Saturday, 23 July 2011

Psoriasis and Psoriatic arthritis (descriptive so be aware)

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 (palmoplantar pustulosis) 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? Palma=hands and plantar=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 palmaplantar 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.

- Posted using BlogPress from my iPad


Miss B said...

"I hope this gives you some idea of this illness and it's effect on me personally,"
It certainly does that, and some understanding on why hubby has become a dab hand at lunch!!.

Seriously tho its appalling that it took so long to be get the help of a specialist

tinysuz said...

Thanks Peny for describing things so graphically, I had no idea how difficult life must be at times and if other people are unsympathetic it certainly does not help.

Well done for being so brave and positive about it all and all I can do is say how I admire you and send you(((hugs))) and xx for the hard times.

Brookmansbakery said...

I have the pleasure of knowing you in the real world and see first hand how is this awful condition affects you. I take my hat off to you mate - you're an inspiration and a fighter and again, well done Hun. I also know you don't like praise but that's just tough eh:-)) xxxxxx

deb aka murphthsurf said...

Graphic or not...say it! We need as much light on these diseases as possible. I am hoping against hope that one day, maybe in our lifetime, there will be a true cure. And I am hoping that if one autoimmune disease finds a cure, it will lead the path to other cures. You are truly a warrior and thank you for sharing your inspiring story.