Doctor suspecting Lupus, advice please

Hi wynter

I am sorry to hear that you are in pain. My heart goes out to you. Lupus has to be diagnosed through blood test. First the ANA test and then if it's positive, the doctor will order the anti dsdna test, anti sm test, etc depending on what pattern of your ANA. It's a very difficult, long and frustrating wait for a diagnosis. There are four criteria out of eleven criteria to be fulfilled.  If you could not fulfill the four criteria but if the doctor highly suspect lupus then the treatment will start immediately. They call it connective tissue disease at this point because they can't call it lupus yet. The best doctor to see would be a rheumatologist. Have you gone to one yet? 

I started with knee pain which my orthopedic diagnosed as osteoarthritis. But the pain won't stop there. It travels to my hips, my shoulder, my wrist and now I am having chest pain too. I am not diagnosed as lupus yet even though my ANA is positive. But my rheumy has given me medicine for lupus because he highly suspect that I have it. I managed to get by without steroids because I am using biologic treatment (Belimumab).  it's also because I am being diagnosed early so I am still in the early stage of the diasease. I learn to just ignore the pain sometimes, if it's not too serious. I don't have kidney involvement but from what I heard there is generally no symptom at the early stages of lupus nephritis. The most common symptom is leaking protein/blood in the urine or if it has become worse, swollen feet. 

Hope this helps to assuage your concern but I hope you could get to a rheumy for diagnosis. Let me know how it turns out. Hugs. 

I don't like steriods either. They thought I had Lupus when I was younger. But we never finished looking and testing since I had to always go out of town for the doctor and my insurance changed to where I could not get seen without paying a lot more.

And I have Hashimotos. I take thyroid too. This was more recent when I was diagnosed with that.

How did your blood tests go?

I hope you are feeling better and have some answers!!

Hi

I was ill in November and when strange symptoms continued an ultrasound and chest x ray revealed both a large gallstone and some lung fibrosis with ongoing inflammation. Was admitted to hospital with suspected gallbladder infection but they were more concerned with my breathing. Eventually a junior consultant told me that one particular blood test had identified an auto immune condition. I forgot the name but when I googled it erythematosis rang a bell. At my check up today the senior consultant seemed unwilling to confirm it. He's an old fashioned type who doesn't believe in giving the patient too much information but I will persist. Maybe they are just not certain yet

Everything fits however as SLE can affect the lungs. The first doctor also said it could affect the muscles and asked if I had had any problems. Also I read that the condition can be caused by a PPI like Lansoprazole - which I was on for my ongoing stomach issues.

One day I scratched an itch on my arm and it burned like I had put it in a fire. We suspected a drug reaction and stopped the Lansoprazole. Then my whole torso started itching, stinging, prickling, with crawling sensations under the skin. Was in a terrible state. I couldn't sleep and used to sit wrapped in a damp cloth to try and calm things down or slather on menthol cream. The GP tried antihistamines with no effect. Some fingers became really painful by evening and when out in just moderately cold weather, my hands just couldn't stand the cold. Never been a one for gloves but I wore them and warmed them up first!

When in hospital I developed terrible nerve pains - like having a red hot poker laid on your skin - back and chest. Was on morphine and Amitriptyline for that. No longer on morphine but they added in Gabapentin and am ok for now.

On steroids till the next set of tests but the dose got halved today and will be reduced further in a week.

Still waiting for confirmation that I have SLE induced fibrosis but thought it might be useful to go through my symptoms.

Will be following this thread.

PS I have hair loss too!