My name is Phil, I’m married with 2 boys and we live in the UK.
I was diagnosed with Psoriatic Arthritis in 2000 aged 34 years old. I’d been having problems for a couple of years prior to that, mainly with a knee that kept swelling up, was painful and had to be drained of fluid a few times. Around the same time I started to get itchy dry patches on my scalp and although I didn’t know it at the time, this was the beginning of Psoriasis that would eventually lead to Psoriatic Arthritis (PsA).
My doctor prescribed anti inflammatories but these didn’t seem to help much and thus I was referred to a rheumatologist. She put me onto Methotrexate (MX) which is the next step up after anti inflammatories have been tried and not worked. To be honest my condition at the time was fairly mild but like most doctors they like to get you on drugs as soon as possible.
I was told that the sooner we can slow down the PsA the better and the MX would be the best option to achieve this. Just to complicate things further I started to get palpitations soon after taking the MX. This then led to a visit to a cardiologist to see why this was happening. I assumed it was a side effect of the MX. But it turned out that I had a very rare heart condition, a defect so to speak that I was born with. But it took getting diagnosed with PsA for the heart condition to be found!
I then had to go onto heart medication and stopped taking the MX as my PA was mild at the time and they thought that the MX might be causing my palpitations.
I carried on living a normal life for a number of years until I turned 40 and that’s when the arthritis pain started to get unpleasant to say the least. I also started to get patches of psoriasis on my elbows and knees. And my scalp was pretty bad too. I was then put on prednisolone (steroids) which worked wonders for me. Before the steroids I’d had spells of being bed ridden and crippled by the pain. Day to day living had become very difficult and the steroids were a great relief.
I was on a small dose (5mg) temporarily and when I came off them I was fine for awhile but the pain came raging back. My rheumatologist then wanted me to try MX again, it had been just under 10 years since I last tried it. I took it and had horrible results with it. I was sick as a dog for 48 hours after each weekly dose. MX is used as a cancer drug and it really did make me feel rough and I just couldn’t tolerate throwing up 2 days a week.
So I came off the MX and back onto the steroids and I’ve been on them ever since. Unfortunately long term use of steroids is clearly not a great idea but for me it outweighs the negatives of being in pain without them. I really struggle day to day without them.
Without steroids I can’t do basic day to day functions. I can’t lift my arms up to wash my hair, I can’t put a pair of socks on and I even have difficulty getting in my car. I’ve got no chance of working without steroids as I’m a courier! Yep, with steroids I can work day to day as a courier with very little difficulties. Without them, I’m out of work.
Due to the long term side effects of steroids my doctor was pushing for me to get off the steroids onto a biological drug called Humira. Here in the UK we can only get Humira or Enbrel, which is another biological drug if we’ve tried all the other cheaper alternatives and it only costs the cost of a prescription, £7.00 despite costing the NHS £10,000 a year per patient! I met this criteria and was all set to start when my cardiologist intervened and insisted I didn’t start any biologicals because of my heart condition.
So I went back to square one. My rheumatologist said there’s nothing more I can do if you won’t take the Humira and that was the last time I saw her (3 years ago). I’ve been back on 5mg of steroids ever since. At my recent appointment with my cardiologist she told me that as my heart condition worsens I’ll need to go on stronger medication……. but the downside to that is that they’re not compatible with the steroids and I’ll have to come off them.
I’m now in a situation where I have to choose between coping with the crippling pain or risk heart failure. To make matters worse my PsA has been getting worse and I’ve been considering upping my does of steroids to cope and yet here I am with the threat of complete removal of them. I guess I’ll have to take the pain.
With the threat of the removal of my steroids hanging over me I have turned to the Internet to see if there’s a natural way to treat my Psoriatic Arthritis. This has lead me to reading numerous books, reading 1000’s of articles and pieces of information on the Internet and to try various diets with varying degrees of success.
I’m happy to report that after 18 months of trial and error I may well have my PsA under control and at the time of writing I’m down to just 2mg of steroids a day and have barely any pain! Even my psoriasis is better. Finally after 15 or so years I’m beginning to see some light at the end of the tunnel.
I’ve decided to create this website in an effort to help other people who are suffering from arthritis. Together we can beat this horrible disease.