Pooh bear (the wife) has been doing brilliantly since her SLE diagnosis in 2017. However, Since stepping down pred to 15mg at the insistence of a rheumy of the stuff she used to have has come back (fatigue, flu like, pains, heart probs, skin probs etc) but with something new ...
About a month ago she developed a severe (9-10 level when she moves) pain under her rib cage started of on right side and progressed to left side in the flank. She also has stomach bloating. It does get better with NSAID's and with increasing the pred and is worse when she moves around.
Pooh's had CT and ultrasound and shortly to have a gastroscopy - so far they have revealed nothing. The working theory is connective tissue ??
Has anybody had anything like this ? - any thoughts or pointers most welcome.
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jimbo1605
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Am V sorry Pooh Bear is having to manage all this...but am glad her medics are stepping up. USS + Endoscopic investigations are among the right first moves when these signs & symptoms are in action. Many of us have been through GI investigations...i’ve had my latest series of these over the past 3 years: each time i’ve needed GI investigations more wonderful methods have been devised eg last year i swallowed a video capsule that took pics from mouth through into my large intestine!
These latest gastroenterology investigations + my post GI tract response to my lupus & immunodeficiency meds have proven that my version of GI tract stuff IS due to my underlying immune dysfunction & connective tissue disorder diagnoses (SLE+PID+hEDS)...so i’m encouraged that Pooh Bear’s medics are considering these causes already!
Hope you’ll keep us posted as these investigations proceed
Thanks Louise-a for your reply and sorry about the delay in responding.
Pooh bear had a gastroscopy a week last week and it revealed gastritis erosive and barretts oesphogus still waiting for biopsy results. She has also stepped up pred to 25mg and started mmf and things are slowly starting to turn - more energy, less pain and hopefully this will continue.
Pooh was beginning to sound like that irritating depressive donkey but we are getting back to Pooh now.
Apparently its the abbreviation for myclophenate - trying to avoid trying to spell the stuff. Yes we are in a happier place not quite pooh sticks but getting there. thanks for your reply and interest.
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When do you know when things are serious?
My mum has small cell lung cancer and is going to have radiotherapy and possibly brain radiotherapy. Anybody know any experience with this
Do you HAVE to take meds?
Could this be Lupus?
