I am a husband to a beautiful wife called Jenny. She has recently been diagnosed with ASS, though we are still waiting on the exact, specifics to precisely identify the 'type' and then treat with immunosuppressants.
Currently, Jenny is in hospital (her second visit over the past month). She is unable to walk without a frame and then limited to a few metres. She is very breathless too. The ASS has effected lungs and muscles along with vasculitis in the hands and feet, but that appears to have resolved now. The predisone(?) steroids along with some other drug appeared to blast the vasculitis but left Jenny very, very swollen, in her legs especially, and seemed to mark an increase in muscle weakness, the myositis I assume.
She is currently on her last day of immunoglobulin (5 days) and that appears to have eased the cough, fluid on legs easing and CK (?) muscle levels at 300, which is pretty good we are told.
She still has limited strength and a lot of pain. Unsure whether this is the steroids (20mg daily for the past 2 weeks but was IV 1g for a couple of days in hospital before tapering to 80, and 40 now 20). She suffers from high temperatures and sweating once or twice a day and the hospital are unsure whether this is an infection or the inflammation - they will not begin the immunosuppressants until infection is resolved or ruled out.
Although Jen has had a cough for some time - 5 years (doctors seen frequently but they couldn't see an issue and diagnosed idiopathic cough) it's only the last 3 moths that have seen the symptoms really esculate.
So I'm trying to find out what I can about ASS. It appears a very individual experience for everyone, so I know that any responses can only be generalized. I've read quite a bit and see that many, many people are able to live a relatively normal (or even normal) life with ASS
I just wondered and assumed that this first, big flare up is often a bad one until it can be brought under control? Also, my wife suffers from severe anxiety, any advice to help ease this? She is spending 95% of her waking time in a state of fear - mostly of the unknown I think . She is to be transferred to St Thomas's hospital in London under the care of Professor David D'Cruz in the next day or so. I understand is an expert in this field.
Thanks for your time