Blog Post 10 - Episode 9: Speed walking, lowest weight, (attempting) DIY & a white wedding!

jeddison54
May 4, 2022
10 min read

In the next episode of my AS journey I go through the two years from moving back to Leeds. In health terms I maintain the stability of my AS with ongoing low pain, reach a weight milestone and get my head around ‘biosimilar’ medicines.

A lot was going on in life during this period away from health, but as always my life and my condition are always closely linked. Claire and I set off in transforming our new house, planning for and then getting married and a long honeymoon, as well as other things.

Stepping up my waking again and conquering the Three Peaks!

Moving back to Leeds enabled me to pick up my daily steps and speed. As I touched on last time I had a realisation that walking with a significantly increased heart rate has the greatest benefit to my health. Physically it made me much fitter and mentally it gave me great pleasure and satisfaction.

So when we were back in Leeds I started walking all the way to work from home and back again. It is just short of 5 miles to the city centre where my office was. I would walk this twice a day at speed, taking about 55 minutes to an hour. I also made sure the journey home took in a significant hill to get the heart rate right up.

I would also be able to most days get a good 30-60 minute walk each lunch, eventually helped me find some nice routes for future long walks, like the canal.

All of this combined in me achieving more weight loss and greater fitness. In fact by the summer of 2017 I hit an all time low in my weight. I found myself at 11 1/2 stone, I had never been so light in my adult life (and probably longer). The signs were obvious in fitness terms as I could just walk and walk and not really get tired. I could walk further and further.

So, when my good pal Jeff suggested we do a walking challenge and take on the Yorkshire Three Peaks I jumped at the chance. In May 2017 Jeff and I set off early morning on the 25 mile hike up and over 3 mountains. We initially had started in the second group to set off but quickly merged with group 1 and broke away out front.

We had not done any formal training, although obviously I regularly had the distance if not the hill climbing experience. That seemingly did not matter as we took on the hills at speed and despite the heat made great time. We reached the end first and completed in the fastest time, according to the organisers in years of 7 hrs 34 minutes. A well deserved drink followed.

We made it back to where we were staying after the 30 minute drive and our better halves we’re nowhere to be seen. They did not expect us for a few hours so were shocked we had been in the pub for a while.

Back in Leeds, trying to settle some old scores and the challenges of owning an old home.

After my big 2016 cricket season I had a bit of a dilemma of do I return to my old club or take up a new challenge. Although everything was telling me not to go back and to take up an offer somewhere else. But I was drawn back to my old club to in my mind settle some old scores, and show how many runs I should have scored previously. The alarm bells were ringing when winter training would often consist of me and two of the 2nd team. I kept going though as it was an easy option, and I felt I could continue my form anyway.

Ultimately I had a frustrating season with no hundreds, and was reminded of the reason I knew I shouldn’t have gone back. I was frustrated by myself not being able to perform to my level of expectation and that spilled over into me being an irritant on the pitch. I knew from half way through the season it was it, I was done. Maybe it would have been different if I had made a wiser decision. I duly retired in a game where I scored no runs and we were comprehensively beaten. I have not picked up a bat since or been on a field.

I walked away from the game I had loved and been obsessed with since an early age. Ultimately though the decision was more a choice of family first. Cricket was not giving me joy and I wanted to focus on our future.

From this point on, my Saturdays were now to focus on the house and DIY. There was a perfect storm of our first ‘old house’ needing lots of little work, our desire to make it our own and me having absolutely no skills or experience of DIY or working with my hands. Safe to say 5 years on and I still have no skills!

We had grand plans for a small side extension to include a utility room, a combined kitchen / diner, new bathroom and redecoration of the rest of the house, plastering and all. After lots of research on what we should be doing, help from Claire’s family & friends, hard work and some luck we had the kitchen, utility and living room done by the end of spring 2018, complete with dog shower. Some difficult times though including months of living without a cooker or kitchen and the monotony of steamed or microwave dinners.

I learnt over this period that I was not too bad at destroying things, but of strength and a sledgehammer or a paint scraper, but I have limited ability to build. Even now with a cupboard full of tools I cannot use many of them. That said assembly of furniture includes a lot less rework, less swearing and anger than before. So I must have learned something.

AS under control, spacing of Humira and then a biosimilar.

I introduced the idea of remission for my axial SpA or probably better labelled as stable disease. Well throughout this two years with my increased fitness, low weight also I had a very very stable disease. I remember having so little pain or stiffness at all. One of the options when in a more stable position is to try spacing the doses of medicine, in my case Humira.

After discussions with my medical team we agreed that I would move from fortnightly injections to every three weeks. Hence the spacing description as you are spacing the doses out over a longer period of time. I think the idea is that because of low levels of inflammation you need less medication in your system to control it.

I saw very little difference in spacing of my medications and had no need to increase other pain relief or anti-inflammatory drugs. With the lower levels of pain also comes a much clearer mind and as I know now from reading it is due to the inflammation being the trigger of brain fog. So with lower inflammation activity it naturally follows there will be less brain fog.

Around about the summer of 2018 the idea of biosimilar medication was mentioned to me by my medical team. These are drugs are cheaper but identical biologic medications. The NHS was about to move all patients to these drugs to save the UK millions of pounds.

I had a decision to make as you could switch, as was recommended, or fight to remain on the original medication. After a long discussion with my consultant, and some prior research as I had already heard about them, it was at the time a no brainer. Same medication just different label and saves the NHS money. I remember some others I spoke to not being so sure but I had no hesitation. Maybe in hindsight this was influenced by how in control of my AS I felt at this time. I will go into detail in the next blog but it was a decision that combined with other things would have an impact on my condition.

So what is a biosimilar?

So what is a biosimilar drug anyway? Well I am not going to go into the medical side as I am not medically trained but will look at it from a patient viewpoint and try to simply explain it.

Breaking down the word helps this as the bio part refers in this case to it being biologic medication. In my case Humira (brand name) or Adalimumab which I have previously given a lot of info on. Simply though biologic refers to it being made from a biological process. Similar in this case then means similar or like for like.

When a new medication is developed and then becomes licensed the manufacturer has a period of exclusivity. This means that no one else can sell the medication they have taken the time and money to develop. So they have monopoly of the market. Humira was the only available adalimumab product in the market for 5 years. This enables them to get back the sink costs from research and development.

Once the period of exclusivity ends any other company can start to sell the same medicine. This increases competition and lowers the price. Biosimilars came to market in 2018 and 2019.

Adalimumab has various brands now, all meant to be developed and made in identical fashion. So put really simply it’s the same drug, made following the same process with the same ingredients. The difference is that they are made by different people in a different place.

The theory then is that switching to a new brand will not affect your treatment as they are the same. I guess whether you buy big brand or own brand paracetamol you don’t see any difference, is a comparator.

If you want to know more about biosimilar drugs you can see at the links below:

- NASS information on biosimilars: here

- NHS England definition of biosimilars: here

- Creaky joints answering biosimilar common questions: here

A celebration as we officially become the Eddisons and relaxing with an exploration of Far East cultures.

After the proposal and long holiday (see last post) our attentions turned to the wedding and all the planning for it. As usual we were quite decisive on choosing a venue and a date, which meant Christmas 2016 meant invites a year in advance. I say our attentions turned to planning but in truth that was 99% Claire. My role was to ensure I had my outfit for the day sorted and to provide support for the decisions, sometimes giving a contrasting view (such as vetoing candelabras) but mostly agreeing with the great choices she had already made.

It was a small wedding mainly with families and a few of Claire’s good friends. It was a little sad I didn’t really have anyone I wanted to share the day with from my friendships from my younger days but I had made the right decisions to move on from them years before. We did it our way with no big ceremonial gestures or embarrassing speeches but it summed us up well, reserved and refined but fun.

Being near Christmas we had a surprise (to our guests) visit from Santa, but the best surprise appearance turned up in the early hours. We got a white wedding as the snow blew in just for the day, luckily everyone still made it. It really made the day feel even more special and fantastic for the photos. It took me a while to make the proposal but we had such a wonderful day that we will remember for ever.

The wedding also helped me maintain my weight drive to the point where if I had carried on losing weight my suit would have been too big! Luckily Christmas excesses got me back up. Despite the nerves and the excitement for me (and as those that know me I never do excitement), never turned into anxiety and were positive nerves.

Our proper honeymoon came in February 2018 when we jetted off to explore Vietnam and Thailand. The furthest I had ever been and an experience that will be hard to pass. We loved the culture, the food and the weather. I am surprised I did not undo all my weight loss success when I was eating a breakfast of steamed pork parcels, fried rice, fruit, spring rolls and meat skewers for breakfast everyday.

We fell in love with the Vietnamese cuisine so much that our regular go to takeaway now is a Vietnamese! We did things that we have never done before like taking our life into our hands on a vesper bike food tour of Hanoi, sleeping under the stars on a long boat in Halong Bay and feeding and bathing elephants. Again as per my last post relaxing on holiday is a real treat for my AS and the last spot was so remote and calm off an Island in Thailand that any troubles would have melted away, and even the roughness of a beachside Thai foot massage (with lots of slapping) couldn’t raise any stresses.

A wonderful experience to a wonderful period for us which no wonder resulted in such a stable time in my AS.

Link between Vitamin D (sunshine) and Arthritis

Another reflection I have had about how holidays and relaxing has helped, and what I know now about managing AS, brought me back to a previous doctors comment. I was once told just go live in Australia the heat will solve your Arthritis. Ironic as I had just had it explained to me that my hives were a result of sunlight intolerance I had developed!

But there is some truth in the flippant comment, as vitamin D is strongly linked to good joint and bone health. I have recently taken up a regimen of vitamins which vitamin D is central to. I have found really good results on getting me back into feeling fit and healthy.

Having done a lot of research there are lots of studies looking into a link between a deficiency of vitamin D and axial SpA issues. There is no conclusive evidence but lots do talk about links between good bone & joint health and better outcomes in recognised tools like BASDAI / BASFI.

In the UK we are at a disadvantage with vitamin D given the lower hours of sunlight through the year, particularly in winter. So it can be advantageous to take supplements to overcome this. I cannot speak from a medical viewpoint but it has helped me.

Some life changing news!

So I am just going to finish this post with the news that in October 2018 we found out that we were going to be parents. Claire was pregnant! Obviously this might be a big focus of the next blog and exploring the planning for this joyous and life changing time and everything that comes with it.