Life without Plaquenil

"She wears it so beautifully doesn't she, her pain...

Always smiling, always positive...always happy to help...

It's like a garment perfectly tailored to fit the way she carries it...

with a touch of grace...and the quietness of that sad smile...

All so you'd never know how heavy it really was." - Runata Suzuki 

Achy, stabbing, agonising, inflamed, painful, stiff, throbbing, miserable, nauseating, punishing, suffocating, torturous, draining, exhausting, terrifying, absolutely excruciating....
Welcome to my reality of living without Plaquenil!

Okay, I realised that coming off this medication wasn't going to be easy but potentially there was the chance (wishful thinking!) that my body would cope to some extent. I lived in hope (or blissful denial) that this would be the case but knew deep down already that there was no way I could be taken off a medication I had been on for twenty so years and expect no repercussions. 

I was informed that the drug would slowly filter out of my system over a month and to simply 'wait and see what happens'. I was started on a drug called Gabapentin to see if my pain was potentially nerve pain in which case this medication would help...unfortunately I have now weaned off it as it gave me no relief and there was no way I was going to take a medication if it wasn't doing me any good. 

Truthfully I don't think I was over the flare from the wedding and my body already felt distressed so timing was not on my side with stopping Plaquenil. It takes no genius to work out what happened...storm in a teacup or should we say in my body.

For me right now it feels like every day merged into severe pain and overwhelming fatigue. It's all one hazy fog of pain while still trying to cling desperately on to hope that I things would get better. The brutal truth was I wasn't living I was simply surviving...but heck I fought back every day again and again and again I would continue to fight with all my might. 

My days often and still often do look like this: 

• Wake up feeling like I haven't even slept (probably because I barely have). 
• Sit on the side of my bed and swallow some medication in an attempt to relieve the aches in my body. Some days I will wake up gasping as the pain is so severe.   
• Lie back down and wait for this medication to kick in before I can attempt to move. 
• On a good day I can walk to the shower by myself on a bad day Dan will physically have to help me get to the bathroom. 
• I will shower siting down and turn the heat up as hot as I can to try gain some relief.
• Now here comes some variation depending on how I am feeling I will either get changed and then go and recover on the couch or I will be back in bed needing a sleep.
• I will swallow more medication in an attempt to lower my pain, heart rate and disease activity (usually about ten tablets in one go). 
• I will then force myself to eat often feeling nauseous from the pain or fatigue. 
• If I made it to the couch I may read, watch TV or do some writing which will then require an afternoon sleep. 
• More pills to be swallowed!
• If Dan is working and I can muster up the energy I go up to Mum and Dads for dinner but mostly for company and to be distracted from the pain. Dad can often tell how I am just by looking in my eyes..they give it all away before my mouth opens to tell them that I am 'okay?!' which we all know is a lie but what else can you say...I'm sore, I'm tired day in and day out gets pretty overrated!!! 
• Some days I will eat dinner then need to to straight home but if I'm lucky I can get to watch some TV with mum.
• I'll come home take my final lot of medication and crawl into bed. 
• Night time is known to be notoriously bad in our household for me. There have been way too many nights that Dan has come home and found me in tears because I am just so worn out and in too much discomfort to sleep. It's cruel for me but it's cruel for him too! 
• Dan will try to bring me relief in the form of ice packs, or wheat bags, by checking I'm up to date on my medication, showing me funny YouTube videos or by simply lying in bed and holding my hand. Have I said how thankful I am for him??!!!
• Once I am asleep I often wake up for more pain medication throughout the night. It very rare that I will sleep right through the night. 
• And then we hit REPEAT and do it all again!!! 

Sometimes we throw in a doctor visit into the mix or there are days when I physically cannot get out of bed. Recently I drove Dan to the supermarket as he runs in and gets our groceries and I had to lie down in the back seat and sleep...to say that scared me was an understatement! My one rule is though no matter how bad I am feeling I must always get myself up to shower (even if it is just to put on another set of pj's).

I want to make this clear I am not writing this for sympathy or for you to feel sorry for me because that is the last thing I want. I am writing this to simply tell my story, share my reality. I am so much more than this darn illness but right now I cannot pretend that it is not controlling my ability to live the life I had planned for myself. I have so much hope that this is just a phase and I will regain control. Through all this pain there is still laughter, there is still joy and there is still so much I am thankful for...trust me on that!

As the month went by it became clear that the Plaquenil was coming out of my system. My left knee which I had surgery on years ago to remove inflamed synovial tissue began to swell up again...something it hadn't really done since the surgery. I would often wake up with a bright red butterfly rash on my cheeks (classic lupus symptom) and my fatigue levels hit and all time low.  

                                           

                                          

                                          

                      

In early August I was given the opportunity of some part time work for three weeks. I was to fill in at Mum's work while her wonderful receptionist and teacher aid went on holiday. I said yes because it was only for three weeks and I was sure I could muster up the strength to somehow manage this. I knew all Mums staff are incredibly caring and supportive woman and all knew about my health so there was no worries there. I also knew it would be a safe environment where I could test my ability to see how I could function in a working environment. I was excited by this challenge and to be given a purpose away from fighting my illness. 

I was determined to give it my all and not let my health ruin this opportunity, but again I learnt that sometimes no matter how determined and driven you are your health will always have the final say. I pushed and my body shoved back even harder. I would wake up struggle to get myself ready (but always managed!) then take a couple of deep breaths plaster on my brave face turn up at work; try to fool everyone that I was okay (often unsuccessfully); swallow pain medications; try to distract myself from the pain with work; finally given in and decide I needed to go home (often told to go home by the staff); come home collapse into bed (sleep for a couple of hours); force myself up to eat; collapse back into bed then start again. This routine worked for two weeks. Some days were better than others, some days I would get to work and feel better but other days there was no escaping the pain and fatigue. Through all this though I loved the work. I loved being needed and being able to help even though half the time I was frustrated because I knew mentally I could do so much more if only my body would cooperate. 

It was over the weekend of my last week that my health took yet another bad turn. I just did not feel right or even more not alright I should say. The Friday night my body raged a war with its self...morphine was my only defense. I was back on crutches in the morning much to my disappointment. I remember driving to Mum and Dads then needing to straight away go and have a sleep. My knee was achying which was nothing new but I had developed this burning and searing pain in my left foot. I couldn't wear my sock because even that caused unbearable pain and moving my toes became very difficult. As the night wore on another new symptom began...my foot started turning inwards spasming and twitching uncontrollably. Of course these symptoms didn't let off...which I hoped they would!

Two trips to an Osteopath who strapped my foot and massaged it but then decided that I really did need to go see my GP. I gave in and went and saw my GP on the Friday who took one look at my foot which was now fixed at a very unhealthy angle and said the words I always dread..."I know you won't like this but I think you need to be seen in ED". Something that I had stubbornly been trying to avoid all week. Thankfully she got on the phone and organised for me to be seen by an orthopedic doctor which saved us a lot of time. The verdict was I was placed in a moon boot to keep my foot straight and was given Diazepam to stop the spasming which worked a treat. The downside and the words the I can now hear before the doctor even has to say it "we do not know why this is happening". 

The moon boot and Diazepam were a heavenly relief and thankfully I was able to gain a lot of relief. The symptoms were still there if I didn't take my medication and the root cause was unknown but I was happy just to finally be able to sleep better and semi-function again. So lets just say to my extreme disappointment there was very little work done in my last week. Through all of this I was more worried about letting people down than my own health. It felt like another slap in the face as Lupus showed me its power. To me all I wanted and want to be able to do is work, but for now I learnt that currently my health is too unstable. I'm telling myself that this is temporary and believe that my dream job is still out there waiting. For now though my full time job is taking care of myself the best I can!!

So how did I get through all of this...well I'll let you in on something that I was holding out hope for and that was keeping me going...I had an appointment to see a private rheumatologist in Auckland on the 20th September. We decided as a family that I needed a fresh set of eyes to look at my case. Knowing I had this appointment kept me fighting and believing that things could and would change with my health. There was a lot riding on this appointment! 
  
I will share this appointment and our news in my next blog post because this one is already ridiculously long (if you are still reading congratulations haha!!) but stay tuned to find out what my new treatment plan is...yes ill say that again I now have a PLAN!! 

The catalyst of my downfall

When you can't control what is happening, 

challenge yourself to control the way you respond to what is happening. 

That's where your power is! 

I vividly remember sitting in my ophthalmologist (eye doctor) office as he sat examining my latest eye scans. I had sat in this same room for the last twenty so years every six months. To say these appointments had become mundane was an understatement. The words that came out of his mouth next took me by surprise..."I see some changes to your eyes since your last scan, it is probably nothing to be worried about but I need to send you to Auckland to get some more thorougher tests, just to be on the safe side". My stomach sank, this usually was not the way my appointment went...a little taken back but in true Liv style I calmly asked a few questions was reassured not to worry and would be hearing from Greenlane Hospital with an appointment soon.

I think I need to back track to why I was even at this appointment in the first place. One of my Lupus medications called Plaquenil has a rare lets just restate that RARE  side effect of causing retinal (eye) toxicity. Plaquenil is known as a disease modifying anti-rheumatic drug (DMARDs) . Fun fact: its original purpose was/is used for treating malaria therefore is known as an anti-malarial medication. It is not clear why this medication works to help simmer down the disease activity of Lupus but is usually a standard treatment option for people who are diagnosed with the disease. Plaquenil has been referred to as a “lupus life insurance.” so in other words not a drug you particularly want to run into difficulty with. I had been on Plaquenil since I was first diagnosed so around about twenty two years. The longer you are on it the chances of your eyes becoming toxic does increase.

A month or so passed then on the 25th February Mum and I made the trip up to Auckland to get these specialised tests. Now I must confess anything to do with my eyes are my weakness. Put an IV line in me, inject me, heck I barely even flinched with I had a steroid injection into my hip socket but anything to do with my eyes for some funny reason makes me very anxious. When I was about five my eye doctor wrote in his notes that I had called the clinic the 'murder house'. I would cry when I had to have eye drops to dilute my eyes so we've always had this mutual understanding that he would do the testing without them. So stupid me gets on google and starts looking at the tests I have to have done and of course what does that do....further adds to my anxiety. Why do we do this to ourselves!?

Mum and I arrived at the appointment and I was sent to wait in a waiting room where I was the youngest by probably about 50 years...heck even Mum looked too young to be there! Then before I knew it the testing began. I started with the basic Field Test, an eye chart examine then I was taken up stairs for the one I was dreading an ERG and mfERG which looks at the functioning of the retina and macular. Thankfully I had the nicest doctor take my tests. To start with she put aesthetic drops in my eyes followed by more drops to dilute my pupils. Oh gosh even writing this my eyes are watering haha!! Then she placed these electrodes to the top of my forehead, sides of eyes and in the lower lids of my eyes. The anesthetic drops meant I could not feel this thankfully! Next I had to sit with my head resting into this TV like machine and watch an array of flicking lights and patterns for about 5 minutes. This was done twice as they were examining different parts of my eyes. Honest opinion it wasn't as bad as I built it up in my head.

I asked the question how common is it that you see Plaquenil toxicity...her reply "in my years of practice I've only seen a couple of cases". I felt a further relief of anxiety leave my body, I was going to be just fine. I was then taken down stairs for some final eye scans and was then free to go. Note....diluted eyes make for a very unpleasant experience! If you have this test remember your sunglasses!!

Smile or grimace?? 

I returned home and was focused on the wedding putting this test into the back of my mind. There was nothing I could do now but wait. But I was going to be fine...right?!

After the wedding and our honeymoon I had an appointment to go see my Ophthalmologist. I psyched myself up all ready to be prepared for whatever the outcome was going to be. I sit down ask about my results and he looks puzzled saying he had no results for me!! Nothing had come through...just great! In my head though I put this down to being good news. Surely if there was a problem I would have heard by now. I was told he would get his receptionist to see if there were any results and get back to me.

Weeks passed and I went to see my old GP who was back filling in and wanted to see how I was doing. We sat down started talking then she stated "So I guess you heard about your eyes?" My face told it all...no! A letter had just come through and she had to break the news to me that my tests in Auckland revealed what we didn't want....my eyes had become toxic from Plaquenil. Of course I had gone into this appointment not expecting this news at all. I was not prepared and most of all what does this mean for me now?

I remember driving home trying to hold back the tears but as soon as I saw Dan I just dissolved into a sobbing mess. Here I was thinking I was protecting my body from Lupus but yet the medication that was meant to be helping me had been the thing that was damaging me. I was barely over the flare from the wedding and now we were facing another unknown situation.

Rare side effect Liv it was a rare side effect but my body said challenge accepted!!

Let's look at the positive though because otherwise it just gets all too much. Thankfully it was caught early and I was asymptomatic and remain that way today. I was lucky I stayed vigilant with getting my eyes tests because if I didn't I could have been facing irreversible vision loss. Yes the situation was not ideal but it could have been a lot worse.

The major downfall for me was however that I would need to discontinue this drug and now would not be able to take it again. There was a big unknown about how my body would react without it and let's just end this blog post by saying...heck I miss that drug!! I had often wondered if it was doing anything and yes I learnt the hard way it really was doing something.


Just a little advice for anyone reading this and taking Plaquenil....please make sure you are getting your eyes tested regularly.  I know it can become tedious and I used to moan about having to get them done but it turns out these test were my saving grace. So please do not neglect your eyes! This post is not meant to scare you off taking it because I really still do think it is a wonderful medication and would still be taking it if I could.