I have wanted to post on somewhere like this for so long, but only now finally after I have answers and solutions do I feel the overwhelming need to offer support or at least share my experience / story for the benefit of others out there who are going through this horrific experience.
So it all began whilst having dinner in a restaurant with my mother one evening I noticed a candle on the table was causing me pain in my left eye, i assumed (riding a moped most days) that I had most likely just got something in it and ignored the pain thinking that an eye bath/rinse followed by a good nights rest and I would awake having forgotten all about it. I awoke, opened my front door to a beautiful sunny day but the pain of photophobia shot through my eyeball like I had been punched! That was approximately 2003 and what I now know to have been my first of many bouts of recurring iritis/uveitis.
I was getting an iritis attack approximately 25 times a year (only ever in my left eye), and my Ophthalmologist got fairly bored of seeing me so gave me my own supply of steroid drops (Maxidex) together with the stuff that paralyses your pupil open (Cyclopentolate Hydrochloride), and has allowed me to self administer as and when I suffer from an attack. There was no mention or test for HLA B27 at that time and no real reason ever suggested for the attacks apart from a probable misfire in the immune.
February 2010 and although the iritis attacks are now less frequent (maybe once every 2-3 months), I woke up one morning with what I thought was a stiff neck/back, assuming I had slept on it at a weird angle I assumed it would right itself, this gradually started to happen 2 or 3 times a week getting progressively worse, I had started running at about the same time with my then boyfriend (now husband) in the mornings and thought perhaps this could be the cause, the pain eventually got so bad that it forced me to go and see a sports physiotherapist. Most mornings I was unable to get out of bed without being held by the ankles and dragged off the bottom of the mattress and onto the floor, some mornings I would wake up in tears from the pain, the radiating pain felt like I had cracked all of my ribs, it would come through my sternum and make me feel sick, I’d have to take shallow breaths and god forbid I felt a sneeze coming! Some nights it would wake me in the middle of the night and I’d pace about or have to go for a run to lure the muscles out of spasm, other times I would stand at 4am in a boiling hot shower for as long as I could take just so I could return to bed and hopefully catch a few more winks. The physio could feel the tension from the muscles in spasm but was never convinced it was from the running, I continued to have physio but it bought a very temporary relief and I was now sure there was something very wrong with my shoulder as the pain was so acute where my spine met my shoulder blade.
With the luxury of private medical insurance through work I went to see an orthopaedic shoulder consultant at a top London clinic, he did various x-rays/mri’s and I almost burst into tears when he reported that he could find nothing apart from some slight cervical lordosis, why could he not see this horrific pain?! He referred me to a spinal consultant who repeated the same investigations and then booked me in for some epidural steroid injections under general anaesthetic (three times I underwent these injections), whilst there was some relief it was only temporary and with a lack of diagnosis he firstly suggested I have a Nerve Conduction Study done – quite possibly the most awful thing I’d had done to me (has anyone else had one of these???) I had the most unsympathetic professor carrying out the tests who was completely unconcerned by my sobbing as he stabbed electrified needles into my poor spasming back muscles at 7am one morning , sorry I digress! So, I was then referred to a rheumatologist…
In June 2011 I met Professor Bruce Kidd, a rheumatologist at The London Independent Hospital, and after hearing all about my morning agony he immediately sent me for a blood test and unsurprisingly discovered I am indeed HLA B27 positive, thus linking the years of iritis and the chronic pain. I had been trying to control the pain by taking large, and slightly dangerous quantities of over-the-counter Voltarol, he tried me on another drug, the name of which I cannot remember but I think it was a NSAID and it didn’t do very much, he then moved me onto Gabapentin which did nothing at all and had awful side effects, before finally putting me onto 15mg daily of Prednisolone steroid in August 2011. I thought it was a wonder drug….. to start with, then the side effects started to kick in, I’m now the size of a house, and my ‘moon face’ is in full bloom – thankfully no ‘buffalo hump’ as yet!
Professor Kidd said he wanted to get me onto a drug called Humira (Adalimumab), however it is very expensive and there is (at least here in the UK), a very long and arduous approval process to get hold of it. At this point my private medical insurers have now received the diagnosis and classed me as a ‘chronic condition’ so will no longer cover the treatment needed, I am therefore moved over from the care of Prof Kidd to the care of another rheumatologist on the National Health Service – Professor Ali Jawed at The Royal London Hospital, it transpires Prof. Jawed has trained 2 out of 3 of the consultants that I had seen initially, which gives me reassurance that I am in good hands.
In last 8/9 months of being on the Prednisolone I recognise now just how depressing it has been, whilst I cannot deny that it was the only drug that alleviated some (but not all) of the crippling morning pain, in reality it has been pretty horrible in its own right, the side effects of any steroid can be miserable , but the insomnia – lying awake in the dark feeling very alone and not knowing when and if you’ll get off the steroid started to eat away at my soul, the terrifying mood swings that made me doubt my own sanity, not being able to control your body temperature, the weight gain – I have a limited wardrobe of stuff that still fits me, waking up in pain and dripping in sweat, the frustration of trying to explain to my husband just how much pain I’m in, trying not to continually complain when people ask how you are, the fatigue, the hunger and yet I know I should be really grateful that as far as anyone can tell my spine hasn’t fused yet.
FINALLY last Monday I was approved for Humira, I wasn’t expecting it but I did my first Humira injection (under nurse supervision) there and then, and although they tell you it might take 2 to 3 weeks before you feel an improvement, on Tuesday morning I woke up naturally for the first time in 2 years, no pain, no nothing, infact I wasn’t even sure I was awake! Waking up without the pain feels so completely alien, I was able to get out of bed like a normal person, I walked to the bathroom without having to hold onto the walls, I was nice to my husband, I could even put my socks on unaided, it took me such little time to get ready for work that I was running almost an hour early and had time to call my mother, I nearly cried when I told her it had worked already and for the first time in 2 years I could feel no pain. This morning I slept right through until 7am!!! Roll on this weekend when I intend to start my training with a view to taking up lie-in’s as an Olympic sport.
I now have questions, lots of questions… anyone else on Humira? (proper name Adalimumab)
I’m new to this forum/website so I’m not sure quite how it all works but please feel free to email me.