Hi, I came across this forum and I just wanted to share my story.
It begins in April of this year when I started getting pain in my back and legs. I put it down to the fact that I spent a majority of my time hunched over a desk studying for my degree and post-grad. I then started getting big dry patches of skin on my legs so I went to the doctors. She referred me to dermatology and rheumatology. Just at the end of June I was diagnosed with Psoriasis and Psoriatic Arthritis. This all had to happen just as I was starting my first full-time job at the beginning of my career. I was started on Sulfasalazine, a strong disease modifying drug and referred for UVB light treatment. Unfortunately a short time after starting on Sulfasalazine I started to feel unwell and ended up being admitted to hospital in August with Stevens-Johnston Syndrome, a severe drug reaction. This very rare reaction burns the skin from the inside out so basically I had ulcers all down my throat and into my stomach. I was in an incredible amount of pain and my skin was a mess. It took me a month to recover during which time all my medication was stopped.
Once the drug reaction rash settled down my psoriasis came through where the skin had been damaged and my arthritis came back with a vengeance. To put it mildly, things were a struggle. I was in a lot of pain and the doctors were very reluctant to start me on any kind of medication until the drug reaction had settled down. I was taking diclofenac but it gave me bad mouth ulcers and didn’t help with the pain. After continuing to struggle with work and managing my pain, I went to see my GP a few weeks ago who decided to start me on steroid tablets. I noticed a big difference straight away however the dose I was on was too high and I had some side effects (confusion, mood swings, indigestion, insomnia and throat problems). I have since cut back to 10mg a day.
At the moment things are a lot better, except for some stiffness in my neck. I am still getting light treatment three times a week for my psoriasis which has improved a great deal. My main worry is that I can’t be on steroids long term and I face the prospect of starting on some other kind of disease modifying drug (possibly methotrexate) in February which could give me another reaction. I DO NOT want to go through all of that again.
I am also worried about the amount of time I’ve had off work and the impression I must be making. I am only 23 years old and at the beginning of my career and my job is only temporary until May 2008. I was hoping that I would make a good impression and that I could apply for other jobs that came up in the organisation. Now my hopes are dashed. I have no social life because I am so tired after work that all I can do is watch tv or go to bed. I feel like I just exist basically.
However, I remain positive that my life will at some point return to ‘normal’ and my luck will change. It’s been a rollercoaster of a year but I realise that there are some people who are worse off than me.
Thanks for the opportunity to share my feelings.
Hi Fiona,
Welcome to the AI family!
Sorry to hear that you are having such a hard time starting out. It will get better... I have RA but can relate to you as most of us can on this site. One thing you said stands out to me. " I remain positive that my life will at some point return to ‘normal’ and my luck will change." We all have to find our NEW normal. Talking with others here will help you do that. There are lots and lots of people here that will help answer any question you may have.
Jay
Hi andI am 45 yrs and have had Psorasis since i was 7yrs old and the Psoriatic arthritis for the past 5 years although probably had for a lot longer but always put the aches and pains down to something else. I will say you can have periods of time were you are not really aware of your illness, so not all bad news.
I do sympathise with you about the medication I reacted to Sulfasazine the same way, but my reaction wasn't as bad as I had some medical knowledge and knew that my mouth shouldn't of started to swell and blister and stopped it straight away, but what i am getting round to is I am on Methotrexate 25mgs injected weekly at home and although it does make you feel horrible for a couple of days it isn't too bad and my rheumatologist calls me a delicate flower as I have reaction to all medication. I started on Humira injections about 10 days ago and I felt absolutley shocking I thought I had had some terrible reaction to it but doctor hopes and thinks that it wasn't the drug so keep on going and really, I know it sounds awful that is what they say to most things.
I had to give up work about 3 yrs ago but i also have it in my spine and already had a problem with my back. But if my job hadn't been moving about and up and down so much I would probably be still be at work. Talk to your employers as they can sometimes be really understanding I did work in the NHS and they really helped me for a long time as I said I had a long standing problem with my back already.
Good luck
Teresa
dear feefsmall Hello - welcome ,I am glad found you here ,I wrote my psoriatic arthritis story and sent to message boards in title (seven head Dragon) that 55 members in this site have seen it .I have claimed that I prepared herb drug for my Problem (arthritis) detaile' please contact with me