I am new on here and awaiting an appointment from Rheumatology after some blood results. My doctor suggested Rheumatoid arthritis however indicated it could possibly be Lupus. Also bloods showed kidney function is abnormal but not too concerning.
So for context i was diagnosed with crohn's around 8 years ago and on the back of that i was also referred to rheumatology. I was then told i had lupus on one appointment and on the next was told it was not so was discharged. I have managed and lived with Crohns for years now with very minimal effect on my life.
So back to the last few months i have been suffering with several symptoms which pushed me to get my bloods done. So listing my symptoms below i am thinking it is Lupus and not RA.
symptoms include:
joint pain and swelling in fingers, ankles and knees and hips
random swelling of lips
hair loss
rash on hands and arms
extreme fatigue
mouth / nose sores
SO anyways my question is has anyone been mis-diagnosed before and then turns out they are positive for the condition?
many thanks to anyone that replies. Jess
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jsacha33
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Yes, it is very common for people to have any number of diagnoses before arriving at lupus. You probably are wondering if your doctors are completely incompetent!
There are different ways this can happen. In your case it sounds like your doctors were suspicious of autoimmune disease and even questioning lupus. You already had one autoimmune disease. At the time you may not have had symptoms and blood work that indicated lupus. But that was at one moment in time. Now it seems your GP sees new concerning symptoms and wants you re-evaluated.
So many of us do not obey the text books. It will be interesting to hear how your doctors fit your Crohn’s disease into your total picture. I am pleased yo hear you have lived well with that challenge.
You can always seek out a second opinion with another rheumatologist if you don’t feel completely confident after this consultation. You may not be a straight forward case.
Hoping you get clarity soon. Know you are not alone. These illnesses are very hard to pin down, and it is particularly hard when patients are on a long road with multiple diagnoses.
So I was first Diagnosed Subacute Lupus, then Rhupus (which is both) then back to Lupus as SLE, then now its finally being pinned/DX as UCTD due to Scleroderma Antibodies and other antibody profiles but negative DSDNA and various overlap symptoms.
Your rheumatologist will know more and will do a full blood panel and xrays etc! The fact your bigger joints are involved looks at RA more than Lupus from my experience but Lupus also affects everything depending!! But just know there IS a thing called Rhupus! Your doctor will know best when he sees you too and they get more and more info and bloodwork and profiles on you. Mine took a year from when they started labs to kind of narrow it all down. So like 50+ viles of blood over the year and various symptoms and appointments then they put me in the hospital for 4 days in a row to scan and do all at once because it was confusing my rheumatologist.
Keep a diary of symptoms and find a Rheumy that is not fixated on positive blood results. I am a negative Lupus and Sjogrens patient. I had a positive dsdna once and I am sure many rheumys would have said that now I don't have it but the symptoms are there in abundance and hydroxy has dampened down my immune system and therefore lowered my positive blood result to negative. Have a look at one of the foremost experts talks on Lupus uk or you tube, Dr Kaul. See attached note. Don't take bloods as the be all and end all of an autoimmune condition. Many top Rheumatologists now look at symptoms and blood results and recognise this. Go armed with info from here and Lupus UK and other expert Rheumatologists. Of course you may not have Lupus but your symptoms should confirm if you have it, not necessarily the blood tests. We have to learn so much ourselves and don't expect that a Rheumatologist will know the latest in a particular field of Rheumatology if its not their specialism. Good luck.
Have been tested a few times over the years for RA and lupus due to raynauds syndrome in hands, skin rashes with loss of pigment, random swollen toe 2 years ago where it was felt it was some kind of inflammatory arthritis. RA factor and lupus negative.
Then nothing till earlier this year when I felt increasingly tired, off colour, repeated cold sores, nose sores etc. Then I woke one day with neck, knee, pain stiffness in hands etc. I felt awful, so fatigued and unwell. GP did bloods showed inflammation, thought polymyalgia, prescribed prednisone and referred me to rheumatologist.
I went privately to see rheumatologist and 10 weeks along now and I’ve had 4 weeks of steroids to rule out polymyalgia, I felt better but stiffness, swelling and pain in hands, wrists elbows returned as soon as steroids finished.
I had an ultrasound on hands wrists showing severe inflammation. Bloods consistently show high inflammation markers so he’s now diagnosed me with seronegative ‘inflammatory joint disease’ given me a steroid jab, 15 days of prednisone and 200mg a day of hydroxychloroquinine. Bit concerned reading about allergic reactions etc but so far I’m ok. Also heard about difficulty getting the meds. I had to pay for private script.
I’ve definitely kept a record of symptoms, I’d felt sure it was lupus.. I know it’s very difficult to diagnose these things easily.
I’m now being referred into the NHS so I wonder how this experience will be.
I have Crohn’s and vasculitis and looking at your symptom list, some could also be be more unusual presentations of Crohn’s. (Mine doesn’t present like that but my friend who has more severe Crohn’s used to get really swollen lips almost like they’d been stung like a bee, plus joint pain, swollen joints, nose and mouth sores before his got under control. Flagging as it took a while for his doctors to pick up that it was Crohn’s doing that). The kidney results are unlikely to be Crohn’s though.
If you have one autoinflammatory condition, it’s not unusual to develop another, but getting the second one diagnosed can be hard, as AI conditions usually have overlapping general symptoms like joint pain and fatigue. It might take them a while to rule out each one individually and land on the “right” answer. Bear with it, be persistent and if they tell you it’s not lupus (or RA), ask them to explain how they can exclude it and what other conditions are left to exclude.
If it’s lupus, a connective tissue disease or RA, the treatments could end up overlapping with your Crohn’s as sometimes the same medications can work for both so I would recommend asking that your rheumatologist or nephrologist loops in your IBD specialist. My vasculitis treatment hid my Crohn’s for years, but luckily I’m now on treatment which is keeping both under control at once. It’s worth asking them if any of your IBD meds could influence the test results (though I would not stop taking them without speaking to your IBD doctor).
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