Every year on October 12 is World Rheumatism Day. This was launched in 1996 by the international federation of self-help associations of rheumatism sufferers, “Arthritis and Rheumatism International (ARI)”. When people talk about rheumatism, they are grouping together 200 to 400 individual diseases. One of these diseases is rheumatoid arthritis (RA), a so-called autoimmune disease that causes inflammation in the joints, leading to swelling and severe pain. RA is the most common chronic joint disease. On the occasion of this year’s World Rheumatism Day, Valérie Krafft, Managing Director of the Rheumatism League Switzerland, Dr. med. Heino Prillwitz, specialist in rheumatology from Weinfelden, and the affected person, My To-Siegrist, talk about RA.

The beginning

My To-Siegrist: “I have been affected by rheumatoid polyarthritis since I was a teenager. For the first 10 years, the disease was very pronounced. It started with painful and swollen joints, which were treated with anti-inflammatory drugs. It wasn’t until three years after the onset that I was diagnosed, and from then on I was treated with various basic therapies that target the underlying disease instead of just the symptoms.”

“I had pain mainly in the joints, with the upper joints being affected the most in my case, i.e. arms, shoulders, hands and fingers. Personally, I feel this is almost a mild form of the disease, even though the joint involvement is pronounced and my RA was classified as aggressive in severity. But honestly, I’ve still gotten off relatively easy since it “only” affects my arms. I imagine it’s much more difficult when other joints, like the spine, hips, or other larger joints that you need for mobility, are affected as well.”

“The disease manifested itself in me by morning stiffness that affected the whole body. You can imagine that when I got up, my body was like frozen. In doing so, the whole body burned and with every movement the burning became stronger. This led to some immobility and a slowing down of my morning routine. So if I wanted to get out of the house at 8 o’clock, I had to get up at 5 o’clock. Those three hours until I got into a mobile state, until I could move my joints somewhat pain-free, that’s what I needed every day! Even though the morning pain was gone, an underlying pain remained throughout the day. This carried through into the evening until it was time to go to bed again.”

“Morning stiffness usually shows up at the beginning of RA. The longer the disease remains untreated, the more the joints are damaged. Over time, the joints are completely destroyed and sometimes even have to be surgically stiffened. In everyday life, this means that you cannot make your own breakfast, you are no longer autonomous in your own four walls. But you can’t go to work either, because you can’t drive a car, you can’t hold on to the bar in the bus or streetcar and are dependent on a seat, and you can’t ride a bicycle. One is really immobile. Even if you’re mentally capable of working to a certain extent, you’re just physically limited.”

“But the disease is also mentally challenging. Extreme fatigue and a limited concentration span mean you can’t realize your own potential at work, can’t sustain an eight-hour day. You’re more impatient and can’t focus. In my younger years, when my focus was only on myself and my work, this was the biggest limitation. I originally studied pharmacy, wanted to work as a pharmacist. But standing in the pharmacy was not possible. I then developed professionally, went into the medical field, then into industry, and work at a scientific foundation mainly on computers.”

“Later came the desire to have a family – then I first had to find a partner who could get through this everyday life with me! And with regard to children, I was well aware that I can’t take care of children as long as I don’t have the symptoms of RA under control and can’t take care of myself independently. The baby phase is a particular challenge in this regard. But it doesn’t get easier as the kids get bigger: You have to dress them, make breakfast, etc. It all sounds mundane, but it’s not possible if you don’t have the symptoms under control.”

The diagnosis

“I wasn’t diagnosed until I was 19 years old: it must have taken three years from the first symptoms to the diagnosis. At that time, of course, I was at a difficult age. Sometimes I was even suspected of simply faking it. Teenagers are at an age of denial, and statements like ‘I just don’t like it now, leave me alone’ are part of that. To make matters worse, at that time people didn’t know that RA could also occur in teenagers. In addition, I had always exercised a lot at that age, so the reason for my symptoms, which in principle could also have been caused by bruises or sprains, was not sought in a chronic illness.”

Heino Prillwitz, MD, specialist in rheumatology from Weinfelden:

“Identifying the cause of symptoms, which in the case of My To-Siegrist is the symptom of pain, is significant for a correct diagnosis and for successful therapy.”

“Different types of damage, such as wear and tear (osteoarthritis) or inflammation, lead to different presentations of pain. Sometimes a “classic” painkiller can help, but sometimes not. In the case of an autoimmune cause of inflammation, for example, the inflammation must be treated first, and then the accompanying symptom of pain will also disappear. Painkillers do not usually lead to the desired success in the case of the above-mentioned inflammation, as the anti-inflammatory effect of these drugs is limited. Sometimes stronger drugs are then needed, which quickly fight the inflammation and lead to the disappearance of the symptom of pain. Identifying the cause of pain and thus making the correct diagnosis is thus essential to initiating the right treatment steps and therapy.”

“If, on the other hand, the patient suffers from wear-related pain, which can occur in the context of osteoarthritis, and if joints are already altered, treatment should not be primarily with an analgesic, but with physiotherapy, cartilage-protecting agents and patient education. Specific pain treatment is only given secondarily or can be used as an adjunct. Sometimes only the combination of several forms of therapy leads to the desired success. Administering painkillers alone is rarely sufficient and can even exacerbate problems.”

“As a rule, for patients it is the symptom of pain that is the focus of their visit to the doctor. For us doctors, it can and must be the cause that needs to be found. Only then can the right choice of therapy be made and symptom relief or even freedom from pain succeed.”

The therapy

My To-Siegrist: “When I was diagnosed with RA, certain medications that I take today were not yet available. So I started with a less effective therapy. So I was more or less injected with anti-inflammatories through my vocational training, because otherwise I wouldn’t have been able to do it at all. That was very important to me, and it allows me to be anywhere professionally today. If they hadn’t done that 20 years ago, I wouldn’t have the professional opportunities I have today.”

“Then when the newer therapy methods became available, it was a huge change for me. Before, I often felt marginalized, both physically and mentally. And suddenly I was back in the middle of life! Today I have a normal life, I have a job, a family, I have children and I can pursue my leisure activities. I have the same zest for life as everyone else, the same problems as other mothers or colleagues at work. I still have limitations: I have to go to therapy every few months, I have to take care of my medications, I’m not supposed to do excessive sports, and if I do, I should do them in a way that’s as easy on my joints as possible. But in general, I have a very normal life.”

Dr. Prillwitz: “Therapeutically, a lot has changed in the treatment of inflammatory rheumatic diseases in recent years. We physicians are glad that we currently have a large selection of different drugs – currently there are about 12 to 14 different substances and more are in the approval process – with which we can initiate the best possible therapy. In therapy, in addition to medication, it is important that the patient accepts being part of the solution and takes responsibility for his or her own body. When this is recognized and internalized, successes are truly measurable and sustainable.”

The therapy goal – freedom from pain

My To-Siegrist: “A normal life without pain, like the one I can lead today, is what many sufferers strive for, because that means having a certain autonomy. Today, it’s me, not the disease, who decides whether I want to spend a day lazing on the couch or doing something.”

“Thus, the achievement of freedom from pain was like a lever that is flipped and the new life, “turns on”, continuous pain changes you personally: Under pain I am nastier, more impatient, more aggressive, have little tolerance with myself or with my environment, because simply the energy for it is missing. Pain-free, one is more open, calmer, can open up to one’s environment again and accordingly also to one’s environment and society.”

Dr. Prillwitz: “When the new generation of drugs became available about 20 years ago, it was a quantum leap for us physicians. We finally had something in our hands with which we could induce and maintain remission of the chronic disease in autoimmunological diseases, such as RA, which was or is quite tremendous.”

“According to the medical definition, remission is achieved when there is a complete reduction in all symptoms caused by the disease. In everyday practice, the emotions that my patients bring with them to the consultation are also decisive. When the disease can be virtually forgotten, daily life is no longer restricted by the disease or symptoms, and one ‘feels healthy’ again, then remission of the chronic disease has been achieved.”

“Unfortunately, it still takes quite a long time for patients to be referred to a specialist in rheumatology. Thus, it can sometimes take years to find a diagnosis. But when a rheumatological disease is then diagnosed and a targeted therapy is initiated, it is sometimes almost like a revelation for those affected, because they have completely forgotten what it is like to master everyday life without pain and to have a normal quality of life again. A patient once said to me, ‘I never thought I could get through everyday life again so carefree, participate in social life again so carefree, and have a conversation with the neighbor again so carefree.’ It’s really like turning on the light and suddenly it’s ‘just like before’ again. When we achieve that goal, it’s very uplifting and motivating for us physicians.”

My To-Siegrist: “Just knowing that remission of the chronic disease is even possible seems like a game changer to me. I got RA at a time when this therapeutic goal was not even an issue. RA was and remains incurable, but now remission of chronic disease is achievable and we have several medications that make living well with RA possible.”

Valérie Krafft, Managing Director of the Swiss Rheumatism League: “Today there is the possibility to get back a lot of normality. This also means that joint deformities can be prevented much more often or that they will be seen less often in the future. But education is crucial here, because remission of the chronic disease does not mean that the disease is no longer there. It doesn’t mean: now the disease is gone, now I won’t take any more medication, because then the symptoms would reappear. That’s where close medical care is also very important.”

Focus topic “Pain” of the Rheumatism League

Valérie Krafft: “I find the enormous impact of being pain-free very impressive. That is why the Rheumatism League has now defined the focus topic “Pain” for 2022 and 2023. This is not easy, because pain is a very complex issue and not a single concept. Inflammation can be treated with anti-inflammatories and the effect is measurable – the inflammation goes down. This is not the case with pain, where complex mechanisms are at work. Pain is a difficult topic and also very personal; pain thresholds can vary widely. But it is extraordinarily central. That’s why it’s important that we as the Rheumatism League address this issue, present it in an understandable way and support sufferers with brochures, podcasts and lots of information.”

“Our brochures are also designed to help patients with their key questions: How can I localize this pain? What about me is pain? What is influenced by pain and what am I myself? Many, especially young rheumatism patients, do not react because they think the symptoms will pass. They think it is only morning pain. But this too can have consequences for everyday life and for the personality. That’s why it’s important to specifically address this pain.”

“In addition to education, our uncomplicated and low-threshold consultations, without registration or waiting times, are extremely important. I remember a conversation with a doctor. He told me that, especially with younger patients, the diagnosis of RA leads to a whole world collapsing. And at exactly this point, when everything falls apart, the Rheumatism League has so much catch-up potential. This is where we can educate, give hope and perspective. Above all, having perspective is incredibly important.”

“Generally speaking, creating awareness is very central. Our information brochures or our information campaigns and online channels play an important role here. To do this, we continually involve both our stakeholders’ council and stakeholders so that we understand the needs of patients correctly and our materials are comprehensible. We also want to provide information about medications, but we are not doctors, we do not prescribe therapy. We show the possibilities, but also the limits. We don’t want to raise false hopes, but we want to encourage people to try something out. Fortunately, there are much better options today than there were 30 to 50 years ago.”

My To-Siegrist: “Encouraging, that’s really the key point here. Thinking back, I have to say I would have loved to have had the Rheumatism League’s number to call and get information.”

Valérie Krafft: “Encouraging gets to the heart of the matter! I also see the role of the Rheumatism League very strongly in coaching sufferers.”

Living with the disease

Valérie Krafft: “During consultations, we often hear that people affected simply feel lost – especially when they are newly diagnosed. They don’t know what the disease means for their lives. The younger someone is, the greater the uncertainty and fear. What is in store for me? Will I have to take medication every day? Can I start a family? Have a professional life? All of this is now steering the disease – it’s like someone yanking violently on the steering wheel.”

“An illness is always very drastic in a life that has a certain routine. At whatever age. It is like a physical attack, which perhaps makes it even more difficult, but everyone deals with it differently. Sometimes such diagnoses can also lead to changes in one’s life, which in the end one even sees in a positive way. We hear again and again statements from those affected who find that it took this meaningful experience for them to notice something. I think you have to try, as with any change in life, to see it as an opportunity, if that’s possible.”

My To-Siegrist: “I see it the same way. For me, my RA is like a marker, my happiness marker. Without my disease, I would take so much for granted in my life that I now consider a happiness. For example, my partner: for years he provided me with a hot bath at 5 a.m. to warm me up and get rid of the morning stiffness. I don’t take that for granted. I might have found such a partner otherwise, but I would never have perceived this the way I do with RA.”

Click here for the website of the Rheumaliga Schweiz

This article was written with the financial support of AbbVie AG, Alte Steinhauserstrasse 14, CH-6330 Cham.

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