steroids, p and sunshine

Question:

> I’ve been using Temovate on and off for a looooong loooong time.  I know, I > know, I shouldn’t.   But everytime I get away from it it all comes bad real > bad, so I keep going back to it.  I have very think skin, and keep getting > bruises. > But now I’m trying to break away from it.  Have switched to Triamcenolene (sp?) > and goodby wearing shorts for a long time.

You might consider using UVB while weaning yourself from the steroids altogether.  Although your condition will return as you reduce your steroid exposure, the UVB will also be working to clear you at the same time.  If you respond well to UVB it can be a very effective transition regimen. > Does anyone know/has experienced if vitamin C in large doese would help the > thining/bruising?

I’m not aware of C helping with thin skin.  For many people C has a negative effect because it’s so acidic. Reversing the thinning seems to be a matter of time. Andy Kanter http://www.clearskin.com

Response:

As far as finding a doc, have you tried contacting NPF? When I was searching for another derm for a second opinion, I visited their website and asked for their information packet. I also asked if they had a referral/listing of derms who specialize in P. They do have a booklet listing doctors (in the US) that do specialize in P. It also lists the type of treatments they have available in their offices. Keep in mind, the NPF puts this out only as a referrence, not a recommendation of any of these doctors. You may not exactly find a doctor who likes to treat P but you’ll find one who does know this world. Unfortunately, I don’t know how to post links so maybe someone else can help. If not, there are plenty of other messages here that post the NPF’s website. Good luck to you. Peace, Amy Ann

– Hide quoted text — Show quoted text ->I’ve been using Temovate on and off for a looooong loooong time.  I know, I >know, I shouldn’t.   But everytime I get away from it it all comes bad real >bad, so I keep going back to it.  I have very think skin, and keep getting >bruises. >But now I’m trying to break away from it.  Have switched to Triamcenolene (sp?) >and goodby wearing shorts for a long time. >The only other thing that works as good is Dovonex, but I think it’s bad for PA >so they won’t prescibe it for me.  I need to go back to the derm, which I hate >because they never have any answers, and never listen to me.  I heard someone >here say to someone else "go to a derm who likes treating P".  Where do you >find a dr who finds P an "exciting challenge"? >Does anyone know/has experienced if vitamin C in large doese would help the >thining/bruising?

Response:

>Unfortunately, I don’t know how to post links so maybe someone >else can help. If not, there are plenty of other messages here that >post the NPF’s website.

For future reference, just type in the URLs for the pages you want to give us links to.  Some news readers are nice enough to turn anything that begins with "http://" into a real link automatically, but others force us to cut and paste.  So, the address of the NPF’s web site is http://www.psoriasis.org – Dave W.

Response:

Julie Matthews > Hey guys–  A couple questions for you all. > 1.  How do you know if you’ve experienced thinning of the skin from

steroids? > 3.  How much sun? How many hours? days?

I went to a derm once.  He had me get Temovate.  While he made it very definite that I was to use it for only 14 days, he didn’t tell me it was a steroid or explain what could happen.  I used it faithfully for 14 days and was so happy that everything appeared normal.  However, a few days later, I could see the results.  It thinned my skin that quickly.  You could see that it was thin.  It had a transparent look to it.  And it would ooze liquid.  That happened about the last of January a year ago.  I am still having problems in the same areas.  That is the insides of my feet just below the ankle bone.  As far as the sun, I live in Florida.  I would stay out for an hour.  But I have a dark (not black) complexion and do not burn. Topper

Response:

I’ve been using Temovate on and off for a looooong loooong time.  I know, I know, I shouldn’t.   But everytime I get away from it it all comes bad real bad, so I keep going back to it.  I have very think skin, and keep getting bruises.   But now I’m trying to break away from it.  Have switched to Triamcenolene (sp?) and goodby wearing shorts for a long time. The only other thing that works as good is Dovonex, but I think it’s bad for PA so they won’t prescibe it for me.  I need to go back to the derm, which I hate because they never have any answers, and never listen to me.  I heard someone here say to someone else "go to a derm who likes treating P".  Where do you find a dr who finds P an "exciting challenge"?     Does anyone know/has experienced if vitamin C in large doese would help the thining/bruising?

Response:

>1.  How do you know if you’ve experienced thinning of the skin from steroids?

It’s not subtle.  The skin looks like parchment.  It breaks and bleeds easily. >2.  How long does it take after sun exposure to get rid of the patches?

They are less active immediately.  Even if you were cured instantly, it would take some weeks for new skin to grow in clear.  The likely results are not that dramatic, of course. >3.  How much sun? How many hours? days?

Don’t burn.  As to the rest, it varies.  What you’re going to get, you probably get in the first few weeks.  After that, a smaller maintenance exposure may still help. >And also, I’ve just started a new job.  Have any of you experienced problems >with jobs and needing time off for doctor’s appointments?  Many people don’t >look at psoriasis as something as serious as cancer or diabetes, so might be >reluctant to give time off.  Any help would be greatly appreciated:-) >Julie

When I was doing UVB in the doctor’s office, I just did it on the way to work.  Luckily my derms all seem to keep earlier hours than my jobs, so the same worked for appointments. Of course, recently I haven’t been seeing derms.  I go once or twice a year for good luck, waiting for either new treatments or my condition to reach a point where I’m ready for the nastiness of mtx or neoral. Meanwhile I hang out here and look for hints and tricks — some of which have been extremely helpful. HTH. J.

Response:

Yes, I am in the Staes, but starting a new job.  But it’s for a big corporation, so…..Thanks for the tips! Julie>If you are in America, and work for a company with more than fifty employees, – Hide quoted text — Show quoted text ->your employer must grant "reasonable unpaid time off" for verifiable >illnesses >under the American Disability Act. Even though ps probably doesn’t meet the >standard for complete protection under this law (it is defined rather >narrowly >to "anything that limits major life activity-or something to that effect, but >I’ve been out of the business world for a couple of years) most employers >will >cover you if your doctor writes a note stating that treatment is necessary. >Check your company’s policy on this and talk to the HR department about it if >you have a problem. Good Luck!

Response:

>> 1.  How do you know if you’ve experienced thinning of the skin from >steroids?

I can tell by the way I bleed at the slightest provocation (a scratch, a bump against a table, etc.) > 2.  How long does it take after sun exposure to get rid of the patches?

For me the spots get more red at first, but thinner, with less scaling, and gradually the red turns to whitish spots, then they go away entirely.  Depends on the exposure, the flare, etc. but I would say at least a couple weeks to 3 months. > 3.  How much sun? How many hours? days?

For me, the most I can get without severe burning is best.  The most effective exposure is to *almost* burnt, and for me this means several hours per day in the strongest mid-day sun. > And also, I’ve just started a new job.  Have any of you experienced >problems > with jobs and needing time off for doctor’s appointments?  

I never let them know at work about any personal problems, never ask for time off, just work my life around them.  But then, I have that kind of job. Amy

Response:

Hey guys– Ive posted before about my scalp psoriasis.  A couple questions for you all. 1.  How do you know if you’ve experienced thinning of the skin from steroids? 2.  How long does it take after sun exposure to get rid of the patches? 3.  How much sun? How many hours? days? And also, I’ve just started a new job.  Have any of you experienced problems with jobs and needing time off for doctor’s appointments?  Many people don’t look at psoriasis as something as serious as cancer or diabetes, so might be reluctant to give time off.  Any help would be greatly appreciated:-) Julie

Response:

Because I am so embarrased by this condition I have used steroids on and off for many years.However at the age of 19 I have severe varicose veins and stretchmarks on my legs which are connected to the steroid use – Hide quoted text — Show quoted text – > Hey guys– > Ive posted before about my scalp psoriasis.  A couple questions for you all. > 1.  How do you know if you’ve experienced thinning of the skin from steroids? > 2.  How long does it take after sun exposure to get rid of the patches? > 3.  How much sun? How many hours? days? > And also, I’ve just started a new job.  Have any of you experienced problems > with jobs and needing time off for doctor’s appointments?  Many people don’t > look at psoriasis as something as serious as cancer or diabetes, so might be > reluctant to give time off.  Any help would be greatly appreciated:-) > Julie

Response:

>Have any of you experienced problems >with jobs and needing time off for doctor’s appointments?  Many people don’t >look at psoriasis as something as serious as cancer or diabetes, so might be >reluctant to give time off.  Any help would be greatly appreciated:-) >Julie

If you are in America, and work for a company with more than fifty employees, your employer must grant "reasonable unpaid time off" for verifiable illnesses under the American Disability Act. Even though ps probably doesn’t meet the standard for complete protection under this law (it is defined rather narrowly to "anything that limits major life activity-or something to that effect, but I’ve been out of the business world for a couple of years) most employers will cover you if your doctor writes a note stating that treatment is necessary. Check your company’s policy on this and talk to the HR department about it if you have a problem. Good Luck!

Response:

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