I have had psoriasis for 17 years and recently it has gotten worse, I'm talking full body. Nothing seems to work, I'm tired of trying and hoping it will get better. How do you keep going when you are in constant pain. I don't know how much more I can take.
I imagine you have seen physicians since you have had it for that long. Have you considered any of the biologics such as Enbrel? I know self injections can be scary but I work for a dermatologist and we have seen some very positive results. Also, psoriatic arthritis can also be why you are in so much pain. I'm sure you know all of this but there are things out there that can help, I promise. And if money is an issue, many of the drug companies have programs that can help. I'm sorry you are dealing with this. Just don't give up hope!
Hi All ,
i am a newbie , i have had P ( Psoriasis ) for over 21 years , and i am tired of playing this Psoriasis's games , i have it from head to toe , ( Plaque , PA , Guttate , and Scalp Psoriasis. i have fired all of my Doctors , even the doctors at the Mayo Clinic dont know what to do with me , cause everything they threw at me did not work from , Oatmeal Baths to Tar Baths to all Oral traetments and Topical treatments to the PUVA and Light treatments to Embrel to Humeria and now finally Remicade . i am tired of wasting $ 28,199.44 of the tax payers money , just to lie on a hospital bed with a needle i my arm for about 3 hours , and then go home and and stay in bed for about 3 days cause it totaly wipes me out , and then do it all over again in another 8 weeks , nothing seems to phase this " HELL ON EARTH " disease that the medical world calls Psoriasis , but i name it for what it really is " HELL ON EARTH " !!!!!!!!!!!!!!!!!!!!!!!
I leave you with this question .
How Long Must 1 Suffer Before 1 Says Enough Is Enough ?!
LoneWolfSilentCry
[email protected]
Hi All,
I have been suffering from psoriasis for about 3 years now. When it came on, it was full blown, covering my entire body. I lost a ton of hair due to the scalp p that I got. My family is very supportive, but outsiders/strangers are not so much. I have been asked if I'm contagious, if I've been burned in a fire, etc. It's awful, and I feel your pain.
I am still hoping for a cure!
@ LoneWolfSilentCry, I understand and feel your pain. Nothing has worked for me either, though I've had the disease for a shorter period than yourself. I can sympathize with you, my friend.
ShowingSomeSkin ,
Thank you , when i first found out that i have P ( Psoriasis )
my home town thought the same way , i could not go into any
resturants stores or in any public place. as like you they thought
i was contagious , i told them that i was not contagious but they
did not believe me , they wanted a doctors statement stating that
P is not contagious . i told them to " BITE ME " , so basically i was
kicked out of my own home town.
i left town but kept going back , and gradually i started going back
into public places and on the streets and people asked me , what
in the world is that on your arms ?! or what in the world is that caked
all over your legs ?!
Some people asked me if it is poison ivy and some asked me if
it is paint , i tell them neither it is P , then they started to ask me
questions about it , and at that time i did not know much about P so
i decided to do some research and put my document together , and
now when people ask me about P i tell them , then i give them a copy of my Document .
i have it on CD , when people ask me about P on line i just send them a
copy of my Document .
and as for how people see me and the looks that they give me , i just ignore
them , but if they keep on stareing at me , i tell them to take a pic it lasts longer :-)
i even to into restarunts and other public places in shorts . :-)
one time when i was living in my van i went to the liberary and was useing their computer i left , then a few days later i went back , and the person at the desk told me that i could not use the computers no more , that if i do use the computers any more i deed to wear a long sleeve shirt , i asked , why ?
She told me that people do not want to use the computer after me because i leave flakes , i looked her dead in the eyes and i told her where she can go ( and my usual and favorite saying ) BITE ME !!!! i mean i yelled it so loud i bet you could hear me from a mile away , then i started yelling at her some more saying , i will not wear long sleeve shirts in the middle of the Arizona Summer and die of a heat stroke because some old rich bag dont like a lil flake on their freaking key borads , if they do not like the real world then they should not even go out their front door !
how i thought that was ( i know i am going to misspell this word ) Discremination !
i mean everyone was looking at us . LOL and she told me , Ma'am if you do not calm down i will have to call the police . i told her to call them i do not care , i will no longer have people treat me like i have lepoarsy ( you know what i mean , i flunked spelling 102 LOL ) i that i have the free right to go and do whatever i want where ever i want just like everybody else and no one is going to stop me , do you understand me lady ?!
well while this was going on someone did call the cops , and they asked her if everything was ok , i was still looking her dead in the eyes and her eyes was going back and forth from my eyes to the cops , a long minute of silence , then she looked at the cops and told them , no sir everything is fine , then they left .
before i left i told her that i was seriously thinking of sueing her for discremination , she said , well um Ma'am we do not need to go there, then i told her , then you better straighten your act up real quick do you hear me ?! because if you do not straighten up your act i will go to the media about this , and that lady can bet your bottom dollar on ! then i left .
and from that day on i do not care what people may think of me or what kind of looks i get , that is their problem , i will wear what i want where i want and go where i want and no one is gonna stop me.
ShowingSomeSkin , please do not ever allow P to stop you from doing whatever you want to do , if you want to wear shorts and a sleeveless shirt into a public place by all means , GO FOR IT !!!!!!!! :-)
Wolf
[email protected]
Hello, I see you suffer from psoriasis, I did also. Me and my daughter. Until I found out about a herbal treatment. No I have been psoriasis free for 3 years, me and my daughter both suffered from psoriasis and eczema. Message me for more info anyone, i'm here to help all I can.
Hi, this is my first time joining any kind of support group, but am not, by any stretch, a newbie to psoriasis. Have suffered from it for about 20 years now; started with plaque psoriasis which led to nail psoriasis which led to psoriatic arthritis. Have had all the treatments; dr's started me with steroid creams, then photo-therapy, then Embrel for 2 years followed by Humera for another 2 years. Yes, the biologics did help tremendously, but 2 years ago I had a rather huge life-changing incident that convinced me to take myself off all bio-injections.
While on the Humera, my G.P. told me she wanted me to get a flu shot. I then contacted my dermatologist to make sure it was o.k., since I knew that the shots are designed to suppress your immune system. He said, "As long as it's a dead-virus shot, I encourage all of my patients to get one." Still believing that dr's. knew what they were talking about, I went ahead and received my first flu shot. 3 days later, I developed double ear infections and a sinus infection! Was put on antibiotics, but that did not prevent me from getting a bit dizzy in the shower from the infections and hitting my head on the shower door. It hurt, but didn't think too much of it; got out, dried off and went about my day. Two days later, my husband had me at the E.R. He told me we had to go because my speech patterns weren't making any sense. The hospital administered a C.T. scan within 5 minutes of our arrival, (no, I do not remember this; my husband told me that this is what happened). I had suffered a major stroke caused by a subderal hematoma. The neurologist in charge of my case told my husband that it was a "slow bleed" caused by my bump in the shower. It affected both sides of my brain; I was in I.C.U. for about a week and then had in-home physical, occupational and speech therapists for about 6 weeks. It's been 2 years since this happened, but still have problems with memory; since I was little, I had been an avid reader. Now when I read a chapter or two of a book at night before bed, I have no memory of what I read the next day and have to re-read the chapters. No, I still am trying, but it is so discouraging!
My point is this - all of this stemmed from mis-information given to me by so-called professionals. When I spoke to my G.P. about this, she told me that it was just a terrible fluke - that I must have gotten the ear and sinus infections from someone I was exposed to. Not true! I had not had an ear infection since I was very young, and had NEVER had a double, plus this was my first sinus infection in my life! By the way, I was 57 when this happened.
There are only 2 ways this could have happened - either the flu shot I received was NOT a dead-flu virus injection, or the dermatologist was wrong in recommending ANY flu shot to people on Humera! My dr's. seem to have forgotten the most important promise they make when they first become dr's. - FIRST, DO NO HARM! I never saw or spoke to my dermatologist again, (interestingly, he knew what had happened and didn't try to contact me; was probably afraid of a law suit), and I never self-injected another Humera shot! Also, this guy was supposed to be the best-of-the-best; he works out of University of Chicago, one of the most prestigious groups in the country. So much for "best"! Probably should have sued him; unfortunately, it's not in my nature...
As far as my G.P., I continued to go to her until we moved from Illinois to Iowa last year. Don't quite know why; guess am just a little spineless! Will never forgive her for trying to convince me that my stroke was just a "fluke"! It has changed my life forever and could have been prevented if these dr's. would stop "practicing" on us and get it right! You do realize why we are called "their patients"; we have to be ever-so-patient just to tolerate and survive them.
Needless to say, my psoriatic symptoms have returned visciously. I have constant plaques, minimal finger and toe nails and very painful psoriatic arthritis. Supposedly, stress is one of the biggest factors in people like us who suffer through all of these horrible symptoms.
What prompted me to join this group was when I read a post from a 21 year old girl who's dr. wants her to start on Humera - she wanted to hear from older people who had been on it as far as long-term effects of the drug. Am sorry, but cannot remember who she is, but if you are reading this, PLEASE take in to consideration all of the very dangerous side-effects these drugs can create and very carefully weigh the benefits vs. the risks before you agree to start on it. Educate yourself and do NOT let your dr. play God and talk you in to anything! Am still trying desperately to find holistic ways to deal with my disease, but so far have not found many reliable sources that I can trust. Am working on diet and exercise; after what I've been through, cutting down on stress is pretty much not possible!
Any help I can give anyone, please contact me; we're all in this together. In spite of what you've just read, I DO try to remain positive! Any tips you could give me would be greatly appreciated. My son is getting married in a little over a month - would love to hear from you if you've got a quick-fix to make me look and feel more presentable for his wedding!
Have you heard of this book yet?
http://www.psoriasis-healing.com/healing-psoriasis-book
I've been reading through it and it's pretty amazing stuff. I am not covered head to toe like many of you but do fear it's progression so I've been weening into the diet.
I did try the steroid cream and only found that it made it better but when I stopped using it, it spread and was double the size. I'm terrified to do any more harsh drugs than that which is how I stumbled upon that book.
It's certainly worth a shot.
You need to contact me. No joke psoriasis is curable but no one knows . I have the answer. Hi my name is George Ramirez I live in san Diego Ca. You need to call me ASAP. I can cure your Psoriasis 858.360.0862. If you know anyone else with this diseSe give them my number don't believe me ?
See for your self
WWW.seacretweapon.com
WWW.seacretdirect.com/meganrogers
Megan is my fiance
Please call Me ASAP I want to help. Don't regret ignoring me your answer is me !!!!!! God bless you. If I don't answer leave me a message and ill get back to you ASAP !!!!!
You can also email me at [email protected]
Together we can all heal psoriasis
I'll be waiting by my computer and phone. Please feel free to share my number with family and friend who are also suffering from skin diesase.
Hi to all, I have psoriasis very badly in my hair, especially scaly in lower hairline, super flaky almost all over head. Would love to correspond with any of you, email address is [email protected]. Look forward to hearing from. Wendy