Medical News Today: Through my eyes: Autoimmune conditions
There is currently no cure for any of the autoimmune conditions I have.
Healthcare professionals define autoimmune conditions as occurring when the immune system, which normally protects the body from infection by fighting bacteria and viruses, behaves abnormally by attacking the body’s own healthy cells.
This causes inflammation in the joints, organs, blood vessels, tendons, skin, and more.
Many people refer to it as having an overactive immune system.
Although some of the symptoms overlap, each of the autoimmune conditions I have are distinct. They exist simultaneously and are therefore comorbid.
None of these conditions are contagious, there is currently no cure for any of them, and their causes are unknown.
We only know that some people’s genes predispose them to these conditions, and that environmental factors trigger them.
For example, it is possible that stress, hormonal changes, or a minor infection such as a cold virus triggered mine. Other people may develop autoimmune conditions following pregnancy, trauma, or injury.
Where it all started
It all started for me when I was around 14 or 15 years old, and I started to get dry skin on my scalp, ears, and elbows. I had general aches and pains, which were problematic for me because I represented my school in hockey, tennis, and athletics, while spending most of my free time playing sport, swimming, or riding my bike.
I remember being told that it was probably a combination of “growing pains” and eczema, and that I would grow out of it.
What I actually had was psoriasis, but it would be 10–12 years before I received that diagnosis. I now know that in psoriasis, the immune system causes skin cells to develop too rapidly, and that they can build up into sore, dry patches called plaques. Psoriasis can affect the joints and develop into a form of arthritis, which is what happened to me.
By the time I started university, I was still suffering vague aches and pains, and when I started feeling tired all the time, I visited a drop-in clinic on campus. The doctor told me that a lot of students had glandular fever, that I should rest, and that it would pass.
During that time, I stopped playing sport altogether and found studying and working part-time completely exhausting. Looking back, I think I was probably experiencing autoimmune symptoms, but I didn’t really have the energy or the worldliness to pursue a more accurate diagnosis.
In my early 20s, the extreme fatigue returned, and I also had a number of new symptoms: feeling cold all the time, thinning hair, puffiness around my eyes, kidney infections, and intermittent chest pain. I was working full-time and finding it difficult to concentrate or even get up.
“This came to a head when I was on holiday in Paris, when I was so exhausted that I could barely walk and just wanted to sleep.”
I remember forcing myself to walk up the all the steps at Notre Dame and feeling that it was a real triumph, when that should’ve been something a person of my age could easily do — especially someone who loved cross country and used to run 1,500 meters for fun!
After more tests, I received a diagnosis of Hashimoto’s thyroiditis, which had developed into hypothyroidism. This occurs when the immune system attacks healthy cells in the thyroid gland.
As an otherwise fit and healthy vegetarian, I was shocked that the underactive thyroid had also caused high cholesterol — hence the chest pain. The doctor explained that I would have to take replacement thyroid hormone tablets (levothyroxine) every day for the rest of my life.
I still need to have my thyroid function tested regularly and have the dosage adjusted from time to time, as mine has never fully balanced. There is quite a complex feedback loop, so for many people (including myself), holding a diagnosis and being prescribed levothyroxine does not mean that all of the symptoms go away.
There are still times when my levels will be outside the normal range, which causes me to feel fatigued and get puffy eyes. My hair also starts falling out when I wash it.
A few years later, I started to get stiffness in my elbow. A doctor told me that it was most likely to be tennis elbow, but it didn’t improve; and when I started to get swollen toes, they told me it was probably gout!
‘It felt like constantly having flu’
I started trying to research what might be wrong with me. When my hands and knees became hot to the touch, painful, and swollen, my doctor referred me to a rheumatologist, who confirmed that I had psoriatic arthritis (PsA).
Although I was only in my 20s and thought that arthritis was something only older adults got, it was actually a relief to finally receive a diagnosis. I was dealing with an employer who was skeptical that there was anything wrong with me, even making it difficult for me to attend medical appointments.
The rheumatologist prescribed diclofenac, which I couldn’t tolerate because it caused side effects such as gastrointestinal problems.
We discussed starting the drug methotrexate, but it has numerous side effects and comes with restrictions on its use by people planning to have children. So I decided against it.
Up next was sulfasalazine, but I had an allergic reaction to it. I experienced dizziness, breathing difficulties, anxiety, hives, sweating, a red and swollen face, and swelling in the throat.
My rheumatologist later confirmed that I had experienced an anaphylactic reaction, and that I should have gone to the emergency room.
A few years later, I had another allergic reaction; this time to a drug called trimethoprim. I have since learned that sulfasalazine and trimethoprim are in the same family of drugs called sulfonamides, and that being allergic to them can signal lupus.
Following those experiences, I was reluctant to take any new medications. So, for several years, I took nothing stronger than paracetamol while continuing to see my rheumatologist for aspiration of my knees, which involves inserting a long needle into the joint to draw off a buildup of synovial fluid.
The most challenging time for me was in my early 30s, when I started to get new, more debilitating symptoms. As well as swollen joints from PsA, I started to experience pain and swelling in my muscles and tendons.
“At times I felt so weak that it was difficult to climb a flight of stairs, and I was unable to do so without stopping for a rest.”
It felt like constantly having flu. My body would feel very heavy, and it would be a huge effort just to sit up in a chair for prolonged periods. If I took a nap, I didn’t wake up feeling rested and ready to go; I often felt worse afterward. That is the difference between ordinary tiredness and fatigue, and this was the worst fatigue I had experienced so far.
I was working full-time while having to fit in repeated medical appointments for treatment. I would be tested for something, the test would come back normal, I would have to make a new appointment, new tests would be ordered, then they would come back normal. This went on for at least 2 years.
There seemed to be no continuity in diagnosis, and I even had one doctor Google my symptoms in front of me. I live in the United Kingdom and am a strong supporter of the National Health Service (NHS), having had countless good experiences. But at that time, the surgery I was registered with was not meeting the required standards, so the Care Quality Commission eventually closed it.
I knew my symptoms were different to arthritis and that the cause must be another inflammatory condition, so I spent a lot of time reading about other autoimmune conditions. When I started experiencing mouth ulcers, memory problems, and a tell-tale butterfly rash on my face, I began to suspect that I might have lupus.
Lupus can be triggered by ultraviolet light, and one thing I noticed was that I would often feel ill on holiday. After undergoing several blood tests, a rheumatologist finally confirmed a diagnosis of systemic lupus erythematosus.
Despite this being a diagnosis that nobody would want to receive, I felt oddly hopeful; at least I had a confirmed diagnosis and could focus on treatment.
The rheumatologist and rheumatology nurse were incredibly supportive. We discussed the treatment options, and they prescribed me vitamin D, folate (folic acid), and hydroxychloroquine. After experiencing issues with the latter, they prescribed me methotrexate — the same drug I had decided against taking in my 20s.
The main way to treat autoimmune conditions is to prescribe immune-supressing drugs. However, in my case, in addition to these autoimmune conditions, I also have selective IgA deficiency. This is an immune deficiency I was probably born with that leaves me more susceptible to certain types of infection, mainly in the gut and respiratory tract.
Focus on things you can still do
I don’t smoke, but in the past 10 years I’ve had bronchitis (twice), laryngitis, tonsillitis (several times), and pneumonia. As a result of this, I have ongoing concerns about taking medications that will supress my immune system further.
Weighing up the potential risks of continuous inflammation (further joint damage and a higher risk of cardiovascular disease) versus taking immune-supressing drugs has been an ongoing dilemma for me.
Developing an allergy to medication is a real concern, and although methotrexate is well-tolerated by many others, I have been anxious to start this medication based on past experience.
Pursuing my diagnoses has been frustrating.
It has been a long and frustrating journey for me pursuing diagnoses, and this is often the case for people with autoimmune conditions — especially lupus, which can mimic so many other conditions.
If you think you might have an autoimmune condition, or you already have one and think you might have developed a second, ask a doctor whether they would consider carrying out an antinuclear antibody (ANA) test.
This test detects antinuclear antibodies in the blood and is an indicator for autoimmune disease.
Other factors can also contribute to a positive ANA result, so it is important to discuss the results with a doctor so that they can take into account your symptoms and consider further tests.
Autoimmune disease has affected my life greatly; from giving up bass guitar because I could no longer hold down the strings to lacking the required strength and flexibility in my knees and tendons to continue surfing.
However, unless I’m having a flare (when even lifting a kettle is difficult), I can still ride my bike, swim, and play drums (gently). I also have a very supportive partner and an understanding employer.
I try to focus on the things I still can do and work with my rheumatologist to prevent further damage to my joints and tendons.