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

Living With Psoriatic Arthritis (PsA): Initial Symptoms & Diagnosis

Good Day Eveyone,

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

Making Up For Lost Makeup Time

Good Day Everyone,

In the past 6-12 months I’ve probably bought more makeup than the past 6-12 years (believe me these pictures are just the tip of the iceberg ;o). It’s not that I didn’t used to wear makeup, I just wasn’t ever that passionate about it. However, I’m sure we’re all familiar with the saying ‘you don’t know what you’ve got ‘til it’s gone’? My makeup didn’t go anywhere, in case you were wondering, but what did go was my ‘mojo’ and my zest for life.

The steroid medication that I was taking to manage my arthritis made me gain so much weight that my petite frame of 4’ 11” (1.49m) was being distorted out of proportion (or so I felt!). I moved to Singapore being a size bigger than I was used to and whilst here I just continued to gain weight. I hated looking at myself in the mirror and as I got bigger and puffier I stopped bothering with makeup and taking pride in my appearance. I was incredibly down in the dumps. When I gave up work to concentrate on my health I had less of a reason to wear makeup because I was at home most of the time - nobody I knew was going to see me!

However, as I came of the steroids, lost the excess weight and started exercising to manage my arthritis I found myself again :o) I still take medication for my arthritis but this one doesn’t have weight gain as a side effect! Losing the excess weight was a huge confidence boost! I had to go out and buy a new wardrobe in my smaller size 10. Whilst I’m not the slimmest I’ve ever been, I suddenly had a huge appreciation for my slimmed down figure. I didn’t care about being a size 6-8 again like I was in my 20s, I was just overjoyed at not being a size 14 anymore and more importantly looking in proportion again. I no longer despair about having wobbly thighs or not having a flat stomach or prominent cheek bones. Instead, I now appreciate the figure that I have more than ever before because I know one day, as my arthritis progresses over time, I will have to go onto more potent medication that will most likely result in weight gain. So until then I’m going to make the most of the figure I have :o)

Over the past few months I’ve been re-discovering makeup (as you can see from the photos) and have developed a bit of a passion for it. Its sooo colourful and sparkly and pretty – I love it, plus having Sephora nearby really helps! Having more time on my hands has meant I can actually shop at a more leisurely pace which has led me to explore and seek out new products. I also had a special event recently (more on this to come) for which I decided to do my own make so naturally I needed to practice ;o)

When it comes to makeup, I believe in focussing on what I think are my best features and for me that is my skin (I’m extremely lucky to have inherited my mum’s good skin – I really can’t take much credit for it!). Quite ironic really given that I’ve been a psoriasis sufferer since I was 17 (luckily it has never spread to my face). The other feature that I tend to focus on is my eyes (well eyebrows to be precise but hey they frame my eyes). So I’m on a mission to find my ‘perfect’ mascara, eyeliner, concealer and foundation and have also invested in some eye shadow palettes.

I’ve had so much fun playing with all these new colours and textures that I think my hubby is a little concerned that it’s turning into a bit of an obsession, but I can read him like a book, and I know he’s just happy to see that I’ve found my mojo and zest for life again.

Have you found your ‘perfect’ mascara, eyeliner, concealer and foundation? Which brand was it? Which makeup brand do you think does the best mascara / eyeliner / concealer / foundation? I’d certainly welcome any recommendations :o)

Love Sheen xxx