Wednesday, 19 March 2014

Living With PsA: The Drugs, The Side Effects And That Photo

Good Day Everyone,

 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.

Today I wanted to continue from last week’s post and talk about living with psoriatic arthritis (PsA) but this time focussing on my experience with the different medications I’ve tried. As I mentioned in last week’s post my rheumatologist back home in England started me on a steroid called prednisolone whilst we waited for my first set of blood test results. By the time I went back to see him to get my results I had started to suffer from quite bad insomnia as a side effect of the steroid and so my rheumatologist reduced my steroid dose and started me on a drug called Arcoxia (etoricoxib) to help with the pain and inflammation.

I remained on this combination of medicines for around 18 months and for the last eight of these months we were living in Singapore which is where we currently live (we moved over in May 2011). However, even though I was on a lower dose of the steroid, over the course of the 18 months I developed the classic side effects associated with prolonged use of steroids such as weight gain on my face and stomach. I’ve always been a slim person and I always thought that I would be able to deal with any weight gain as a result of my medication with confidence and dignity, if it was helping my arthritis... boy was I wrong!

Being only 4ft 11inches tall, any weight gain is very obvious on me. Also, I’ve always had an oval shaped face with no real cheek bone or jawline definition but the puffiness in my face due to the steroid was taking it to a whole other level. My face looked like a balloon. My cheeks became so huge that they were drowning my otherwise large nose and I had gained the most enormous double chin. My stomach just kept getting bigger and bigger even though I’m a relatively healthy eater. As I moved up in clothes size the weight gain really started to take a toll on my confidence and self-esteem. I hated looking in the mirror or shopping for clothes which I had to do as I got bigger, but worst of all I didn’t feel that this drug combination was helping with my arthritis. Yes it made the pain more manageable and helped with the inflammation but the arthritis was still progressing to more joints. It looked as though the time was coming for me to move on to a DMARD (disease modifying anti-rheumatic drug). 

For the last seven months of 2011, I was working in a temporary role as we settled into life in Singapore. I had almost an hour commute each way to work and worked quite long hours. The long hours and the commute started to take a toll on my joints. Not only that, but as my hubby also worked long hours we would often get home after 8pm and then be too tired to cook / prepare supper. As a result we were either eating foods that I wouldn’t really classify as a proper meal like fruit, cereal, bread or we were eating frozen foods that we could bung in the oven. 

As well as the arthritis, I was suffering from regular migraines which I suspect were due to the lifestyle of working long hours, always being tired and not eating as regularly or as healthily as I should. The migraines would often occur behind one of my eyes and would actually affect how much my eye opened. It was one weekend in November 2011, when we were out having a coffee and my hubby sat opposite me that he noticed how bad my eye was. There was a very obvious difference in how much less the migraine affected eye was opening compared to the eye that didn’t usually get a migraine behind it. My hubby took a photo of me on my iphone to show me. That photo shocked me and was the catalyst to the subsequent changes that I made to my life. Not only did the photo highlight the difference in my eyes, it also captured my steroid induced weight gain but more than either of those, the photo captured a despair and unhappiness that was so apparent in my face and body language. I could tell from that photo that I was truly unhappy and lacking in confidence, self-esteem and my usual happiness. There and then I decided that I could not carry on being so unhappy and that I was going to take control of my health and my life.

The first change I made was to give up work in December 2011. It wasn’t an easy decision as it meant that our household income dropped dramatically and Singapore is an expensive place to live but my hubby totally supported me and insisted that I take time out to concentrate on me. The second big decision I made was to come off the steroid medication as my gut feel was that it was no longer helping to manage my arthritis. Plus if I was going to move onto a DMARD, the next level of medication for my arthritis, then I wanted to be in a better state of mind and the weight gain was really depressing me. I weaned myself off the steroids gradually as it isn’t recommended that you stop them suddenly. 

By the time I was completely off the steroids in February 2012 I had already lost 5kg (11lbs) and that was without exercising and just eating a bit more healthily. Not working meant that my hubby and I were eating more fresh home cooked foods rather than convenience or processed foods. Around April 2012, after lots of research into the types of exercises that might help manage arthritis, I started to exercise on a regular basis. It wasn’t anything intense as I couldn’t run due to the arthritis in my knee and toes, and I couldn’t do the bike due to the arthritis in my hips. I started with just walking 3km on the treadmill, doing a few free weights. Before long, I started to feel good. I felt happier within myself as the weight came off (in total I lost 10kg (22lbs)) and I saw improvements in the time it took me to walk the 3km. When I first started in the gym, it was taking me almost 45mins just to walk 3km but after about six months of perseverance it was taking me less than 25mins. I bought a yoga mat and started to do some yoga inspired stretches which really helped with the joint pain in my larger joints like my hips and spine. I also started hula hooping which I absolutely love and luckily I had brought my hoop with me to Singapore.

By the time my mum and brother came to visit us in July 2012, I was back to my old happy self. I had gotten into a good routine of exercising daily Mon-Fri, always walking my 3km on the treadmill followed by some free weights and then either yoga inspired stretching or hula hooping. On the weekends, I wouldn’t go to the gym but instead go for walks with my hubby. I cannot tell you what a huge difference the exercise and healthy eating made. I felt so good. Life was good.

However, despite all the good of the exercise and healthy eating, the arthritis continued to spread to more joints, albeit at a slower rate. Early in 2013 I had a couple of really bad episodes of such severe fatigue that it left me bed bound. I didn’t even have the energy or strength to shower or cook on some days. It didn’t seem to matter how much I rested, the fatigue would just not ease and lasted 2-3 weeks at a time which meant I couldn’t even exercise or go out. So in April 2013, I decided it was about time I found myself a rheumatologist in Singapore. Since our move to Singapore in May 2011, I had simply been going to see a local GP (family doctor) to get repeat prescriptions of my steroid and / or Arcoxia. 

At the end of April I went to see a rheumatologist in Singapore. He took my medical history, conducted blood tests to check my inflammation levels and x-rayed all of my joints to look for joint damage. The results showed that my inflammation levels were quite high and he recommended that I start taking a DMARD in an attempt to slow the progression of my arthritis. He suggested one of the newer types of DMARDs known as anti-TNFs (anti-tumour necrosis factor) and I can’t say that I was surprised that he recommended one of the newer ones because they are a lot more expensive than the older ones. The reason I am highlighting this is because the healthcare system in Singapore is very different to the UK. In the UK, the doctor would typically write a drug prescription which a pharmacist would then dispense. In Singapore, however, most doctors dispense the medication themselves so naturally the more they dispense or the more expensive drugs they dispense the more money they make, I assume. It’s very common in Singapore to go see a doctor about a sore throat or a cough and walk away with half a dozen different drugs, each for a slightly different symptom!

Now you may think that I’m being cynical but whilst I’m not a qualified healthcare professional, I did spend many years working in the healthcare and pharmaceutical industry where I learnt about different drugs and diseases, including anti-TNFs and arthritis. I know that if I was in the UK, the guidelines would stipulate that the doctor should put me on one of the older DMARDs first before moving onto one of the newer ones. However, this may well be to try and control costs as the newer DMARDs cost thousands of pounds a month. In Singapore, we would be paying for my treatment directly out of our own pockets and so from a healthcare system perspective cost is no issue.

But cost was an issue for us especially with me not working. You see as well as the expense, the newer DMARDs can take up to three months to have an effect so we could fork out thousands of pounds only to find that the drug has had no positive effect on my arthritis and then we would have to go to the expense of trying another. Also the newer DMARDs are administered either as an IV drip or as intramuscular injections and I am severely needle phobic. In addition, the newer DMARDs have some very serious side effects such as cancer and organ damage which means you need to have a whole host of tests on a regular basis to check for these side effects. Some of these side effects can even be fatal. 

After some deliberation, I decided to try one of the older DMARDs because it was an oral tablet, it had been around longer than the newer DMARDs and so its long term side effects were well documented and it was much cheaper than the newer DMARDs. I had the choice between methotrexate (a chemotherapy drug that is also an abortive agent) or sulfasalazine (an anti-inflammatory drug developed to treat arthritis). I opted for the latter because the drug itself and the side effects seemed less scary.

Here’s another thing about healthcare in Singapore that’s different to the UK, in the UK all prescription drugs come in their original boxes along with a patient information leaflet but in Singapore most drugs are given to you as a blister pack in a clear plastic bag without the original packaging and without a patient information leaflet – to me that is seriously scary because not once has a doctor in Singapore ever explained to me or highlighted what the side effects might be for any of the drugs that I’ve been given, and without a patient information leaflet, it basically comes down to the patient to take the initiative to research the drug they've been given on the internet!

When I started on the sulfasalazine in May 2012, the rheumatologists didn’t give me a patient information leaflet nor did the drug come in the original packaging. I was given either two or three weeks’ worth of the drug as tablets in blister packs in a clear plastic bag. The rheumatologist didn’t highlight any side effects that I might suffer from at all and simply said to call his office if I had any questions. That was it!

What followed over the next two to three weeks was absolutely awful. Within a couple of days of starting on the sulfasalazine I started to suffer from daily chronic headaches, my urine was bright yellow which is a relatively painless side effect, I had a huge loss of appetite and bad stomach pains. All these side effects made me feel so much worse than my arthritis did but I persevered in the hope that as my body got used to the drug, they would ease. To make matters worse, sulfasalazine needs to be taken after food because otherwise it irritates the stomach but because I was suffering from a lack of appetite quite severely, I really struggled to eat and so one day I took my daily dose after just having a slice of toast. That one slice was not enough because I then developed the most severe stomach pains ever as a result of not eating enough to line my stomach.

By the time I went back to see the rheumatologist 2-3 weeks later, he agreed with me in that it didn’t look as though the side effects were going to ease and quite frankly I couldn’t deal with them any longer and so I came off the sulfasalazine. The rheumatologist suggested I try the methotrexate but I decided I needed a break to recover from the sulfasalazine side effects and wanted some time out just on the Arcoxia which I have no side effects from and tolerate well. 
With my rheumatologist being Chinese I asked him about Chinese medicine and any other complimentary medicines / therapies that he thought might help but he was incredibly dismissive about these, so much so that he just didn’t seem prepared to discuss these, or even the role of food and exercise, saying that none of these things were proven to slow the progression of the disease down. He may well have been right but I guess a part of me couldn’t help but think that perhaps he was so dismissive of these complimentary therapies because he doesn’t stand to make any money out of them, unlike the drugs! I don’t know, maybe I’m being too harsh on him. But I find it very hard to trust that a doctor has my best interest at heart, when I know he most likely makes money on the more drugs / more expensive drugs he dispenses to me, not to mention all the follow up consultations and tests monitoring the side effects.

So since June 2013 I have just been taking my Arcoxia, managing my stress levels, eating healthily, stretching and exercising and getting lots of rest. I have to say with the odd exception of some severe fatigue episodes and a couple of painful flares, I’ve been feeling pretty good. I know many doctors and even fellow arthritis sufferers may disagree with my approach and feel that I should be taking a DMARD to try and slow the progression of my arthritis rather than simply managing the symptoms of pain and inflammation and that’s fine because everybody is entitled to their opinions. But for me, I want to delay moving onto the more toxic and potent drugs for as long as possible because whilst they may, and it is a big may, be effective in slowing the progression of my arthritis, that benefit is most likely to come at a cost of side effects which leave me feeling worse than the arthritis itself!

Are you an arthritis sufferer? What drugs have you tried? What has been your experience?

Love Sheen xxx

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