Patient S’s Journey – Antisynthetase Syndrome, Interstitial Lung Disease, Polymyositis, Dermatomyositis

Patient S – My journey started July 2013 when I was 37 years old. I already had Fibromyalgia. I was diagnosed with that in 1997 and managed that without medication. I worked full time with doing an office job which I travelled to by train. Then walked two city blocks. I began to notice that I was getting short of breath walking to my car and walking from the train station to my work. I was absolutely stuffed when I made it to my desk. I also started to develop a rash on my upper arm than was very hot to touch. Over the coming weeks I was really struggling with fatigue. I knew something was wrong and I went to my GP and had many blood tests and everything came back clear. My shortness of breath was getting worse and worse. I was now having to stop half way through my walk to work to catch my breath.

I would sleep on my way home on the train. I only had enough energy to get home, eat dinner and then shower and bed. Then I repeating everything all over again. Until one day I went and saw a nutritionist as I was very overweight and I was trying to lose weight. She works alongside a GP who took one look at me and said something is wrong you should not be that short of breath. She wrote a letter to my GP and told her to refer me for a chest x-ray. So off I went to my GP. She referred me for a chest x-ray.

The next day I went and had the chest x-ray. The man that did the x-ray told me that he needs to go and speak to my doctor and for me to take a seat in the waiting area. My GP called me in and said I have to go to hospital. She needed to write a letter for me to take to emergency. She said for me to go home and pack a bag for hospital and come back to her on my way to hospital which I did. My husband took me to hospital and I told him to go home as we had young children and I will ring him to keep him updated.

I remember being in the cubicle in the emergency department and explainingto the doctors my symptoms. I needed to go to the bathroom. The nurse helped me out of bed but my legs were so weak I had trouble walking. So the nurse said this is not a good idea and that I go back to bed and they will put a catheter in. After that I don’t remember much until I woke up in the intensive care unit. I was told that I went downhill fast and the doctors told my husband to prepare himself for me not going home. At this stage thedoctors still didn’t know what was wrong with me. I was transferred to a bigger hospital. Lucky that one of the Rheumatologists had seen a patient with the same symptoms and arranged a blood test and I was diagnosed with Antisynthetase Syndrome. This is an autoimmune disease which includes Interstitial lung disease, polymyositis and dermatomyositis. I had a muscle biopsy done and many many test for my breathing. I was Anti-Jo1 positive with my blood test. I started on 6 cycles of Cyclophosphomide.

At this stage I was starting to have physiotherapy in hospital as I had to learn to walk again as my legs were so badly effected with the myositis. I was still on oxygen as well. My muscle biopsy results were inconclusive. Over the following few weeks while I was still in hospital things were getting better slowly. After five weeks I was discharged to a rehabilitation centre.I wasthere for a few weeks until I got a fever and the doctors were worried that I had an infection. I knew I didn’t unfortunately it was just a usual symptom of my disease. So back to hospital it was so frustrating have such a rare disease the most doctors had never heard of. The doctors went over everything and I was right it was just a fever not an infection but it took a few days to get to that. Got discharged from hospital and rehab after 9/10 weeks. This seemed such a long time to be away from my husband and children. I went home with various aids hired through occupational therapist at hospital. This stage I was having having physiotherapy at home and I was thinking about going back to work.

I went back to work which was great but at the same time it was very hard physically. I was still having Cyclophosphamide infusions. My inflammation reading in my blood tests were still very high. Over the next two years I was admitted to hospital around every three months with high muscle inflammation and muscle weakness. I had IVIG infusions once a month for six months. During this time I was taking many tablets and my daily dose of prednisolone changed constantly. By this stage I was really struggling to get to work. I went on sick leave from work. I ended up on income protection and applied for Total Permanent Disability claim through my superannuation as I realized I could not return to work as this disease had really taken over my life/body. I had to quit my job of 15 years that I loved. That was so extremely hard and even today I still miss going to work and struggle mentally as I have always worked full or part-time since I finished VCE in 1994. My lungs have been stable for the last couple of years.

My Myositis and muscle inflammation has been the hardest to get under control. I have been on Rituximab infusions for the last two years and it has been the only medication/infusion that has finally worked for me and the doctors have finally got my illness under control. But in saying that every day is hard. I get short of breath very easy thanks to the scarring on my lungs. My legs are weak thanks to the myositis. This changes alot. The higher my CK levels the worse I am. I also have bone density scans every 12 months and have infusions for Osteoporosis because of the high doses of prednisolone I have been on for the last four years. Yes the side effects are not good but what can I do. I have had lots of physio over the past few years as the muscle weakness has taken over. My fatigue has been hard to deal with along with the chronic pain. Since I don’t work anymore I do volunteer work which I enjoy as it gives me something to look forward to and keeps my brain active.

Since 2017, things have been going along pretty well. I see rheumatology about every 3 months and have blood tests to keep an eye on my CK, ESR and other things. I have chest X-rays plus other tests to keep an eye on my lungs prior to seeing my lung specialist. I have had a few chest infections which have been scary and I have been close to being back in hospital. My last Rituximab infusion was over 2 years ago now and rheumatology is not in any hurry to give me another one.

It has been almost 10 years since diagnosis and I have learnt a lot about my disease. There have been some very hard times but I will keep putting one foot in front of another each day as I need to be here for my husband and children who have all seen me at my worst.