My blogs are about real people. These people share their stories in hopes that their experience will help others. I think with all the stories I hear, and all the people that suffer, this is becoming a humanitarian issue. We have effective medications available. Too many people’s lives are being destroyed by this disabling disease. Medications are only available to a select few. Even then “Step Therapy” practices by insurance companies, block safer more effective treatments due to costs.
Psoriatic arthritis affects more than 1 million Americans. Those numbers are staggering. This disease is under-reported and often misdiagnosed. PSA is often diagnosed after the onset of psoriasis, but does not necessarily occur in that order. Joint pain and nail involvement is often a sign you have psoriatic arthritis. Of course you should be seen by a rheumatologist or your dermatologist, who can evaluate your symptoms and diagnose you properly.
This story is by my friend David Heath. He has both psoriasis and psoriatic arthritis. Read more about PSA by visiting the National Psoriasis Foundation website and by joining our support group Overcoming Psoriasis . This is an uncut version.
Sorry this has taken a while to get to you but life, holidays, and a 2-year-old boy tends to distract.
Anyway, my psoriasis first started in my scalp when I was around 11 or 12. This was back in the early 70’s and psoriasis was pretty much unknown especially here in Australia with the amount of sunshine.
My parents, then the doctor, thought it was dandruff aggravated by wearing cricket caps in summer. Problem was, it got worse in winter. So I was told to use the usual dandruff shampoos like Celsun and the like. Except it kept getting worse. By the time I was 18 it was unbearable. Another doctor and she diagnosed psoriasis. I was prescribed a coal tar cream and to use T-Gel shampoo. The coal tar did nothing and T-Gel burnt like hell.
I suffered with this moving to England then back to Australia. On return to Australia, I eventually found a hairdresser who’s daughter had psoriasis. Shen recommended trying Sebitar shampoo. The effects were almost immediate. This was the mid 90’s.
Just when I thought thing were good, this insidious disease started on my chest and then the back. This was 1999. It started spreading across my torso. Slowly at first. In 2003 I moved to Johannesburg, South Africa. It kep getting worse. In about 2010, I went to a dermatological professor. He prescribe Methotrexate, Folic Acid, Daivobet, and Dovate creams. None of it worked.
I was also not told that you should not drink alcohol with MTX (I like wine at dinner). In any event, after around 18 months, I stopped the MTX because of the expense and the psoriasis was getting worse.
I moved back to Australia in December 2014 and the psoriasis kept spreading. I was referred to a Dermatologist in the hope of being put on Cosentyx or one of the new biologic agents. Unfortunately, under the PBS in Australia, you have to fail 2 treatments to qualify for biologic agents. The failed MTX qualified. The Dermatologist put me on Neotigarson with a steroid cream and coal tar solution. He also started me on pUVA. Almost immediately the Neotigarson side-effects kicked in. It was only when I looked up the side-effects I learned about the liver and kidney problems. I stopped taking it immediately. Also the creams as they were doing nothing. Fortunately/unfortunately the pUVA is working so I will not qualify for the biologics but is has almost cleared the psoriasis except for the skin discolouration.
With the holidays I have had few pUVA treatments in the last 6 weeks and spots are coming back. I need to look at the Vitamin D and Probiotic supplements as I cannot rely on pUVA for the rest of my life (though it does help giving a sun tan).
I also have Psoriatic Arthritis and Gout. Sometimes difficult to tell between the 2 though I am learning. With the gout I started a food and drink diary to tell the triggers. It worked well, I have pretty much defined them. If I start to get a gout attack, I hit it hard with Voltaren tablets. Usually 200mg in an initial dose knocks it out right away. If I leave it then it takes a while.
Back to Psoriasis, what I have found is diet makes a difference. I have tried eating/drinking this and now eating/drinking that for periods of at least 6 months and it makes no difference. IMO, this thing has a mind of its own. Sunshine and salt water are the only naturals things that work. Somewhat confirmed by the pUVA treatments.
So, I am now at the next stage in trying to keep this thing at bay. I hope that Vitamin D and Probiotics help. I shall see.
What I have found is there is very little support and knowledge of the disease in Australia. I feel I want to start some sort of group/organization here but not sure how to go about it. Any advice would be useful. I would also like to be able to lobby the governments and regulators here to make medications more accessible and affordable. To do that, I believe, we need a sizeable number of sufferers here.
Thanks for reading if you have made it this far.
Take care. Your friend.
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