One Disease, Different Experiences: Rheumatoid Arthritis
Rheumatoid arthritis, or RA, is an autoimmune and inflammatory disease, which means that your immune system attacks healthy cells in your body by mistake, causing inflammation (painful swelling) in the affected parts of the body.
RA mainly attacks the joints, usually many joints at once. RA commonly affects joints in the hands, wrists, and knees. In a joint with RA, the lining of the joint becomes inflamed, causing damage to joint tissue. This tissue damage can cause long-lasting or chronic pain, unsteadiness (lack of balance), and deformity (misshapenness).
RA can also affect other tissues throughout the body and cause problems in organs such as the lungs, heart, and eyes.
RA is the most common autoimmune rheumatic disorder and affects around one per cent of the population, which is equivalent to about 45,000 people in Singapore.
RA generally starts between the ages of 30 and 60 in women and somewhat later in life in men. The lifetime risk of developing RA for U.S. adults is 3.6 per cent for women and 1.7 per cent for men. However, RA can present at any age — even small children can develop it.
Three ADSG members, Abigail, Louis and Natalie*, share their experiences with rheumatoid arthritis as part of our One Disease, Different Experiences feature for Autoimmune Diseases Awareness Month.
*Natalie is diagnosed with seronegative rheumatoid arthritis. Seronegative rheumatoid arthritis is a type of rheumatoid arthritis in which certain antibodies are not present in the blood (most cases of RA are seropositive -- when antibodies are present in the blood). So if you are seronegative for the antibodies, an RA diagnosis would have to be based on symptoms and other things.
Please describe your journey from the onset of symptoms to diagnosis.
Louis: I realised that my left wrist was painful all of a sudden when I woke up one day. It persisted for a few days and started to affect my daily activities like brushing my teeth (I'm left-handed). Went to see a GP and they prescribed me NSAIDs. After finishing the medicine, the pain returned and spread to all the joints in my body and I went back to the GP again.
I remembered the GP brushed the issue off and told me maybe it was because I'm too stressed due to work as I am working an office job and long hours of sitting in front of a desk contributed to that. I think I was prescribed more NSAIDS and then left. Immediately after I left, I went to visit a TCM physician to relieve my symptoms and did acupuncture. I described my symptoms to the practitioner and she advised me to go back to the GP and do a blood test. So I went back to the GP and insisted that I do a blood test. A few days later I went to receive the report and was referred to a polyclinic and then from there the polyclinic referred me to a rheumatologist in NUH. I only knew of my diagnosis when I went to NUH and after they did a blood test and asked me some questions.
Natalie: It started with sleepless nights and migraines that would not go away for months, thus I had a CT head scan and MRI done but the results were inconclusive. I tired easily, had nagging discomfort in my finger joints, pain in elbows, wrists, hands and fingers when carrying heavy things like laptops, luggage (every two weeks a month I was travelling extensively for work in the ASEAN region), groceries and even simple household chores like cooking and carrying a wok or frying pan. It took more than 4 months before I was diagnosed with RA after I went to the polyclinic which referred me to neurology and then eventually rheumatology.
How did you feel when you were diagnosed?
Abigail: Fearful & lost, as I have never known of such a condition. I knew a friend who had lupus, and I witnessed her condition deteriorate & eventually pass away. That made me fearful of any autoimmune disorder condition.
What was the treatment for your disease like?
Abigail: I was put on Methotrexate (MTX) by the doctor. I started to manage my diet as well.
Louis: The doctor gave me steroid pills to suppress the inflammation while waiting for the immunosuppressants to come into effect. I started with the standard first choice of immunosuppressants which was MTX. I switched to injections as I couldn't take the oral pills due to nausea. Even after switching to injections, I still had nausea and dreaded my injection day every week.
I was also put on Plaquenil (HCQ) at the same time but I stopped shortly after as I started having allergic reactions to it. I was then switched to sulfasalazine which worked well together with MTX. The only side effect I got from that was that my urine can be bright yellow/orange at times. I slowly tapered from steroids after being on it for around 2 years. This combination worked seamlessly for about 2 years with occasional flares now and then but nothing too serious.
Last year, I requested to stop MTX as I was preparing to start a family. I slowly tapered off MTX and I had a long flare that lasted a few months. I felt that my hard work for the past few years went wasted as I went back to being in pain all the time like how I felt when I was newly diagnosed. I was put back on steroids again and started on cyclosporine which didn't really work out and now I am going to try another medication, adalimumab. Hopefully, this will work but I am not looking forward to injections again.
Natalie: I started on Methotrexate and then Sulphasalazine, which resulted in numerous side effects including brain fog, periorbital cellulitis, eczema, skin boils, nausea, retching with vomiting, loss of appetite, tingling sensation on my lips and tongue which led to the loss of taste. The medication also resulted in my blood tests constantly exhibiting low white blood cell and red blood cell counts.
How are you coping with your disease now?
Abigail: Thank god that my condition was detected early. With early treatment, my condition is under control. No more tightness & pain in my knees & joints.
Louis: I still feel that I am quite alone at times. I am lucky to find support online in ADSG as well as another international RA support group on a forum. My parents still don't really understand this disease and they kept asking me what caused me to become like this (Which I do not have an answer for, unfortunately). I mostly confide in my husband and my rheumatologist but my friends were very supportive of me as well especially when I was newly diagnosed.
I do update them on how I feel every now and then but would not wish to overshare as I do not want this condition to overshadow my entire life. On bad days, I do feel very down and have lots of negative thoughts but I try my best to suppress those thoughts by watching funny shows (I'm a huge Running Man fan!) and maybe exercising.
I have to accept that this is my new normal and I cannot do some of the activities that I wished to do before I was diagnosed. Things like opening a new bottle of drink and even rock climbing seem impossible to me now. I hope I can get back to that one day.
Natalie: Since being in remission from late December 2021, I have been maintaining a strict diet + exercise + supplements regime, and closely monitoring flares. There have been small flares occasionally that are bearable and these usually occur when I am off the wagon (consuming red meat, refined white flour, rice products and processed foods). I continue to abstain from raw and semi-cooked foods (since the time I started on Methotrexate in February 2020 as Methotrexate works by curbing the overactive immune activity which in turn reduces the natural defence (immunity) of the body against bacterial infection that could arise from consuming raw or semi-cooked foods) as they may cause some bacterial infection when consumed.
What do you think is important to know about your disease?
Abigail: Family support & knowledge of the condition.
Louis: Just because I look well doesn't mean I feel well. It being an invisible illness makes it hard to show others how I feel. I can be here smiling and talking as normal but my pain scale may be on a 7 or 8 out of 10.
Natalie: Awareness is important as it helps people recognize the signs of the onset of the disorder. Awareness and experience in the management of the disorder with balance in food + exercise + supplements, under the proper care of the rheumatologist, may enable one to go into remission or to have a lower dosage of immunosuppressants, thereby giving a better quality of life.
If you could give your pre-diagnosis self some advice, what would it be?
Abigail: Stay positive. Not to overthink or get pessimistic over the diagnosis.
Louis: Cherish what you can do and live your days doing whatever you want.
Natalie: If it is hereditary, look into the probability and try to get a headstart before any symptoms kick in. Take precautions. In my situation, it is a combination of both hereditary and environmental factors. My mother has both rheumatoid arthritis and alopecia areata (an autoimmune disorder that attacks the scalp leading to hair loss and bald spots). Seek immediate medical advice, especially when encountering the onset of symptoms instead of delaying. Having a headstart will give you a better probability of controlling and managing the AI disorder.
What have you learned from having to cope with your disease?
Abigail: Keep a positive mindset.
Louis: Take it easy on days where you don't feel good, it's ok to not to be ok sometimes.
Natalie: Patience, determination and standing on your own principles, as you will be the only one to benefit from remission, not your friends, relatives or doctors.
Sometimes when you have had the experience of what works for you, like certain exercises or foods which starve off the flares, do continue to follow them, in essence, listen to your body. Do not listen blindly to others as they have not gone through your trials and tribulations and are only speaking from an emotional point rather than with facts and figures, let alone experience. People will call you stubborn but in the end, you benefit from the knowledge and experience that you gain on your own through your own body.
What do you hope for in the future?
Abigail: Total recovery even if it's impossible right now according to experts.
Louis: Remission! If not, minimal pain and be able to do what I like. I want to try rock climbing again and continue my embroidery which I stopped due to the huge flare that occurred last year.
Natalie: There should be more public awareness and public understanding of AI disorders as this is not a physical abnormality that people can see and the majority will never understand nor empathise with. We do not want sympathy but empathy. Moreover, a high percentage of people have not even heard of autoimmune disorder let alone know how crippling it is to the quality of life. More needs to be done to educate the public, essentially it has to start with government initiatives, together with private & public sector medical specialists in the AI field, via community outreach campaigns or programs.