How long have you suffered from psoriasis?

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Permalink Reply by Ramon Nadal on November 16, 2010 at 2:41am

yah hope we find cure for this. but lets accept this, because God will not give us problem or a thing that we cant overcome and we cant face. He know that we can face this problem and we can survive on psoriasis. I'm really happy to see this site. this gives me strength and courage to fight everyday. and i don't feel alone. all i need is someone like us that have the same condition will understand me and understand us. thank you very much

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Permalink Reply by Tanya F. on November 16, 2010 at 2:58pm

suffered from Psoriasis for 17 yrs.... it have gotten worse in the last 5 yrs. i hope and pray 2 god everyday that some cure will b developed.

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Permalink Reply by Betty Pannell on November 29, 2010 at 3:27pm

Greg, I've had P. for over 47 years. From absolutely horrible to sort of mild. Stress and some food and drink cause it to flare, Especially alcohol, being around cigarette smoke, such as a bar or party really makes it bad. Which is kinda ironic, being my parents smoked like trains when I was growing up.

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Permalink Reply by Sara Robb on December 6, 2010 at 10:22am

I have had it for 22 years. 30 now, so it started when I was 8. Used everything under the sun but nothing worked. Gave up at 19. When I was 23 the biologics came out. Tried Amevive it was a Christmas miracle. Went from about 85% covered to 100% clear. Lasted almost a year. Been on it 5 times now. I am weary of the long term side effects but the way I see it I would rather have a shorter happy life than a long MISERABLE one. My only complaint with Amevive is the price. Thank God for help. It's seriously been the most amazing gift I have ever received. To know what my skin looks like and to lead a "normal" life. It has been so long I had forgotten what happy felt like.

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Permalink Reply by Bilal Ashraf on December 19, 2010 at 2:08pm

18 years

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Permalink Reply by Catherine on June 20, 2011 at 1:02am

20 years. (wow didn't realize it myself.) Severe condition. On good days psoriasis covers about 80% of my body, mostly 95% thru out the year leaving some of my face, feet and hand spared... Psoriasis continued to consume me. Before, my chest, neck, face and hand are all spared.. now not much anymore. It's hard being a girl with a red patchy neck/chest/face.

 

I would love to have the cure but currently not as hopeful. Reason being I heard they found poss cure for cancer, but due to low production value, that's the reason why news was not all over it nor funding eager to be given. I fear same for us, what would happen to big company if they did found a cure for us? I remain hopeful though over time, our quality of lives will improve!

 

On a high note, I went to Hawaii, conquered the Diamond head hike. (A 0.75-mile (1.1-km) hike leads to the edge of the crater's rim. Signs at the trailhead say that the hike takes 1.5–2 hours round-trip, and recommends that hikers bring water. Although not difficult, the signs also say that the hike is not a casual one: the mostly unpaved trail winds over uneven rock, and climbing 271 steps!) I survived the hike! During the time, I was dehydrated and over heating due to having to wear long sleeves and leggings to cover myself... Having psoriasis over my knee, arm, I am not in shape much.. which making the hike hard. However, I told myself if I can do this, I can prove to the world and myself, psoriasis might consume us physically, mentally or emotionally, and degrade us or depress us, but as long as we keep on fighting, we can overcome it!

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Permalink Reply by Julie Bernhardt on June 29, 2011 at 8:28pm

I have had it since I was 16; 52 now.  Amazing how little I understood about what was wrong until last weekend. 

for any of you that are not aware:  do not let it get dry.  read on.

For me It flared to 50% at 17; cracking, bleeding -- a mess.  The first doctor I went to see about it wanted to inject Cortizone.  My grandma had recently told me about the side effects. I asked him, "hey won't that disolve the cartlidge in my knees and elbows?"  The doctor was totally taken aback that I had any information at all.  Did not give me the shots.  Still take a dim view of any cure that is worse than the disease.

The only time that I cleared, in total, was in San Philipe Mexico when I was about 19 1/2.  3 days of soaking in Ocean water, mineral oil, sunshine.   It came back of course, not as aggresively as in the past.  I have spent alternating years ignoring it; covering it up; putting oil on it, trying this diet or that one, taking fish oil, doing UV treatments which worked until I stopped; frustrated that when you stop doing the treatment of the day -- it recurrs... and sometimes not. 

My second son has P came on at 15 he is now 24 currently at 60%. It's everywhere. I have been digging and looking trying to figure out how to help him.  Took him to a dermatologist ($483 for one visit -- seriously).  I was turning a corner and ready to try anything to get him some relief. 

Here is what the Doctor said:   Do not let it get white.  Do not pick; pull; or irritate an inflamed area.  Prescribed a big jar of vaseline and mineral oil with a very small amount of steriod.  He also said to get some AmLactin (over the counter  -- gently removes dead skin layer).  Costco has it.  He thought that light therapy would be a good place to start.  He confirmed what I already knew; all the current treatments -- when you stop -- no longer work.  

I had heard from a couple of folks that Vaseline worked.  I had wrinkled my nose.  I had been using straight oils for quite some time.  Castor Oil/Almond oil/Lanolin 15 years ago I noticed that if you keep it ... wet, it slows it down. 

I came across some information the other day that has me very interested and I hope that this helps some of you.  In recent years the medical community is reporting that P is an immune system disorder. 

It occured to me last weekend as I was reading about dry skin at the Vaseline web site that in fact my immune system is working fine.  It's reacting to a breech in my skin (lipids are missing) and the resulting massive water loss.  A two alarm fire for the average immune system.  If you have P your immune system is above average and -- your body is at dev con 3 -- and launching a counter attack which consists of promoting cells in 3 to 4 days instead of 28.  The cells come up so fast, they are not mature and start to pile up which is how our excellent immune systems plan to stop that water loss. 

 

We went through the first vat and my son refused to continue because of the steriods.  It took a while for him to admit what was going on.  Took him straight to the pharmacy and bought Vaseline and mineral oil and talked to the pharmacist about how to mix it up and how to get it in large quantities. 

I have had this all my life and I am the one putting it on him so I am also putting it on me.  Here is the good news:  it's working.   Turns out that the Vaseline fills in the gaps left by those missing lipids which is turning down the immune response.  I am watching that lovely event occur.  Takes time, persistance, and action.l  I do a bit more reading and researching and find out that one doctor is reporting the following regarding this type of regime:

Get wet first.  10 minutes in a bath or shower.  Before you dry off massage in small, as in tiny amounts of Vaseline in sort of circular motions.   (You are helping yourself by filling in the gaps created by the missing lipids. Your immune system has one less thing to deal with.)  This locks the moisture in.  If you would like to help this along... Get some pure glycerine at the pharmacy; about 5 dollars.  Dilute it 10 to 1 with water and either splash or spritz on first.  Glycerine is a humectant and will make the water you just gave your body bind to your cells.  The Vaseline locks it in. 

It's sensible.  It's working.  It explains a lot of things.   Sleep well.  Drink plenty of water.  Eat close to the earth.  Get ten hugs a day.  Add two short showers and tiny bits of vaseline.  I hope your results are as good as mine. 

It makes an amazing amount of sense.  It is not going to make a pharmacutical company a lot of money.  Frankly, I like the idea that my immune system is working. 

 

Dry skin creates a situation in which the immune system responds. 

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Permalink Reply by Julie Bernhardt on June 29, 2011 at 9:00pm

Congradulations on your achievement!  My heart goes out to you. Clearly you are a fighter, like me.  Have you tried soaking in Dead Sea Salts -- 4 cups in lukewarm bath 3 to 4 times a week?  I am about to add this to my sons treatment.  He is at 60%.  No silver bullets but try the wet vaseline approach I posted.  It's helping my son and me.  Would love to hear from you either way.

Catherine said:

20 years. (wow didn't realize it myself.) Severe condition. On good days psoriasis covers about 80% of my body, mostly 95% thru out the year leaving some of my face, feet and hand spared... Psoriasis continued to consume me. Before, my chest, neck, face and hand are all spared.. now not much anymore. It's hard being a girl with a red patchy neck/chest/face.

 

I would love to have the cure but currently not as hopeful. Reason being I heard they found poss cure for cancer, but due to low production value, that's the reason why news was not all over it nor funding eager to be given. I fear same for us, what would happen to big company if they did found a cure for us? I remain hopeful though over time, our quality of lives will improve!

 

On a high note, I went to Hawaii, conquered the Diamond head hike. (A 0.75-mile (1.1-km) hike leads to the edge of the crater's rim. Signs at the trailhead say that the hike takes 1.5–2 hours round-trip, and recommends that hikers bring water. Although not difficult, the signs also say that the hike is not a casual one: the mostly unpaved trail winds over uneven rock, and climbing 271 steps!) I survived the hike! During the time, I was dehydrated and over heating due to having to wear long sleeves and leggings to cover myself... Having psoriasis over my knee, arm, I am not in shape much.. which making the hike hard. However, I told myself if I can do this, I can prove to the world and myself, psoriasis might consume us physically, mentally or emotionally, and degrade us or depress us, but as long as we keep on fighting, we can overcome it!

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Permalink Reply by Julie Bernhardt on June 29, 2011 at 9:07pm

I have tried everything over the years.  Castor oil will also work but the Vaseline is better.

 

Try this:

soak your foot for 10 minutes in water or dead sea salts

spritz with 10 to 1 solution of glycerin

do not dry your foot.

massage in tiny amounts of vaseline.

Do not let it get white.  Do not pick at it.

Lorraine Chitsos said:

I first suffered with psoriasis when I was about 22 and had it badly on just the one elbow. Tried various creams and lotions as one does and it cleared. I suffered again about 7 yrs later with a bad dose down the shin of one leg...strange place I know. That also cleared with the use of diprosone.

Now at 45 and starting about 6months ago I have it real bad on the heel and arch of one foot. This makes for wonderful days I can tell you. Somedays I just put one foot on the floor and know that I am not going to make it to work that day. Presently I am using Diprosone OV and a combination of this and a couple of other creams. Its quite a messy cream which is used at night and the Dip during the day. I had UV treatment for about 6 weeks and in the end had to give it away as it was actually burning my skin for up to 2 - 3 days afterwards. I'm actually walking a little better now...not much but a little and can wear just the one pair of shoes which I also have 100% cotton socks on. When I am home, I am bare foot...its the best way. My poor toes are getting such a workout as I literally walk lop sided and on my toes and the ball of my foot.

The dermatologist gave me a script for methotrexate and after reading all the literature I have decided against taking it and will continue with the creams for now.

I just wonder does anyone have any diet tips or have they noticed flare ups after eating certain types of foods. And of course I am diabetes type 2 and have high blood pressure - both of which are fairly well under control at the moment.

I know this inherited disease is mainly triggered by stress and I do have a fairly stressful job but if it was anywhere else on my body I think I would be coping a lot better than I am at present.

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