Changing autoimmune diagnosis… of horses & zebras, When is RA not RA?
@stickywicket @frogmorton @Hairobsessed123
So here’s the latest, just come from seeing my rheumy and sitting in the Wellcome Cafe…
Brief summary since being diagnosed in 2021, and put on max MTX& HCQ (25mg/ week & 400mg/day) … getting numerous infections as a result of the immune suppression and still barely coping… to suddenly not needing the immune suppressants after a 2 week course of a specific antibiotic…
Got my joints checked… no RA after 2 months going on 3 without meds, just the antibiotics, and limited food intake, no abrasive food or any fibre or any probiotics & living on Complan. (Imagine a cut and abraded arm needing to be kept clean).
However it’s not all roses… I do have dull persistent abdominal pain on the right, there is a sense that the joint inflammation while very slight, does exist, but not bilaterally as in RA, but only on one side or other.
Rheumy took an armful of blood and based on the amazing strength of my grip without meds was persuaded to refer me to a Gastroenterologist.
He asked me what I thought it was… I said it wasn’t RA horses, it’s likely Crohn’s in a bad way giving the appearance of rampant flaring RA, and on me receiving my infection antibiotics , (which are the same for rampant Crohn’s) my symptoms were so dramatically eased.
So maybe out of the frying pan into the fire…
But at least I got a GE referral.
FYI - Crohn’s is also not well understood but it often develops in those susceptible after a lifetime of junk food, sugar and sweetners which allow pathogenic bacteria to flourish, causing the gut to become highly inflamed and be at war, end point being surgical removal if conservative treatment does not work. Sadly if misdiagnosed the high immune suppression for RA allows Crohn’s to worsen as the pathogenic bacteria flourish with the gut defenceless. Reducing these bacterial colonies results in a dramatic reduction in symptoms. Typical symptoms are abdominal pain, irregular movement, minor one sided joint pain but well managed Crohn’s only needs minor immune suppression.
So my RA horses 🐎 may be Crohn’s zebras 🦓 , which only gallop like horses when in a bad state.
Ask away!
The Wellcome Cafe!
Comments
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@Arthuritis thats good your rheumatologist is listening to u !
it’s very interesting 🧐 isn’t it !
There are links with ibs ibd and inflammatory arthritis!!
I have ibs and on diagnose this was noted !
I am still pain free ! Also the hot sweats which started on methotrexate have disappeared and my monthly menstual have gone back to normal !
I hope you get some answers ! I’m taking each pain free day and enjoying myself also off the anti depressants!!!!
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@Hairobsessed123 I would not go as far as declaring he was listening, he was still vehemently declaring my serology showed I had RA, it never occurred to him to think of other causes, like rampant Crohn’s which usually only has mild joint symptoms on one side or the other, rarely both, unless it’s gone nuts. And guess what the standard treatment for rampant Crohn’s to bring it to heal? Antibiotics… and the exact one I’d been begging him to prescribe for me, but he refused, declaring the antibiotics had nothing to do with RA, without even asking his immunology or GE colleagues what they thought and ask for directions… oh well… just like arrogant male drivers that won’t ask for directions even when lost! But it was hard to ignore that when I was on MTX I had a feeble grip which he’d tested, and I had to make numerous home changes, and 2 months after antibiotics and dropping MTX, my grip was strong enough to give his hands an extra firm shake! 😁
If you have IBS you def don’t want it getting into IBD. (Are you sure it’s IBS & not IBD?)
IBS can be managed to the point where it’s no longer a big deal with help from a gastroenterologist who understands the role of the gut biome. It is more about you not being able to tolerate certain foods because you lack the digestive gene and you don’t have the necessary gut bacteria to take the place of the absent gene.
Maybe you can get a referral to Dr Sophie Farooque, St Mary’s Hospital, Paddington, London.
Tim Spector (KCL) might also have some relevant material.
IBD is where your gut is at war with bacteria and is on the losing side as it can’t plug the leaks, and gets more and more self destructively inflamed.
The important thing is getting the RIGHT diagnosis EARLY!
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I"m not sure it matters whether you have horses or zebras as long as it gets the right treatment. I was once in the next hospital bed to a woman with both and she was suffering. The only other person I've known with Crohns had it from a young age and, knowing his parents, I doubt junk food featured.
Onwards and upwards and let's hope your good news continues
If at first you don't succeed, then skydiving definitely isn't for you.
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@stickywicket Thanks for the thoughtful discussion ☺️… normally I’d also think all’s well that ends well… but I think it does matter, depending on the impact of getting it wrong, as the treatment and progression against time are different for both, and the longer one is on the wrong treatment the worse the outcome for the real disease where many treatment options are no longer available. One needs antibiotics to effectively manage, and only mild immune suppressants while the other will receive no benefit from antibiotics but needs aggressive prompt suppression. Getting this wrong results in the condition worsening ie RA with insufficient suppression and useless antibiotics or IBD going rampant because the immune sys is so heavily suppressed that pathogenic bacteria flourish, and no antibiotics offered to manage the worsening condition as a result to permanent damage where surgery becomes one of the few remaining options.
Imagine if someone with Lyme had been treated for RA… symptoms are similar, misdiagnosis and getting the treatment wrong would have terrible outcomes.
Hopefully the person you knew who had Crohn’s had a good outcome.
My own guess on junk food is that it’s been clinically established that what you eat profoundly changes your gut biome, and sugar, high carbs and sweetners allow pathogenic bacteria to flourish, causing inflammation.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6363527/
If caught early (like many things) before defence? genes are permanently switched on, it maybe reversible (like type 2 Diabetes or Barrett’s) but once it gene switches start flipping surgery is the only option… but the latter is just my theory that would need to be proven/disproven but if it works then like any good theory it should predict useful outcomes. Like how to prevent the disease manifesting.
Smoking is also implicated in many of these chronic diseases, maybe that flips genes too.
Now it’s a waiting game… but I do enjoy the suppression free remission though! ☺️
Can’t wait for Dr A.I. …. Armed with the medical knowledge not just of a lifetime… but of EVERY recognised published experts life time! (And now clinically verified to have a better bedside manner - as evaluated by experienced medics)!
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Hi @Arthuritis
When I was first diagnosed with PsA I was put on sulfasalazine. I looked it up and the NRAS site stated that in it's current form it was first used for IBD and is still used for IBD and Crohn's disease - as well as for inflammatory arthritis.
I think what the last 3 years has taught me is that there's a good bit of medical guessing with regard immune mediated inflammatory diseases. My rheumatologist is based in a hospital with no A&E or admissions ward so each time I was admitted to hospital by ambulance it was to a bigger hospital and I was seen by different rheumatologists and rarely the same one twice since I wasn't their patient. I'd reckon it was easily into double figures the number of rheumatologists I saw and many had different views as to what was wrong with me.
When you consider there are over 100 different arthritis's and 80 odd autoimmune diseases - which in many cases affect the same parts of the immune system - I suppose it's not uncommon to be mis-diagnosed - or have multiple immune mediated conditions.
I hope things work out for you.
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Well I am so interested in this!
I have known two people with Crohn's one a lad of about 18 (doing really well)
and one the daughter of a lady who has PsA herself. - in her 20s I think.
Onwards and upwards @Arthuritis I really and looking forward to the outcome of your Gastro appointment 🤞
hahaha! Love it! '....clinically verified to have a better bedside manner - as evaluated by experienced medics'
Keep us up to date please
Toni x
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@frogmorton 😄As you have shown interest here is an interesting item from London’s Imperial College:
and here is an excerpt from JAMA (US version of the BMJ)
Comparing Physician and Artificial Intelligence Chatbot Responses to Patient Questions Posted to a Public Social Media Forum
John W. Ayers, PhD, MA1,2; Adam Poliak, PhD3; Mark Dredze, PhD4; et al
Eric C. Leas, PhD, MPH1,5; Zechariah Zhu, BS1; Jessica B. Kelley, MSN6; Dennis J. Faix, MD7; Aaron M. Goodman, MD8,9; Christopher A. Longhurst, MD, MS10; Michael Hogarth, MD10,11; Davey M. Smith, MD, MAS2,11
Author Affiliations Article Information
JAMA Intern Med. Published online April 28, 2023. doi:10.1001/jamainternmed.2023.1838
Key Points
Question Can an artificial intelligence chatbot assistant, provide responses to patient questions that are of comparable quality and empathy to those written by physicians?
Findings In this cross-sectional study of 195 randomly drawn patient questions from a social media forum, a team of licensed health care professionals compared physician’s and chatbot’s responses to patient’s questions asked publicly on a public social media forum. The chatbot responses were preferred over physician responses and rated significantly higher for both quality and empathy.
Meaning These results suggest that artificial intelligence assistants may be able to aid in drafting responses to patient questions
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@frogmorton I ’ll probably come back to you to ask about the young lad, delighted to hear he’s doing well, and wether he has any tips to share!
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@jamieA wow! Nightmare. It’s a shame the NHS does not make more use of simple technology to extricate itself from avoidable messes. To err is human and I have no problem with that. My gp prescribed to me penicillin based antibiotics that are contraindicated when on MTX, and made me horribly sick but as he humbly admitted, he’s only got a few minutes to each patient, and if the hospital prescribes stuff, he may not be aware of any contraindications. The gp runs his own prescription book, and so does each hospital, and never the two shall “talk” to each other. They both use the NHS prescription computer, which could easily be modified to be patient centric, so that it automatically does what machines are good at, check each prescription being issued for contraindication against others. But this would be a small boring manageable project, and the NHS IT group prefers grandiose projects that cost millions as that offers career progression, small ones don’t. Unfortunately most of the grandiose projects have failed and been written off (NPfIT cost £10bn and had to be written off) .
The situation in your case with a merry go round of rheumies each seeing you once and never again, each absolutely confident of their differing diagnosis and not even considering they *could be wrong* is what bothers me the most. It’s their over confidence in themselves, not seeing the reality as you do, that clinical diagnosis is usually a probabilistic best guess, not certainty.
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I changed my rheumatologist in early 2022 as the first one was as you describe. I've had 3 consultations under the new rheumatologist and staff and it's been very much better. The last rheumatologist I saw was a young consultant who actually said they were trying to do things differently from the 'fuddy duddies' of the previous generation of consultants. I've a friend whose daughter has just become a consultant and she rails against many of the older aloof consultants she comes across - so maybe there's hope for the future.
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That is really interesting sticky. i have been amazed at the connection between gut health and auto immune conditions.
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@jamieA That’s so wonderful to hear! Is the young rheumy available for consultation in London by any chance? Sadly the young ones often look up to the old ones for guidance but instead get indoctrinated with their narrow thinking prejudices. As one senior consultant at London’s Guy’s Hosp pronounced at an NHS conference to innovators in medicine “Where there’s retirement, there’s hope!” This was in relation to his frustrations and of his younger peers wanting to modernise and be more patient centric and adopt innovation and technology being faced with constant resistance.
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Hi, can I recommend these two websites to get useful and correct information about Crohn’s arthritis. I have had Crohn’s for over 30 years and it is now manifested in arthritis in many of my joints and also enthesitis. Crohn’s is a condition which can develop at any age and is autoimmune- very different from IBS. It often requires immunosuppressive drugs of varying strengths and often surgery- I have had three bowel resections. There is very little information about the arthritis aspect and I have tried to address this with Versus Arthritis and hopefully they will develop some resources. My Crohn’s, and the condition of many others I have known over the years with the diagnosis, had nothing to do with poor diet. A concrete cause is yet to be discovered, but as with all autoimmune conditions there possibly a family link. I hope this information is useful.
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Hi, can I recommend these two websites to get useful and correct information about Crohn’s arthritis. I have had Crohn’s for over 30 years and it is now manifested in arthritis in many of my joints and also enthesitis. Crohn’s is a condition which can develop at any age and is autoimmune- very different from IBS. It often requires immunosuppressive drugs of varying strengths and often surgery- I have had three bowel resections. There is very little information about the arthritis aspect and I have tried to address this with Versus Arthritis and hopefully they will develop some resources. My Crohn’s, and the condition of many others I have known over the years with the diagnosis, had nothing to do with poor diet. A concrete cause is yet to be discovered, but as with all autoimmune conditions there possibly a family link. I hope this information is useful.
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@SueG5 @Hairobsessed123 Hi Sue, thanks for these links, I had a quick look, and I found it quite informative.
What I have found is that when pressed inflammatory arthritis is known by clinicians in rheumatology to be triggered by environmental triggers in addition to idiopathic RA. (The Crohn’s website refers to this in the section “Other causes of joint pain” including the need to investigate fully and carefully - almost never done, usually it’s a cursory check to admit you into the dept’s treatment programme, happened to me at 2 hospitals- no one says you might need to be referred for further investigation to ensure all other causes have been ruled out).
This includes infections and drugs that you react badly to. In effect an alarm for “something’s wrong”. Unfortunately when diagnosing, these other causes are never investigated unless it’s an acute symptom eg drug injection resulting in RA symptoms. Often called Reactive Arthritis. (Also mentioned in the Crohn’s website, but nowhere else).
Both Hairobsessed123 and I found our RA symptoms vanished after a course of antibiotics. The closest explanation I have is that under certain circumstances pathogenic bacteria can flourish in the gut, and combined with a leaky gut can trigger RA. This is something being investigated at UCLH Research. The change in the gut biome is more likely if you are immune suppressed, and is different, in those who have RA. Prof Tim Spector (Kings College London) also provides insights into how much the immune system and the gut are interlinked, and while junk food and additives by themselves have been tested to not affect our own cells directly, they do alter the gut biome, and these changes are not necessarily to our benefit as they can then trigger immune system issues. The Kennedy Institute of Rheumatology at Oxford University (Prof Patrick Venables) also points to P.Gingivalis bacterium as being a likely trigger for RA, as it is one of the few oral bacteria that has citrullinating enzymes causing your immune system to mistake your own tissues as “foreign”.
That said, I have been referred to a gastroenterologist at my request where it is more routine to treat RA symptoms with antibiotics, and also to determine what form of IBD I might have and if confirmed be properly treated.
Hopefully research into Crohn’s will continue and hopefully a better treatment found.
I take hope in that before 1981, chronic peptic ulcers were considered a result of genetics and stress, incurable lifelong conditions, treatable only with continuous acid suppression using PPIs & Antacids. This was a very deeply held medical dogma, until Nobel prize winner Dr Barry Marshall upturned that dogma, and upset a lot of his peers and crippled a thriving PPI & antacids industry by proving it could be cured. We live in hope!
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