Psoriasis Doctor

Question:

>     I apologise for not timely reponding to your replys. I’m a city truck >driver, and these people don’t think we have homes!

Don’t worry about that, the newsgroup waits just fine! >    Anyway, at least I see a possiblity of some slight improvement, if…and >that’s a big if, I can find a substitute. Over the course of my life JR, >I’ve been in a multitude of universities and hospitals when I was young, (my >mother said I was wriiten about in a medical journal back then) and most >recently at Illinois University to try their new breakthrough, non-steroid >product, Kim, it was Tacrolimus, and that stuff caused me to violently break >out, in fact one of the worst times I ever had.

Well, that’s different, then. <g>  When I hear of heavy steroid use, I generally assume that’s the ONLY thing that has been tried.  That’s what one gets for assuming!   > I’ve tried all the different >coal tar products, Nudeskin, in fact used to sleep on trow away sheets to >rub, black as night, pure coal tar all over me at night. I take oatmeal >baths..no help.

Sounds like all the standard psoriasis treatments. >That’s when I discovered, Triamcinolon Ointment. In the beggining, your >right JR, it worked like a miracle drug,  (it’s amazing how diiferent life >is when your clear) but as time went by, not as effective. It does however >work better then anything else, still does. Although when I have real bad >times, had to also take prednizone tablets. I quit them about 6 months ago >completely (I’m told I’m lucky I did’nt die, stopping that abruptly) Doctor >always said don’t shower too often…WRONG…If it wasn’t for showers, I >could’nt get them "spiders crawling under my skin" to stop, and I would >litterally rip my self apart. I don’t know why..but my swimming pool >helps.(When I can get some privacy and time)  I’m thinking about putting >chlorine in the bathtub. LOL

On the steroids, sounds like you’re one that the work for, didn’t turn out to be the case for me. On the showers and all, whatever works.  I’m on a shower AM bath PM schedule, and it helps.  Have you tried table salt in the bath?  I do, about eight ounces or so.  NaCl – salt is half chlorine, for whatever that’s worth.  I suspect a lot of trouble we have with psoriasis is caused by secondary infections, and a good shower/bath can at least help limit those.  You know the famous painting of the character from the French Revolution, Marat, who had psoriasis, was taking a bath when he was assassinated?  Marat used diatomaceous earth, … >  I will try to let you all know if I discover >anything new. That Remicade sounds promising. And please let me know? For >instance, I was thinking of trying this "Skinzync" non-steroid spay >advertised on the radio..Anybody?

If you already have the contacts at the research hospital level, call and ask them about Remicade, also Enbrel, Amevive, any others they might be involved in.  I suppose it would have to be off-off label if you don’t have psoriasis – heck, what do I know, maybe they’re all doing trials for dermatitis, too. Regarding the SkinZinc, there are about twenty of those, and there’s an entire epic story about how they all started with something called SkinCap about five (?) years ago.  To make a long story short, SkinCap elicited many stories of outstanding effectiveness, but the manufacturer didn’t list any ingredients that could explain it, only the same pyrithione zinc in Head and Shoulders shampoo – the same as in SkinZinc (I assume, … !).  They said they had a secret, magic way to "activate" the molecule.  Crapola.  Turned out they were putting in random doses of prescription-level steroids without disclosing them. Well, they denied it, but the FDA banned them.  Then, all these zinc clones showed up, which do pretty much diddly on their own (but Head and Shoulders shampoo as a body wash works a little!), but with a prescription a pharmacy can mix into them your favorite steroid, and then … they still don’t seem to work the way SkinCap did, so maybe there were other secret ingredients, too. Well, was that a short story?  So, try it if you like, but everytime I hear the radio ads, I get a little steamed cuz, at the least, they are very misleading about the odds of success. J.

Response:

Hi John and Welcome, I’m glad you found this NG, even if it’s just for the support you’ll get here I feel these people can be a godsend in good and bad times. The only thing I can say that might make you feel better, is the thinning skin does get a bit better if you stop using the steroids. I destroyed my legs with steroids, and now just use udder cream and whipped vaseline and baby oil and such. Over the course of the last 2 years the skin has toughened up a bit, and does not tear or crack so easily as it once had. As for the "pussy like pimples" have you ever had a derm check to see if they fit the profile for pustular Psoriasis?  I have Pustular P and yours sounds like it could be that. I can really relate to the spiders crawling under the skin. I could also be way off base here as well, just a thought. I do hope this NG can help you. If you ever need a friend, we are here! Peace and Love Lorraine  

Response:

>Well here’s the thing, all I know much about is psoriasis.  If someone >with psoriasis told your story, I’d say the following: >* Officially, skin thinned by steroids is irreversible.

No, this is not true. Officially it is said to usually be temporary and reversible. http://www.bad.org.uk/patients/skin_disorders/atopic/steroid.htm http://www.medhelp.org/forums/dermatology/messages/30686a.html For a start. Although the strength and length of term using the steroid play into this as with anything else, and the original poster sounds like he’s been using heavy duty stuff for a while, which may mean bigger problems What you may be doing is confusing the fact that the striae or stretch marks that can also appear are more likely to be called irreversible or extremely tough to get rid of. >Of course, you >have to stop using the stuff!  

Which is the bottom line. I’m snipping the rest since it’s just another pot shot at doctors or has to do with psoriasis, which the original poster doesn’t have. Obviously stopping the steroids means replacing it with something else to get it under control. There’s a lot of good info at the NIH site, including some general info about doing this: http://www.niams.nih.gov/hi/topics/dermatitis/ Note that there’s a lot of talk there about secondary skin infections, which it seems possible are involved from some of the original poster’s comments. Tacrolimus or protopic is one of the newer non-steroid possible alternatives that is not listed there BTW There are some other resources for atopic dermatitis aka eczema and related stuff at the bottom of the skin page: http://www.pinch.com/skin Best of luck. It’s tough mentally to break from the only treatment you have faith in, but the odds are that the steroid is really doing more harm than good. As JR suggested, try to find a real specialist (not all derms have the same areas of expertise) and be open to trying a bunch of things that may work better and more safely together than you think they’ll do on their own. Kim The Psoriasis Newsgroup Resource FAQ can be found at               http://pfaq.cjb.net but will also be coming soon (twice a month) to a            newsgroup near you…

Response:

Hello, maybe you should try a product I buy in canada called DOAK OIL: coal tar distillate "Doak" in a blend of skin softeners and emollients). *** trademark Trans CanaDerm Inc, subsidiary of STIEFEL CANADA INC.*** The bottle says to apply the Doak Oil to a bathtub of water and use daily. it is for eczema, psoriasis, dry or itchy skin. I don’t know if this product is available outside of Canada. cost about $11 for a 250 ml bottle- no prescription needed but in some pharmacies- the bottle is behind the counter and I had to ask the pharmacist for it. If you try this product and it works for you- send me a message! http://www.vivacare.com is a Canadian online pharmacy and it doesn’t sell Doak Oil but you could ask them to sell it. PS> you might want to try Chinese herbal medecines. It taste bad and expensive but it works and it will have some affect on your skin. Or you should try Flax Seed Oil (Omega Oils)- it helped someone who had a condition similar to yours. comes in bottles of oil or capsules or powder form or use the seeds in your salad- etc. – Hide quoted text — Show quoted text ->I just found this site, wish I would have found years ago,  I don’t >have P, I guess? from what the doctors told me, I have ‘acute atopic >dermititis/eczema’

Response:

>>* Officially, skin thinned by steroids is irreversible. >No, this is not true. Officially it is said to usually be temporary >and reversible.

Well, if the consensus says that, it may be something of a change from fifteen years ago.  Fine by me — I’ve seen some reverse on me, thank goodness. J.

Response:

Hi All,      I apologise for not timely reponding to your replys. I’m a city truck driver, and these people don’t think we have homes!     Anyway, at least I see a possiblity of some slight improvement, if…and that’s a big if, I can find a substitute. Over the course of my life JR, I’ve been in a multitude of universities and hospitals when I was young, (my mother said I was wriiten about in a medical journal back then) and most recently at Illinois University to try their new breakthrough, non-steroid product, Kim, it was Tacrolimus, and that stuff caused me to violently break out, in fact one of the worst times I ever had. I’ve tried all the different coal tar products, Nudeskin, in fact used to sleep on trow away sheets to rub, black as night, pure coal tar all over me at night. I take oatmeal baths..no help. That’s when I discovered, Triamcinolon Ointment. In the beggining, your right JR, it worked like a miracle drug,  (it’s amazing how diiferent life is when your clear) but as time went by, not as effective. It does however work better then anything else, still does. Although when I have real bad times, had to also take prednizone tablets. I quit them about 6 months ago completely (I’m told I’m lucky I did’nt die, stopping that abruptly) Doctor always said don’t shower too often…WRONG…If it wasn’t for showers, I could’nt get them "spiders crawling under my skin" to stop, and I would litterally rip my self apart. I don’t know why..but my swimming pool helps.(When I can get some privacy and time)  I’m thinking about putting chlorine in the bathtub. LOL  I will try to let you all know if I discover anything new. That Remicade sounds promising. And please let me know? For instance, I was thinking of trying this "Skinzync" non-steroid spay advertised on the radio..Anybody?                                    Thanks, John P.S. I hope you don’t get made if I comment on something that might of already been addressed on this newsgroup, but have very little free time.

Response:

>the "elephant skin" comments. I found a way to get topical steroid oitments >over 20 years ago, which is the only thing that helped (not worked, but >helped) along with prdnizone. I went to doctors a bunch of times only to be >warned about this and told to "go home and "try this or that" The last one >said to go home and put "crisco shortnen "on and come back and see him in a >month(That will be $75.00..Pay the nurse on the way out…What a waste, I’ve >tried all of them>>Doctor’s Suck!)

Yes, they mostly do (in my experience, too).  But if you have a severe condition, you’ve got to keep trying to find one that’s half-way decent. > Anyway I got severe thining of the skin. >I’m told, it’s ireversable..true? I would love to quit using this steroid >ointment, but when I do, I get way too bad to go out in public. Sorry for >rambling,.never got to tell anybody this.

Well here’s the thing, all I know much about is psoriasis.  If someone with psoriasis told your story, I’d say the following: * Officially, skin thinned by steroids is irreversible.  However, it can get a little better, at least, over a year or two.  Of course, you have to stop using the stuff!  It seems to me that Dovonex, another kind of treatment for psoriasis, helps steroid-thinned skin to improve a bit. * There are lot of other treatments for psoriasis besides steroids, and some of the newer ones can be much better … also much more expensive, but there it is. * It’s a little surprising to hear of heavy use of steroids over many years, and the stuff still works.  The usual story is that it slowly loses effectiveness, until you start using more and more until you get steroid overdose problems with your entire metabolism.  When you stop, you want to taper off slowly, by the way, or you get a rebound worse than what you started with. * I tried Crisco, prefer Vaseline, if it comes to that. * With a story like yours, you’d probably want to find the largest university medical center within reach, find the dermatology department there, and go give them all something to talk about.  The next doctor down your block in some small town or suburb, it’s unlikely to find someone who can help. * I’m going to guess there are other treatments than steroids even if you have dermatitis/eczema, stuff that’s new just in the last three or four years. Hope any of that helps a little. J.

Response:

Hi Everyone,          I just found this site, wish I would have found years ago,  I don’t have P, I guess? from what the doctors told me, I have ‘acute atopic dermititis/eczema’ What ever I have, I’ve had it since birth.It effects my whole body, some places worst then others. Sometimes I feel like I got spiders crawling under my skin. Get violently inflamed..Get pussy little pimples (at times) constanly flaking  So dry I start cracking. Only time I’m moist is when in water, wish I could be a fish some time..LOL. I’m 48 now. My parents of course took me to all kinds of doctors when I was young. I guess, one of the doctors gave me heavy doses of  ’prednizone shots’ (I remember giving myself the shots at home) My mother told me that they then found out the risks, which included "stunting my growth". I say this though, at least I was clear.(I now have to put up with the short jokes as well as the "elephant skin" comments. I found a way to get topical steroid oitments over 20 years ago, which is the only thing that helped (not worked, but helped) along with prdnizone. I went to doctors a bunch of times only to be warned about this and told to "go home and "try this or that" The last one said to go home and put "crisco shortnen "on and come back and see him in a month(That will be $75.00..Pay the nurse on the way out…What a waste, I’ve tried all of them>>Doctor’s Suck!) Anyway I got severe thining of the skin. I’m told, it’s ireversable..true? I would love to quit using this steroid ointment, but when I do, I get way too bad to go out in public. Sorry for rambling,.never got to tell anybody this.                                     Thanks for listening, John

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