My original post was about 4 months ago and was quite popular so I thought an update is overdue.
As you may be aware my rheumatology doctor accused me of self-harm. Though she apologised by letter twice, both apologies tried to blame me or suggest the only thing she did wrong was not making me aware she thought they were self-harm scars at my appointment. Honestly though most suggested to be escalated further I just couldn’t be asked as it became long-winded and seemed to get me nowhere. I was referred to a different hospital and now seeing a lupus specialist. This truly has been the best thing that has come from all this. I did get a couple of comments mentioning hyper-mobility. Though I didn’t mention this at my specialist’s appointment, with a few bends of my fingers and wrist he told me I do have hypermobility. So this does explain the bruising easily and certain swelling.
Surprisingly as well I was diagnosed with SLE, and no blood tests were required, straight away. I hardly said anything he looked at my joints and medical records and told me he thinks UCTD should be removed from my diagnosis as I have lupus. My original rheumatologist has been arguing with me for the longest time about undifferentiated connective tissue / systemic lupus being my diagnosis. I think this was because of my previous blood tests and to her, I don't display enough symptoms. My new specialist believes I display enough symptoms and display signs of multiple autoimmune diseases. He also told me that azathioprine which was given to me by my old rheumatology doctor, may not be the best medicine for me. Immune suppressants may not work in my favour for the type of joint swelling I get. I agree with this as I have been on and off it for the last 4 months and seem to keep having infections, so I have to stop. We have agreed to give it another 3 months trial, if I see no improvements we will look into alternative medications. He also made me aware that this may be hard as there aren’t many options.
This was the first rheumatology appointment I felt listened to, that I did not have to over-explain myself and he understood most of my symptoms. He also could tell me symptoms I had forgotten at the moment, like brain fog. I have felt gaslit previously mentioning brain fog at my old rheumatology doctor would suggest it’s my be from childbirth or that she doubts is as bad as I make out.
My biggest takeaway is don’t be scared to ask to be referred elsewhere, highly recommend a hospital that specialises in rheumatology and has a lupus specialist.
Wondering if anyone here with lupus has been told immune suppressants may not be for them and what was suggested instead?
Pneumonia & immune suppresants?
Query re Rituximab and being licensed treatment for lupus? 
Feeling nervous about rheumatologist app tomorrow?
