Hi all,
I came across this site yesterday evening and spent over 2 hours reading through the topics. I'd had a nightmare experience with my 4th humira injection yesterday as I'd wound myself up so much I could barely bring myself to do it - it's just so bloomin' painful! Thinking that I was being a complete baby I went online to look for info on 'humira injection painful' and came across so much useful information I can't believe I hadn't done it sooner. I'm so relieved to find out I'm not alone.
I've had psoriasis since I was about 8/9 yrs, initially not too bad, but had differing degrees of flare ups over the years (now 44). I've had varying degrees of success with UVB treatment and tried every topical treatment under the sun.
About 5 years ago I started having joint problems - nothing too problematic, but my GP couldn't figure out what it was. Over a couple of years I was given different diagnoses - tenosynovitis, ?RA. To be honest, I felt that my GP was getting a bit sick of me, as my mobility was never seriously impaired. He prescribed different NSAIDs.
I work as a nurse manager in mental health and I was discussing my problems with one of our Psychiatrists - things were starting to get worse and more joints were being affected (mainly right-hand fingers and wrist, but also left-hand fingers, left knee and right foot). Her husband is a Rheumatologist at a different Health board to where I work and she discussed my symptoms with him. He immediately said Psoriatic Arthritis! I hadn't even heard of it at the time.
I had a look online and my symptoms fit. That was the start of the battle with my GP to get referred. I was really surprised at the time, but having read other people's experiences I see that I'm not alone. They seem to rely very heavily on blood tests and would like to have a simple diagnostic test - obviously there isn't one. I don't think he liked the fact that I was telling him what I thought it was - that's his job! Luckily, the day I'd gone back to our pre-booked appt to get my test results back, he was off sick and I saw a young locum. I told a small fib (!) and said that the GP told me he was waiting for these results before referring me to Rheumatology. The locum referred me!
After a reasonably short wait for an appt I saw a rheumatologist and things have moved on from there over the past 2 years, treatment wise. I was reluctant to start any meds at first - my brother-in-law had just beed diagnosed with Motor Neurone Disease and I felt lucky not to have anything terminal. Also I thought that my symptoms were manageable. I was just happy to have a diagnosis.
My symptoms did worsen though and I started on methotrexate about 6 months after diagnosis, followed by sulfasalazine. I've not had much benefit from these, so I started Humira in December. So far, no real changes, but it's early days.
I was very proud of the fact that I had been able to carry on working and not have any time off sick, apart from one case of flu-like symptoms, which I just couldn't shift. There are some parts of my job that I can't do - fine motor stuff, like taking tablets out of blister packs, putting things into poly-pockets and opening/closing child-safe medicine bottles, but otherwise I've been doing ok.
What I wasn't prepared for was how tired I've been. Not just tired, but pretty much full on exhaustion, where I fall asleep as soon as I sit on the sofa after work. The Nurse Specialist who did my first anti-TNF injection told me that I need to take it easy, to ensure that I rest and I hadn't really considered it until then.
Last week I went for my review appt with the Occupational Health consultant at work. I thought we were going to be sorting out voice activated software (I type A LOT with my job) and other things to help me out in work, but it turned in to him telling me I need to take some time off to allow the anti-TNF to work.
He said that I need to be realistic about my working life with PsA and accept that I can't carry on as if I don't have it. He's signed me off for 4 weeks and then he'll review me. If he thinks I'm ready to go back, he'll gradually increase my hours, but thinks that I'm going struggle doing the job that I do full time. He gave me a real talking to and I ended up in tears.
I'm now feeling very sorry for myself - as well as the pain, the tiredness and not being able to do simple things like open a bottle of water without assistance, I now feel like I've been dumped on the scrapheap. To add insult to injury the Humira injections really, really hurt.
I'm really sorry to go on and on and on, but I'm just so pleased to have found this site.
Lise
