Question:
Have you consulted a physician, since these latest symptoms began? Yes, however I have never had a positive meeting with an HMO derm yet. I understand completely. It’s just that I thought your symptoms might indicate some need for antibiotics, which even the usual dufus derm might recognize. J.
thank you, I’ll check it out. Also, for anyone else looking at alternatives to corts & nizoral et al, I was told clat’s claw 1000 mg. I just started yesterday referred by a chemist who worked for many of the top cosmetic co’s. I have some research I’ll get to, but he says the claw is a very good antiphylor (spell?) (anti yeast) antibactorial & anti-inflamation. take care, paul
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asked what time my appointment was. I told her, and she commented that hers was for the exact same time, with the same doctor. Then a woman across the room said that she, too, had an appointment with him at that time. A little later, one of the women said that when she fimally got him into the examining room, she was going to stand with her back to the door until he answered some of her many questions. — Charlie in San Francisco
When I was still working and had a very, very busy schedule I was referred to a Rheumatologist that was well known and well respected in my area. However, he never met his appointment times. Not once. Most of the time he was an hour or more behind schedule. On my side I often missed appointments because a problem in a field office would necessitate my taking a plane out immediately or some other priority would interfere. When I missed appointments without giving 24 hours notice, this same physician charged fifty dollars! I paid the money because I did miss some appointments and did not give sufficient notice. I often gave up on waiting and left to return to work when he kept me waiting. I decided that turnabout was fair play. When he was more than thirty minutes late for a scheduled appointment with me, I would deduct the amount of my salary for the time I had waited over the scheduled appointment. I made a very good salary so it was a considerable amount. The billing people went nuts on me, of course. I told them to see the doctor about it. As it turned out, he accepted this as a reasonable process and agreed to reduce his bill accordingly. Of course that wasn’t the point. I had to find a new doctor who stuck with his schedule so I didn’t have to waste my time waiting. Anyway, you folks having trouble with rude physicians that think their time is more valuable than yours might want to consider this response next time you are kept waiting. Ava
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Have you consulted a physician, since these latest symptoms began? J.
Yes, however I have never had a positive meeting with an HMO derm yet. We’re talking many visits over many years. They get you in, then it’s what do you want me to do? You know it’s chronic, no new treatments since the last we visited, just use your corts. You want a different cort? I can do that. The only good derm I’ve seen was a private, but insurance won’t pay. 5 minutes (never more as this is their limit) for a useless visit or internet where I can actually get some and share useful information, paul
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Have you consulted a physician, since these latest symptoms began? Yes, however I have never had a positive meeting with an HMO derm yet.
I understand completely. It’s just that I thought your symptoms might indicate some need for antibiotics, which even the usual dufus derm might recognize. J.
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After waiting for close to an hour in a derm’s waiting room, the woman next to me asked what time my appointment was. I told her, and she commented that hers was for the exact same time, with the same doctor. Then a woman across the room said that she, too, had an appointment with him at that time. A little later, one of the women said that when she fimally got him into the examining room, she was going to stand with her back to the door until he answered some of her many questions. — Charlie in San Francisco – Hide quoted text — Show quoted text – Have you consulted a physician, since these latest symptoms began? J. Yes, however I have never had a positive meeting with an HMO derm yet. We’re talking many visits over many years. They get you in, then it’s what do you want me to do? You know it’s chronic, no new treatments since the last we visited, just use your corts. You want a different cort? I can do that. The only good derm I’ve seen was a private, but insurance won’t pay. 5 minutes (never more as this is their limit) for a useless visit or internet where I can actually get some and share useful information, paul
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Thanks to all of you who responded-
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Thanks Kim, I emailed him. He has very good advice, and indeed has been through many of the same trials and tribulations, amazing 
Very good advice not to use the steroids, chemicals, or chemical cleansers. Anything I’m dealing with now would be much worse having Not Weened myself from this stuff. paul w
Response:
I am not a psoriasis sufferer, but my brother-in-law is and he is part of the long-term safety trial with Xamelin-he is very "freaked out" by his being informed recently about a whole bunch of serious side effects with the drug when used for prolonged periods of time: cancers, infections and other things– To stay in the trial, he has been asked to sign a release on what seems like numerous occasions–do any of you know anything about this?
I think Kim covered it pretty well. From the reports I’ve seen, the trials of Xanelim so far have been very positive, including far fewer side-effects than Neoral. BUT, that’s only during short-term tests. Nobody yet knows whether Xanelim will cause problems if used long-term. But since Xanelim is like Neoral in that both are some sort of immune suppressants, the odds are that IF Xanelim causes some side-effects, they would be of the immune-suppresent sort that Neoral does cause — and those are the ones listed in the release, apparently. Now, Xanelim is much more targeted than Neoral, so there’s a reasonable possibility, afaik, that it should still be a whole lot safer than Neoral, as the body has several parallel immune mechanisms, and Xanelim is supposed to leave all the others intact. The one thing I have read about Xanelim is that, as soon as you stop taking it, psoriasis returns. That’s *almost* a good thing, in that it means your immune system comes right back online, so if you do get an infection or even cancer, maybe just stopping the drug would help you recover normally. That’s what these trials are all about. It’s all really interesting, and booooooy am I ready for some positive news on these drugs fronts. Joshua Stern
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– Hide quoted text — Show quoted text -Kim, hope this isn’t too redundant or off base, and it is also re seb derm, but I’ll ask anyway. You seem very knowledgeable. I have severe chronic seb derm covering temples, cheeks, forehead, scalp and it’s the intense redness and secondary infections that kill me. Brief background: I am a red head, and have been in the sun my entire life having played golf & baseball in highschool and college. I would use alcohol based sunscreens, had pretty severe acne at times, and very oily skin… I also used acutane for a short spell and burned quite bad during this time, so I stopped ( I did have good results). Anyway the sunscreen would burn me, the sun would burn me, then I would use various soaps to get it off & that would burn me for years. I finally decided to stop everything, no washing at all, just take showers and let the water run down my face. After months of intense caking (oil)and breakouts (clogged pores), the scaling came on and every since I have had oily scaling (thick layers) and redness with sometimes a yellowish crusting. I use corticosteroid creams when the redness and thickness gets really bad, but only then. My skin looks and feels like a large wound, with a scab that never leaves. The underneath (of face- entire butterfly pattern) is pink and moist with no top layer protection. Do you think that because of the intense burning from the sun, sun with the accutane, years of alcohol based sunscreens (and chemical reactions to that), abrasive soaps have caused this injury (burn), and now the seb derm/psoriatic condition? Also, do to my obvious overactive hormones, would there be anyway to control that (oil production, surgery, oral)? Thanks a million!
Paul, I wish I could really help. But the problem is that if I am knowledgeable, it’s about psoriasis not seb derm. And they are very different things, even if they both appear on the skin. There’s a guy that’s been posting here periodically with some similar history involving acne and acne treatments plus heavy duty soaps seeming to cause/aggrevate his seb derm. If you look at the following link for general skin group posts about seb derm, make sure to check out the posts by William Gray, the guy I’ve seen posting with some similarities in history. Especially as he has been reporting some success of late with things he’s tried. http://pinch.com/skinny?skin=seborrheic+dermatitis Certainly it seems feasible that some of the harsher stuff used on your face might have played a role -especially after stuff William Gray has said about the same sort of cause and effect- but I just don’t know enough to make even an educated guess how much. Another place you might turn for some better expertise is some of the eczema links on EdAs Skin page, since seb derm is categorized with eczema more than psoriasis. Click on http://www.pinch.com/skin and go to the bottom of the page where you’ll see eczema links. Sorry, wish I could help 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…
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Have you consulted a physician, since these latest symptoms began? J.
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- Hide quoted text — Show quoted text – I am not a psoriasis sufferer, but my brother-in-law is and he is part of the long-term safety trial with Xamelin-he is very "freaked out" by his being informed recently about a whole bunch of serious side effects with the drug when used for prolonged periods of time: cancers, infections and other things– To stay in the trial, he has been asked to sign a release on what seems like numerous occasions–do any of you know anything about this? Well the release part is fairly standard and the drug is an immunosuppressant, so the possibility of side effects involving things like infetions exists. The point with this generation of immunosuppresants is to minimize that by making them targeted at only certain cells/cell parts vs the old general immunosuppresants. Nothing I could troll up on a quick search that set of alarm bells about Xoma My first thought was to wonder what the source was for the serious side effects report and how credible it was. Then to wonder exactly what they said/what the real report was. Was it a matter of increases risk of certain things or actual given side effects. BIG difference. Also, how were they defining prolonged use -i.e. continual or used at intervals over a long time. That too makes a considerable difference. In other words exactly who is saying exactly what on exactly what basis. Um, not trying to belittle your brother in law’s concerns or anything. Kim
Kim, hope this isn’t too redundant or off base, and it is also re seb derm, but I’ll ask anyway. You seem very knowledgeable. I have severe chronic seb derm covering temples, cheeks, forehead, scalp and it’s the intense redness and secondary infections that kill me. Brief background: I am a red head, and have been in the sun my entire life having played golf & baseball in highschool and college. I would use alcohol based sunscreens, had pretty severe acne at times, and very oily skin… I also used acutane for a short spell and burned quite bad during this time, so I stopped ( I did have good results). Anyway the sunscreen would burn me, the sun would burn me, then I would use various soaps to get it off & that would burn me for years. I finally decided to stop everything, no washing at all, just take showers and let the water run down my face. After months of intense caking (oil)and breakouts (clogged pores), the scaling came on and every since I have had oily scaling (thick layers) and redness with sometimes a yellowish crusting. I use corticosteroid creams when the redness and thickness gets really bad, but only then. My skin looks and feels like a large wound, with a scab that never leaves. The underneath (of face- entire butterfly pattern) is pink and moist with no top layer protection. Do you think that because of the intense burning from the sun, sun with the accutane, years of alcohol based sunscreens (and chemical reactions to that), abrasive soaps have caused this injury (burn), and now the seb derm/psoriatic condition? Also, do to my obvious overactive hormones, would there be anyway to control that (oil production, surgery, oral)? Thanks a million! paul w
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Amevive showed good results and an excellent duration of response when given intravenously. But, there were concerns about toxicity and the fact that clinical benefit was achieved at the expense of a significant decline in memory T cells. The effects on T cells were only slowly reversible. This is potentially dangerous, as T cell depletion could lead to a risk of infection.
Again, I wonder if this is a good thing or a bad thing. If all of our memory T-cells are busy fighting psoriasis already, maybe they’re good for nothing anyway????? I’m guessing nobody is real clear on this stuff. Come back in twenty years for the answer, … J.
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And another from the business and investor’s point of view, repeating info from the Xoma press release: http://clickit.go2net.com/adclick?cid=173495&area=results.lycos&site=… ickurl=http%3A//click.hotbot.com/director.asp%3Fid%3D8%26target%3Dhttp%3A/ /www.prohostonline.com/_disc4/00000169.htm%26query%3D%252Befalizumab%2… urce%3DLCOSWFW (wow, that’s a long one… may have to copy & paste to get it to work)
You might find that http://www.prohostonline.com/_disc4/00000169.htm works better. – Dave W. http://members.aol.com/psorsite/
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I am not a psoriasis sufferer, but my brother-in-law is and he is part of the long-term safety trial with Xamelin-he is very "freaked out" by his being informed recently about a whole bunch of serious side effects with the drug when used for prolonged periods of time: cancers, infections and other things– To stay in the trial, he has been asked to sign a release on what seems like numerous occasions–do any of you know anything about this? Sarah (Seattle, WA)
Response:
I am not a psoriasis sufferer, but my brother-in-law is and he is part of the long-term safety trial with Xamelin-he is very "freaked out" by his being informed recently about a whole bunch of serious side effects with the drug when used for prolonged periods of time: cancers, infections and other things– To stay in the trial, he has been asked to sign a release on what seems like numerous occasions–do any of you know anything about this? Sarah (Seattle, WA)
interesting how the xoma web site tells of low side effects. Anything we use will of course be longterm and thus here come the sever side effects.
Response:
I am not a psoriasis sufferer, but my brother-in-law is and he is part of the long-term safety trial with Xamelin-he is very "freaked out" by his being informed recently about a whole bunch of serious side effects with the drug when used for prolonged periods of time: cancers, infections and other things– To stay in the trial, he has been asked to sign a release on what seems like numerous occasions–do any of you know anything about this?
Well the release part is fairly standard and the drug is an immunosuppressant, so the possibility of side effects involving things like infetions exists. The point with this generation of immunosuppresants is to minimize that by making them targeted at only certain cells/cell parts vs the old general immunosuppresants. Nothing I could troll up on a quick search that set of alarm bells about Xoma My first thought was to wonder what the source was for the serious side effects report and how credible it was. Then to wonder exactly what they said/what the real report was. Was it a matter of increases risk of certain things or actual given side effects. BIG difference. Also, how were they defining prolonged use -i.e. continual or used at intervals over a long time. That too makes a considerable difference. In other words exactly who is saying exactly what on exactly what basis. Um, not trying to belittle your brother in law’s concerns or anything. 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…
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- Hide quoted text — Show quoted text – I am looking forward to this being approved and everyone having these kind of results…..they have gave it a trademark name, but i dont know what it is …… http://biz.yahoo.com/bw/010305/2165.html Xanelim(TM) (efalizumab) Maybe they spelled it backwards? (bamuzilafe)(MT)Milenax I guess the name "rumplestilskin" was already taken. J.
LOL, J. All the med’s that end in "mab" are biologics and the "mab" part is for monoclonal antibody. The two biggies on the market now are Enbrel (etanercept) and Remicade (infliximab). Yeah, I know, Enbrel’s generic name doesn’t end in "mab". :) There are many, many new biologic med’s in development right now that promise lots of progress in the treatment of many diseases, including many forms of cancer. It is exciting to be witnessing these new advances actually coming to market. Best regards,
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Here is a nice report on this new monoclonal antibody med from Xoma: http://allergies.about.com/gi/dynamic/offsite.htm?site=http://www.aaa… g/media/pressreleases/2001/03/010319.html (from March 19, 2001 meeting of Amer Academy of Allergy, Asthma * Immunology) And a press release from the manufacturer: http://www.xoma.com/news/pressrel/01_04_04.html This is an interesting one, a review of the prominant treatments now under trial for psoriasis and related conditions from a business point of view. http://www.ims-global.com/insight/news_story/0103/news_story_010330.htm Another press release from Xoma during the Amer Assoc of Dermatology conference: http://www.xoma.com/news/pressrel/01_03_05.html And another from the business and investor’s point of view, repeating info from the Xoma press release: http://clickit.go2net.com/adclick?cid=173495&area=results.lycos&site=… ickurl=http%3A//click.hotbot.com/director.asp%3Fid%3D8%26target%3Dhttp%3A/ /www.prohostonline.com/_disc4/00000169.htm%26query%3D%252Befalizumab%2… urce%3DLCOSWFW (wow, that’s a long one… may have to copy & paste to get it to work) Next, from Genentech’s website, who is jointly developing this with Xoma: http://www.genentech.com/gene/science/research/mab/pipeline.html Best regards,
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This is an interesting one, a review of the prominant treatments now under trial for psoriasis and related conditions from a business point of view. http://www.ims-global.com/insight/news_story/0103/news_story_010330.htm
Both are now in Phase III. Based on Phase II data presented at the AAD meeting, Xanelim administered subcutaneously is well-tolerated, effective and reasonably safe. However, psoriasis recurred in a matter of weeks once treatment was interrupted, so chronic administration is required. Amevive showed good results and an excellent duration of response when given intravenously. But, there were concerns about toxicity and the fact that clinical benefit was achieved at the expense of a significant decline in memory T cells. The effects on T cells were only slowly reversible. This is potentially dangerous, as T cell depletion could lead to a risk of infection. Dang. Dang. Dang. Dang. Dang. Dang. Dang. Well, re Amevive, we’ll have to see what "slowly" means. Another bleeding-edge technology out there was killing off ALL b-cells, "rebooting" that part of the immune system. But, they came right back. — From the above, it doesn’t sound like either is going to be approved for general use in the immediate future. I wonder if Remicade will pull ahead of Neoral as first choice for heavy drugs. J.
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- Hide quoted text — Show quoted text – hello everyone, i received my 6th injection today, and my PASI score was a 4.6, it started out at 17.5. The derm also gave my face, neck, and scalp a BIG FAT ZERO!!!!! I am looking forward to this being approved and everyone having these kind of results…..they have gave it a trademark name, but i dont know what it is …… take care, debi Great news and when will it be approved by the f d a is it far away ????
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Glad to hear it’s working for you. Wish I’d used a couple of steroids, but it wasn’t allowed in the study. The idea of a maintenance dose is also new. I have battled my back to a semblance of control after the rebound from the end of the study. I plan to post the final "after" picture on the web site I built, as soon as we finish the roll of film in the camera. — Jim Hargrove Austin, TX
– Hide quoted text — Show quoted text – hello, yes there were in the other studies, but the one i am in is the FIRST to have a maintence period and dose…. plus in 3 weeks i begin using a very before and after pictures…. the results really are amazing…… God has also played His part in this also, would not think of not giving credit where credit is due!!! take care, debi hello everyone, i received my 6th injection today, and my PASI score was a 4.6, it started out at 17.5. The derm also gave my face, neck, and scalp a BIG FAT ZERO!!!!! I am looking forward to this being approved and everyone having these kind of results…..they have gave it a trademark name, but i dont know what it is …… Wow! Not to be a spoilsport … but weren’t there reports of rebound when the stuff was stopped? Yeah, who cares, I’m about ready for some in any case. J.
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hello everyone, i received my 6th injection today, and my PASI score was a 4.6, it started out at 17.5. The derm also gave my face, neck, and scalp a BIG FAT ZERO!!!!! I am looking forward to this being approved and everyone having these kind of results…..they have gave it a trademark name, but i dont know what it is ……
Wow! Not to be a spoilsport … but weren’t there reports of rebound when the stuff was stopped? Yeah, who cares, I’m about ready for some in any case. J.
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I am looking forward to this being approved and everyone having these kind of results…..they have gave it a trademark name, but i dont know what it is ……
http://biz.yahoo.com/bw/010305/2165.html Xanelim(TM) (efalizumab) Maybe they spelled it backwards? (bamuzilafe)(MT)Milenax I guess the name "rumplestilskin" was already taken. J.
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hello, yes there were in the other studies, but the one i am in is the FIRST to have a maintence period and dose…. plus in 3 weeks i begin using a very before and after pictures…. the results really are amazing…… God has also played His part in this also, would not think of not giving credit where credit is due!!! take care, debi
– Hide quoted text — Show quoted text – hello everyone, i received my 6th injection today, and my PASI score was a 4.6, it started out at 17.5. The derm also gave my face, neck, and scalp a BIG FAT ZERO!!!!! I am looking forward to this being approved and everyone having these kind of results…..they have gave it a trademark name, but i dont know what it is …… Wow! Not to be a spoilsport … but weren’t there reports of rebound when the stuff was stopped? Yeah, who cares, I’m about ready for some in any case. J.
Response:
hello everyone, i received my 6th injection today, and my PASI score was a 4.6, it started out at 17.5. The derm also gave my face, neck, and scalp a BIG FAT ZERO!!!!! I am looking forward to this being approved and everyone having these kind of results…..they have gave it a trademark name, but i dont know what it is …… take care, debi
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