一段很有用的白白权威专家的问答

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来源 和 版权所有 www.vitiligosupport.com

下面是一篇很有用的白白方面的权威专家的一段问答，供大家参考

Dr. Grimes Chat

CHAT TRANSCRIPT FROM
OUR CHAT WITH DR. PEARL GRIMES
September 7, 2000


Note from Randy: As many of you know, I had to re-create this chat by hand from a screen capture (thanks to user Atmal!) due to some technical difficulties (I know many of you have waited patiently for 10 days!). To save time, this transcript features only the questions asked during our chat, both by me (chosen from those submitted in advance) and those asked by users in the room, and of course Dr. Grimes' answers. Much of the social banter that we are all used to has been edited out. So without further delay, here is the transcript of our informative chat with Dr. Pearl Grimes:


Randy: I'd like to thank everyone for joining us this evening. Most of you know Jon Mortensen, who will be helping run the chat this evening. Let's go ahead and get started.

Randy: Pearl E. Grimes, M.D., is one of the foremost vitiligo experts in the world. Dr. Grimes is internationally recognized for her work on vitiligo and pigmentary disorders. She is an associate clinical professor of dermatology at UCLA, and has been recognized repeatedly as one of the top dermatologists in America. She has published extensively, and travels all over the world to present her findings at dermatology conventions and meetings.

Randy: Dr. Grimes has practiced dermatology for the past 21 years. For 15 of those years, she was in full time teaching and research. Three years ago she made the transition to the private sector, and now is the Director of the Southern California Vitiligo and Pigmentation Institute. She continues to be actively involved in pigmentation research, and receives patients from all over the world.

Randy: Welcome Dr. Grimes.

Dr_Grimes: Thank you, Randy.

Randy: We're going to start this evening by asking some of the questions that were posted in the Ask Dr. Grimes Message Board, and then we'll open it up to some questions from the people here. The questions I have chosen are the most general, and those which I feel addressed some of the most important issues and which applied to the greatest number of people. Dr. Grimes will indicate she is done with her answer by saying "done." Also I want to make clear that we have a volunteer high speed typist typing for Dr. Grimes, so that she can concentrate on answering. So any spelling errors are not Dr. Grimes' - just a limitation of the evening. So here we go...

Randy: Dr. Grimes, How do you feel about this practice? Has there ever been any cases in which the vitiligo has completely been cured, according to your knowledge?

Dr_Grimes: I have been practicing medicine for 25 years...vitiligo is a major commitment to me. I have a real passion and emotional commitment to it.

Dr_Grimes: I don't consider vitiligo to be a disease I can cure in general, however, over the years, I have seen many people with less than 40% vitiligo involvement repigmented completely and controlled for MANY years.

Dr_Grimes: Everyone may have some waxing and waning, but that can be treated.

Dr_Grimes: This is a TREATABLE condition...the myth that vitiligo is not treatable is ridiculous.

Dr_Grimes: Done.

Randy: ok...next question

Randy: Tell us your opinion about Pseudocatalase.

Dr_Grimes: Well, I have been using Pseudocatalase in the practice for the last year. We have over 200 patients on Pcat.

Dr_Grimes: When Pseudocatalase is used WITHOUT light treatment, I have seen no response, but when used with a combination of UV or sunlight, it works reasonably well for many people.

Dr_Grimes: Now, is this a panacea? A silver bullet? Is it superior to other modalities? No - I don't think so. But it is an important ingredient in many people's healing. It is extremely well-tolerated as well as demonstrates little if any allergic reaction.

Randy: So everyone knows, we will open this discussion up to questions from the audience shortly.

Dr_Grimes: Just so it's clear, we don't have an "it" yet as far as treating vitiligo. Most important in treating vitiligo is to try many therapies and rotate modalities until you find what works...or even a combination. And of course consistency -- vitiligo treatment can take up to a year or longer, and patients should expect to treat at least that long.

Dr_Grimes: Done.

Randy: Next question. Does using Dy-O-Derm, or other sunless tanning lotions interfere with Pseudocatalase and/or Oxsoralen/cetaphil along with sunshine or other light treatments?

Dr_Grimes: Yes. Over the years we have found that people using stains do not do as well as those no using stains...and I am talking about Dihydroxy Acetones. Dermablend and other wash-off type covers would be preferred for someone who is treating.

Dr_Grimes: Done.

Randyk...one of our users posted this: "I have just begun to use Pseudocatalase and would like to know what to expect for vitiligo spots that are 35 years old or older."

Dr_Grimes: Point number one: when we look in our database for correlation between duration of vitiligo and ability to repigment, we have found absolutely NO CORRELATION between age of a particular spot of vitiligo and ability to repigment.

Dr_Grimes: We have treated people for vitiligo who have had it for 40 years or more, and when treating them aggressively, they repigment.

Dr_Grimes: As I mentioned before, what is most important is consistency...if you are treating for vitiligo, you need to expect to treat for up to a year or MORE. And just because you fail at PUVA or Pseudocatalase does not mean for example that UVB will not work for you. Likewise, I don't want people to abandon PUVA for Narrow Band UVB just because it is new. Narrow Band UVB works for many people...but regardless, you need to be prepared for the long haul - unless you have a few little spots, which can be fixed really fast...especially in children...but unless you have very limited involvement, you need to expect a long term treatment.

Dr_Grimes: Done.

Randy: ok...next question. Is Elocon steroid cream (and similar products containing steroids) dangerous over time?

Dr_Grimes: I am a firm believer in the high potency to mid-potency steroid for repigmentation of localized vitiligo...small areas in other words. However, if doctors are prescribing this cream, they need to monitor their patients every 3 or 4 weeks...because you need to be monitored for steroid side effects such as thinning of the skin, blood vessel formation, steroid induced acne, etc.

Dr_Grimes: It is crucial to monitor these patients carefully. If I don't see a response to Elocon and similar creams in 3 or 4 months, I take them off it. Or I change modalities -- try something else and then go back.

Dr_Grimes: Done.

Randy: Dr. Grimes, what can you tell us about the rate of skin cancer on vitiligo patches as relates to sun exposure and also UV Lights. Is Narrow Band UVB really safer? As opposed to say, PUVA?

Dr_Grimes: Let's talk about UV light in general. Actually let's talk about vitiligo first. Since vitiligo patients have lost their pigment, you would THINK that they had a higher risk for skin cancer.

Dr_Grimes: But the fact is, our data show NO increase in skin cancer in vitiligo patients. And I am talking WITHOUT any UV light treatments. And I am talking both within the vitiligo patches, or the normal skin...either way.

Dr_Grimes: Additionally, is PUVA or UVB associated with an increase in skin cancer in areas of vitiligo? The answer is no.

Dr_Grimes: In psoriasis literature and articles, we DO see an increase in skin cancer for those treating with UV light....but this is NOT the case for vitiligo patients.

Randy: Why do you think that is, Dr. Grimes?

Dr_Grimes: I think it is both the WAY they are treated, and also something in the property of vitiligo patches that creates a protection -- I am just not sure what that is yet. IN the case of Narrow Band UVB itself, many suggest that UVB is less carcinogenic. I am fairly sure that is the case, but we need to see a LOT more data first...UVB is MUCH newer. But it appears that it is safer as far as skin cancer...in psoriasis patients especially.

Dr_Grimes: Done.

Randy: Next question: What do YOU believe to be the root cause of vitiligo?

Dr_Grimes: Well, I view vitiligo as a heterogeneous condition....there are multiple causes and pathways that can cause the destruction of melanocytes (pigment cells).

Dr_Grimes: For MOST patients, perhaps as high as 50 or 60%, it IS auto-immune based. You can inherit the tendency or susceptibility...just like other auto-immune disorders.

Dr_Grimes: But there are also environmental triggers. I think that this clearly is a cause for SOME people. Exposure to certain environmental chemicals can cause vitiligo...drugs can induce vitiligo...such as a response to penicillin and other drug reactions.

Dr_Grimes: Done.

Randy: Dr. Grimes, what other new technologies/methods/techniques/drugs are on the horizon for vitiligo patients that you are aware of, outside of what we currently are seeing used?

Dr_Grimes: Well, let's talk about this. The cause of vitiligo is important here. One area I am hopeful for in the next 6 months to 2 years is more immuno-modulator drugs, that actually down regulate an immune response. I think immuno-modulators, either alone or with other therapies will play a big part in helping people. So in combination.

Randy: In other words these drugs would modulate the immune system response, so that it would not have a chance to see the pigment cells as a foreign body or the strength to attack them even if they did?

Dr_Grimes: That's basically correct.

Randy: What about genetic therapy and research?

Dr_Grimes: Honestly, I think there is a major project being looked into right now...but do I view this as a disease with a "cure" or a "gene" that causes it? No. I think gene therapy may only work for a small percentage of patients -- vitiligo is not just "one cause" or "one disease."

Dr_Grimes: Done.

Randy: Dr. Grimes, some of the users in our Message Board wanted to know about hair coloring, bleaches, and the dangers of using them.

Dr_Grimes: If you have pigment loss, I recommend staying away from hair colorings and bleaches. Use TEMPORARY colorings...nothing permanent. Some people are VERY susceptible to these products, because they are Phenol derivatives...which can cause or exacerbate vitiligo.

Randy: OK...let's take a few questions from the audience...go ahead and type a question mark if you have a questions. We don't have a whole lot of time but let's take a few.

Randy: Jon, who is first?

mortensen_jon: no question marks yet; answer carmella's.

Carmella: Does Aspirin help or hurt and is the dosage a factor?

Dr_Grimes: The aspirin story...heheh. The article which discussed aspirin as a treatment was written in the late 1970's. It was never actually published. I have not tried it, so I have no personal data...nor have I seen published data. I can't say it does or doesn't work. There are MANY other therapies where we know where we are. Aspirin would not be my first, second, third or fourth choice as a repigmenting or stabilizing agent.

mortensen_jon: Storm is next.

Storm: ok. You mentioned the environmental triggers, but people from all over the world have vitiligo, so where is it safe?

Dr_Grimes: You know, when we talk about environmental triggers and chemicals, I don't mean pollution or exhaust. I mean cleaning industry workers, heavy industrial workers...other industries such as photography, dark room chemicals and things like that...we do not see a correlation between just smoggy air and vitiligo.

Randy: I'd also like you to address the nutritional questions many people have asked about, including vitamins.

Dr_Grimes: I am a MAJOR advocate of vitamins. I don't think vitamins CURE vitiligo, but they are an adjunct therapy...they help me stabilize an unstable immune response in patients, and can be a valuable tool.

Dr_Grimes: Done.

mortensen_jon: Fontenot is next.

FONTENOT: How would you compare sunlight, UVA, narrow band UVB and broad band UVB? Doesn't broad band contain narrow band frequencies?

Dr_Grimes: ok...that's a bit of a loaded question...heheh. I like sunlight used with low concentrations of psoralen...for patients with LIMITED (less than 10%) involvement. But for patients with greater degrees of vitiligo involvement, we need to try all modalities to see what works. People are different; the causes of their vitiligo are different. Consistency and a willingness to try different things is crucial.

Dr_Grimes: You need to be willing to try different things. PUVA is still a gold standard for MANY though not all people. In patients with vitiligo, we have no data comparing UVB to PUVA as yet, but I think the Narrow Band UVB compared to PUVA does appear in many cases to show less skin irritation.

Dr_Grimes: But the questions as to which is more successful...if you know what you are doing, you can use PUVA and treat someone safely and effectively.

Dr_Grimes: Narrow Band UVB is part of the broad band spectrum - that's true. But Narrow Band alone is less phototoxic and less irritating.

Dr_Grimes: Done.

mortensen_jon: Heidi is next.

Heidi: What do you mean spots in kids can be fixed faster? My daughter is 6 and is being treated with Cyclocort. She has vitiligo on her left leg. Vitamins for kids? The doctor gave her the cream and said come back in 3 months. He said she needs to be on the cream for 1 year...doesn't want it to spread.

Dr_Grimes: I would not keep a child on Cyclocort for a year. Up to three months maybe...but at that point, in localized, small areas of vitiligo, I would put her on a topical PUVA. Children respond VERY VERY well to all treatments. In general, most kids that I treat with limited involvement vitiligo, we push them and they do well...and that is using topical steroids -- for kids under 2. For kids older than that, we use topical steroids, systemic steroids, and light treatments for kids over 8 or 9. I feel comfortable using Narrow Band UVB with the kids, because it requires no drugs, and can be done with or without Pseudocatalase.

Dr_Grimes: Done.

mortensen_jon: Next is dtparks.

dtparks: Is it possible that doctors are not seeing the "cancer increase" in vitiligo patients like they are in psoriasis patients, simply due to the amount of time that psoriasis has been treated as opposed to vitiligo, meaning psoriasis treatments (with UV light) have been going on much longer that vitiligo, thus more people with cancer?

Dr_Grimes: Patients with psoriasis receive more light, over longer periods of time....but even in those periods of time, people with vitiligo are far more resilient to cancers. We don't know WHY yet...but I am saying even in comparable time exposures for psoriasis and vitiligo, we don't see the cancers in vitiligo patients.

Randy: That's about all the time we have; I know Dr. Grimes actually has an appointment to get to. Dr. Grimes, thank you for your time - this was really terrific of you to join us and share your expertise.

Dr_Grimes: My pleasure. Thanks for inviting me.

Randy: I want to thank everyone for joining us. Special thanks to Jon Mortensen for his great assistance in running the chat tonight. See you all next week!

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主持人Randy： Pearl E. Grimes, M.D是白白方面的权威专家，从事皮肤病研究已经有21年了。Dr. Grimes，据您了解，有成功治愈白癜风的病例吗？

Dr_Grimes：   我已经从事医学研究有25个年头了，其中白癜风是我致力于研究的一个主要领域。基本上我不认为bb是一种能够治愈的疾病，然而我看到至少有40%的患者肤色完全恢复或者得到有效控制。人人都可以抱怨，但是bb是可以进行治疗的。bb不可治疗的论调是极其荒谬的。


Randy：  您能否谈谈Pseudocatalase？

Dr_Grimes： 我从去年一直在讲Pseudocatalase用于白癜风的治疗。我们有超过200名的病人在使用Pseudocatalase。使用Pseudocatalase时，如果没有同时进行光疗，治疗没有效果；当使用时结合紫外线或太阳照射时，对许多人产生了很好的疗效。
     那么，Pseudocatalase是治疗bb的特效药吗？，它优于其他方法吗？我不这样认为。但它在许多人的治疗方案中是一个重要的组成部分，尤其是它易于使用且过敏反应极小。
     目前清楚的是，治疗bb没有什么特效药。最重要的是尽量试用多种治疗方法直到找到那种对你最适合的为止… …或者使用混合疗法。当然，坚持治疗也是至关重要的，治疗时间会很经历一年或更长时间。




Randy：  我们的一个bb朋友问：“我一直在使用Pseudocatalase治疗，想知道您对超过35年病史的bb是如果看的？”

Dr_Grimes：  当我们查阅病例数据库以探求bb发病时间和能否治愈是否存在关心时，我们发现他们之间没有绝对必然的联系。
    我们曾治疗过病史超过40年的病人，当使用方法得当时，他们恢复了肤色。
    正如我前面讲过的，贵在坚持。你必须做好一年或更长时间治疗的心理准备。你使用PUVA或Pseudocatalase 无效并不意味着其它方法如UVB也将会对你无效。除非你的bb面积较小，你需要做好长时间治疗的心理准备。



Randy：  下个问题。 如果长时间使用Elocon类固醇软膏（以及其它类固醇膏）是否会危险？
Dr_Grimes:： 我坚信类固醇软膏对于局部或小面积bb的治疗具有很好疗效。然而，医生需要每隔3－4周就对病人进行一次检查。因为类固醇软膏会产生诸如皮肤萎缩，血管暴露以及出现粉刺的副作用。
    对病人进行小心检查很重要。如果使用类固醇软膏3－4个月看不出疗效，我会放弃使用或者选择其它方案。



Randy：  Dr_Grimes，您能否告诉我们当接受太阳光照和紫外线照射时，bb患病部位患皮肤癌的几率有多大？Narrow Band UVB （窄波紫外光）是否真的比PUVA更安全？
Dr_Grimes：由于bb患病部位失去了黑色素，人们会认为这些地方更容易患皮肤癌。但事实是，在我们的病例记录中没有发现bb病人中皮肤癌发病率升高。现在我谈论的是没接受过任何紫外线照射进行治疗的病人。而且我谈论的是在bb患病部位和正常皮肤中。
    另外，PUVA 或UVB真能导致bb患病部位患上皮肤癌吗？答案是NO。
    在关于牛皮癣的文献和研究中，我们确实看到治疗时使用紫外 治疗会导致皮肤癌发病率上升。但在治疗bb时却不是这样。


Randy： 您认为bb的发病根源是什么？
Dr_Grimes: 哦，我认为是一种具有多种诱因的疾病。大多数病人，可能高达50％－60％，是基于自体免疫性疾病。它可以遗传。
    但也有环境引发疾病的情况。对一些病人来说，这是个明显的诱因。接触某些化学品会患上bb，药物也能诱发bb，比如对青霉素产生反应以及其它药物反应。




Randy： 对bb病人来说，除了我们目前使用的治疗方法，还有哪些新的药物或者方法可以期待在不久会出来？
Dr_Grimes: 在未来6个月到2年的时间里，更多的免疫调节药物会面世。它们能缓解人体免疫反应。我认为，单独免疫调节剂或者与其它治疗手段一起使用将会有助于治疗bb。
Randy： 换句话说，免疫调节剂的作用就是调节免疫系统，使其不再错误的供给色素细胞，对吗？
Dr_Grimes:   对。





Randy： 基因方面的研究进展如何？
Dr_Grimes： 目前有一个非常大的基因研究项目。但我认为基因疗法只对很小比例的病人有效，因为bb是由好多原因引起的。




Randy： Dr_Grimes，www.vitiligosupport.com的一些朋友想知道使用染色剂和漂泊剂的危害。
Dr_Grimes：  如果你患有bb，我建议你远离染色剂和漂泊剂。一些人容易受到这些化学品的影响，因为它们是苯酚衍生物，而苯酚衍生物能导致bb。





Randy：  好，现在回答听众提出的问题。
Storm： 您刚才提到环境可以引发bb。但世界各地都有bb患者，那么哪里是安全的呢？
Dr_Grimes： 当我们谈到环境因素和化学品因素时，不是指污染或废气。我是指工业工人，重工业工人，…，其它工业还有摄影，暗室化学品等。我们没有看到空气污染和bb之间存在某种联系。




Randy：我还想请教您营养方面的问题，包括维生素。
Dr_Grimes： 我是使用维生素的主要倡导者。我认为维生素不能治愈bb，但它们可以辅助治疗。它们有助于使发生紊乱的免疫反应稳定下来。它们在治疗bb中起到的作用是非常有价值的。




Fontenot： 请问，您是如何区别太阳光，长波紫外线，窄带UVB和宽带UVB的？
Dr_Grimes： 对皮损面积较小（小于10％）的病人，我喜欢用太阳光结合低浓度的补骨脂治疗。而对皮损面积较大的病人，我们需要尝试多种方法以找到合适的治疗方法。人的个体差异很大，bb的发病原因也不同。坚持治疗和愿意尝试不同的治疗方法至关重要。
    Bb患者需要尝试不同的治疗方法。对很多人来讲，PUVA都是很好的治疗方法。我们没有UVB和PUVA的比较数据，但我认为相对于PUVA，窄带UVB对皮肤的刺激性更小。





Heidi： 您提到小孩患者更易治疗是什么意思？我女儿今年6岁了，正在Cyclocort进行治疗。她的患病部位是在左腿上。小孩能用维生素吗？医生开的是药膏，并且说要连续使用1年时间。我不想她的病情再扩展了。
Dr_Grimes:： 我不会让一个小孩在Cyclocort治疗1年时间。大约3个月就行。对局部小面积的bb，我会让她使用PUVA进行治疗。小孩对所有治疗方法都反应非常非常好。一般地，我在治疗大部分患有小面积bb的儿童时，我们的治疗效果都很好。具体做法是：对2岁以下儿童，局部使用类固醇；对8岁或9岁以上的儿童，局部使用类固醇，系统地使用类固醇以及结合光照进行治疗。对患病儿童使用窄带UVB，我们感到很放心。因为它无需药品，而且不发生催化反应。





Dtparks：  是否可以说正因为牛皮癣患者治疗时要比bb患者照射紫外光更长时间，所以医生们没有在bb患者中看到象在牛皮癣患者中看到的皮肤癌增加的现象？
Dr_Grimes:：牛皮癣患者通常比bb患者需要接受更多的光照治疗，但即使如此，bb患者对患上皮肤癌更具弹性。我们还不清楚具体原因。在进行牛皮癣患者和bb患者光照照射时间的比较中，我们没有看到bb患者会患上皮肤癌。

水袖

辛苦了。
搬个板凳慢慢学习。

天天好心情

希望大家都是那40%的幸运儿，不求治好求控制就行了

娇气

楼主辛苦了呢~~
休息下下

浅浅

如果你患有bb，我建议你远离染色剂和漂泊剂。一些人容易受到这些化学品的影响，因为它们是苯酚衍生物，而苯酚衍生物能导致bb。
不能染发的~~

liupeng2168

练练英语！！

gobackchild

很有代表性。其实患BB且治疗有七八年甚至更多年历史朋友们应该有了辨别力了。我个人认为补骨脂，配合光疗是效果较好的。

_牛B_

愿我们的光疗版块能为广大BB朋友做出贡献。

zoujichao

认识了很多知识啊,辛苦  楼主

依依123

在这里学到了很多．．

福祸相依

接近一半的白白患者能恢复？请问有什么根据？信口胡说吗？

﹏唐先生.

学习了····

rjp_ww

文中的"Pseudocatalase”是什么药，在那里有卖的，中文名字是什么？只有国外才有吗？

有谁知道这种要，我刚搜索了一下，网上关于"Pseudocatalase”的资料很少。

化茧成蝶毛毛虫

学习了 Pseudocatalase是什么药 普特彼？他克莫司？希望有懂英语的来翻译一下