Blog post 6 - Episode 5: Moving to an AS diagnosis, slowly.
- jeddison54
- Jan 1, 2022
- 9 min read
Updated: Mar 15, 2022
This part of My AS journey takes you through two years from April 2010 to March 2012 when it was confirmed that I had Axial Spondyloarthritis. There were also some big changes both personally and health wise.
Introduction: life changed a lot over the two years developing a relationship, managing complications of medication and big decisions.
This period of my life saw me move away from the continuous cycle of drinking, with a little help and a change of focus. A lot of the lifestyle choices spoken about before came back to haunt me, with further health challenges.
In terms of my arthritis the treatment continued with methotrexate, with signs of improvement whilst I took part in a few studies exploring early onset psoriatic arthritis.
As we moved towards 2012 both life and my health took significant directions, life about 200 miles south. Health wise it is probably the watershed moment, in March 2012, that led me on a new path free of pain and slimmer Joe 2.0.
Psoriatic arthritis treatment; methotrexate complications, PSA research (blood, blood, and more blood) and a weight shock!
As I set out in the last post, I had started treatment for Psoriatic Arthritis mainly through a drug called Methotrexate. At that time the biggest side effects were of tiredness on the day of taking it, 2009 would see a more darker side effect come to light.
Starting on the positive side the treatment had started to work, for the pain and inflammation anyway. I was getting less morning stiffness, although in the cold it would still be there. I was also noticing a bit more mobility than before, all good news.
For the Psoriasis element it basically required a lot of effort, which became more and more on Claire’s side. Not sure she had bargained for that when we first got together. Applying a steroid cream, Dovobet, regularly to the affected area, massaging it in and patiently picking the excess skin when thick and scaly. If we did not stay on top of it, then it could become very red and itchy. As someone who was never really bothered about my appearance it never became bad enough to force me to keep on top of it.
This was the first time in my life also that I started giving something back, more as I worked at the hospital in improvement and my rheumatologist asked. I often just went with the flow and what was easier. This did prepare my veins for the lifelong pin cushions they have been. There were occasions when the research trials required about 8-10 vials in one go. It would also require some additional scans to my normal requirement. The research was aimed at exploring trends in early onset psoriatic arthritis. So, what makes young people develop the condition.
As the summer of 2011 came to an end the damage that methotrexate had done in stealth to my body, coupled with the long-time heavy drinking, came to light. The routine blood tests required when on such a drug picked up some abnormalities my liver function. Described to me by the GP as the liver function of George Best. It was so high compared to the ‘normal function levels’ that I was sent for scans.
The GP had spoken about the need to moderate drinking and did not believe that I had since being on Methotrexate. My argument was that I had, I was drinking much fewer nights than before. At no point was drinking in moderation explained and I did not investigate it. The liver ultrasound immediately showed that I had developed a large fatty area. This meant my liver was not working as it should. It could recover itself, but I would both have to reduce drinking further and stop taking Methotrexate.
At the time I got these results at the hospital I also got the shock news that my weight had ballooned so much, I nearly hit 19 stone. The pressure this was putting on my joints was surely leading to damage. I remember being horrified, more by the weight than the liver. I had to leave work and remember just sitting on my sofa in tears and very glum.
This was a catalyst though as it was at that point, I knew I had to sort out my weight and eating. I was not sure how to do it but was determined to, once that was worked out.
What is a fatty liver?
So, I had a fatty liver growth which was scary, and I had no idea how serious it was or not. The actual diagnosis was Non-alcoholic fatty liver disease (NAFLD) although alcohol did play a part.
The NHS defines NAFLD as ‘the term for a range of conditions caused by a build-up of fat in the liver. It's usually seen in people who are overweight or obese.’
The British Liver Trust, a UK charity devoted to liver health, has a lot more detail on NAFLD, see the link below.
This diagram gives a great overview very simply, centred around the four stages, I had progressed to stage 2.
Some key facts about NAFLD that I found out were:
A healthy liver contains little fat.
Some fat in the liver will be ok for most people.
1 in 3 in the UK have some early stage NAFLD.
Most are undiagnosed as very few mild symptoms.
The issue is usually picked up through blood monitoring.
The liver can heal itself and remove the fat through healthy living.
Also, there is a clear link between Methotrexate and liver damage as outlined in the drug information leaflet.
‘Methotrexate may cause liver damage, especially when it is taken for a long period of time. If you drink or have ever drunk large amounts of alcohol or if you have or have ever had liver disease, your doctor may tell you not to take methotrexate unless you have a life-threatening form of cancer because there is a higher risk that you will develop liver damage.’
For me it was a combination of being overweight, unhealthy eating, heavy drinking whilst being on Methotrexate that impacted my liver.
Lifestyle changes; the continuing developments of our relationship, reducing drinking and moving to London?
At the end of the last post, I introduced my new relationship with Claire. Over this two-year period that relationship became established and took me and my life in a new direction. It is safe to say that if I had not met Claire, I would not be the person I am now or where I am in life. She changed me in so many ways.
As our relationship flourished the first things that changed were my social interactions. I had noted previously that I had started to drift away from my school friends but finding Claire ended them. Not because she wanted me to, but I finally had something different. It gave me the clarity to see that I could be better, and that part of my life was and had been no good for me.
In those first couple of years my eating habits did not improve as I was so comfortable with where we were. Food was no longer a comfort blanket but was something we enjoyed together. I like to cook and now had an outlet for that, much better cooking for two than for yourself.
As well as giving me the drive to end some of my past friendships, being in a relationship, which unlike all previous ones was not built on alcohol. I did not need to drink to belong and be comfortable anymore, so naturally that cut down my drinking. In summer I did continue to drink around cricket, as that was the culture, but outside that I would only drink heavily on big occasions or work nights out. I could also finally just have a couple with Claire and not have the need to carry on drinking. I had always been a drinker who would drink to get drunk.
Our relationship was also a big factor in me broadening my horizons and becoming more multi-dimensional than just a cricket lover who went to the pub. We would enjoy going out for nice meals, we built new lasting friendships with Claire’s friends (not built on drinking), and we would travel to some fantastic places. These were all new experiences for me. Yes, we had some fantastic holidays as children, but I had not been on holiday for 5 years before this point or eaten at any restaurants for longer. Broadening horizons can only improve a person and for me I like to think it has.
Being in a relationship also helped me understand myself more and then change me as a person. I suddenly no longer only had myself to think about, someone else’s needs were a focus for me. Being honest this is a big shift for me and was difficult, still can be. For the first time in my life, I was learning constantly, and wanted to be better and strive for more. If I had this drive earlier, I may have made more of my cricket ability.
Linking this back to my health journey as that is what this is about. The changes to me as a person and having Claire as a confidant, a sounding board and a different perspective led me to make better decisions on my health. As much as anything though it was the change in mindset and having a purpose to life made me take more interest in my health and drive me to improve them.
Towards the end of 2011 this newfound drive and want to be better also led to some big work decisions. Now that I was striving for more I got frustrated in my job and a lack of progression or opportunities. The answer was to explore opportunities in London. A few interviews, and train trips later I secured a job at a large London hospital. While it was scary to move from Leeds finally it would open so many things and was a no brainer. Also, I knew that this next step needed to be with Claire and luckily, she supported me and would join me once she got a job too.
Moving to an AS diagnosis; the journey from PSA to AS and the start of getting answers and making changes.
As my treatment for Psoriatic Arthritis continued, although ultimately without Methotrexate, all the interactions with the hospital pointed to something different. The scans and the tests, with the expertise of the rheumatology team indicated the primary problem was not associated with Psoriasis but with the spine.
This was a similar story as my brother had been through the same discussions around the same time. He had been suffering for 4 years longer than me though.
In my opening blog I outlined what Axial Spondyloarthritis (AS) is and a background to it.
As we went into early 2012 with the help of one specific junior doctor, I was able to tick all the boxes that proved this was my primary diagnosis. This included a lot of health questionnaires and scoring on my pain, stiffness, and experience alongside the scans. This was all happening as I was confirming my move to London.
Fortunately, Leeds Teaching Hospitals did everything to confirm my diagnosis and the evidence to get into a biologic drug, Humira. More on that next time. The main consultant also advised exactly who I needed to see in London and wrote me a personal direct referral. For all of that I was again so lucky. This would be a new chapter that would develop in London.
Some of the main tools used to diagnose AS are:
BASDAI - The gold standard for measuring and evaluating disease activity in Ankylosing Spondylitis; is a scale used to assess the major AS symptoms around fatigue, spinal pain, joint pain / swelling, tenderness, stiffness duration & severity.
BASFAI - this alongside the BASDAI looks at your functional limitation from AS. What it stops you doing day to day. It measures this against difficulty in doing routine tasks like putting on socks or placing a tin in a cupboard.
More on diagnosing AS can be seen on the Versus Arthritis website here.
Is it normal for such a long journey to an AS diagnosis?
Depending on how you calculate it my journey to an AS diagnosis took between 3.5 years or 6.5 years. Taken either from my reactive arthritis or when the back pain came. You may immediately think that is a long time, but you would be surprised to learn the average UK diagnosis is 8.5 years. This means that people suffer for nearly a decade without knowing what it is, and some even longer.
This is a perennial problem for AS patients worldwide which NASS have been fighting to improve. In early 2021 they launched a new world leading programme Gold Standard Time to Diagnosis. It aims to reduce the barriers that create these long waits from 8.5 years down to 1. The programme has been endorsed by a whole range of organisations associated with arthritis.
This ground-breaking programme is tackling the common issues facing getting an AS diagnosis around a structured roadmap:
Building public awareness of AS.
Identification and referral in primary care.
Identification in secondary care.
Diagnosis within rheumatology.
The impact of the delay is felt through:
mental anxiety of waiting for answers.
lives are put on hold.
careers or family plans are frozen.
puts strain on relationships.
people withdraw from socialising due to the stress and pain.
To support the programme NASS launched the campaign Act on Axial SpA and associated resources, available at https://www.actonaxialspa.com
This is a fantastic programme to help people like me and fundraising like mine will support the work.
Click here to give to my next walking challenge, a 50km hike around the Lake District to raise funds for NASS.
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