Category: Medical research | Living with Spondyloarthritis

Another Patient Journey: 2019 was a good year

Picking up the story from my last blog Was 2019 really that bad? my doctors advised that I should stop the TNF blocker drugs, that had enabled me to live a normal life for the past three years, before undergoing cancer surgery. That made sense. These drugs work by dampening the immune system. I could understand that my immune system should be as strong as possible for the operation, so I would have to go off them…. for a while.

However, after the operation I was told that I wasn’t supposed to stop the TNF blockers just for the operation. I was supposed to stop them forever, or at least for a few years, because TNF blockers might enable the cancer to come back. TNF = Tumour Necrosis Factor – the blockers stop these messengers in the immune system, which are thought to play a role in suppressing cancer.

My doctors all seemed to be saying “stop TNF blockers”. I couldn’t believe it. I read the patient information for my medication, and it said the same thing: Do not take this medication if you have been diagnosed with cancer.

I was absolutely devasted.

Until I spoke to one doctor, by whom I felt understood, and who said, “What do you want? What is Quality of Life for you?” I thought of my trips to the mountains, of laughing with family and friends and all the love of life that had come back to me with TNF blockers. After the trauma of diagnosis and the surgery, I felt so confused and helpless. I needed that input to start thinking for myself.

I posted a question on the Facebook AS patients’ page of which I am a member. One woman commented that she was in cancer treatment and had to change medication. She wrote, “I got my life back with humira [brand name of a TNF blocker drug] and now it’s the 💩💩💩.”

Then I looked for relevant research results, my oncologist sent me a paper, I opened the discussion with different experts, and discovered …that there was no relevant, reliable data to guide my decision. The risk of cancer caused by TNF blockers in my situation is theoretical, because it would not be admissible to run clinical trials with patients to find out. There is also no scientific literature showing that I will reduce the risk by stopping TNF blockers now.

Living with chronic disease is life on a knife-edge

With my condition I live on a knife-edge, and I want to stay on it, living a normal life. This is me, on a mountain called the Lyskamm. It’s a knife-edge ridge, about 5 km long, and the idea is to stay on it, to walk right over it. I walked over it on my mountain tour of August 2017. I tell that story in my TED talk or my blog 16 x 4,000m summits in 5 days.

Traverse of Lyskamm, 16 4,000m peaks in 5 days — Me standing on the knife edge of the Lyskamm on the border of Switzerland and Italy

When you stand on that ridge on the right is Italy, and a drop of 1000 m. On the left is Switzerland, and a drop of 1000 m.

Italy is happy go lucky, living for the now. “La Dolce Vita”. For me it stands for continuing TNF blockers. But maybe I will fall to my death, because taking the drugs might allow the cancer to come back!

Switzerland is the sensible place to be. If in doubt, choose the conservative option, wait and see. It stands for stopping TNF blockers. But maybe I will fall to my death because if I stop taking the drugs, the autoinflammatory conditions will probably flare up again! I had experienced this a year before, when the medication stopped working, see The Luxury of Despair. Furthermore, it is known that chronic inflammation increases cancer risk, as does a lack of regular exercise.

How would you choose? ……Which way would you lean on that ridge?

“What is Quality of Life for you?”

The words of that doctor were my guiding light. She saw my integral, holistic needs beyond the inflexible, “one size fits all” recommendations of a health system that generally places mortality and prolonging life above quality. In Switzerland I can choose my doctors and over the years I have sought out dedicated carers who are attentive to my experiences and needs and do everything in their power to help me.

I want doctors to give me the facts, listen to me, guide me, but recognise that this is my patient journey.

I could explain my perspective to my doctors and win their understanding, respect and agreement. I decided to continue TNF blockers and live as healthy and strong a life as I can, even if my decision might be increasing the risk of cancer. Life feels good right now, and that’s all I need.

A new F-word: FASTING – Love or Hate?

Next week is Ash Wednesday when the Christian fasting period called Lent begins. I’ve never fasted. It always seemed rather uncomfortable and difficult. Until now I couldn‘t see any benefit and feel that managing AS I have enough to do.

The more I read and try things out, the more convinced I am that diet is important to my condition. We know that AS is about 95% hereditary, so I couldn’t have stopped it breaking out. But what I eat can maybe influence the progress of the disease, and most importantly how I feel on a day to day basis. A good diet should also help to keep other health issues at bay, which result from chronic inflammation.

But not eating at all?! NOT TOO SURE THAT I WANT TO STOP EATING ENTIRELY!

Beautiful organic lettuce — I love my lettuces – this one was grown organically in my garden!

So what is fasting all about?! HERE IS WHAT I FOUND OUT

The first thing I found out is that I could fast in many different ways. I could not eat for just 8-12 hours, which is called “interval fasting” and seems the same as eating early in the evening; or fast for perhaps as long as 3 weeks. I could eat nothing at all, or just limit my diet, for instance to juices or fruits.

The second thing that I realised is that not only Christians of practically all denominations, but also every other leading wisdom tradition, such as Hindus, Muslims, Buddhists, Jews, observe fasting at certain ceremonies or times of the year. These are traditions which have held for thousands of years, and are based on collective and accumulated knowledge. Such customs are a spiritual practice but also often developed for practical reasons. In Western Europe before global trade and industrial greenhouses, food was getting scarse by Spring, so there were good reasons to eat less! But maybe there were health reasons for these practices too, which could not be scientifically proved, but were observed. The ancient Greeks believed in fasting. Indeed Hippocrates is quoted as saying: “Instead of using medicine, rather, fast a day.”

The third thing I found is that Western medicine does not advise fasting, particularly for people who suffer from serious chronic disease. The fasting article in Wikipedia discusses fasting in religious practice at great length. Medical applications are referred to only with reference to fasting before surgery or medical tests.

Alternative medicine gets a one liner in Wikipedia: “Although practitioners of alternative medicine promote “cleansing the body” through fasting, the concept is quackery with no scientific basis for its rationale or efficacy.”

But the fourth thing is that I found an article on the effects of fasting on rheumatoid arthritis in the renowned medical journal “The Lancet” in 1991. Its conclusion is: “Fasting is an effective treatment for rheumatoid arthritis, but most patients relapse on reintroduction of food.” But then, after 7-10 days fasting, patients were put on gluten-free vegan and then lactovegetarian diets. A control group ate an ordinary diet. The final result: “The benefits in the diet group were still present after one year, and evaluation of the whole course showed significant advantages for the diet group in all measured indices. This dietary regimen seems to be a useful supplement to conventional medical treatment of rheumatoid arthritis.”

Has this research on rheumatoid arthritis (RA) been followed up? Yes, a bit! I found an interesting article from 2014 called “Fasting: Molecular Mechanisms and Clinical Applications“, which states that the positive effects of fasting on RA have been supported by four differently controlled studies. The authors write: “..for many [RA] patients able and willing to endure long-term fasting and to permanently modify their diet, fasting cycles would have the potential not only to augment but also to replace existing medical treatments.”

Is fasting really “quackery” as Wikipedia claims, or has not enough research been done to establish its value? And what about the effects on AS?

My fifth thought comes from new knowledge gained in basic medical research. A process which might have played a key role in the positive effects of fasting for patients with rheumatoid arthritis is Autophagy. This is a sort of automatic biological cleaning programme. The removal of waste products and old debris is essential for the cellular and organic fitness of any living organism. Autophagy describes a fundamental process to degrade and recycle old cells, and then use them for new purposes or as a source of energy. Yoshinori Ohsumi who discovered the processes and elucidated the basic mechanisms of how autophagy works, was awarded the Nobel Prize for Medicine in 2016 for his work.

Autophagy, as a recycling and cleaning act, is essential in many physiological processes. It is triggered by the need to adapt to a lack of food caused by starvation or intentional fasting, but it is also a response to infection. Furthermore, it is now known that mutations in autophagy genes can cause disease, and that the autophagic process is involved in several conditions including arthritis, cancer and neurodegenerative diseases. But nobody yet understands how.So perhaps the view of fasting will change in the next years. More research is needed to understand autophagy and how exactly it may be connected to arthritis. We might find out that autophagy could contribute to the treatment of diseases, perhaps even by fasting!

The Luxury of Despair

The Welsh singer-songwriter Martyn Joseph sang at a music festival in our village last August. A song was about the conflict in Palestina and the fate of those innocent civilians living there. „Despair is a luxury,“ he sang. (There’s the link – check the song out!)

Martyn Joseph singing at our annual music festival in August 2018

Those lyrics struck a chord with me. I remembered how a neighbour met me in a train last May. My hand and arm were bandaged with a dressing of anti-inflammatory cream. The medication that had transformed my life since Christmas 2015 had been working less well in the previous months. Now it had stopped working entirely, and alternately my wrists, arms, knees swelled up. I had backache and felt exhausted, drained of energy, not rested after sleep. We talked a little, and she said, „You are brave.“ I said, „I’m not. I have no choice.“

Inside I didn’t feel brave. I was frightened. Frightened that the joy of life, given back to me by the treatment, was lost. Frightened that I would go back to chronic pain, frightened that I might not be able to work, frightened that I would be too tired to go out into the world, and loose the social life that keeps my soul afloat.

Six months on, one of the alternatives that are currently available, does seem to be working. The swelling disappeared in June and the back ache that plagued July is gone too. Side effects are being controlled with another medication. I am energised again, able to get up early, go hiking, swim, go out in the evening and generally feel good about myself again. I’ve just been on holiday for two weeks of swimming, diving, reading, eating, fun with friends, and generally had an amazing time.

In retrospect, it‘s a shame that I allowed several months to be marred by feeling miserable. My doctors are caring and will do their best to find a treatment that will help me. I am incredibly lucky to live in a country where my treatment will be paid for, more or less whatever it costs. (Think of the people in poorer countries, where this is not the case; and for the Americans with disorders like mine, who told me that they will not get insurance cover, if President Trump’s health care reforms are enacted). I have a job and an understanding employer. I have a secure home, and a loving family. There are plenty of things I can still do, even if I have aching joints. Things could be so much worse.

“Despair is a luxury” sings Martyn Joseph. If you can‘t change anything, then despair has no use – it’s like a luxury. That’s how I understood the words of the song, So, if despair can galvanise me to go into action and change something, then it’s useful. If not, despair is only destructive and will never end. Acceptance and trust are the keys; enjoying every moment, when nothing is seriously wrong – and of course even during a flare-up, there are such moments.

Meditation is the greatest tool I know to instantly get into a mind-frame of acceptance, trust and happiness. But exactly when I’m in pain and feeling bad about myself, is the time when I don’t use it! If I have backache, or other aching joints, I find meditation most difficult….. Will I manage better next time? I’m working on it.

Am I really what I eat?

In the bad old days when life seemed to be filled only with pain, I used to comfort myself and find moments of peace with the thought: „I am not my body!“ If I could see myself at a level of consciousness where my soul and not my body was in charge, then the pain lost its power over me. That was rare, but it did happen.

If I am not my body, then I am also not what I eat, right? Up to now I believed that medication, exercise and stress-reduction are more important for my well-being, than food. However, the more I learn about diet, the more I think that it may be important too. Diet seems to be the question that interests people the most.

The leading Swiss charity for musculoskeletal disorders, the Swiss League against Rheumatism, recognises that many patients would like advice about diet, but do not know where to find reliable information. They publish an excellent series of articles explaining the different views (German, French, Italian). Many rheumatologists are sceptical of or reject any significant dietary influence on the development of chronic disease, and fear that special diets may lead to nutritional deficiencies, and make things worse for patients. At the other extreme there are holistic physicians, and health advisors who believe that diet can even replace medication.

When the disease flares up, I would try almost anything to alleviate the pain; and it seems intuitively plausible that what we eat may affect the progress of disease. It is well-known that a poor diet can lead to other health problems, such as Diabetes or cardiac disease. But what about Arthritis? Health care specialists who believe that diet has no influence, point out that there is no clear evidence that diet makes a difference. But that could be because the subject has not been adequately researched yet. We still don’t understand what triggers arthritis, so in my view it’s too early to eliminate diet from the list of suspects.

But where can patients like myself find the information to make their own decisions?

My General Practitioner sent me to a nutritional consultation at the local University Hospital. I was amazed to learn that they even have a leaflet for people with inflammatory arthritis (published by the Swiss Society for Nutrition in German and French). There I was told that many elements of a Mediterranean diet can help reduce inflammation.

The picture shows me with my kids eating a Mediterranean diet on holiday in 2014. We were doing it years ago!

The first thing is to guard against Osteoporosis. I‘ve had reduced bone density since my mid-forties, so that means making sure I get enough calcium (Fish, cheese, yogurt, various seeds – you can find information on the web) and Vitamin D (supplements and going out into the sunshine).

People affected by inflammatory arthritis need a lot of protein, which is contained in meat, fish, eggs, dairy products, beans and pulses. Some of those foods may promote inflammation, as I explain below.

If there are foods that promote inflammation, then people like me should avoid them, and eat more foods that are anti-inflammatory. That’s where the Mediterranean food comes in. As is well-known many Western diets contain high levels of Omega-6 fats, in particular arachidonic acid. These are considered to promote inflammation and are found in meat, eggs and high fat dairy products. Our Western diets contain a lot of arachidonic acid. So according to the advice I received, these should be reduced as much as possible. The anti-inflammatory „good“ foods contain Omega-3 fatty acids, like fish – so cod-liver oil really is good for you! – and certain oils. Oils that are particularly good are Linseed (we had that at home when I was a child, but it was only used to grease Cricket bats), walnut oil and rapeseed oil. To my disappointment olive oil is good, but not amongst the very best.

The last advice is to eat things containing something called Antioxidants because they scavenge „bad guys“ called oxygen radicals (who would think that something with the word oxygen in it would be bad for you?). You get your antioxidants if you eat lots of fruit and veg, and whole grain products, and nuts and seeds.

I was delighted with this advice, except it described quite well the way I eat anyway, and I‘ve still got active AS. What can I change?

I suspect that I still eat a lot of unhealthy food, even when I think that I am eating healthily. Ten years ago I visited Japan for 2 weeks.

Vegetable seller in Japan — Vegetable market in Japan

Pasta chef in Japan — Fresh pasta chef in Japan

The food was absolutely amazing, lots of weird greens and freshly made pasta. It was before my AS diagnosis, although I‘d had symptoms already for many years. I remember well how astonishingly energised and healthy I felt. I had no idea why but vowed to eat Miso soup for breakfast from then on. My promise to myself didn’t even hold a week! In the rural area in Switzerland where I live it was hard to find Miso for the soup, and my family preferred to start the day with traditional Swiss breakfasts…

Brunch bei Marlene und Sämi Wyss Rubi, Hagiboden — Traditional Swiss farmers’ breakfast

Maybe writing this blog will motivate me to try again and report in more detail in a later blog, on what I discover. The whole subject of diet is huge, and I find it quite complex.

Recently I went on a alpine trip collecting wild herbs. In the evening we prepared a wonderful 5-course meal with these plants. It was delicious, and again I felt marvellous afterwards. I’ll leave you with a picture of our starter.

Herbs from mountain meadows are delicious — Mountain meadows are a source of delicious herbs

Have Disease – Target – Kill Something

I recently came across an interview with Siddhartha Mukherjee, the Indian-American physician, oncologist and author of The Emperor of All Maladies: A Biography of Cancer. I would like to share his thoughts.

His ideas show how medical research could be changing its analytical paradigm and how this change might open a path to better care for people, particularly for those who are suffering from diseases like AS, which are currently considered incurable.

According to Dr. Mukherjee current medical treatment boils down to six words: Have disease, take pill, kill something. This approach goes back to the extraordinary success of treatments after the discovery of antibiotics. It worked so well, that it became the basic approach to the treatment of disease, not only for diseases caused by bacteria and viruses, but also in non-communicable diseases. Indeed the treatment of AS using biologic drugs is also based on this idea. These drugs aim to stop the immune system mistakenly attacking itself by blocking the activity of a naturally occurring protein in the body (TNF-alpha), which is a key communicator driving the damaging inflammatory processes in many – but it seems not all – cases of AS. To paraphrase Dr. Mukherjee it’s Have AS, get injection or infusion, block TNF-alpha.

Dr Mukherjee believes that this model of Disease – Target – Kill still has an essential role to play, but there are many other areas that are not researched as much, but are just as important. What about the environment that the diseased organism lives in? What about the immediate cellular surroundings in the diseased area? What are the connections between cells that sustain normal physiological interactions in life; and how and why do they change in disease?

Aren’t these exactly the questions that lie behind many of our thoughts when we share ideas on a Facebook discussion forum, or a blog, about what makes us sick, or keeps the pain away?

If we could answer these questions we might show how things like air pollution, or stress or unhappiness affect the likelihood of getting Arthritis. It would lead to regenerative medicine, e.g. rebuilding cartilege in Osteoarthritis instead of replacing joints; and to nutritional medicine, e.g. finding out whether some foods can trigger Arthritis or protect you against it; and best of all to preventive medicine, to stop disease even breaking out.

It seems to me that Dr. Mukherjee is explaining a way for medical research to look at well-known diseases from a new perspective. I find that really exciting and can recommend his TED Talk, where he actually used the example of rebuilding cartilage to combat Arthritis to demonstrate how it’s being applied.

And by the way, my TEDx Talk is also finally online. Please do watch it and pass it on to anybody who might be interested.

Have a great week, and get in touch, if you feel like it.