I’ve been having problems with my left hand - swollen, painful, unable to properly bend fingers, make a fist- and constant abdominal pain for some while. Some issues with right hand too but not as bad. Rheumi thinks this is telling that symptoms are not mirrored?
Added to this I’ve had low white cell and platelet counts for several years although that’s only just been put together. A full lupus blood screen was negative for lupus but showed low complement levels. Due to see rheumatologist again but her letter says not enough symptoms for lupus but I do have an autoimmune disease and she recommends treatment with steroids and the anti malarial lupus drug whose name I cannot spell....! So why recommend these if not lupus?
I’ve had scans and other investigations on my abdomen but no one can tell me why I am in constant pain. Left side below ribs. I’ve read could be inflammation of membranes or maybe kidneys. Anyone any experience with similar pain?
Thank you all for sharing your experiences here - it’s a great resource.
Because these drugs are used for a lot of different autoimmune disorders, not just lupus. There is usually no cure for any of them them so it is a a case of identfying the best form of management of the symptoms, Hydroxychloroquine is felt by many rheumatologists to be a safe starting drug and less powerful than some of the others. Steroids are very often used to get inflammation under control at the start and then they may be reduced, even withdrawn, if the other drugs work well. If they don;t, they will try something else - that is the only way really to identify what works best for you. What works for you might not work for me. It isn't like saying "This is being caused by Bacteria X and Antibiotic Y kills them off so it will cure your infection."
Thank you- this is all new and I guess I’m going to have to get used to not having all the answers. My appointment is in a couple of weeks so am just trying to prepare and arm myself with as much info as possible.!
Personally, I think accepting there probably are no answers is a good start! As you go on and get to know YOUR personal a/i illness you will learn YOUR answers. They may be similar to those for someone else and what you discover may help someone work their answers out but they will have subtle differences.
You could say you have SashaT64-syndrome - with its own peculiarities!