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

Living With Psoriatic Nails

Good Day Everyone,

A quick disclaimer to say that I am not a medical professional and that you should not make any changes to the way you look after your psoriatic nails without discussing it with your doctor first.  This is simply my personal experience of living with psoriatic nails.

I know I'm a bit out of sorts at the moment with my Living With blog posts due to my recent absence but I really want to continue with this little series of living with my chronic health issues. Having covered life with migraines, body and scalp psoriasis, today I wanted to talk about living with psoriatic nails which I have had for over three years. I was in two minds about whether to include a photo of my nails in this post as I didn't want to gross people out but after seeking a few second opinions the consensus was that what I'm about to show you isn't that bad to look at. If you do get grossed out easily then take this paragraph as a warning that photos will be at the bottom of this post so if you'd rather not see my unattractive nails then don't go to the end of this post. You've been warned!

A few months after I was diagnosed with psoriatic arthritis (PsA) I noticed a white-ish ripple like discolouration on the nail of one of my arthritic fingers. It wasn’t on top of the nail (as I couldn’t feel it) but more like part of the nail itself or at times looked like it was underneath the nail. Over the coming weeks the ripple got larger and the natural white tip of my nail started to expand down the nail so that the top half was now completely white with the bottom half still the natural pink colour.

I had read about people with PsA having a higher likelihood, than those suffering from psoriasis alone, of developing psoriatic nails so it didn’t come as a complete shock. However, as time progressed I noticed that another nail was becoming psoriatic but unlike the first nail, the finger of this particular nail was not arthritic. This confused me a little as in my head I had associated the arthritic finger with later going onto develop the psoriatic nail. A few weeks later the finger that was not arthritic but had the psoriatic nail did become arthritic. So I thought perhaps the psoriatic nail was some sort of ‘warning’ sign that the finger would go on to develop arthritis. But I was wrong!

In the coming months and years I quickly realised that there was no correlation between the psoriatic nails and the arthritic fingers, and nor did one act as a warning sign of the other. Currently all the nails on my left hand are psoriatic but I only have arthritis in two of the fingers. On my right hand, two nails are psoriatic but only one of those belongs to an arthritic finger.

As well as the white-ish discolouration, my psoriatic nails also developed a whole host of other issues;

• The nails all developed a lot of ridges in them.
• The  nail tips became really thick and it's like there was some sort of skin growing under parts of the nail tip.
• The nails developed these tiny little holes in them, like little pits and my main concern with this was the risk of the nail getting infected, but that has never happened.
• The corners of nails with a lot of white discolouration would lift up and grow upwards and outwards making them more likely to break or catch on things.
• Some of the nails started to lift up from the finger / nail bed itself, especially the ones where the white tip had spread further down the nail. This was most concerning as I was worried about the nail completely lifting up from my finger and just dangling from the cuticle. Worst still, I started to have nightmares about waking up to find that there was no nail on my finger. Luckily this has never happened and the nightmares stopped as time went on and I got used to life with psoriatic nails.
• The psoriatic nails were also more prone to breakages and became quite brittle and dry. As the tiny holes would grow out the jagged edge they created would catch on my clothes, sofa, hair etc. Sometimes if the hole was at the bottom of the nail but close to the side, it would cause a bit of a horizontal crack in the nail which was almost impossible to file down and I would have to wait weeks for it to grow to the tip so I could cut it down and file it.

On one of my follow up visits to my rheumatologist (doctor who treats arthritis) I asked him if there was anything that could be done to treat my psoriatic nails because as well as the physical damage and pain they sometimes caused, I was also very embarrassed and self conscious about them. It was bad enough that I had ‘sausage' fingers due to the arthritic swelling but to have unpleasant looking nails was quite tough as it's hard to hide your nails from people. I used to be worried that people would think that I had some kind of contagious disease and be revolted by them. I quickly became very good at keeping my fingers away from people’s view by folding them under crossed arms, resting my chin on one hand so that the fingers and nails bent towards me, putting my hands in between my crossed legs or hiding them with the way I held papers / books etc.

My rheumatologist told me that some of the stronger treatments for arthritis also have a beneficial effect on psoriatic nails but I wasn’t and didn’t want to go onto the stronger medication until I absolutely had to because of the side effects they cause. He told me that there weren’t really any treatments specifically for psoriatic nails and those that were used by doctors often had the potential for terrible side effects so it was always about weighing up the risk-benefit. He also mentioned that some people have had steroidal injections in their nails but he said that he could guarantee that if I had this injection in one nail, I would not have it in another as the pain is sooo bad. Well, with the pathetic pain threshold that I have, that was enough to put me off that option!!! I was told that if I ever did get a fungal or bacterial infection then I would be prescribed a treatment for that but in the meantime I should keep my nails clean, dry and short.

As I’ve lived with my psoriatic nails I have learnt little ways of protecting them as much as I can and minimising further damage;

• I keep them as dry as possible because I always worry about the risk of a fungal or bacterial infection if they’re constantly getting wet.
• I always wear gloves when washing the dishes or clothes to keep them dry.
• I cut them as short as I possibly can as the longer they are the more likely they are to break or catch on things.
• I always file away sharp edges as best I can.
• I massage natural oil (like argan, coconut, almond or olive oil) on and all around all of my nails just before I shower as a way of providing them with some sort of a protective layer from the water.
• I also massage natural oil into my nails before bed because I feel like I’m feeding them goodness and it helps calm the brittleness and dryness thus reducing breakages and cracks.

I do very gently buff the ridges on the nail surface because I just feel happier when my nails feel smooth and I keep the corners of the nail tips well rounded, again to minimise the risk of them catching on things. I don’t tend to wear nail polishes as I’m conscious about the fact that I’m applying a layer of chemicals on nails with pits and holes in them. I also don’t cut or push my cuticles back at all for fear of weakening the nail and it falling off!!!

Over time I have come to accept my sausage fingers and psoriatic nails to the point that I don’t really hide them from people anymore. If people want to judge me or give me funny looks because of my fingers and nails then that’s up to them. I may occasionally give them a hard stare back if I see someone who is very obviously staring at them :o) Sometimes people will just ask me what happened to my fingers in which case I’m happy to explain it to them. At the end of the day whilst it does make me sad that I don’t have very pretty, feminine nails and hands, I just remind myself that at least I still have nails on my fingers and fingers on my hand – that is still a lot to be grateful for and happy about :o)

Love Sheen xxx

Living With...

Good Day Everyone,

After my mini-series of ‘DIY Wedding’, I've decided to write about another mini-series based upon my personal experience. This one is going to be called ‘Living With...’ and in each post I’m going to write about my experience of living with the three chronic health conditions that I suffer from;

1. Migraines
2. Psoriasis (scalp and body)
3. Psoriatic Arthritis (including psoriatic nails)

I appreciate that this may not be of interest or relevant to all of you but I think that could be said for any post (and as this is my blog I guess I can write about whatever I like ;o)). I want to put my experience out there in case there’s anyone else that suffers from any of these conditions who wants to connect with / hear from someone that can understand what they’re going through.

I've never really had anyone to talk to who also suffers from the same health conditions as me, or rather, it may simply be the case that there is someone in my life who does suffer from one (or more) of these conditions but I just don’t know about it. You see, until a few years ago, I never used to feel comfortable talking about my conditions, not even to my friends, because I was so incredibly embarrassed by them, especially my psoriasis. I spent the best part of 10 years trying to hide my scalp psoriasis from the world as I was so ashamed of it, like it was some dirty secret. So I guess if I felt like that then it’s possible that others may feel that way too.

So you may be wondering what changed? Why am I all of a sudden willing to talk about it? Well, first of all, with age comes confidence and with confidence I've grown to be more comfortable in my own skin. I no longer care whether people know what I suffer from or not. Nowadays I don’t care if people I meet stare at my deformed fingers or discoloured nails or the psoriasis patches on my elbows. I no longer go out of my way to hide what I suffer from, partly because some things like my fingers and nails can’t be hidden but primarily because I’m comfortable with who I am and what I have.

Aside from confidence, I learnt to put things in to perspective because what I suffer from, as terrible and painful as it is at times, it isn't likely to kill me. This is quite a recent achievement because I did use to have a lot of thoughts along the lines of ‘Why me?’, ‘What am I being punished for?’ etc etc but then when I saw people I knew go through health issues that could kill them, it kind of put mine into perspective. For a while I swung the other way, thinking ‘Well why not me?’, ‘What’s so special about me that means I shouldn't suffer?’ or ‘If someone has to have this damn disease then why not me?’. Now I don’t have any of those thoughts, not the ‘Why me?’ or the ‘Why not me?’, now I just accept it for what it is and try to deal with it as best as I can – acceptance of things for what they are is something else that I've learnt to do recently and it’s amazing how much inner peace that has brought me. Acceptance doesn't mean that I've given up or that I’m not going to try to improve things, it simply means that I've re-focused that energy and voice in my head that was always asking ‘why’ towards a more constructive direction.

I've also redefined my definition of true beauty. To me, true beauty is no longer about what the eye can see but what the heart feels. This is not an easy concept given the superficiality of the world we live in and how ‘beauty’ is defined in our society. It’s certainly not a concept that I as a teenager or even in my early 20s would have got my head around. I wish I had because I might have been a happier person. In my 20s I spent so much time hiding any physical signs of my psoriasis that I missed out on a lot of 'living'. My psoriasis and arthritis may affect how I look, my outer beauty so to speak, but it doesn't change who I am as a person and it doesn't change the way I can make people feel or the way people can make me feel.

Over the last couple of years I've taken ‘active’ control of my health conditions. I must admit, this was primarily forced upon me with the move to Singapore and dealing with a completely different type of healthcare system. In addition, towards the end of 2011 I hit my lowest point ever regarding my health and realised that I could no longer carry on with the way things were and had to take control. One of my biggest regrets of my 20s was not taking active control of my scalp psoriasis and just letting my GPs (family doctors) fob me off with one treatment after another that made no difference and I eventually just gave up hope, hope of ever getting better. Looking back now, I know I should have been more proactive – hindsight’s a wonderful thing, isn't it?

Finally, I guess the other significant thing that changed was that I met my darling hubby and he gives  me so much support and encouragement and makes me feel beautiful despite my scaly skin, discoloured nails, wonky fingers and that really does work wonders ... for me, my confidence, my self esteem and especially my emotional health. Unconditional love and support can do amazing things!

So there you have it, those are some of the things that did change and I’m sure there are others but I’ll cover those in my posts on each condition over the coming weeks. For those of you not interested in this mini-series, don't despair there will be my regular mish mash of posts alongside this mini-series.

Apologies that this is quite a text heavy post and I imagine the ‘Living With ...’ posts that will follow will also be text heavy but I’ll try to include the odd pretty picture in there ;o)

Love Sheen xxx

Sunset on Langkawi island (Malaysia)

Sunset on Langkawi island (Malaysia)