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A Community For Those With Psoriasis

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I have psoriasis and an another auto immune disease. Tell me what to do next. [15 Jul 2013|10:30am]

moropus
I just had a zillion zillion tests done while I was confering with doctors about my carpal tunnel surgery and I have psoriasis and another auto immune disease and a couple other things I won't go into.  I'm a mess mentally. The psoriasis is extremely mild. I had a small patch on each arm and thought they were from touching wild plants or masses of insect bites, etc.  They were very painful and my elderly neighbor kept entertaining me with old folks' remedies, including the mild bleach solution for poison ivy, which burned like crazy and left it numb for hours.  I don't know what to do. They told me to see a specialist and one of the staff told me to try the anti- inflammatory diet, which will be hard because it eliminates the foods I love most.  However, if that's the way it is, then that's the way it is. My brothers all have food allergies to things they like, quite common foods, so why should I be any different?              I dont know what to do. When you first find out, what do you do?                                                                                                                                      
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donating bone marrow [15 Jun 2012|09:18am]

_asherah_
So I felt a calling today to go and see about joining the bone marrow registry to maybe be able to save someone's life at some point. So I go to marrow.org to register and....apparently psoriasis prevents you from being on the registry. ...DAMMIT! Yet another thing taken away from this stupid disease...

Autoimmune Diseases
If you have Hashimoto’s thyroiditis or Grave’s disease, you are able to register if the disease has been successfully treated and you are medically stable. Those with other autoimmune disorders, including the following disorders*, are not permitted to register:

Rheumatoid arthritis (RA)
Systemic lupus erythematosus (SLE)
Fibromyalgia
Multiple sclerosis
Psoriasis
Vitiligo
Guillain-Barre syndrome
Idiopathic thrombocytic purpura (ITP)
Antiphospholipid syndrome (APS)
Sjogren’s syndrome
Iritis / Episcleritis
Crohn’s disease
Ulcerative colitis
Raynaud’s phenomenon
Ankylosing spondylitis
*This list includes common autoimmune disorders, but is not a complete list of all disorders considered autoimmune.
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My story [23 Mar 2012|01:13am]

ext_1121274
Dear All,

I would like to share with all of you how I handeled my psoriasis.
I want to declare it here at the beginning that I am not advertising any product!!, and
if possible Im going to avoid product names.
It is a really long long story so Im not going to tell every detail now.


I never knew that I had psoriasis until it appeared due to a huge emotional shock at my age 23.
The psoriasis expanded on my skin untill it covered around 98 percent of my body; that was the time when 
I had to go to the hospital where they used vaseline and a steroidic cream.
I knew that it was no solution. I guess, dont have to introduce the search to any of you with psoriasis, what
could heal you...Black sea.. sea salt bath.. western medicine.. eastern medicine...meditation.....kineziology.. or what so ever, the
list is infinite...
certain things happend to me, .. or ..certain things I realized, did.. changed..
and
eventually I barely have any spots on my skin.

After it was gone, I have promised myself that I am going to share my story with everybody who it might help, but when I tried to write down what "cured" me, I simply just couldn't write down the one solution. For long time I thought it was self control.., then the awareness of other people getting rid of the symptomes... or finding my own way of dealing with it... actually it is all a little bit.

I had certain rules:
1# : No Alcohol.
2# : Systematic sleeping AND starting the sleep before 12.
3# : Having goals.. first small, then bigger, choosing well what makes me REALLY happy (read Michael Ende : The Neverending Story to find proper answer).
4# : Had to ask myself if I really wanted to be cured, and had to make sure that the answe was deeply a Yes!, had to be aware of it all time.
5# : Keep on with the normal steroidic and vaseline medication.
6# : Build up a strong immune system (for me it was sporting and eating a lot of beetroot)
7# : Leaving everything what leads you to a repeated spasmatic life..games, porn, lot of alcohol... ect. ..

probably I had more...
I am not saying that this will work for everybody, but partly this was what brought me to the solution.
but I am still sure that every one of you have to find your own way there; and I want to assure you that it is possible, and you don't have to pay thousands of dollars, euros, forints, just to get better.
But one thing you must know.., this is not going to happen in two days, and if you !!!!!FEEL!!!!!(without any doubt) that you are on the right track, than keep it on even if cant see the result yet.

probably I am going to extend, finish this but this is it for now.. and any of you feel like asking anything dont hesitate to write me on  
kornel.l.varga@gmail.com . 

Wish you all the best!!
Kornél.
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To all those suffering [17 Aug 2011|01:44am]
au2naturale
[ mood | hopeful ]

I actually used a holistic approach to control my psoriasis. I wanted to share my knowledge and what I have learned with others who are still suffering with psoriasis. Right now, My skin is well controlled and is looking better and it's only been 3 days.I know that no 2 people are the same and my routine might not work for other... but please keep an open mind. I am still learning about it. If anyone want to talk about using a more natural way to help control their outbreaks you can always get it contact with me. If you just want to share things you know or stories, I would love to hear from you guys. Good luck to everyone with finding what works for them.

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MG217 Medicated Tar Shampoo [25 Jul 2011|01:22pm]

noelia
Hey all,
I have about 10 or so MG217 Medicated Tar Shampoo's. I volunteer for NPF and a couple of other volunteers and myself had a beach party yesterday to raise funds. One of the women there had a bunch of these shampoo's that she was giving away and I grabbed the remaining ones thinking I could just give them out to people that needed them.

So here's the deal, send me a message with your address and I will ship you one of these for free. It's that simple.

I haven't tried this shampoo yet but the woman who had these had done clinical trials with MG217 and had luck with the lotion/creams but hadn't tried the shampoo since she doesn't have scalp psoriasis.

We are having a walk on October 15th in San Diego so if you'd like to donate please do, every little bit helps. But, again, you don't need to donate for me to ship you the shampoo. Here's the link to my page: http://walk.psoriasis.org/goto/noe

I hope this helps someone!
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All About My Liver... [20 Jun 2011|08:00pm]

guinnevere_b
[ mood | relaxed ]

Isn't that an intriguing subject?

Cut for boring details, not squicky unless you're VERY squeamish, honest!Collapse )
So it wasn't much of a trial after all and although I can't say I'm looking forward to another one, I'm not scared of it anymore. It's more complicated than getting blood work at the lab, but not more painful.

X-posted to Guinnevere_B

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Psoriasis & Egg Donations [18 Mar 2011|04:08am]

byname
Hello All,

I've put some thought into this and I am considering applying to be an egg donor. Of course, the genetic downside to this is that I have Psoriasis. Have any of you attempted this process and found that you are not eligible simply because of the "disease", I prefer to say 'immune disorder'?

From my research, I also found that some companies are interested in egg donators for the purposes of Psoriasis research. I'm more interested in helping a woman to have a baby than I am to donate it for the sake of research, though I can honestly say I wouldn't mind helping out there either. It's just that I have never wanted to have kids and I feel that if another woman could use my eggs, and all parties were informed of possible risks, then I would be more than happy to help.
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[04 Mar 2011|04:51pm]

steadyriot
Hi y'all! It's been a minute...
Anyway, my psoriasis has been on the back burner for the past few months. I'll catch you up on my life lately (hopefully you don't mind ;)).
In November I lost my job, which led to one of the most stressful situations I've ever been in. I moved to Oregon to turn my life around and finally do what I want. I FINALLY got a job (after 3 months of being the most stressed, depressed person I've ever known) and you can tell by my skin it's been hell. My arms are disgusting, and I mean DISGUSTING. It's getting on my hands again, and at this point I don't really know what to do.. I'm not getting paid yet (and probably won't be until the end of the month, and I have a lot of debts to pay off) so I have pretty much around $0-5 to spend on anything regarding my skin for the rest of the month..
I know I might sound crazy, but sometimes I wish I could just scrape the psorasis off my skin forever. I feel like I could scrub my skin with my loofa to kingdom come and my arms would still FEEL lumpy, disgusting, and gross.
I know relaxing would probably make it better, but I don't even think I know how to relax anymore.
Sorry for the rant guys, just needed somewhere to vent. Thanks in advance. :)
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National Psoriasis Foundation [03 Mar 2011|01:44pm]

bagecka
I just got a packet of info, great coupons, eucerin sample, and a magazine for signng up for a free years membership here:

http://psoriasis.org/netcommunity/learn/newly-diagnosed/psoriasis-one-to-one-mentor-program

Thought y'all might be interested.
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tanning progress pictures. [28 Feb 2011|12:33am]

sailinghome
So I've had plaque psoriasis for the last 13 years or so. It comes and goes with and without medication but the last 2 years, it's been pretty bad (for me.) I don't have insurance to visit a dermatologist and can't get any prescription medications. It's been bothering me a lot lately in an emotional sense more than anything and causing serious self-esteem issues so I decided to start going tanning.

I went back in 2007 slightly regularly (I had a package of 200 minutes that I used up) and it cleared my P up pretty well so I thought I'd try again. It's pretty cheap seeing as I can't tan for too long each session being so fair-skinned and all. I only pay about $5 a session. I've only been able to go 3 times now (every other day, 10 minutes each time) but have to wait until next week because $$ is tight this week. I'll come back and update with progress pictures then but I just thought I'd share progress pictures from the first three sessions.


The first picture was taken after my first tanning session but it's essentially the same as how my skin looked before I started tanning at all.Collapse )



I know there are people against tanning in general and that it's not for everyone. It's just an option that helps me since I can't afford to get medicine for it. Has anyone else used tanning and gotten good results?
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SuperBetter [19 Feb 2011|10:40pm]

lotuslion
[ mood | tired ]

I don't know how many of you are familiar with Jane McGonigal or her SuperBetter game, but I was hospitalized last week with a pulmonary embolism and deep vein thrombosis due to the PICC line in my arm, and when my friend sent me a video about Jane, it made me feel better.

This is the video that gives a short explanation about SuperBetter: http://www.youtube.com/watch?v=ZztLac0Q1EI

And this is the blog post that gives more info: http://blog.avantgame.com/2009/09/super-better-or-how-to-turn-recovery.html

Basically, it turns the struggle against a chronic illness or injury into a multi-player adventure game. The NIH is running clinical trials right now to measure the game's effectiveness as a treatment for mild traumatic brain injury, and there's some anecdotal evidence that it works. I thought I would share this here -- I've been a lifelong gamer, so this idea excites me, but I thought maybe it could be of interest to some of you too.

I'm also starting my own SuperBetter game - my Crohn's has been under control, but something screwy is happening with my immune system and I've just had infection after infection after infection for the last 2 years. Like crazy weird and serious infections, not just colds and sinus infections. For a year, I've been fighting a persistent case of osteomyelitis in my jaw, which has required 3 surgeries so far, IV antibiotics, and probably another surgery in a couple weeks. I kinda hit emotional rock bottom with all this, and this game gives me some measure of hope. If you're interested in reading about the experience, I'm blogging it at http://www.worldofhealthcraft.blogspot.com.

Anyway, I just thought this was a really awesome idea, and wanted to share it. :)


(xposted to curecrohns and autoimmune)

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Mod Post: Community Interests [11 Feb 2011|02:30pm]

byname
Hello everyone,

This process is just in its infancy, so please don't get too excited. I have it on my 'to-do' list to revamp this community. I know that I made a post about it a while back, and there will be one again in the future for suggestions since our community has grown a lot since then. I can only promise that any major changes will happen come May '11 and thereafter. The reason for this being is that I am a student who also works full time and I'll have to wait till I'm not so busy. Such is life, right? haha

However, for now, what I assure you I can tackle at the moment, and what I want to keep focus on, is our "Interests" section of the community. I feel this section is desperately lacking and it's the one area of the community index we should have in the best condition. The reason for this being is that several years ago I found this community by searching for 'psoriasis' as an interest, and I'm sure that story holds true for many of you. However, there are many people out there who may not know what they have, or who may be looking for something more specific like "fluocinonide", and I'd really like for our community to spring up in their search results.

So I'm looking for basic words and any names of medications pertaining to our condition that we can add to the section. I erased some things that were far too vague, so try to really narrow in on descriptions that a psoriasis sufferer would be out for. For example, "dry" is too vague; that could pertain to wine, deserts, skin, air, etc. Most importantly, please do not forget the names of any medications or remedies you have tried because I feel these are pertinent to producing the best results.

In your reply format, please just list things the way we would for interests. This will make it easier for me to just cut and paste. The interests are always listed as a word to a few words separated by commas. For example, just reply like so: psoriaris, dry skin, topicals,

Thanks again. I hope you guys are doing the best you can :)
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Thermal spring [11 Feb 2011|12:37pm]

ajra256
Has anybody tried the thermal spring? Did it help you, or at least did you like it? Your experiences, thoughts?
Of course it will not safe you completely, but I heard if you go there every year your psor should be gone or reduce.
Thanks!
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At My Age Only Certain Meds Work [10 Feb 2011|11:25pm]

guinnevere_b
[ mood | calm ]

When I was young I could get a remission of my psoriasis by using over-the-counter topical coal tar products. They were stinky, but they cleared my plaques.

Those days are long gone. Now it requires methotrexate once a week, with lab work to make sure it isn't destroying my liver. It's a scary old chemotherapy drug, but it gives me good results without the biologics that tinker with the immune system (even scarier to me), so I'll balance the destructive aspect of it as best I can.

I'm about 95-98% clear right now, and that's from being 95-98% covered with psoriasis about 9 months ago. The dermatologist said we might be able to go from 8 pills a week (all taken at one time, on one day) to 9. We'll see. Maybe I could get even better clearing, and that would be AWESOME.

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[10 Feb 2011|12:59pm]

cradleoflove12
Has anyone been going to the tanning salon to clear up their psoriasis? i have been going for many months, and im clear now, but the psoriasis spots on my stomach turned into pigmintation and my skin is very uneven. the white spots are white and its brown underneath the white spots. i dont know what to do, its bothering me but im glad the tanning salon helped my Psoriasis. i used to be 90 percent covered. i even had it on my face but since my face is under the sun all the time, it cleared up and the CLINIQUE skin care products helped my psoriasis too for my face.  When i went to mexico the sun also cleared up the psoriasis on my leg. so im pretty happy about that....i just dont know what to do. Maybe im just to sensitive to UV light?

i also heard that they do lazer surgery for Psoriasis. has anyone tried lazer therapy? what were your results. My mom is thinking about saving money for me so i can get the surgery....is  it a good idea?
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Apple Cider Vinegar [30 Dec 2010|07:46pm]

arianhodskins
Has anyone ever used apple cider vinegar internally and/or externally to help with their psoriasis? I was doing some reading and came across this and hadn't heard of it before. If you have, what were your experiences with it?

Thanks! :D
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Humira [06 Dec 2010|03:28pm]

_asherah_
After a lengthy discussion with my new Derma, I'm being switch from topical stuff that has become useless to me over the years to Humira. Pending insurance approval (~3 weeks they say). So...experiences with Humira? Side effects? Advice? Most importantly, are you happy with it??

I'm a little nervous about giving myself the injection as I am not good with needles. Husband may have to hold me down and do it x_x
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Tuberculosis [30 Nov 2010|09:46am]

hippo__dignity
Hi all.

Back in March, I started taking Humira and then went off of it in July due to changing jobs and new insurance. I finally got all that worked out and was planning to start again yesterday, so my derm gave me the standard TB test that you have to take before taking Humira and it came back positive, so yeah, I have TB.

He says that he suspects that I got it while I was taking Humira last spring. Anyone else had this happen as a result of taking Humira, Enbrel, etc? I knew it was listed as a potential side effect, but thought that it wouldn't happen to me.

I have an appointment with an infectious disease specialist later this week, but while I'm waiting, I was just curious about other people's experiences. I know from my online research that you have to do 6 months of antibiotic treatment for the TB, but I was wondering how it affected your psoriasis. Did you P get better once the TB was treated? Worse? What did you use for treatment for your P while you had TB? Any advice/info appreciated.

Thanks.
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Various questions... [29 Nov 2010|07:16pm]

_asherah_
okay...i've been doing some research and, despite having P for 15+ years, I realized I never pursued anything my dermas didn't recommend/bring up. SO...several questions:

1 - For those women of you who have P and have had children - did your P getting/better worse when pregnant?? Did you switch to certain meds b/c of breastfeeding, etc.?

2 - (sorry this one is complicated) I have high blood pressure. I read several articles saying heart issues and high blood pressure are very common with people with P (something as high as 35% of people with P have it according to 1 article). For those of you taking any kind of injections (Humira, Stelara, Enbrel, etc), have you noticed any change in blood pressure - higher or lower?? I read one person's account who said their blood pressure dropped 20 points.

3 - Did you suffer any side effects from any injection you were taking??

And, yes, I will discuss all of this with my new Derma next month, I just want to get some first hand accounts of stuff :)
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Gluten Free [27 Nov 2010|03:52pm]

tisha_leticia
[ mood | okay ]

Have any of you tried a gluten free diet to clear up your psoriasis? My psoriasis was so much better from being back on Enbrel and once the cold snap started, it flared up big time. It feels like someone is stretching out my skin, I'm peeling, etc. It's super irritating as you all know.

I picked up some cookbooks at the library to get ideas for recipes. I'll admit that I'm not really good at being helathy anyway. I could stand to lose like 100 lbs, drink more water, etc. I know people in much better shape than me who are having issues with their psoriasis as well right now though.

Anyway, any input about the gluten free diet would be appreciated. Thanks in advance!

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