I just joined this tribe because I have psoriasis. I was diagnosed back in 1999 because I had a mild case on my scalp and nothing on my body. It went away two years later and over the past few months it came back and now I'm getting in parts of my body. Its so embarassing and I just dont know what to do at this point. I guess I need support more than anything.
I just wanted to say "hi".
I just wanted to say "hi".
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SF Bay Area
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Tue, December 13, 2005 - 10:07 PMHi. First bit of advice I got from a doctor was to try a lotion for dry or cracked and dry skin.
Otherwise, I know it sucks. But remember you are still beautiful! -
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Tue, December 13, 2005 - 10:09 PMI am trying shea butter now. It was always soothing to my skin in general. I want to find out what foods might trigger this. I have issues with wheat and I try to avoid it, but its hard all the time. -
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Tue, December 13, 2005 - 10:14 PMI haven't located a food trigger for mine. If you get any clues, let me know.
I have removed wheat from my diet and the flakes on my elbows and scalp have remained. -
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Tue, December 13, 2005 - 11:54 PMI had problems digiesting wheat, which is why I took it out. I will keep searching for the psorisis trigger.
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Tue, December 13, 2005 - 10:22 PMHi Rose,
I'm so sorry that the dreaded P came back. Ugh!
I am having really good results from the MG217 products from Walgreens. It works SO MUCH better than the other prescription crap for me that I would really recommend ordering some online asap. Or having the store order for you through the pharmacy counter.
downside: smells a bit of tar. Worth it.
I so understand about the embarrassing part. How to stop stressing about it? Stress makes this worse. It's like a vicious cycle. Can you cut out any stressfull activities in your life?
lemme find that link... -
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Tue, December 13, 2005 - 10:24 PMI ordered the complete line of MG217. It's been really helpful:
psoriasis.tribe.net/thread/4...d57f421a1
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Tue, December 13, 2005 - 11:56 PMI do work a lot now and dont sleep much because of it. I have had a ton of stress this year so that may have triggered it.
I will look for the MG217! -
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Wed, December 14, 2005 - 8:52 AMTry not to stress. Yeah, that was helpful advice.
The air here in Oakland is always dry but seems more so than usual this winter. Pfeh. Maybe try sleeping with a humidifier?
If you have Kaiser health insurance, see if they'll let you try the UVB lightbox at Kaiser Oakland. It's worked really well for me.
Avoid tight/chafing clothing. And try not to scratch *too* much.
I try not to, but there's no stopping it. It helps to keep the fingernails trimmed, but my fingernails grow really fast for some reason. Nails are modified skin cells and psoriasis is skin cells dividing too quickly, so maybe there's a connection there...?
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Unsu...
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Wed, December 14, 2005 - 8:59 AMHi Rose,
Stress would definitely do it! Time to find ways to deal with the stress. Yoga or something like that.
I, too, ordered the MG217 products. So far, so good. Put some on and later in the day, a piece of skin comes off. There is a lot of satisfaction with that. Then, the other medicines can penatrate the scales. I've combined my MG217 with Desonide. So far, so good. I've had this spot on my face almost a year. I'm ready for it to go buh-byes.
Anyway...
This is the place to just sound off or rant and rave about the unfairness of P!!
Scott -
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Wed, December 14, 2005 - 9:39 AMThanks Scott!
I do have products with Glycolic Acid and salacic (sp) acid so that may work for me. If not I will order the MG217.
Yes, the stress did it for me. :(
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Wed, December 14, 2005 - 9:05 AMI can try to get a humidifer. I boiled water last night and that really helped. I didnt itch, etc. I cant sleep with the stove on though, so I may have to seriously consider a humidifer. Do you have one you recomend?
I dont have health insurance so that wont be an option.
I try to scrape off the flakes, but I know that probably isnt a good idea. I use shea butter and honey on my scalp before I wash and that's been helping with the itching and flakes.
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Wed, December 14, 2005 - 6:25 PMRose- If you don't have health insurance, there are a number of organizations out there that can help you pay for medications. I work with the advocacy department of the National Psoriasis Foundation and included below are a few of the programs we recommend trying to contact. There is also alot of valuable information on the disease and treatment options, including over the counter options, alternative choices, and prescription meds available on our website at www.psoriasis.org
Many pharmaceutical companies offer financial assistance to patients who otherwise could not afford medications. You may be able to obtain free or discounted medications through the manufacturer directly. Since many programs will direct you to the manufacturer, we suggest contacting the manufacturer in the beginning to eliminate back tracking.
In addition to the manufacturers and programs listed below, ask your doctor, ask your pharmacist, and check the Internet for additional resources. Please check as many resources as you can, because no one program has all the answers.
American Association for Retired People (AARP)
www.aarppharmacy.com
800.289.8849
Discounts on some pharmaceutical products are available to members.
Benefits Checkup
www.benefitscheckup.org
Designed for people over age 55, this online tool can be used to connect to government programs that can help pay for prescription drugs, health care, utilities, and other needs. The site contains information on more than 1300 programs from all fifty states.
Enbrel
Amgen-Wyeth Pharmaceuticals
888.436.2735
www.enbrel.com
HealthWell Foundation
www.healthwellfoundation.org
800.675.8416
The HealthWell Foundation is an independent, charitable organization that assists financially needy individuals in obtaining prescription medications. The Foundation provides financial assistance to eligible individuals to pay insurance premiums or copayments.
Medicare
www.medicare.gov
This site has an online tool for comparing the prices of various drugs available via discount cards at many different pharmacies.
The Free Medicine Program
www.freemedicinefoundation.com
573.996.3333
The mission of the Free Medicine Foundation is to help patients nationwide of ALL AGES obtain free prescription drugs. Those without prescription coverage, a low-income, or maxed-out prescription benefits are encouraged to apply. Lndividuals with Social Security Disability or SSI without prescription coverage, and those who make too much to qualify for public assistance such as Medicaid are also encouraged to apply.s
National Organization for Rare Diseases
NORD CPP Premium /Co-Payment Assistance Program?Conditions:?Chronic Plaque Psoriasis (CPP)?Contact:?1-800-634-7207
800.634.7207
www.rarediseases.org/programs/medication
NORD works with individuals with no health insurance or policies which do not reimburse prescription medications.
NeedyMeds Inc.
www.needymeds.com
This online database can help you search for patient assistance programs by drug brand name, generic name, or program name.
Partnership for Prescription Assistance
www.pparx.org
Its mission is to increase awareness of and enrollment in existing patient assistance programs for those who may be eligible. Through this site, the Partnership for Prescription Assistance offers a single point of access to more than 275 public and private patient assistance programs, including more than 150 programs offered by pharmaceutical companies.
Its mission is to increase awareness of patient assistance programs and boost enrollment of those who are eligible. Through this site, the Partnership for Prescription Assistance offers a single point of access to more than 475 public and private patient assistance programs, including more than 150 programs offered by pharmaceutical companies. To access the Partnership for Prescription Assistance by phone, you can call toll-free, 1-888-4PPA-NOW (1-888-477-2669).
Patient Services Inc.
www.uneedpsi.org
800.366.7741
Patient Services Incorporated (PSI) is a non-profit organization primarily dedicated to providing health insurance premium assistance, pharmacy co-payment assistance and co-payment waiver assistance for persons with specific expensive chronic illnesses.
Developed in 1989, PSI is a non-profit charitable organization, primarily dedicated to subsidizing the high cost of health insurance premiums and pharmacy co-payments for persons with specific chronic illnesses and rare disorders. Families requiring assistance in maintaining the high cost of their health insurance premiums or co-payments are offered assistance based upon the severity of medical and financial need.
Pharmaceutical and Research Manufacturers of America (PhRMA)
www.rxhope.com
908.850.8004
www.helpingpatients.org (NOW FORWARDED TO WWW.PPARX.ORG)
202.835.3400
On these Web sites, sponsored by PhRMA, you can search for information and application forms for company and state programs by company name, drug name or state. On rxhope.com you can apply online for certain programs.
www.rxhope.com
Search by medication, company name, or state. You can apply online for certain programs
No psoriasis medications
Together Rx
www.together-rx.com
800.865.7211
This card offers discounts on more the 150 commonly used drugs made by several companies.
Volunteers in Health
-appears to be for healthcare providers, not the patient. Pack of info looks useful for patients….those who cannot afford all or some of their prescription costs, those on medicare, disabled, 65+, veterans. Guide to statewide Drug Assistance Programs
www.rxassist.org/pdfs/pt_packet.pdf
Step
www.rxassist.org
877.844.8442
You can search online for programs by company name, drug brand name, generic name or drug class. The site also has an information packet for patients and information about state programs and drug discount cards.
Raptiva
Genentech Pharmaceuticals
877.727.8482
www.raptiva.com
Remicade
Centocor Pharmaceuticals
888.779.9769
www.remicade.com
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Wed, December 14, 2005 - 6:46 PMBtw, I realize these won't do you much good in getting phototherapy covered, but I know some people find tanning beds somewhat helpful even though they don't have quite the same spectrum of light as is given in true UVB phototherapy. -
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Wed, December 14, 2005 - 11:32 PMWow, thanks for all of that information. I have been going through some of the websites. I'm not sure if any of it would help but its ALWAYS worth a try. -
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Tue, November 28, 2006 - 4:37 PMHey there.
Yes P is rather depressing. I've had my outbreak for a year now and have only just come to terms with it this month. Joining this tribe will definitely help the emotional downside of psoriasis. I have to also recommend going to NPF at psoriasis.org. Loads of people are going through the same things that you are. Tribe and NPF will hopefully be able to answer medical questions as well as personal questions as they pertain to p and living with p in the public domain.
Anyway, since you don't have insurance I would recommend laying down some cash for tanning sessions at your local salons. Not all of them are the same price so shop around. Many of them also offer monthly packages and other deals that lower costs over the long run. I was tanning for a while and it made a huge difference but as soon as I stopped, the p would come back within a couple of weeks. Also, you do have to consider the damage that excessive tanning does to your skin (aging, skin cancer). Everyone's treatment is different and you will find what works for you and your budget very soon. My advice to you, have patience because psoriasis does not go away over night. Everyone is different. Some people have crooked teeth, some of us are short, and some of us are polka dotted. It's just a part of life.
What helped for me, emotionally, was to stop hiding my psoriasis and answer people honestly when they asked about my condition. They won't think its as weird or gross as they thought it was when they didn't know what it was. That was a silly sounding sentence but I think you understand what I am saying. Be proud. You're part of our club now and there's no need to be embarassed. Things could be a lot worse, right?
One last thing. Seriously look into dieting (not for weight loss, but for foods that irritate skin) as the most cost effective and long term treatment. I can send you a list I have of irritating foods that are thought to trigger flares of p. Message me on tribe if that is something you would be interested in.
Good luck and we are always here for you
Kelley
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