It was 10 years ago this week....
Time for a story...
Back in the mists of time...Well 10 years ago this week 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 longerrequiredd 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 4 weeksago.
And now I have in the last two weeks gone from 1-2% coverage (Clear n my mind) to nearly 30% cover and getting worse.
Finally I am a candidate for the more expensive Biologic treatments now on the market and my current Dermatologist (Dr.Kirkup) has put in a cse for me to be prescribed it....I will find out in 2 weeks time...
In the meantime it's back to constant moisturising to relieve the itching....and resisting the urge to pick at the scales...
Back in the mists of time...Well 10 years ago this week 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 longerrequiredd 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 4 weeksago.
And now I have in the last two weeks gone from 1-2% coverage (Clear n my mind) to nearly 30% cover and getting worse.
Finally I am a candidate for the more expensive Biologic treatments now on the market and my current Dermatologist (Dr.Kirkup) has put in a cse for me to be prescribed it....I will find out in 2 weeks time...
In the meantime it's back to constant moisturising to relieve the itching....and resisting the urge to pick at the scales...
posted by Aginoth at 7:28 pm
8 Comments:
i have had a 'taste' of psoriasis, had it quite badly about 25 yrs ago, but lucky enough to have only occasional spots now. When I first had it I had 2 small children - the Specialist had a very soft voice and I had to lean forward to hear what he was saying - "What? What?"
"Are you under any kind of stress?" felt like replying "Of course I am you silly man - I have got 2 small active sons, I cant stop itching and cannot go out in the sun without people giving me a wide birth as they think I am catching!"
But, you know how these people intimidate you, so I just said,
"No, not really"
it is really hard not to scratch - hope you find something that works for you.
oh honey - sorry to hear it has returned with such a vengeance... and SO quickly.......
[crosses fingers for new treatment]
cq
Psoriasis is a real pain in the butt isn't it?! A friend of mine also has it and the humidity and heat of Australia plays complete havoc with her skin.
I hope the new treatments work for you! If not I'll try and send you some Vanuatu sun! :o)
My Grandmother had severe psoriasis, mainly on her torso. It crops up in my family to a greater or lesser degree. I get the plaque variety now and then. Nothing severe, but enough to remind me.
Hope the new treatment is effective. If the NHS deny it go to the press.
Er, that should be plack (or however you spell it), not plague.
Really sorry to hear that it's back and so bad. I do hope that you find the long term answer soon.
Nasty thing. I get it on my hands a bit but everytime I get annoyed about it I think of you, Aginoth. Fingers crossed for the treatment.
This sure sounds like a No-Fun situation, Mr. A...I pray this new treatment works for you, with all my heart. I know this has to be damn discouraging....
On another note....I wanted you to know that FINALLY my blogroll is up! CQ may have told you that she discovered there was no link in my Template...(Oh Happy Day!!!) and that was why I could not find the things you went to so very much trouble to help me with....they weren't there....!
I thanked you publically on my blog and I want to thank you again, my dear, right here & now...Bless You!
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