Saturday, 10 March 2012

This is my condition- an update

I am finding more and more that I am being asked what this medical condition is I have, and so have decided this blog will give those of you who are interested an insight into PPP (pustular palmer planter) pustular psoriasis and Psoriatic arthritis.
If you are at all squeamish or the type to turn the telly over when faced with medical programmes then I suggest you read no further as this isn't a 'pleasant' disease. Also I would like to point out that I am not writing this today looking for sympathy or pity, I can think of nothing worse, no, this is just for understanding.
I am also not medically qualified ( although I am a Dr, thought I would slip that in here as it's an achievement I'm proud of. Lol) so I will stick only to the facts in my own case and not attempt to explain it medically.
So PPP, it's a fancy name for a certain kind of psoriasis that affects hands and feet, clever really eh? Palmer=hands and planter=feet, the fact that mine is also pustular is unfortunate and makes this form of psoriasis one of the rarer forms. Pustular is such a horrible description isn't it? Makes it sound so gruesome and I guess that is how it appears to people but in fact the pustules are not poisonous, so it goes like this....pustules appear looking like little rashes all over hands and feet ( and more recently in ears) they burst, I'm really sorry but there is no pleasant way to describe this condition. The skin then tries to heal itself causing more skin to develop on top of the damaged skin,and the circle continues on and on. After time the skin is so damaged that it becomes thin and splits easily and this is the stage mine is at now, when it's not sore it's extremely itchy and as you all know it's impossible not to scratch an itch so I am constantly creating more damage to my already damaged skin. There are obviously treatments for this condition, creams that gradually get more dodgy in the harm they can do and the reactions you can have from them, tablets and finally biologics ( weekly injections) I have had the lot.
The patches of pustular psoriasis I have on other parts of my body don't have the fancy name of the palmer planter but behave in exactly the same way.
So on to the Psoriatic arthritis, a percentage of psoriasis sufferers are unlucky enough to develop the accompanying arthritis, no one has ever really been able to explain to me how a skin condition and a joint condition can be connected but apparently it's something to do with them being an auto immune disease, my immune system wasn't happy just saving me from infections, illness etc, it decided it would work overtime and went on the attack, unfortunately it targets healthy skin,joints etc and destroys and destroy takes on a whole new meaning doesn't it? Basically it's self inflicted, I'm hurting myself. Lol.
Years back, before it got to this stage my GP offered to look for a specialist in PA for me, he checked I would be prepared to travel and he searched the country, not one specialist in this condition was to be found (that may of course have changed now) the closest to PA is RA rheumatoid arthritis and so I started my many visits to a rheumatologist. As far as I can make out and has been explained to me ( not easy to get info as consultants etc are not keen on you knowing too much) my immune system sends 'soldiers' to my joints (healthy joints) on a seek and destroy mission, whilst they are there I'm in agony and this is a flare up, they move on leaving some damage behind. They can go anywhere, any joint can be affected. After several visits to a joint it is permanently damaged, for example my left knee is stuck at an angle, my spine curves and now my fingers are becoming immovable. It leaves weakness in all joints it has visited making movement painful.
There is no cure and everything we have tried was to slow the progress of the condition down but to be able to do that the medication has to knock out your immune system and as soon as they do that with mine every infection going makes a bee line for me and I get very sick, so that's that for me for now unless something else becomes available in the future. All I can do now is rest my joints as much as possible (yes that means using that damn wheelchair) so hopefully they survive a bit longer. I hope this gives you some idea of this illness and it's effect on me personally, I hope I haven't been too graphic for you. I hope also that those of you that were interested now have some understanding of Psoriasis and Psoriatic arthritis. Apparently we are all unique and this condition affects each sufferer differently so remember this is just me talking about MY dealings with it.
Having posted this a while ago I thought maybe an update would be helpful as thanks to the original condition several 'side shoots' have joined in the fun....
I was diagnosed with koebner phenomenon, this means basically that if I get bitten by an insect or scratched or at operation/injection sites etc I am likely to set of a reaction where by psoriasis will appear at that site.
Also last year I was diagnosed with temporal arthritis, again it is connected to the Psoriasis and means basically it has travelled to my head, it causes headaches and blurred vision. Again there is no magical cure for any of this and although there are medications that may or may not help ease the symptoms the consultants are not keen with me due to my susceptibility of infections and abscesses so mostly it is controlling the pain and the effects in any way which works.
- Posted using BlogPress from my iPad
- Posted using BlogPress from my iPad

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