Ok so I go to the ER yesterday was there for 7hr.. I told the staff my issues, battle and fight and that I am currently being worked up for Sjogrens, Lupus, & RA. I've been DX with FM already... I show pics etc... So they did chest X-ray because of breathing pain that was ok per the report... But if I'm in pain crying because I can't get out my bed with fatigue etc due to all of this why would these idiots not run my blood for ANA, DSDNA, DSDNA, SM ANTIBODIES ETC???? Noooo he runs my blood for a bunch of things that have nothing to do with my symptoms. Then he tells me my labs are normal and gives me 50mg of prednisone there before I left. I get up today and read my labs, Creatinine is high, ketones in urine, and gfr is low... I'm no genius but I researched this and all these results/labs indicate early kidney disease... So how is my labs normal???? I know ketones are not good!!! But I feel 10x better than yesterday.. Your thought on this lupus family???? Also I found this sore in my nose , it doesn't hurt but the idiot ER doctor told me it looks ok... Ok??? Sores in the nasal cavity is not ok it's indicative of something more especially with the mouth sores also....
Lupus,Sjogrens,RA, FM
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winterbaby07
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GRRRRR😠that was a BAD do! Others with more experience will give you better replies than mine. I just want to say: am feeling for you & can v much relate to your frustration & pain. This diagnosis & treatment process is so often so tough. Am glad you're feeling a bit better...do you think that's the pred injection helping (good old pred)...every time there is a positive response to a med this counts towards diagnosis....I forget: what meds are you on now? and what meds have you responded well to? Do both topical & oral corticosteroids usually help you?
I've responded well to prednisone currently on 50mg tapering dose. But it has not really helped with fatigue long term ... I had to crawl from the bathroom last week before the prednisone.. But I'm still in horrendous pain at night, what steroids/meds help with inflammatory and pain??? also motrin800 which is bothering my belly lately.. Also VitD 50,000 mg 1xweekx12weeks,
I hope you'll let your GP know if your pain is unbearable..asap
You're on the road to diagnosis & effective treatment...this is a process which can take some time. Bit by bit your Drs will learn more about your issues via tests, scans etc, and also by how you respond to the meds they try you on. The important thing is to keep a log of your meds taking & reactions, + continue to take pics of visual symptoms...so that you can help your Drs to feel increasingly confident of their diagnoses & of the treatment (inc meds, physio, whatever) that can help you most with the least risk due to toxicity, side effects etc. this is always a risk/balance problem. Once any emergency scale issues are stabilised, this process has to take time, as any trial & error process does. If you have a chronic incurable, relapsing & remitting condition like lupus or sjogrens, you're in this for the long haul now
All that is why there isn't much point in thinking too much about which meds you might be prescribed for inflammation & pain. You need to stay close to your Drs about this, especially your GP...and meanwhile I suggest you go to the Lupus UK website:
LUPUS UK is the only national registered charity supporting people with systemic lupus and discoid lupus and assisting those approaching diagnosis. LUPUS ...
What Is Lupus? - The Symptoms - Fundraise for LUPUS UK - Treatments
Check out the Lupus UK book store & info leaflet lists...then gradually familiarise your self with the various types of prescriptions used to treat lupus. If on Monday it's confirmed that lupus or connective tissue disorders etc are relevant in your case, then talk to your Drs about meds...it helps if your GP has experience of lupus & connective tissue disorders, if not, then see if you can find a GP who has. Does your rheumatology dept have a specialist nurse? Contacting thus sort of nurse at the right moment can also be v helpful
You're making a good start. I admire how conscientious & empowered a patient you are. And now you'll be working on getting a productive relationship going with your Drs. This treatment & diagnosis process is a collaboration between Dr & patient. Both patient & Dr need to bring their best selves to the collaboration, and be willing to work hard at it in order to get the best from this relationship.
Sorry to be this gothic but you need to get yourself to a nephrologist (kidney specialist) ASAP ! As in yesterday. You need more than an ER or GP doctor at this point.
Do not panic, that dose of prednisolone will more than definately kick start the SLE treatment you need, but for the longer term you need a nephrologist.
They are pretty savy at treating lupus too. Sometimes better than rheumatologists.
I've just been through a bout of lupus nephritis myself. It was quite serious, but they used a mix of Micophenolate mofetil & prednisolone and things are close to normal again. Quite amazing given the state of my kidneys before treatment.
As I say, your treatment has already begun - (nothing better than prednisolone) but don't muck about with this.
Some ER drs are just on a short rotation and are not experts. They are also sadly not given the time to look deeper. Take your results to the gp. You are entitled to a referral to a nephrologist. Don't ask, show the results and tell them. Good luck.
I don't know anything about kidney disease but I often have ketones in my urine - it can be a sign of not eating enough amongst other things. Hope this reassures a little.
The A and E are not really there for diagnosing long term illnesses, just to treat immediate emergencies. You need to get your doctor to refer you to either a Rheumatologist or Nephrologist. Also ketones more likely indicate that you are burning fat due to not eating enough or have a low carb diet. I had ketones in my urine non-stop throughout my pregnancy and will always have ketones in my urine if I have a urine test before i've eaten breakfast or lunch.
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Is there such a thing as total remission in lupus ?
Diagnosis update for you all nearly a year on
Looking for a diagnosis.
Looking for a rheumatologist in forth valley 
