Although I was initially diagnosed with PMR & GCA in 2017, I received another tag of SLE in 2018. Since then I have experienced increasingly more frequent episodes of angioedema, ranging from lip to mouth, tongue and throat swelling. The attacks are occurring more and more frequently and I am attempting control with Prednisone while trying to determine the trigger. Hence my dosage is up and down, from high of 75mg and lowest reached is 9mg. Whenever I feel I am making progress with the decreased dosage, I am hit with anything from complications of cataract surgery (Paracentral Acute Middle Maculopathy), to varying degrees of Lupus flares along with the angioedema.
My Rheumatologist says to get the Pred down. Immunologist says to increase to 50mg whenever I have mouth swelling and to get to ER immediately (I had to be intubated/ventilated on one occasion). I am managing to avoid the ER by just taking the high dose but I wonder how quickly a decrease our many experts on this site would advise in my current situation? I suspect that I have been decreasing too quickly over the past three months. Angioedema/muscle joint pain and swelling has resulted in spikes from my lowest dose of 9.5 to 75mg. Early March I was on 17.5 and I gradually dropped to 12mg. Over several days the above symptoms manifest with major throat swelling so up to 37mg last Saturday and 50mg Sunday; symptoms were resolving so I split the 25mg dose on Monday and am wondering what I should do today? My thinking is maybe 17.5 today and gradually decrease with fortnightly or monthly drops of 2.5mg until I reach 10mg? I will be talking with my GP later today (I am in Australia) but any advice from you wonderful people would be much appreciated.
I hope and pray that you keep safe in these crazy times. The Queen said it all!