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Any help/advice for someone starting this journey

BT Message
13 Feb 2018, 03:43 PM


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




Daniel Taylor Message
16 May 2021, 09:49 PM

Hi B and Jenny, I was diagnosed with Antisynthetase Syndrome in spring 2021 following a period of one month in hospital. A month or so before being abmitted I had a continuous cough and I lost my appetite and became very weak. I visited doctors during the start of the Civic lockdown and they examined me and noted I had scarring on my lower lungs on both sides. I had never heard of scarring on lungs before. I was taking some kind of antibiotic for persistent cough but my condition had not improved. Over the next few weeks I just became Berglund and very unwell with severe cough. Eventually I had to call an ambulance and due to my oxygen level being very low I was admitted to hospital where I remained for one month. During the stay in hospital I began to use oxygen and ultimately became completely dependant upon oxygen from cylinders. Iost a lot of strength in my legs and hands. I had many blood tests and scans and following a small dose of anti cancer treatment Rituximab and one other as well as 60mg Prednisolone together with other tablets I started to feel better. I needed physiotherapy to stand and walk again. I was also able to enjoy food again. I left hospital and began a new way of living.Soon after leaving hospital I was on Mycophenolate and the dose of the Prednisolone was able to be lowered very gradually over six months to 10mg. Before I fell ill I was working nights supporting adults with mental health difficulties and for a few hours during each day I was building a stone wall so I was very active. I have been aware over the last ten to twenty years that my body could be adversely affected by physical and mental stress but I didn't think I was any different.  My new reality is that I have to watch my stress levels and be careful not to over stress my body. I have to pace my self and appreciate what I can achieve. I have been advised by my consultant that I am likely to remain on my present medication for four to five years. Daniel