Sitting in a cafe with a friend over coffee having a chat about the struggles of daily life. He is my go to person when I need advice or just a good kick up the butt. Someone I feel comfortable enough to speak to with just about anything. So here I am complaining about the anxiety of business, kids, uni and everything else I have to deal with on a daily basis. He starts to prioritse my tasks then he stops and says lets talk about the one one thing you've never mentioned, the most important thing. Your illness. You see I live with a chronic illness and during our mid afternoon chat whilst going over all my struggles I never once mentioned how I'm doing all this while trying to deal with auto immune arthritis and there is one thing that can have a major impact on PSA (psoriatic arthritis) is stress.
Psoriatic Arthritis is a type of arthritis that casues inflammation in and around the joints. It can affect people with the skin condition Psoriasis, however not everyone with psoriasis will develop PSA and vise versa. It is a long-term condition that causes pain, swelling and stiffness in your joints and can also affect some of your organs. I was diagnosed with PSA half way through my second pregnancy and was relying on steroid injections to remain mobile. Early detection is important to reduce the risk of long-term damage to your joints. I remember being affected with psoriasis when I was 10. I started to get red scaly patches on my scalp that would weep and bleed when I scratched them. At that age you have no idea of the long term impact a inflammatory disease will have on your life.
Some symptoms of PSA include
Pain, swelling and stiffness of the joints
Pitting of the nails
Swollen fingers and toes
Pain in areas where the tendons attach to the bones
Pain in your heels
Pain in your back, neck or jaw
Severe fatigue
I started to get a lot of pain and swelling in my knee 10 weeks after giving birth to my first son. I remember visiting my doctor for her to tell me it was probably water retention or housemaids knee. Is that even a thing now? I was a new mum the chances of me being down on my knees for long peroids of time where slim to none. So I decided to get a second opinion. I went to A&E for an xray and I was referred to orthopedics. After a few tests and xrays I was then sent back to my doctor. Some time had past and the swelling had not gone down so I was hobbling about with a new baby and a big fat swollen knee. I found I was pregnant again in April 2009 and some time after that I was referred to Rheumatology. After many visits with various specialists I was diagnosed with Psoriatic Arthritis (PSA). This type of arthritis can be difficult to diagnose because there is no difinitive test for PSA. Diagnosis is made through various tests such as x-ray, MRI, blood tests, medical history and physical examinations. I was scared but relieved at the same time. At least I knew what I was working with. Little did I know how quickly my life was about to change.
I was given steroids to cope with the remainder of my pregnancy and the specialist was keen to get me started on disease modifying drugs to slow the disease down as it appeared to be quite aggressive and by this time I had multiple joints affected. I decided I wanted to breastfeed my son so the medication would have to wait. I managed 6 months before I had to give up due to the pain of the disease. I was offered a drug called Sulfasalazine and diclofenic which is normally the first set of medications the NHS in the UK will offer. I had little response to these drugs and after around 6 months I was offered Methotrexate which is a chemotherapy agent and immune system suppresant. This works by reducing the immune system to try slow the disease down but the side affects where horrendous. I lost so much weight I was only 6 stone and my hair was thinning. I would vomit before the medication even went into my body. I was advised I had to have tried at least three disease modifying drugs seperate or together before I would be trialed on another drug that was available so I was put onto Hydoxychloroquine which had no affect. By this time I was getting so annoyed at everything. My disease was still very active and I was getting 80mls steroids injected into various joints. This should have given me 6-8 weeks relief and I was getting 4 days.
Life had become very difficult. I was in pain everyday, it affected life with my kids because I was restricted to moving. My 4 year old son was helping me dress and I had left a job that I loved. The isolation you feel living with a chronic illness is terrifying. You feel that no one quite understands what you are going through. Close family members would see you in pain and ask "what's wrong now". Speaking with other PSA sufferers that is one thing they find most frustrating. PSA comes under the term invisible illness becasue most of the time you cant see the disability. Its still there, underneath the smile and manageable days when you look good people forget your still sick your just managing it that day. I dived into a depression and I also kept that hidden too. I developed anxiety as it became more difficult to manage on daily basis. I needed help to wash, dress and sometimes just to prepare food. It was then I had a meeting with Proffessor McInnes of Glasgow Royal Infirmary. I had known him 9 years by now and we had a lengthy discussion about where I was with my disease. My liver had failed in the past, My knees were showing severe damage to the joint space, I had two bilateral jaw joint athrocenticis to repair sever damage that was stopping me from eating, I had depression and anxiety and I had two young boys. I needed a drug that would work.
I was put on a trial for a biologic. Biologics are one of the most advanced treatments available and are made up of living organisms. Rather than targeting your complete immune system they work by targeting specific parts that control the inflammation systems. The nurse came to my house that day and I remember I couldn't even lift my head as the inflammation had travelled up my spine into my neck I was bowled over. My hip was flexed 45 degrees due to inflammation and I was about to give up. She gave me my first injection and stayed with me for around an hour. I fell asleep for 13 hours and I woke feeling less pain. I didn't want to believe it. The nurse was due back in a week and I was still feeling ok when she came back. I had my second injection and again I felt better. I learned to administer it myself and after 4 weeks I had a follow up with prof McInnes. I remember being well dressed and had some make-up on, something I hadn't done in a long time. When he seen me he put his hand up and said "stop" I thought I had done something wrong. He said can I just say thats the best I've ever seen you look. I just hugged him and started crying. This drug changed my life. That was Ocotber 2015 and I'm still taking that same therapy. I has given me back my life. I have went back to uni to study an Honours degree in Business. I run a busy construction company and best of all my kids are able to do things they couldnt before. I still have PSA as it can't be cured but I can manage better on a daily basis. I still feel pain everyday, somedays can be a struggle but I manage it better.
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