It's important to stay in touch with friends

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PantherMedia / Wavebreakmedia ltd

Judy, 58 years old

“My doctor x-rayed my swollen finger, couldn’t see anything unusual, and then prescribed a cream for me. But things didn't get better. In fact, my wrists started swelling too after a while.”

When I was about 45 years old I got ill on holiday and my ring finger was swollen afterwards. At first I thought it was still related to the illness. I used to go hunting at the time and also played a lot of tennis. But that was a bit difficult with the swollen finger, so I went to the doctor.

My doctor said that I had sprained my finger. He x-rayed my swollen finger, couldn’t see anything unusual, and then prescribed a cream for me. But things didn't get better. In fact, my wrists started swelling too after a while. My doctor referred me to the university hospital because he thought I might have Lyme disease. That turned out not to be the case, though.

I was given steroids at first

But the pain and other symptoms got worse so my doctor referred me to a rheumatologist, who soon diagnosed me with rheumatoid arthritis. The rheumatoid factor levels in my blood were normal to start with. They only increased later.

I was given steroids at first. That didn't help for long so I was prescribed methotrexate too. But that didn’t help for long either, and we kept having to increase the dose.

Then the doctor advised me to have treatment with a new drug called rituximab. I felt really unwell the first time I had a rituximab infusion. The doctors had forgotten to give me steroids beforehand, although that’s usually recommended. They had to stop giving me the infusion because I was in a lot of pain and had bleeding in my throat. I then went back for another rituximab infusion, but this time they gave me steroids beforehand and it was fine. I’ve been going back for infusions twice a year ever since. I also take methotrexate every week and steroids every day. I regularly do physiotherapy and occupational therapy too. That really helps.

I find infusions hard to deal with emotionally

I find the infusions really hard to deal with emotionally. Having to lie in the doctor's practice for four to five hours each time, surrounded by other patients...it’s not that easy. I’m always really exhausted afterwards. But the next day I have loads of energy and feel like I could take on the world. I don't know what gives me that buzz.

All that medication affected my liver. I try not to take painkillers and don't drink any alcohol because I don't want to damage my liver even more.

I organize the medication at the beginning of each week

I found it quite hard to manage all the different medications at first. For instance, I used to have a medication that had to be kept cool. I remember going on holiday at the time. We always had to make sure we could get hold of ice cubes to keep it cool. That was quite tricky. Nowadays I organize the medication at the beginning of each week – both for me and my husband, who has dementia. I always document everything too. For instance, which operations I’ve had, and when...and which medications I take. Just in case something happens to me, so other people can find the information.

I think it's important to take my medication regularly at the prescribed dose, and also to go to my doctors’ appointments. I’m quite strict about that. But I try to focus on enjoying life otherwise, rather than on my disease.

I have to go for a check-up four times a year. One of my friends also has rheumatoid arthritis and goes to the same doctor as I do. We always go to the check-ups together, and look forward to our trip there.

I understand the blood test results nowadays

I understand the blood test results nowadays. Over the years I’ve found out more about what they mean, and it has been quite fun. When I retired after working for 40 years, I got bored after a few months and started finding out more about my disease. I bought books and read a lot.

Whenever I have a blood test I ask for the results and make a note of them. I get on well with my rheumatologist. I feel like I’m in good hands with him.

I’ve had a lot of operations, especially on my hands. On my foot and shinbone too, and I also had knee replacement surgery. All of the operations went well. I always felt very relieved afterwards. My feet were really damaged. Every step felt like I was walking on broken glass. It was so painful. But after the operation the pain was gone. My knee operation went really well too.

At some point I started having fewer flare-ups

I often had flare-ups. The pain was almost unbearable, and my joints were red and swollen. I had flare-ups like that about one to three times a month. I couldn't even open a popper button. Then my doctor prescribed me very high doses of steroids. That helped, but also caused water retention, particularly in my face, which wasn't so great. At some point I started having fewer flare-ups, probably because of the medication I was using. The pain has improved now, but I still have to take medication regularly. One thing I notice really clearly is changes in the weather, especially before storms or heavy rain. Then my joints hurt again.

My husband and I make quite a good team

My husband has dementia, and my hands have become deformed so I need help. We make quite a good team. He helps me as much as he can. For instance, he peels the potatoes, which I can’t really do anymore. And I do things for him that he can no longer do because of his dementia. We've settled into this new way of life. I’ve accepted that I have this disease and have made changes in my life to cope better with it. My husband and I have traveled a lot and we've had a great life, despite our disabilities.

I’m very lucky to have a lot of people in my life who help me. I found it very hard to accept help at first. I always tried to do everything myself. For a long time I just couldn’t face having to ask someone to cut my meat for me when eating out, for instance. But that’s not a problem nowadays. Having other people help me in everyday life gives me a sense of security. My brother and nephew often come to help me, one of my neighbors irons for me, another mends things for me. With the help of these people I can manage quite well with my disease.

It’s important to stay in touch with friends

I find it important to stay in touch with friends. When you're in pain, it’s easy to become a bit grumpy or moody. And it's important not to snap at people, the way you might sometimes do when you’re in a lot of pain.

One thing I can’t stand is when people try to make me feel better by pointing out that others are even worse off than I am. I really can’t stand that. I know that some other people are worse off than I am, but I think that we all find what we’re going through hard enough to deal with. I also don’t want to hear any tips or advice from other people. I just can’t be bothered any more. I used to listen to it all in the past, but I’ve stopped doing that. I've become stronger in myself.

My hand splint was designed by a jeweler

I’m quite content with my life, despite my hands being quite deformed. It looks pretty bad, but I’ve got used to that too. I have a splint for my left hand. But not any old splint...I actually had it designed for me by a jeweler who specializes in splints. It’s made out of silver and looks amazing. People often comment on it. I wear the splint all the time. My hand has stayed straight because of that, I think.

The same jewelry designer also changed my necklaces and put magnetic clasps on them instead. So now I don't need any help when putting on or taking off necklaces. I had difficulties using normal clasps because of my fingers.

I have quite a lot of aids, and my bathroom has been adapted

I can no longer open and close buttons or zippers either. I only wear elasticated trousers, and always ask a tailor to sew loops onto my trousers so I can pull them up using my thumbs. I also use a special device to help me put on stockings, because I can’t do that anymore otherwise.

And I use special cutlery, such as a cutting knife with a bigger handle. I use various devices and gadgets to open bottles and tins, and I have scissors with special handles too. I have quite a lot of different aids.

We had our bathroom adapted as well. I could hardly get out of the bathtub anymore. My health insurance covered part of the costs. Using toilet paper is tricky for me too. So we now have a toilet that automatically rinses and dries you.

You often hear that disabled people are left to fend for themselves. I don’t get that impression. I think that disabled people get a lot of help in our country. But you have to look into it a bit yourself and apply for things. My rheumatologist helps me a lot with that. I’m grateful to have a lot of good support.

Acknowledgment

Our real-life stories summarize interviews with people who are affected by the medical condition. Our interview partners have given us permission to publish their stories. We would like to express our sincere thanks to them.

The real-life stories give an insight into how other people cope and live with a medical condition. Their opinions and comments are not recommendations by IQWiG.

Please note: The names of our interview partners have been changed to protect their identity. The photos are of models.

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Created on May 20, 2020
Next planned update: 2023

Authors/Publishers:

Institute for Quality and Efficiency in Health Care (IQWiG, Germany)

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