see why they won't run the tests.😔