Psoriaisis....A Story (My Experience of Psoriasis)

Member Name: Aginoth

Product:	My Experience of Psoriasis
Date:	28/08/07 (1213 review reads)
Rating:

Advantages: None

Disadvantages: Greasy horrible drug, disfigremnt itching, Pain, social outcast

Time for a story...

Back in the mists of time...Well 12 years I discovered a few small red spots on my torso....Thinking I might have something infectious I went to my GP and he diagnosed an allergic reaction, prescribed me a bottle of Anti-histamine and sent me on my way.

2 weeks alter I had flared for the first time, I had 30% body coverage of Guttate Psoriasis (not that I knew what it was at the time) and was very worried about what it actually was having never heard of Psoriasis.

Back to the doc, who again didn't have a clue; looking back I find this quite worrying I mean this was Scotland I was living in, 2% of the population have Psoriasis to some extent anyway and I would have thought the lower UV level in Scotland would have made it more prevalent...but anyway he sent me off to a dermatologist.

1 month later I received a letter telling me I had an appointment with the Derm in 12 weeks time, by now I was quite p***ed off at the NHS. Eventually I got to see the Derm and was admitted to the godforsaken hole that is the Derm ward at the Western General Hospital in Glasgow for Coal Tar treatment. I remember being lied to constantly, being told that this would go away and would never come back during my 3 week stay in the dirtiest and most unfriendly Hospital ward it has ever been my misfortune to be in. After my release I had a 6 week UVB Broadband treatment, throughout which the machines played up constantly and I ended up sunburnt most sessions. What a fantastic introduction to Psoriasis , but hey I was told this would cure it and make it go away, no-one told me it was genetic or anything.

We moved from Scotland quite soon afterwards as I got a new post in Bath. Pretty soon the spots appeared again, so off to GP (old family doc) and within a week I was seeing Dr.Tan (still think this is a great name for a Derm ) at the RUH in Bath. My treatment couldn't have been more different than in Glasgow, clean modern Derm unit, friendly staff, full explanation (at last) of the nature of the Psoriasis beast. I was treated for Psoriasis by Ingrams regime at the RUH for 5 years about 3 times a year 6 weeks plus at a time as an out patient, but it was obvious that the effectiveness of the treatment was getting less and I was becoming resistant to the UVB treatment.

I was diagnosed as a Diabetic, and my son was born. We moved house at this point from Keynsham to Weston-super-Mare, and so was transferred to the books of Dr.Archer at Weston General Hospital. He persuaded me to try PUVA, my next two treatment cycles were of "Bath PUVA" (where you spend 20 mins soaking in a chemical solution in a Bath to sensitize the skin to the UVA light), which were moderately effective and then I had 2 sessions (8 weeks 3 times a week) of Oral Psoralens PUVA (tablets of Psoralens taken to sensitize the skin), the latter involves spending all day wearing sunglasses as the retina also becomes UV sensitive. After the 3rd PUVA (in 18months) it was obviously not having that much of an effect anymore, so the Derm suggested trying Narrowband UVB and also prescribed me my first oral meds for Psoriasis, Neotigason (Acetritin) a "retinoid" that would hopefully reduce the Psoriasis as well.

Over the next 6 months it was obvious that the UVB was not working, I started to suffer severe depression and ended up signed off work for 6 months, and h was at a really low ebb dealing with the psoriasis and the Diabetes. I had been told I could not have anymore UV treatment due to the risk of skin cancer after so many previous treatments. I then spent 2 years on Neotigason only with no UV treatment.

Throughout all this I have been using various lotions potions and creams on my skin...Steroids, Retinoids, Moisturisers, Calcipritol, Banana extracts, coconut oils, all without much effect other than acting as moisturisers, I am pretty much resistant to all topical treatments I have tried.

After 2 years the neotigason was obviously not working so the Derm moved me onto Hydroxyurea, which made me quite sick and then finally onto Methotrexate last September. I also spent 2 weeks in hospital having intensive Dithronal treatment last September....The combination of Methotrexate and the hospital stay finally did the trick, after 9½ years I was finally clear ofpsoriasiss.

the next four months were great, I was able to go swimming for the first time in a decade, I could play with the kids (three of them now) I no longer requiredd someone to follow me around with a Hoover...Then the bombshell, the Methotrexate was destroying my Liver (my Liver enzymes were up 1000% above normal) so I had to stop taking it.

Finally I am one of the few lucky recipients of the more expensive Biologic treatments now on the market and my current Dermatologist (Dr.Kirkup) fought for almost 18moths to get the £10000 a year funding for me to be able to take Etanercept (Enbrel), which I have now ben on for approximately 14 months

Still have to resort to constant moisturising to relieve the itching....and resisting the urge to pick at the scales... but the Anti Tumour Necrosis Factor Drugs (Biologics) seem to keep the Psoriasis mostly at bay.

Unfortunately I also developed Psoriatic Arthritis about 18 months ago, and now have to walk with a Stick.

For further information I would suggest you go visit http://www.psoriasis-help.org.uk where ther is also a set of fourums where you will find me and numerous others woth the condition willing to offer support and information on how to deal with this horrible conidition.

Summary: Big Bad P