How long have you suffered from psoriasis?

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Permalink Reply by Michael P Taylor Sr. on February 24, 2010 at 10:59am

32 years and counting. I was just 10 years old when my first flare up happened. It reared it's ugly head by showing up widespread over my torso and extemities. The first Doctor we went to was a gen pract who diagnosed it as scabies and gave my mother a cream to kill them off. She was upset at his mis-diagnosis then, but now how I wish he was right! I've used everything available I believe. Topicals ranging from tar, banana peels, bacon grease, hydro, clobetesol, dovonex, triam, etc... and orals from metho, soriatane, prednisone, zinc, fish oil, etc... to biologicals enbrel, humira, raptiva... Most showed some clearing at first, only to see it return, sometimes with a vengance! But one thing has always worked throughout the 32 years and thats sunlight. I now use methotrexate and tanning beds during the winter and just sun in the summer. Gives my liver a break cutting the Metho out for a few months.

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Permalink Reply by Melissa Denise on February 24, 2010 at 11:44am

I have been on metho, many years ago. I had difficulty with nausea while on it. Do you take it orally, or shots? Shots made the nausea much less, but still the day after shot was difficult, but tolerable. Light is what cleared me years ago. I have slowly started coming out of a 10 yr remission, and it is coming back with a vengence. I cannot get it under control, it's consuming me again!!! Amazing how it effects our disposition. I have gone from being so active, and full of life back into a shell it feels like. It's a continual battle for us all. This web site helps reading others, and knowing your not alone with this. Hoping the summer months will bring some releif! A day at Hatteras should cook it off! hahaha
Welcome Michael, and any other new comers

Michael P Taylor Sr. said:

32 years and counting. I was just 10 years old when my first flare up happened. It reared it's ugly head by showing up widespread over my torso and extemities. The first Doctor we went to was a gen pract who diagnosed it as scabies and gave my mother a cream to kill them off. She was upset at his mis-diagnosis then, but now how I wish he was right! I've used everything available I believe. Topicals ranging from tar, banana peels, bacon grease, hydro, clobetesol, dovonex, triam, etc... and orals from metho, soriatane, prednisone, zinc, fish oil, etc... to biologicals enbrel, humira, raptiva... Most showed some clearing at first, only to see it return, sometimes with a vengance! But one thing has always worked throughout the 32 years and thats sunlight. I now use methotrexate and tanning beds during the winter and just sun in the summer. Gives my liver a break cutting the Metho out for a few months.

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Permalink Reply by Dal L. Gordon on February 24, 2010 at 12:30pm

Yes I agree with nausea ,but my dosage will be very low, the is to help my embrel injections.
reason
Melissa Denise said:

I have been on metho, many years ago. I had difficulty with nausea while on it. Do you take it orally, or shots? Shots made the nausea much less, but still the day after shot was difficult, but tolerable. Light is what cleared me years ago. I have slowly started coming out of a 10 yr remission, and it is coming back with a vengence. I cannot get it under control, it's consuming me again!!! Amazing how it effects our disposition. I have gone from being so active, and full of life back into a shell it feels like. It's a continual battle for us all. This web site helps reading others, and knowing your not alone with this. Hoping the summer months will bring some releif! A day at Hatteras should cook it off! hahaha
Welcome Michael, and any other new comers

Michael P Taylor Sr. said:

32 years and counting. I was just 10 years old when my first flare up happened. It reared it's ugly head by showing up widespread over my torso and extemities. The first Doctor we went to was a gen pract who diagnosed it as scabies and gave my mother a cream to kill them off. She was upset at his mis-diagnosis then, but now how I wish he was right! I've used everything available I believe. Topicals ranging from tar, banana peels, bacon grease, hydro, clobetesol, dovonex, triam, etc... and orals from metho, soriatane, prednisone, zinc, fish oil, etc... to biologicals enbrel, humira, raptiva... Most showed some clearing at first, only to see it return, sometimes with a vengance! But one thing has always worked throughout the 32 years and thats sunlight. I now use methotrexate and tanning beds during the winter and just sun in the summer. Gives my liver a break cutting the Metho out for a few months.

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Permalink Reply by Penny Hall on February 25, 2010 at 10:16pm

Hi everyone...My name is Penny. I am 31 and I have had P since I was 14. I started getting symptoms when my dad was diagnosed with Cancer....three months later when he passed I was pretty much covered. My doctor diagnosed me with shingles, Limes disease, and my favorite "an extreme allergy to dust". Before my mom invested a boat load into buying vinyl comforters and dust free systems for the house she decided to take me to a dermotologist. I was diagnosed right away with P and have been on every drug and therapy since.
My family who was also into holistic therapy engouraged me to try different diets, creams, and accupunture. The accupuncture worked on my face (very painful procedure where you are stabbed about 50 times in an isolated area and then they suction the blood out and apply a cream)----it ended when he told me I would need to shave my head and live in DC with him for the summer for similiar therapy....needless to say it was a Hell no, I was 16, and long hair helped me hide.
I did well with light therapy until I started having side effects from the oxyloren. I had to have my nose carterized from all of the nose bleeds and I cannot drink Dr. Pepper to this day because thats what I drank when I took those pills....two nights a week I was throwing up everthing (at 17, it was also a great diet).
I missed half the semester of my senior year because the anxiety got so bad. I have been blessed with supportive friends and family, but it wasnt enough.
I have done methotrexate, Cyclosporine, and now Enbrel for about 4 years. I have been broken out for about a month now, and I have a dr's appt tomorrow. I am going to ask for Stelara. I dont know if you can become immune to Enbrel, or if it was my last batch of cortizone shots for my feet. Anyone who has gotten those damn shots know that they are freakin Chuck Norris or Rambo after they get them because you feel like no pain should exist (especiallly 45 times on the soles of your feet).
I have had some pretty dark moments. I almost feel like I am paying for something I have done in my past at times. I feel like I am the only one that has this because there is no one else in Hampton VA that has it that I have seen. I have a great friends and family, and feel truly blessed, but there are times where I feel like I dont belong anywhere. I was so happy when I found this site...and all of your experiences make me feel like I do have a home.
I wish much luck to all of you and I am sorry for rambling.....but remember even though this horrible disorder separates us from what we consider normal....it makes us the strong, beautiful people that others can only dream about. You cannot bottle what we have gone through, will go through, and will continue to face.....you have to be it.....and we are.

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Permalink Reply by Dal L. Gordon on February 26, 2010 at 9:03am

Welcome home Penny, strange as it may seem this may be the only real family we have to identify with, cause if medical science can't find a sure cure this it, and if that's that the case I want to know more about you guys. And I'll start with myself. I was born in Winona MS in 1947, that would make me 62, my family moved to Chicago in 52, I was diagnosed with P at 12 only because the previous Dr. had no idea what I had, a Dr. Lawlor who practiced in Chicago looked me straight in the eye and said son you have psoriasis, and you will have it for the rest of your life, talk about a shocker, my Mother was dumbfounded, she said we will have to get a second opinion of which we've been getting ever since. Up until now he's been right in as much I would like to say he;s wrong I imagine I will die with it. But until then, I intend to enjoy my life as much as I can.......

Penny Hall said:

Hi everyone...My name is Penny. I am 31 and I have had P since I was 14. I started getting symptoms when my dad was diagnosed with Cancer....three months later when he passed I was pretty much covered. My doctor diagnosed me with shingles, Limes disease, and my favorite "an extreme allergy to dust". Before my mom invested a boat load into buying vinyl comforters and dust free systems for the house she decided to take me to a dermotologist. I was diagnosed right away with P and have been on every drug and therapy since.
My family who was also into holistic therapy engouraged me to try different diets, creams, and accupunture. The accupuncture worked on my face (very painful procedure where you are stabbed about 50 times in an isolated area and then they suction the blood out and apply a cream)----it ended when he told me I would need to shave my head and live in DC with him for the summer for similiar therapy....needless to say it was a Hell no, I was 16, and long hair helped me hide.
I did well with light therapy until I started having side effects from the oxyloren. I had to have my nose carterized from all of the nose bleeds and I cannot drink Dr. Pepper to this day because thats what I drank when I took those pills....two nights a week I was throwing up everthing (at 17, it was also a great diet).
I missed half the semester of my senior year because the anxiety got so bad. I have been blessed with supportive friends and family, but it wasnt enough.
I have done methotrexate, Cyclosporine, and now Enbrel for about 4 years. I have been broken out for about a month now, and I have a dr's appt tomorrow. I am going to ask for Stelara. I dont know if you can become immune to Enbrel, or if it was my last batch of cortizone shots for my feet. Anyone who has gotten those damn shots know that they are freakin Chuck Norris or Rambo after they get them because you feel like no pain should exist (especiallly 45 times on the soles of your feet).
I have had some pretty dark moments. I almost feel like I am paying for something I have done in my past at times. I feel like I am the only one that has this because there is no one else in Hampton VA that has it that I have seen. I have a great friends and family, and feel truly blessed, but there are times where I feel like I dont belong anywhere. I was so happy when I found this site...and all of your experiences make me feel like I do have a home.
I wish much luck to all of you and I am sorry for rambling.....but remember even though this horrible disorder separates us from what we consider normal....it makes us the strong, beautiful people that others can only dream about. You cannot bottle what we have gone through, will go through, and will continue to face.....you have to be it.....and we are.

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Permalink Reply by Melissa Denise on February 26, 2010 at 10:21am

Hey Penny, Welcome, and look forward to chatting with you more. I live in Hampton Roads, VA also!
Small world, see you are not alone!
I was wondering why they did not offer you to soak in the oxysoralin? I was taking it orally, and like you, cannot drink fruit juice any longer, I drank it when taking the pills, and the nausea, and throwing up ewwww, I totally relate! So, my derm doc changed it so I soaked in a whirlpool for about 20min, and then got in the lights. Worked wonderful! Had remission for 10 years. Now.....it's coming back with a vengence, which she told me it could happen. Unfortunately, I don't live in that city any longer"San Diego" I know Pariser in Norfolk used to offer same type therapy, but they were slow on uping the lights. If you would like more info, let me know. Again! Welcome! Your not alone!
Dal L. Gordon said:

Welcome home Penny, strange as it may seem this may be the only real family we have to identify with, cause if medical science can't find a sure cure this it, and if that's that the case I want to know more about you guys. And I'll start with myself. I was born in Winona MS in 1947, that would make me 62, my family moved to Chicago in 52, I was diagnosed with P at 12 only because the previous Dr. had no idea what I had, a Dr. Lawlor who practiced in Chicago looked me straight in the eye and said son you have psoriasis, and you will have it for the rest of your life, talk about a shocker, my Mother was dumbfounded, she said we will have to get a second opinion of which we've been getting ever since. Up until now he's been right in as much I would like to say he;s wrong I imagine I will die with it. But until then, I intend to enjoy my life as much as I can.......

Penny Hall said:

Hi everyone...My name is Penny. I am 31 and I have had P since I was 14. I started getting symptoms when my dad was diagnosed with Cancer....three months later when he passed I was pretty much covered. My doctor diagnosed me with shingles, Limes disease, and my favorite "an extreme allergy to dust". Before my mom invested a boat load into buying vinyl comforters and dust free systems for the house she decided to take me to a dermotologist. I was diagnosed right away with P and have been on every drug and therapy since.
My family who was also into holistic therapy engouraged me to try different diets, creams, and accupunture. The accupuncture worked on my face (very painful procedure where you are stabbed about 50 times in an isolated area and then they suction the blood out and apply a cream)----it ended when he told me I would need to shave my head and live in DC with him for the summer for similiar therapy....needless to say it was a Hell no, I was 16, and long hair helped me hide.
I did well with light therapy until I started having side effects from the oxyloren. I had to have my nose carterized from all of the nose bleeds and I cannot drink Dr. Pepper to this day because thats what I drank when I took those pills....two nights a week I was throwing up everthing (at 17, it was also a great diet).
I missed half the semester of my senior year because the anxiety got so bad. I have been blessed with supportive friends and family, but it wasnt enough.
I have done methotrexate, Cyclosporine, and now Enbrel for about 4 years. I have been broken out for about a month now, and I have a dr's appt tomorrow. I am going to ask for Stelara. I dont know if you can become immune to Enbrel, or if it was my last batch of cortizone shots for my feet. Anyone who has gotten those damn shots know that they are freakin Chuck Norris or Rambo after they get them because you feel like no pain should exist (especiallly 45 times on the soles of your feet).
I have had some pretty dark moments. I almost feel like I am paying for something I have done in my past at times. I feel like I am the only one that has this because there is no one else in Hampton VA that has it that I have seen. I have a great friends and family, and feel truly blessed, but there are times where I feel like I dont belong anywhere. I was so happy when I found this site...and all of your experiences make me feel like I do have a home.
I wish much luck to all of you and I am sorry for rambling.....but remember even though this horrible disorder separates us from what we consider normal....it makes us the strong, beautiful people that others can only dream about. You cannot bottle what we have gone through, will go through, and will continue to face.....you have to be it.....and we are.

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Permalink Reply by Wasim Naqvi on February 26, 2010 at 10:34am

Oh yess I read that book while I was admitted in St. Thomas's Hospital. It was handed to me by a neighbourin impatient who was really nice during the day but during the night his farts were like experiencing WW2 being in a bomb shelter with thunderous explosions whippin up the skies hehe

Interesting book, though i didn't follow it but it helped along the way to possibly understand the condition and encourage the natural way. Though i prefer the natural diet with natural sunlight hence today I'm in Dubai. What kind of oils does Pagano recommend? I've used reg moisturizers and black seed, olive and mustard oils. Though not the best of scents in the world, but they helped. Only down-sider for me was using them before hitting the sun-bed, i used to be very fair skinned now a little darker but to some satisfaction a nice crisp tan too.

Garry Leavy said:

Hi Wasim,
I started the diet based on the book by Dr. John Pagano called 'Healing Psoriasis; the natural alternative'...I think he covers 7 major steps to healing it, all natural...from diet to excercise to spinal repair to rubbing in natural oils etc...It didn't work for me....and yes I did stop taking topicals while I tried it, I could at this point as it wasn't a quarter of what it is now. His diet basically outlibe how, as humans, our diet shoudl consist of 90% alkaline forming foods (green veggies, fruit etc) and 10% acid forming foods (all the other yummy foods most of us eat 100% of the time!!!!!) so it requires fierce discipline and it is expensive too. If you have ever shopped at an all natural food store (Mrs. Greens, Whole Foods etc) you will know that to replace the regular (acid-forming) foods in your house with goats milk and what not it will become expensive, and I do not have the income to purchase regular food for my wife and kids and a whole separate set of food for me.
Anyhow, I excercised and really tried hard to follow the regimen like epsom salt baths 4 times per week, regular excercise, the diet, rubbing in oils...but it becomes a lifestyle and that is the way you have to look at it, you have to accept it as a life change and not some quick fix diet/program where once (or if) your skin clears you can go backl to the yummy food life!.....thats my best way to describe it.....

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Permalink Reply by Wasim Naqvi on February 26, 2010 at 10:41am

Welcome penny, 28 british-2-dubain here. Penny i agree with u, the condition makes us stronger psychologically. It kinda adds confidence to our natural way of thinking and the sense of perfection and pursuing it idealistically fades and makes us a bunch of realists (to some extent). Unfortunately where it doesn't help is exposure and the freedom to do certain things simply because the fools of society view the extremity of our condition by showing disgust, fear and social disapproval. Like Dal Gordan says "We shouldn't give a crap" (not exactly in those words) and i agree!!

Penny Hall said:

Hi everyone...My name is Penny. I am 31 and I have had P since I was 14. I started getting symptoms when my dad was diagnosed with Cancer....three months later when he passed I was pretty much covered. My doctor diagnosed me with shingles, Limes disease, and my favorite "an extreme allergy to dust". Before my mom invested a boat load into buying vinyl comforters and dust free systems for the house she decided to take me to a dermotologist. I was diagnosed right away with P and have been on every drug and therapy since.
My family who was also into holistic therapy engouraged me to try different diets, creams, and accupunture. The accupuncture worked on my face (very painful procedure where you are stabbed about 50 times in an isolated area and then they suction the blood out and apply a cream)----it ended when he told me I would need to shave my head and live in DC with him for the summer for similiar therapy....needless to say it was a Hell no, I was 16, and long hair helped me hide.
I did well with light therapy until I started having side effects from the oxyloren. I had to have my nose carterized from all of the nose bleeds and I cannot drink Dr. Pepper to this day because thats what I drank when I took those pills....two nights a week I was throwing up everthing (at 17, it was also a great diet).
I missed half the semester of my senior year because the anxiety got so bad. I have been blessed with supportive friends and family, but it wasnt enough.
I have done methotrexate, Cyclosporine, and now Enbrel for about 4 years. I have been broken out for about a month now, and I have a dr's appt tomorrow. I am going to ask for Stelara. I dont know if you can become immune to Enbrel, or if it was my last batch of cortizone shots for my feet. Anyone who has gotten those damn shots know that they are freakin Chuck Norris or Rambo after they get them because you feel like no pain should exist (especiallly 45 times on the soles of your feet).
I have had some pretty dark moments. I almost feel like I am paying for something I have done in my past at times. I feel like I am the only one that has this because there is no one else in Hampton VA that has it that I have seen. I have a great friends and family, and feel truly blessed, but there are times where I feel like I dont belong anywhere. I was so happy when I found this site...and all of your experiences make me feel like I do have a home.
I wish much luck to all of you and I am sorry for rambling.....but remember even though this horrible disorder separates us from what we consider normal....it makes us the strong, beautiful people that others can only dream about. You cannot bottle what we have gone through, will go through, and will continue to face.....you have to be it.....and we are.

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Permalink Reply by Nagy Llászló on March 4, 2010 at 9:15am

Sziasztok Laci vagyok magyarországról. Tudna nekem valaki ajánlani valami jó kezelési modot a sorimra?

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Permalink Reply by Matt Vincent on March 8, 2010 at 6:57am

So after 10yrs of trying various meds and myths, for the last 3months i have been on a strict elimination diet wich involved lots of leafy greens, heaps of water and lots of sunshine. Added regular exercise (daily) and 1hr of "me" time (reading,movie etc). Its now 90% gone and fading. Ive tried things like this in the past with little improvement but this time enough was enough. I had a written daily plan to follow and stuck to it religiously. Saw no change for 1st 4 weeks wich was disheartning but then the scaling stopped, then patches started reducing in size and now just light red marks. Only use a basic moisturiser every now and a gain from being out in the sun. Ive lost 10kgs, feel great and am wearing shorts!! (this is the only forum that can appreciate something so trivial)

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Permalink Reply by rachel meyer on March 8, 2010 at 1:18pm

I was diagnosed with psoriasis @ 14. A world renown dermatologist told me, there is no cure for psoriasis, but going to the Dead Sea located in Israel, will prevent it from spreading and possibly remove whatever patches already exists. The reason for that is, the Dead Sea is located 360 deg below sea level, therefor the sun has no ultra voilent rays(allowing the person to safely sit out..).....so the sun actually cures my existing patches and prevents new ones. I have been going there since I am 14......over 15 yrs...and thankfully...it has yet to spread!!!! I jUSt sit out in the sun..tanning, literally all day for about 10 days....and that gets me through an entire yr!!! I meet people from all over the world there!!! It really works!!

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Permalink Reply by angelique pascual on March 22, 2010 at 10:23am

hi rachel, just wondering, besides traveling to israel, do you still use some medications like ointments or moisturizing creams?

rachel meyer said:

I was diagnosed with psoriasis @ 14. A world renown dermatologist told me, there is no cure for psoriasis, but going to the Dead Sea located in Israel, will prevent it from spreading and possibly remove whatever patches already exists. The reason for that is, the Dead Sea is located 360 deg below sea level, therefor the sun has no ultra voilent rays(allowing the person to safely sit out..).....so the sun actually cures my existing patches and prevents new ones. I have been going there since I am 14......over 15 yrs...and thankfully...it has yet to spread!!!! I jUSt sit out in the sun..tanning, literally all day for about 10 days....and that gets me through an entire yr!!! I meet people from all over the world there!!! It really works!!

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