Success Story, a bit long
Question:
Just a quick note about narrow band and my exp. I have pustular P now,and have for 15 years. I also until 8 years ago had plaque P about 40% coverage. After 2 months or narrow band I was totally clear or Plaque, It never helped my Pustular though. My Dr suggested I keep with narrow band for maintenence only. I never went back due to my new job and miraculously never have had another plaque breakout other than a few dime size ones that go away after a few days of vaseline. I am Quite sure this is NOT typical at all. My Dr could not explain this and told there have been a few other patients who have had the same resuts. This is not to give anyone False hope at all, just thought it was an odd thing and felt like sharing it. I also feel that if it did well for me then maybe others might benefit. Again I am Quite sure these are NOT typical results. Peace and Love Lorraine
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i have had psoriasis since i was 13 on my hands very badly and i recently discovered a new cream called "cleariasis" over the counter developed by pharmacists which has cleared up my hands drastically.this cream was just developed this year..if you know anyone who may be interested in this product email me back and i will send you info straight from the pharmacist who told me about it…another good thing is that its only $18 no presc. needed ..alot cheaper than the other products..
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> Hey Sarah- > That’s not universally so about insurance companies paying less, (snip) > Definitely check about coverage for the narrow band if you’re > interested. I know when I did it at a phototherapy clinic, it was > different bulbs put into one of their standard unit rather than a > completely different machine, although I’m no expert on what the > requirements are. Another thought is that if you’re an NPF member, > they may be able to help you get this covered and/or get a cheaper, > second hand narrow band unit to keep the overall cost down.
I spoke with my Derm about possibly getting a used unit through NPF (yes I am a member). However, as he pointed out to me, if my insurance company is going to be paying for most of it I might as well get a new unit that I know is going to have new bulbs in it and is working well, along with whatever warranty it might have. My derm has suggested ‘The Jordan Light’, which is a unit that can be hung on the back of a door. It would be quite easy to find a place for such a unit. I haven’t gone through all the options yet, but the narrow band sure sounds more cost effective and more treatment effective. It’s definitely going to be the subject of my conversation with my derm on August 2nd. I definitely appreciate all the great info you’ve given me and do I ever appreciate this newsgroup with all your great knowledgeable folk in it. I have been wandering around the web for quite some time looking for information and getting lost and buried for so long until I came upon this newsgroup. Thank you again. —
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I should add a note of caution. Using any kind of tar medication makes you more susceptible to burn. I am fairly dark complected and this is not been an issue for me. Prior to starting narrow band my dr advised me to bath in Balnetar prior to each treatment. I am not sure if should would have made the same recommendation if I was light complected. Just a note of caution. Take it slow at first. Good Luck John By the way. Thank you Kim for that link. It was very helpful. Its that kind of help that has made this group an integral part of my Psoriasis struggle. – Hide quoted text — Show quoted text – > Great story wish I could tell one like that. I did find the home page for > Summer Lab http://www.sumlab.com/shop/home.asp > I think I will order some and give it a try. I use narrow band UVB at home > maybe the combo of the two will help me. > I also tried the sulpher and like you it seems to help but I think it was > the extra moisturizing that made it look like it was helping. > Thanks
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Great story wish I could tell one like that. I did find the home page for Summer Lab http://www.sumlab.com/shop/home.asp I think I will order some and give it a try. I use narrow band UVB at home maybe the combo of the two will help me. I also tried the sulpher and like you it seems to help but I think it was the extra moisturizing that made it look like it was helping. Thanks
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>Thanks so much Kim. Both of those sites have very good information, >which I will take with me to my next derm appointment…so I can ask >MORE questions. 
Although the narrow band UVB certainly sounds as if >it would be better to use in the long run, the fact that insurance >agencies don’t pay as much for it is a factor.
Hey Sarah- That’s not universally so about insurance companies paying less, although it may of course be so with yours. Mine covered it to the same extent as broadband when I used it and now that it is much more common than when I tried it I would expect this to be less of an issue. And another thing to factor into costing it is that narrow band appears to be more like PUVA than UVB in so far as it is usually more effective and generally leads to longer remissions. Therefore more cost effective in the longer run, even if upfront costs end up higher. The NZ derm assn site specifies the increased effectiveness and longer remission if you want to print that out too: http://www.dermnet.org.nz/dna.uvb/nbuvb.html > A broad band UVB light >unit is covered by my insurance company, although I have to get prior >authorization to purchase it, which we are awaiting now. Since I have >almost met my deductible already this year with the expense of meds and >derm visits, I will have to pay 20% of the cost of a unit, which is >enough, but at least I won’t be paying 100%.
Definitely check about coverage for the narrow band if you’re interested. I know when I did it at a phototherapy clinic, it was different bulbs put into one of their standard unit rather than a completely different machine, although I’m no expert on what the requirements are. Another thought is that if you’re an NPF member, they may be able to help you get this covered and/or get a cheaper, second hand narrow band unit to keep the overall cost down. 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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Happy to hear of your success, John… and thank you for the very factual and unbiased way you presented it. Sounds like you have a reasonable attitude about this whole thing and deserve a break from the usual skin stuff. Best regards,
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First, congrads to John -both in the good results and in his good sense approach to his P treatments. This has always seemed to me the right way to do things, given the lack of universal cure -be willing to try a mixture of different approaches both alternative and conventional that are not likely to do more harm than good and have some reasonable basis for you to think they might work. Then not give up completely just because the first one or two or dozen don’t work or don’t work as well as for others. >I do have a question regarding the narrow band UVB. My derm wants me to >get a home UVB light system. What is the major difference/advantage (if >any) between UVB and narrow band UVB? My derm has not suggested the >narrow band UVB only the regular UVB. After having a remission of about >a month, my spots have returned with a vengeance and I can no longer >wear short sleeve shirts or even think about shorts and man is it hot >here! Very depressing when it’s 102 outside and here I am in long pants >:( Never thought I’d be wishing for cold weather, but at least I can >cover up myself without looking like the odd man out.
Sarah- Narrow band is supposed to combine the best of PUVA and UVB without the cancer risk associated with the PUVA (although it’s only beginning to be in use for a long enough time that I think there is any valid basis for judging long term effect). There’s a comment from a derm to that effect at the AAD conference on the NPF site about half way down the following page: http://www.psoriasis.org/aad2001.htm It is UV light where the bulbs are restricted to the wavelengths that are believed to be most therapeutic, around 310-312 nm. Reports are that it generally is more effective for most people. However, it is reported and I know from personal experience that burns with narrow band tend to be deeper and longer lasting in effect than those with regular UV, so you need to be very careful with dosing. The following page may be more technical than you want, but does have some good info: http://www.nsc.gov.sg/bulletin/v9n2/a4.html 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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(snip) – Hide quoted text — Show quoted text -> Sarah- > Narrow band is supposed to combine the best of PUVA and UVB without > the cancer risk associated with the PUVA (although it’s only beginning > to be in use for a long enough time that I think there is any valid > basis for judging long term effect). There’s a comment from a derm to > that effect at the AAD conference on the NPF site about half way down > the following page: > http://www.psoriasis.org/aad2001.htm > It is UV light where the bulbs are restricted to the wavelengths that > are believed to be most therapeutic, around 310-312 nm. Reports are > that it generally is more effective for most people. However, it is > reported and I know from personal experience that burns with narrow > band tend to be deeper and longer lasting in effect than those with > regular UV, so you need to be very careful with dosing. The following > page may be more technical than you want, but does have some good > info: > http://www.nsc.gov.sg/bulletin/v9n2/a4.html
Thanks so much Kim. Both of those sites have very good information, which I will take with me to my next derm appointment…so I can ask MORE questions. Although the narrow band UVB certainly sounds as if it would be better to use in the long run, the fact that insurance agencies don’t pay as much for it is a factor. A broad band UVB light unit is covered by my insurance company, although I have to get prior authorization to purchase it, which we are awaiting now. Since I have almost met my deductible already this year with the expense of meds and derm visits, I will have to pay 20% of the cost of a unit, which is enough, but at least I won’t be paying 100%. —
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I have been lurking here for some time. I’ve given my opinion, when I thought it was appropriate, and I have learned much from the fellow P sufferers in this group. I have recently had much success with a regime and I thought I would pass it on. Some background. I have had psoriasis for a least 15 years, probably more. During that time I have tried almost every potion, concoction or ointment that there is. I have not, however, tried any systemic remedy as I was afraid of the health consequences. I have a high liver enzyme count and I like to baby my liver. I don’t drink and I have never tried methotrexate… I have tried Dovonex, every steroidal ointment and creme, up to and including temovate. I have tried Light box and laser UVB therapy. This year began with the coverage been as extensive as ever. I couldn’t sleep some nights, the itching, cracking and scaling were unbearable. I began to become very depressed. Early in the year I read on this group about psoriasis and the possible connection to gluten intolerance. I stopped eating all foods that contain gluten. It has been about four months now and I feel much better. I have lost weight and I don’t need to take nearly the amount of tums or prilosec to contain the acid reflux. That said however, it seemed to do little or nothing for my P condition. I will continue to eaten gluten free, however, because I feel better. I also read on this group the pros and cons of sulfur. I went down to my local pharmacy, prepared the concoction just the way Ben had said to (I think that was his name), and slathered on three times a day. I didn’t smell great but what the hell. I did receive some relief but I think that it was just the result of my skin being well moisturized. In short, it was no cure for me. Finally I read here some one talk about Cutar. I have always responded well to Exorex, but the stuff is just way too expensive, especially given the large area of P coverage. I have found Cutar to be Exorex’s equal (in fact I think that it smells much better) at a fraction of the price. 1 gallon set me back 99 dollars (I purchased it online from Summers Lab).The same amount of Exorex would cost you about $600. I recommend it to any one who does well with tar. It is the easiest to use. I smells ok and it dries quickly, allowing you to get your clothes back on and go about your day. I don’t think their is anything special about the tar itself other than its ease of use. But ease of use makes it a very simple regime to follow. With in a week many of the scales had disappeared and there were just red splotches left. A few weeks after starting Cutar I began a regime of Narrow Band UVB at my local hospital. I have tried UVB before, but never Narrow band. It, combined with Cutar, has been the most effective thing that I have tried thus far. I am now 95% clear. My skin is soft and smooth to the touch. Where at once I was disgusted to even look in the mirror I now check regularly to marvel at the progress. I have never had a remission before and I don’t think that this is one but if the psoriasis can stay at this level I can handle it till something better comes along. I now wear shorts and t shirts and I am even planning to go swimming with my wife in public for the first time in years!!! That’s my story, Cutar and narrow band UVB have made all the difference in the world for me. Lets just hope this lasts. John
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>That’s my story, Cutar and narrow band UVB have made all the difference >in the world for me. Lets just hope this lasts. >John
Hey John, Congratulations! Thanks for telling us about your success. Sorry that the gluten free diet didn’t clear you but it sounds like you got other worthwhile results. Hope it lasts forever! Ava
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> >That’s my story, Cutar and narrow band UVB have made all the difference >in the world for me. Lets just hope this lasts. >John > Hey John, > Congratulations! Thanks for telling us about your success. Sorry that the > gluten free diet didn’t clear you but it sounds like you got other worthwhile > results. > Hope it lasts forever! > Ava
I love reading the success stories people have. It sure gives me hope. Congratulations to you John! I do have a question regarding the narrow band UVB. My derm wants me to get a home UVB light system. What is the major difference/advantage (if any) between UVB and narrow band UVB? My derm has not suggested the narrow band UVB only the regular UVB. After having a remission of about a month, my spots have returned with a vengeance and I can no longer wear short sleeve shirts or even think about shorts and man is it hot here! Very depressing when it’s 102 outside and here I am in long pants 
Never thought I’d be wishing for cold weather, but at least I can cover up myself without looking like the odd man out. —
