A quick disclaimer to say that I am not a medical professional and that you should not make any changes to your psoriatic arthritis medication and/or treatment without discussing it with your doctor first. This is simply my personal experience of living with psoriatic arthritis.
This post has been a long time coming. I have written and then re-written this post several times, never quite being happy with it. My PsA is such a big part of my life and affects my life on a daily basis in ways that many people probably don’t realise / appreciate and as a result I have so much to say on the topic that I was struggling to condense my thoughts. I did even consider abandoning the whole idea of discussing life with PsA, but I know at least one of my regular readers also suffers from arthritis, and I know she finds such post interesting (as do I) and so I decided to persevere. I have decided to break it down into bite size chunks in a chronological order so that I can take you on my journey, as it happened. So let’s start from the beginning, shall we?
Before I jump into my journey I just thought I'd share what PsA is (via wikipedia):
Psoriatic arthritis is a type of inflammatory arthritis (joint disorder) that develops in up to 30% of people who suffer from the skin condition psoriasis. Symptoms include swelling, pain, and stiffness in the joints, sausage like swelling in fingers / toes. In addition to the pain and swelling, there is extreme exhaustion that does not go away with adequate rest. There is no cure for the disease and whilst it can be mild, it can also progress to more destructive joint disease. The exact cause of the disease is unknown.
I vaguely remember my sister in law asking me why I was limping during the Christmas holidays in 2009. I told her that I had a bit of hip pain and had probably slept funny. And that was it – dismissed! I never gave that pain a second thought.
End of January 2010, I started a new job and a couple of weeks into the job, I remember colleagues commenting that I was limping and hobbling. Again I mentioned that I had a bit of hip pain thinking that I’d probably just trapped a nerve. I was given the nickname Grandma at work as I struggled with the stairs to our first floor office ;o)
I don’t have any specific memories of the next few months with regards to the hip pain but I do recall that I went to see my GP (doctor) several times complaining that the pain was getting worse. I was prescribed various anti-inflammatory drugs, none of which did much good! My apartment was on the first floor (there was no lift in the building) and I recall being in a lot of pain every morning and evening when I would go down and back up the stairs.
The next significant memory I have is of May 2010. I had to fly to several cities in the US for work meetings. The 7hr flight to New York wasn’t a problem as I had traveled business class and spent most of the time lying down. However, I then had to wait several hours at the airport before boarding a transfer flight to another city and with this being a short haul flight (3-4hrs) I was in economy. Sitting around the airport for hours had managed to trigger a severe case of hip pain. I tried walking around (which was difficult with a heavy laptop bag) but that didn’t seem to help. The pain was getting worse and being so far away from home and anyone I knew was making me really anxious. Then came the worst pain I have ever experienced relating to my arthritis. During the short haul flight the pain in my hip became agonising. Not only that but it also seem to have spread to my other hip. It hurt to be sitting down. I was so desperate to stand up just so that I could take the weight off my hip joints.
Unfortunately, as the flight was going through a storm there was no way I could stand. I felt like screaming and became increasingly stressed out by the pain and not knowing what I was going to do. Tears started streaming down my face, such was the severity of the pain. I remember pulling my blanket up to my neck and kind of burying my face into it so that the guy sat next to would think that I was just sleepy and not see me crying. I slouched down, as low as I could, into my seat and crossed one leg over the other and tilted onto the hip of my bottom leg so that I could take the weight of the other hip for a bit of relief from the pain. A few minutes was all I could manage before the pain became unbearable and I swapped my crossed legs to give the pain stricken hip a break for a few minutes. That’s how I spent the next few hours, crossing one leg over the other with my face buried in the blanket trying to sob as quietly as I could. Getting of that plane was the most relief I’d ever felt. It was a-mazing to be able to stand up. It was there and then I decided that as soon as I got back home I was going straight to see a specialist doctor and not my GP, who I felt was not taking my pain seriously.
Once back home I made an appointment with a rheumatologist. On the day of the appointment I woke up to find that two of my fingers had swollen severely. They looked like sausages and were incredibly stiff and painful. I remember showing them to a few colleagues at work that morning and that’s when I realised what I had. Arthritis! Sausage fingers being a classic sign / symptom.
At the hospital that afternoon the rheumatologist listened to my complaints, he watched the way I walked to check my hobbling / limping, he watched me climb up and down a couple of stairs and watched me rise from a seated position (I’d started to have difficulty rising from my chair at work or the sofa / bed at home). He also took a very detailed medical history, examined my sausage fingers, and upon me mentioning my psoriasis history, he immediately made the link and told me that he thought I had Psoriatic Arthritis (I’m surprised my GP hadn’t made this link). He did blood tests to rule out Rheumatoid Arthritis (RA) and prescribed me some steroids (Prednisolone) to treat the inflammation, whilst we waited for the blood results.
After just 3 days on the steroids I was literally running up and down the stairs again. My fingers were still stiff but looked a little less swollen. I carried on with the steroids for 2-3 weeks but then started to suffer from really bad insomnia as a side effect from the steroids. At my follow up appointment with the rheumatologist he confirmed that I had tested negative for the rheumatoid factor (so it wasn’t RA that I had) and confirmed that in all likelihood I had PsA (psoriatic arthritis).
Finally, after 6 months I actually had a name and cause for my pain. We discussed how I was getting on with the steroids and the severe insomnia that I had developed since starting them. So my steroid dose was reduced and I was also prescribed a drug called Arcoxia (etoricoxib) to treat my pain and inflammation.
Unfortunately the medication that I was on was simply treating my symptoms of pain and inflammation, but it wasn’t stopping the disease from spreading to other joints. The months following my diagnosis saw the arthritis spread to the top half of my spine, a knee, and a shoulder joint, plus I’d developed psoriatic nails on my hands (discussed here). I saw the rheumatologist several times over the coming months and we discussed other treatment options such as steroid injections in the hip joint (which was a particularly painful joint for me), and starting me on a DMARD (disease modifying anti-rheumatic drug). DMARDs are a class of drugs which slow down the progression of the disease. Given that there is no cure for PsA, the next best thing is to try and control / slow down the progression of the disease and as a result most patients with PsA do end up on one or more DMARDs.
However, we never progressed onto one of these options as ten months after my diagnosis my hubby was offered a job opportunity in Singapore which we took. Since moving to Singapore my arthritis has had periods where it’s been quite stable :o) and times when it has really flared up :o(. It has also continued to spread to new joints. Today, I have arthritis in several large and many smaller joints e.g. both shoulder joints and collar bones, top half of my spine, both hip joints, one knee, toes in both feet, one wrist and five fingers… that’s a lot of joints.
Medication wise, I am just on Arcoxia now, albeit at a higher dose and I no longer take the steroids (I'll cover why in a separate post). In 2012 I did go on to a DMARD called sulfasalazine but had a terrible experience with the side effects and came of it after a few weeks (I'll cover this in more detail in a separate post).
Like most illnesses / diseases PsA is a complicated condition and there is so much more that I could talk about from my experience of the drugs I’ve tried, to how it affects me physically, emotionally, to the practical impact it has had on my day to day life and on my relationships with people, and my experience with doctors. All of this is way too much to cover in one blog post and so I will continue with my experience in another post.
Do you or anybody you know suffer from arthritis or PsA? I’d really like to hear from fellow sufferers as I personally don’t know anyone who has PsA or even another type of arthritis who is similar in age to me.
Love Sheen xxx