Blog Post 7 - Episode 6: Hello Humira, goodbye pain and weight, a lifesaving time!
- jeddison54
- Jan 9, 2022
- 10 min read
Updated: Mar 15, 2022
This is probably the most critical point in my AS journey, it is the pivotal time where a miracle medication transformed my disease, my life and me. I will chart how shortly after arriving in London I started a biological therapy treatment for my AS, which helped manage my pain and enabled me to become active again.
It will cover the year from me arriving in London in April 2012 (a big year for London too) to April 2013; including everything Humira, Claire coming to join me, a new cricket club and tentative exercise steps.
The big move; packing all my belongings into the car and starting a new life in London. New job, long distance relationships and living like a student.
As I mentioned in my previous post in April 2012, I was on the cusp of a move to London. The planning was done and on a teary day I filled the car with my key possessions and headed off for the long drive. My new boss had pulled some strings over a couple of weeks to ensure I had somewhere to stay. Lined up was a place in the staff accommodation but not available for a week.
The drive was one of the easiest trips up and down the M1 I have done little traffic etc and made good time. All the way down I went through many emotions from the apprehension, the excitement, the doubt, and anticipation of possibilities. Pulling up to the emergency accommodation that would be my home for the first week, was a stark tower, rundown, scruffy and not at all homely. A bit like the hospital I had gone to. The job was very much like the one I left but in a different political environment. Work home was a tiny room in an old portacabin with built in air con!
Claire came to see me the next weekend and I was embarrassed by where we were, boiling from the broken heating, but glad she was there to support me. We did some London things even going to the cinema on Leicester Square, the only time in about 10 years I would indulge in the big screen. That Sunday was something that we would come to get used to saying an emotional goodbye as we waved each other off at the train station.
We would spend the next 5 months or so making those journeys every weekend. It was strange being in the new place without her but knew it was only temporary and a bit like on pause.
Once I got into the real staff accommodation, I got the experience most students go through each year. Living in a room with a shared kitchen with 5 others. Difference being with no social side like happens when students are thrown together, which with my drinking was a good thing. In general, the weeks were dull focussed on work with one notable highlight being a trip to the Oval for the test versus South Africa. I watched on as Amla and Kallis ground England into the dirt, on a bright July day. A masterclass at close quarters for me.
The AS diagnosis becomes a reality; fighting for the right specialist, approval for Humira and starting to inject!
One of my first tasks in London was to get a GP so I could get my referral activated and move forwards. This should have been an easier task than it turned out to be. Despite having a personal referral from my Leeds consultant to Guys & St Thomas’ hospital. This was to an AS expert. My GP tried numerous times to convince me to go to the local trust, the one I worked at. Finally managing to convince them I needed to go the specialist.
Immediately from the first appointment I was impressed with the service, focussed on my AS. They had a multidisciplinary approach I had not seen before, and I spent time with a specialist physio in clinic. She gave me the insight on how important my weight, exercise and movement were. This was the first time this was laid so bare and was the dropping of a key penny.
Quickly they managed to get my approval for treatment by Biologic therapy. For me the first step was to try Humira injections. I knew about them as my brother had been on them for a while. I was given so much information, time to ask questions and explore if this was right for me and what to expect.
There was obviously a lot of apprehension about starting this as you read all the potential side effects. For me though I needed to give it a chance as the potential upside was an end to the pain, a slowing of the disease and a chance. I jumped at their recommendation and in no time the first delivery came, and a nurse supervised my first injection into my tummy. No pain from the injection, a small bit of blood and no real side effects. I was also a bit petrified of doing the injections wrong given how expensive I was told the drugs were, luckily, I have only failed once. This process would be something that just became routine in my life.
So, what is Humira anyway and what is it used for?
Humira is the original brand name of a biologic therapy called Adalimumab. There are several different biologics and many patients have tried numerous during their treatment.
Biologic therapy has changed the way AS is managed. Biologics are complex proteins and target specific molecules of that are involved in AS as a disease. This is different from traditional pharmaceutical medicine like paracetamol and ibuprofen, which are small chemical agents.
Most biologics are designed to block specific aspects of the immune system and can be thought of as ‘targeted therapies.
Because these therapies are proteins, they do not work as tablets and must be given as injections into the skin.
Biologics work by blocking aspects of the immune system to slow down the attack on your joints and spine.
Biologic therapy works to reduce inflammation in your body and that means you should get less pain, less stiffness, and more movement.
In short, biologic therapy should give you a better quality of life.
Current licensed biologics available to treat AS come in two different forms TNF and IL-17A, which require you to meet a set of criteria to be eligible. Humira is an anti-tnf biologic. It interferes with the action of a protein called tumour necrosis factor (TNF) which is over-active in people with inflammatory arthritis, including AS. Too much TNF causes inflammation and damage to the skeletal system.
So that is probably all quite technical and scientific. Over time I have come to understand these drugs much better. The way I explain it is:
My AS causes my immune system to operate as a higher level than needed day to day or is overactive.
This over activity causes my inflammation, pain, and joint damage.
Humira works to regulate and reduce the over activity.
This normalises my immune activity and causes it to operate at the more normal required level more often.
Might be easier for me to explain, so watch the video below.
Also more information can be found on both the NASS website and the Versus Arthritis website, if you want to know more.
I also want to bust a myth about the impact of Humira and other biologics. This is particularly pertinent in the context of COVID and all the talk of immunosuppression or people on immunosuppressive drugs. If you think for example a cancer patient on chemotherapy or radiotherapy. The treatment will effectively reduce the immune system, so it operates at a lower level than needs to be and therefore suppressing the immune system. This puts the patient at risk as they cannot mount the right level of response.
Compare that to my immune system which is overactive, and the suppression is reducing my activity to a more normal level. The two are bringing down the immune system in different ways. The biologics regulate my immune system so for me immune regulation is a better term for axial SpA (AS) treatment description, not sure others would agree.
Starting to fightback; pain relents, London life introduces me to the joys of walking (although I didn't see that yet) and I join a gym!
As alluded to in the intro this time was a big change in the path of my AS journey. The decision to take up the Humira injections was the right one. Within a couple of months, the pain, stiffness, and lack of mobility really improved. The difference was such a transformation, it also gave me a massive boost mentally and in my energy levels.
Having taken note of the experts view of how important exercise was and my drive to try losing weight, I could capitalise on the pain reduction. I had started to lose a bit of weight from eating better but it was time to step that up. I was incredibly unfit. For the first time in my life, I joined the gym, I had always hated the idea of a gym.
While I found the few complimentary personal training introductory sessions cringy and embarrassing, they showed me what I needed to do. I had used an exercise bike at home before but have never been a runner or an athlete. I took to going to the gym after week a few times a week, it helped to get through the evenings. Quickly I realised I could watch the IPL (cricket) on the big screens while running, cycling or on the cross trainer. After a few weeks I found myself seeing a difference both in weight and fitness, it was easier to do my routine. It was safe to say though I never truly enjoyed the gym and needed a more sustainable exercise plan.
Another consequence of the pain easing, increasing my energy and fitness was I could tolerate walking to places more. Alongside this London is a place where you just naturally tend to walk more, be it to the tube or train or through the central areas. The only real benefit of the portacabin location on the edge of the hospital was nearly all meetings needed a 10-minute walk. Slowly I found myself walking more and more, be it when we moved to a flat a tube stop away, at Tooting Bec, from work preferring to walk home from the stuffy cramped carriages or doing a few laps of the hospital sight with my colleague for a break or chat through issues. The traffic also makes you think I might as well walk. At this time, I didn’t know what walking would become to me, but it had seeped into my routine. A bit of gym and more active continued to improve my health with a good balance.
As time went on and I continued to feel the improvements from the medication, I also noticed that I was not really seeing any significant side effects. Looking back the healthier balance gave me a bit more confidence and a better mental outlook. Life didn’t have to be one of struggling through pain just to exist.
My claim that Humira has been a life saver for me May be a bit over the top. Anyone who manages a chronic or long-term condition though will understand the negative impact it can have on everyday life both physically and mentally. I did not appreciate at that time how much the pain affected my life but the improvements I had with the new medication gave me life back.
To summarise the physical improvements, I saw from when Humira worked:
Less frequent and lower levels of stiffness.
Significantly reduced pain experienced day to day.
Improved mobility and ability to do simple tasks like picking things off the floor.
Reduction in the general fatigue and malaise that I had been living with.
Exercising with AS and other forms of arthritis, why and how?
There is a lot of evidence on why exercising with arthritis and in particular AS is beneficial when done appropriately.
NASS (see info here) identify exercise as the key to managing AS, with it not being enough to rely on medication. They even go so far to say, ‘Exercise is the single most important thing you can do to help yourself’. This is because the fitter and more flexible you are the better you can manage your AS. In my experience this is so true.
The benefits of exercise for those with AS are:
Increasing your flexibility.
Increasing the range of movement, you can do.
Improving your posture.
Improving your sleep pattern.
Reducing the pain and stiffness you experience.
Versus Arthritis also have lots of hints, tips and help for exercising with arthritis more widely at the links below:
Exercise hints and tips, from real arthritis patients on what help them.
Staying active with arthritis, giving the background to research on activity and tips on how to choose the best for you.
Exercises for healthy joints, targeted exercise advice for different joints and parts of the body.
Stress and joy; the simple task of finding a flat in London and Claire arrives for our next chapter with life getting more normal.
As planned Claire secured a job in London and thoughts turned to planning for her arrival. Main task was to find somewhere for us to live! Now when they talk about the most stressful things in life, not sure they do justice to just how difficult it is trying to rent in London. Throw in that one of you is 200 miles away and that ramps it up more.
It was one of the most stressful experiences I have had in life. To the point that my mum even said she had never heard me so angry and frustrated when we spoke on the phone. Basically, the market moves so fast that by the time you search and find something suitable to look at it is gone. They cannot keep the websites up; properties are rented before they are even live. Also, it is all about who will pay the most, multiple offers at the price advertised become a bidding war to who will up their offer quickest and by the biggest value.
We managed to find somewhere that suited what we needed, commutable, parking space, and close to some green space. The timing also ensured that there was no gap of Claire in London with nothing. Our long-distance relationship ended at about 5 months. The little flat would be our first home together for the next year and the base for our new London life together. This is where the stress of moving was forgotten, and the joy and excitement took over.
The sign that life was returning to normal, back together and my health improving, gave me the confidence to find a new cricket club. I wanted to get back to cricket and see if my fitness would translate back into better form. My searches led me to a club called Wimbledon, familiar? I found out on arrival it was so close to centre court that during Wimbledon weeks it is the car park! It was a good pick and training in the depths of winter in early 2013 showed how strong a club it was, having won the National Club Championship the previous season.
In those early months we enjoyed London but also found out how busy London life is. We settled into the local area, but also realised that the sights of London are best left for when you have visitors.
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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