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.
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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