Hope you’re enjoying the snow (in the uk)!
So I had an amazing appointment with my immunologist yesterday - turns out he also works both in Rheumotology and immunology. Was very interested in my extremely lengthy family history of Rheumatoid Artheritis and other very unique ‘auto immune’ conditions....Fabulous!
I took my last two weeks of symptom/ reactions diaries all crossed referenced with food and blood pressure etc.
He took his time and went through them all and then did a thorough exploration of my family history. I had a physical, and he was intrigued by my Hypermobility and also had a good feel of the Parry Rombergs Atrophy on my head.
Then he said those amazing magic words ‘lets get you you on the right medication’ Hallaleulah!!
He believed that although my last two sets of blood have been negative, that they won’t always be and coupled with the aneamia and inflammation that I do have an auto immune disorder. The Perry Rombergs is believed to be one, but because it’s so rare they have very little information!
I may well need to have a bone marrow biopsy in the future. But, he’s happy to see how I respond to the medication first!
So, there I was sat in the consultants room nearly crying - 18 years this has been going on for and it’s taken just two appointments with this man to finally become listened to and treated!!!!
So, more blood tests and in 6 weeks I will be starting immunosuppressants. I’ve been given two options :-
Cyclosporine and azathioprine
Would really appreciate any feedback on the two drugs, as I need to make a choice...... although he did advise the cyclosporine he said it was my choice.
His words were “ you’ve been messed around enough”
I’m over the moon - I may finally begin to feel better - I know it’s not a magic wand, but it’s a start!!!! He said, many aspects of my symptoms fit into Lupus, Scleroderma and Mastocytosis but the medication is relevant for all. I’m so excited for finally pushing for the answers I need. Although, it’s not a definite diagnosis, it’s certainly a step in the right direction!
Thank you for your support and insight. This forum really helped!