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Psoriasis Club › HealthHealth Boards › Prescribed Treatments For Psoriasis v
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My story

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My story
Meaduk Offline
Novice


Posts: 5
Threads: 1
Joined: Mar 2015
Gender: Male
Location: Weymouth uk
Treatment: ACITRETIN
#1
Sat-07-03-2015, 04:10 AM
Hi a little about me I'm 31 and have had psoriosis since the age of 13 (scalp) which came on very quickly after the first scab appeared on my scalp within a week my whole head was like a tortoise shell. My GP had no idea what it was and my mother was advised to keep me isolated from my siblings incase it was contagious it was only when we went tho the pharmacy that the pharmacist told us it was psoriosis. Unfortunately after trying every treatment under the sun nothing came close to clearing it. At the age of 17 after years of suffering from bullying and the embarrassment from school I restored to using a metal nit comb and scrapping of the plaques and using dovonex this as you can imagine was very bloody and painful but was at breaking point. This helped me a little but things only got worse as from about 18 after years of untreated depression I started getting psoriosis on my torso I was prescribed cream after cream none helped unfortunately it spread all over my body still even after seeing a dermatologist they wanted to keep using creams until about the age of 26 they decided it was time to try uva treatment two years I had light treatment to no avail I was close to giving up I moved back to dorset to be closer to family and was finally getting treatment for my depression got back to the hospital but to my horror they wanted me to have uva again I explained that it didn't work for me and as I had had talks with my old dermatologist about biological treatment was keen to try this there answer was nope not til I had done a full cause of uva with them so did so but then came the news that as that had not worked they would try puva which is uva with pills to increase the effect of the light again this never effected me so finally they decided to try Acitretin 50mg a day this was December 2014 3 months ago 18 years after first getting psoriosis it took about 8 weeks for all of the plaques on my entire body to go completely and the redness is finally starting to fade at the point of starting Acitretin I had a coverage of about 60/70% I now am at 0% plaque except my scalp which has still a thin layer all over. I am happier than I hav ever been and even whent abroad and stayed in a hotel even using the pool. I have had some side effects which include in order of getting them dry lips, dry and scabby nostrils, peeling skin on hands all over and soles of feet, sticky skin all over but hands and skin folds the worst all of these I can cope with but there is one side effect that it really starting to get to me and that is intense itching of the tops of my arms I have been prescribed an antihistamine but the only thing that seems to help is ice I actually give myself frostbite trying to relieve the painful itching. If anyone els has gone through this have you any advice I hope I didn't bore anyone by going on but feels good to open up thanks for reading my story.
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jiml Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 47,972
Threads: 357
Joined: Oct 2013
Gender: Male
Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
#2
Sat-07-03-2015, 09:41 AM
Well you didn't bore me  Thumb  I find your story very sad that you have been mistreated by the system for so long .... But firstly let me offer you a warm  Welcome to the club. You have found here a safe haven where you are among friends

Fred created this site in its current form back in 2011 to help people like me and you, to give us a platform where we can feel comfortable to openly discuss our psoriasis and all the other problems associated with the condition / disease such as anxiety and depression.

We as sufferers can relate to each other's problems and yours sound very familiar to me .....
I wish I could help with the itching problem but thank goodness that's one side effect I haven't had ...
I am so glad that you have at last got clearance from the plaques and  I hope you keep returning here and join in with the club atmosphere and keep us updated on your progress
Thanks for finding us and relating your story .
Jim
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Fred Offline
I Wanted To Change the World But Got Up Far Too Late.
Moderator
Posts: 66,918
Threads: 3,887
Joined: Aug 2011
Gender: Male
Location: France
Psoriatic Arthritis Score: 1
PQOLS: 1
Treatment: Bimzelx / Coconut Oil
#3
Sat-07-03-2015, 12:07 PM
Hello Meaduk  Welcome to Psoriasis Club.

Yes it sounds like they are following the usual protocol before giving you the Bio treatments, though to be fair they usually are the last thing you can try and there isn't anything afterwards (Yet) plus the cost involved are higher for bio's so if they can get you managed cheaper they will.

Depression is also common amongst people with psoriasis and coping with it is difficult, unfortunately it is often overlooked by dermatologists and so goes untreated. But now you've found Psoriasis Club you will always have someone here that is willing to listen and offer support, so never feel alone just shout out and you will soon find others ready to help.

I can recommend the Off Topic board for helping members cope with the low days, there is always something in there to cheer you up or it's a great place to go and have a good old grumble with others who understand away from the public eye. If you do venture in the Off Topic board you will find I'm the sensible one.  Smile

By the way you haven't bored anyone, we all have the choice on reading your post or not. I'm pleased you took the courage to join us here and post as I have always said "If Psoriasis Club is helping one person I will keep it going" so seeing it being used as it was intended makes me feel good.

Like Jim said Psoriasis Club has been in it's current form since mid 2011, though we did first start in May 2010. And it's the members both past and present that make it what it is, so thank you for sharing and please do keep us updated.

Regards.

Fred.  
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D Foster Offline
“You only live once, but if you do it right, once is enough.”

100 + Member I Just Cant Stop !
Posts: 25,150
Threads: 17
Joined: Dec 2014
Gender: Male
Location: East Yorkshire
Treatment: Stelara 90mg and G&T
#4
Sat-07-03-2015, 18:06 PM
Welcome Meaduk I read your story and it was not boring but it does show how the NHS is not as good as it should be in fact far from as good as it should be.I used to itch badly when I was on one tablet which also effected my nails and I had the big toe nail growing out of the side of my toe and itching can drive you mad.I cannot remember what it was called as I seem to have had most treatments that are around, I am on Stelara now which is really good for me.
This site is great mind you most of the inmates are nutcases but we all know what people are going through so any advice you want I am sure that someone can answer any questions .

Dave
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Caroline Offline
You must hurry if you ever want to catch a chicken...
*
Forum Helper
Posts: 26,496
Threads: 113
Joined: Nov 2011
Gender: Female
Location: In between the tulips
Psoriasis Score: 3
Psoriatic Arthritis Score: 3
PQOLS: 4
Treatment: Got back to DMF slow release
#5
Sat-07-03-2015, 22:34 PM
Hi Meaduk,

Welcome to psoriasisclub.
You have quite a story over there and a lot of trouble behind you. Unfortunate for you another view of the incompetence of the medical system, it is everywhere the same.  
Anyway we over here understand where you have been going trough, stand behind you and we know of more treatments that are still possible.
When Dave is talking about nutcases on this forum he is certainly not talking about me, the only thing that is wrong with me is that I am Dutch. Whistle

Have fun with us, Big Grin
Caroline
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mataribot Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 1,339
Threads: 38
Joined: Jun 2013
Gender: Male
Location: USA
Treatment: >_<
#6
Sun-08-03-2015, 02:45 AM
Hello, welcome to the forum. I may be a bit crazy, but I'll save it for another day. I have been on the drug you are on. I didn't do anything for my scalp either....
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Kat Offline
Take my advice; I don't use it anyway.
*
Forum Helper
Posts: 9,829
Threads: 84
Joined: Aug 2014
Gender: Female
Location: GA
Psoriasis Score: 3
Treatment: Clobetasol Topical
#7
Sun-08-03-2015, 14:46 PM
Welcome and thank you for sharing your story.

I know that the scalp psoriasis really drove me bonkers!! So glad to hear that you are much clearer now!

I didn't experience the itching on my upper arms (or anywhere that I didn't have psoriasis) while on Acitretin so afraid I don't have any suggestions other than letting your doctor know how much it is bothering you.

This is a great place to talk to people who understand.
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glenda grant Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 2,887
Threads: 8
Joined: Aug 2014
Gender: Female
Location: New Salem, Pennsylvania
Treatment: biologics
#8
Sun-08-03-2015, 15:15 PM
Welcome Welcome
(Sun-08-03-2015, 14:46 PM)Kat Wrote: Welcome and thank you for sharing your story.

I know that the scalp psoriasis really drove me bonkers!!  So glad to hear that you are much clearer now!

I didn't experience the itching on my upper arms (or anywhere that I didn't have psoriasis) while on Acitretin so afraid I don't have any suggestions other than letting your doctor know how much it is bothering you.  

This is a great place to talk to people who understand.

Welcome Meaduk You will learn a lot here I also have scalp psoriasis and also on my knees, back, belly. I go to the tanning beds 3 times a week seems to help.Plus all kinds of steroid creams,shampoo's, sometimes steroid shots when I get real bad.I probably had scalp psoriasis since a teenager but thought it was dandruff then at age 55yrs old bam I had Psoriatic arthritis and Psoriasis now add thyroid issues to the mix. I don't like to complain because a lot of people have it worse than me.Also I got this later in life. Your story was far from boring, we all try to help each other here. I am so glad I found this group they are fun loving people and have a wealth of knowledge. Again welcome to the group we are all here for you. Thumb
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D Foster Offline
“You only live once, but if you do it right, once is enough.”

100 + Member I Just Cant Stop !
Posts: 25,150
Threads: 17
Joined: Dec 2014
Gender: Male
Location: East Yorkshire
Treatment: Stelara 90mg and G&T
#9
Sun-08-03-2015, 17:39 PM
By the way Meaduk I keep all my moisturising creams in the fridge I find that it's better on the skin when it itches.
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