Crohn's or lupus?

[MattLuus1973]

Hello -- I'm wondering if anyone has a similar experience to me? I've had symptoms of real joint pain, severe intestinal pain & fatigue for about ten years or more. Five years ago I was diagnosed with Crohn's, eventually. My symptoms are odd: pain and tiredness, not bowel problems. I was never really convinced I had crohn's but capsule endoscopy confirmed a stricture. After some time on Azathioprine which caused some liver problems, I was moved to biologics, which has reduced my intestinal pain but not eliminated it. BUT I still have a lot of joint pain, fatigue, brain fog, and a facial rash in the sun. I also have reynauds and restless leg. My GP thinks I have lupus. Initial blood tests results are borderline. The consultant said "I think you have lupus" but I can't diagnose it based on these results. I know from Crohn's that diagnosis can take ages but I'm not sure how to proceed at all. I'm sure all these diagnoses are interrelated and our immune system is bigger than one condition. Have no idea how to proceed or even whether or not to bother. I'm struggling but don't want to have another illness on my records if there's no hope of curing it..? Should I just jog on.. Anyway, any advice from you wise people would be gratefully received

[KayHimm]

You sound like a complicated patient. For your GP to be fairly certain of lupus, you likely have a classic facial rash. Did he mention getting a rheumatology referral?

Your GI issues won’t be negated but eventually they will decide whether you have lupus with GI symptoms or both both lupus and Crohn’s.

Joint pain goes along inflammatory bowel disease, I think.

It may take time to see how you evolve. I know that is not what anyone wants to hear. But these diseases do take a while to declare themselves. They can continue to change.

Hope that helps. Do ask about the rheumatology referral.

K

[MattLuus1973 in reply to KayHimm]

Hi there

Thank you.

Yes, I have a rheumatology approval so we will see how that goes! I should have mentioned that!

I think it will all take time -- I'm sued to that -- but just interested to hear if anyone else had navigated this course...

Thanks again for replying. Much appreciated.

[Barnclown in reply to MattLuus1973]

Hello Matt...just a few ?s cause maybe we have something somewhat in common - Am 67 & I have infant onset lupus + am seroneg for all my AIDs inc the SLE & i have what my consultants are calling a crohns-like enteropathy (for which am on long term EEN under tertiary gastro care):

-are you in the U.K. with the NHS?

-does your hospital give tertiary care?

Hope you get this figured out before long

🤞🍀❤️ Coco

PS my husband if 30+ years has early onset Crohns, so am fairly clued up

[MattLuus1973 in reply to Barnclown]

Hi Barnclown,

Thanks so much for getting back to me -- yes I'm in the UK with the NHS but I'm not sure whether my hospital gives tertiary care. I've sort of bimbled through all this with painkillers but realising I need to be more proactive and it's not going away

Sorry you and your husband are struggling as well

Any wisdom gratefully recived

[Barnclown in reply to MattLuus1973]

Thanks. So, do you know if the rheumatologist looking at your test results is actually experienced with lupus diagnosis, because many rheumatologists are not aware of the finer aspects/significances of interpreting results when patients are seronegative, eg below range complements &or lymphocytes

Take heart, cause I have good news:

My husband is actually in great shape, am happy to say: after 40+ years on prednisolone + a series of major abdominal surgeries, his Crohn’s seems to have gone into remission...he has been discharged by gastroenterology & the only meds he is in are for the results of all the surgery his ileocecal stricture

And I’m doing very well on all the meds I take for everything, including the EEN

Yes both of us have had to work hard with our medics for years to achieve this, but hey: here we are 🥳

[MattLuus1973 in reply to Barnclown]

Thank you for your thoughts- I will check that. Good advice & appreciated!

I'm so pleased to hear that you and your husband are doing well! What a result, finally.

Onwards, forwards!

Very best of luck

[Barnclown in reply to MattLuus1973]

Thanks & Good Luck.

Have you seen the Lupus U.K. website’s Centres of Excellence page? In case not, here’s the link:

lupusuk.org.uk/centres-of-e...

“The LUPUS UK Centres of Excellence award scheme is designed to recognise and reward specialist lupus clinics that offer a high quality of care for people with lupus and to ensure that these standards are maintained. We hope to award more centres with this accolade in the future, meaning that more people with lupus will receive better care and hopefully improved outcomes as a result.”

[Jmiller623]

Hi Matt. What biologic did you start? If it’s a TNF inhibitor like Remicade/infliximab, these have a risk of inducing lupus like disorders with positive ANA. Discuss with your prescribing doctor. This is a real phenomena.

academic.oup.com/rheumatolo...

Crohns and UC are also associated with spondyloarthropathies so maybe ask to be checked for HLA-B27 as well. If your joints swell, maybe you could ask for an X-ray or something to make sure you aren’t developing arthritis.

[MattLuus1973 in reply to Jmiller623]

Thank you - I'm on Adalimumab, but will look into that. So hard to separate the symptoms! Thank you

[Jmiller623 in reply to MattLuus1973]

No problem. It’s all TNF inh including adalimumab.

journals.sagepub.com/doi/pd...

It’s reported as a rare side effect but I think it happens more than we think. My mom has Crohns and went on remicade. Worked wonders for her but she also had to stop due to it causing nerve issues.

I think rashes and brain fog are more likely from induced lupus. Joint pains could be from a legit arthritis on top of your Crohns. This should be worked up. Fatigue is common in autoimmune disorders. Your overactive immune system eats up tons of energy.

Hoping you find some answers. Talk to GI. They should definitely be aware of TNF inh induced lupus. It’s not unheard of. Ask to see a rheumatologist about your borderline lupus labs and joint issues. Some parsing out needs to be done.

Take care. Sending hugs. ❤️xx

[MattLuus1973 in reply to Jmiller623]

Thank you so much -- that's really helpful. I'm really touched you took the time to respond. Thank you