Red Light Clinical Trial at Hammersmith Hospital
Forum Moderator
Joined: 24 Apr 2006
Location: Dorset, UK
| Posted: Thu Nov 09, 2006 8:25 pm Post subject: | |
| Peter
Yes still on track for december. I will try to remember to ask him about the RLT but I'm not promising as I seem to go abit funny in front of doctors and end up forgetting everything I wanted to ask  |
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Joined: 13 Jun 2005
Location: UK
| Posted: Thu Nov 09, 2006 10:32 pm Post subject: | |
| Hello Sarah
I think it's called White Coat Syndrome  I use to bombard Tony with questions when I was there and used to write everything down first so I didn't forget. Couple of times I printed out my questions and gave him a copy to read and he didn't mind. As you know he is extremely knowledgeable on rosacea so the downside of asking many questions is trying to remember all his answers after you have left 
Anyway it's your appointment so your stuff must come first but it would be good for you to ask for his opinion on RLT and also the trial. I was going to say if you remind me a couple of days before you go, I'll remind you to ask the questions but that sounds a bit daft! If you get a chance you could ask the dermatologist next Friday at the seminar for his views on RLT for rosacea. Good luck anyway. Peter |
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Forum Moderator
Joined: 24 Apr 2006
Location: Dorset, UK
| Posted: Fri Nov 10, 2006 12:32 am Post subject: | |
| Peter
You were reading my mind I'm going to post up the topics for the rosacea day and see if anyone has any burning questions. I think I do have a bit of white coat syndrome. What I find is that I often remember to ask the question but then no matter how hard I try I cannot concentrate on the answer. I'm either concratulating myself on remembering or if not then panicking about asking the next thing. This is specially true of people like Tony who a hard to see very easily. 
Sarah |
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Joined: 12 Jun 2005
Location: Iowa, U.S.
| Posted: Fri Nov 10, 2006 3:34 am Post subject: | |||
Bring a typed list of questions. Just hand it to him and ask him to answer your questions. That way you can just listen and make him talk. _________________ 28 year-old male Erythmatotelangiectatic rosacea & Ocular 20 + laser treatments. Toleraine Soothing Light Facial Fluid for moisture, currently not using antibiotics. Using homemade red light LED array. Clonidine daily; klonopin sometimes. |
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Site Admin
Joined: 07 Jan 2006
Location: Australia
| Posted: Fri Nov 10, 2006 11:32 am Post subject: | |
| Good idea to take a list of questions with you. Perhaps you could make little notes under the questions when each question is answered. You know, just some key words that will jog your memory after the appointment.
I probably have a case of White Coat Syndrome too and my well thought through questions/comments seem to fly out the window as soon as I get in! Urgh! I would love to have an intelligent conversation with a doc about my thoughts on Rosacea but I feel sort of intimidated when I sit down infront of a doc! Anyway, maybe one day this will change. Hope so! Jen |
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Joined: 13 Jun 2005
Location: UK
| Posted: Sat Nov 11, 2006 2:01 pm Post subject: | |
| Hello
I think we have all agreed that it makes sense to write all the questions down first as an aide-memoire. I have heard of some people actually taking a tape recorder with them but I suppose you should get the specialists permission for that first. Personally whenever I see a specialist I try and remember that the reason I am there is to get the best advice and treatment and if I don't agree with their opinion then I should be prepared to state my case. Some will try and get rid of you as quickly as possible just by writing out a prescription but then that is the time to become assertive and make sure all your questions are properly answered. If the specialist makes you feel intimidated then maybe you should find another one who doesn't. With Tony I always felt totally at ease and he gave me the impression that he really cared and even though he didn't necessarily have all the answers he would do everything he could to help me. Peter |
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Forum Moderator
Joined: 24 Apr 2006
Location: Dorset, UK
| Posted: Fri Dec 15, 2006 8:08 pm Post subject: | |
| Okay just an update. Have been to see Dr Chu and remembered to write down the things I wanted to discuss. Anyway after my bit I asked him about the RLT trial.
Dr Chu said that the trial was going to start in the next month or so and had been taken a while to set up due to having to comply with all the medical stuff (forget what its called). He was going to be the Omnilux red light and would be offering it to people who could get to the hospital twice a week (not me) for twenty minute sessions. I mentioned that Peter had seen great beneift and he agreed that this was true and what Peter had used. That was about it. |
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Joined: 26 Jun 2006
Location: Changing servers
| Posted: Fri Dec 15, 2006 8:33 pm Post subject: | |
| That's great to hear! Thanks Sarah. _________________ I'm changing servers, links will be active again soon. |
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Joined: 13 Jun 2005
Location: UK
| Posted: Fri Dec 15, 2006 10:52 pm Post subject: | |
| Hello Sarah
Appreciate you obtaining this update during your apointment. He will be referring to the Ethics Test which I know was approved once but because of a time delay it had elapsed, so had to be re-applied for. Well hopefully the trial will get underway early in 2007 and we will have a better understanding of how it can help treat rosacea. I will try and get further news on it's progress once I know it has actually started. Did you ask him if he felt red light might help you? Hope your apointment went well and of course you didn't spend too much money Xmas shopping in Town
Best wishes Peter |
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Forum Moderator
Joined: 24 Apr 2006
Location: Dorset, UK
| Posted: Sat Dec 16, 2006 9:21 am Post subject: | |
| Yes I did but he thought I meant on his trial and he said it wouldn't be practical. I sort of re-phrased it and he said you had had success with a particualr one and that this might be a good place to get one. We both agreed that it would probably best to wait until after I have completed my laser treatemtns with both him and Dr C.
I prefer to do one thing at a time and so will not look at buying one until sometime next year. I also told him that the Omilux was available at certain clinics the details of which could be found on their website: http://www.skin-health.co.uk/omnilux/omnilux.asp If there is one close to me this might be another option for the future. |
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Joined: 13 Jun 2005
Location: UK
| Posted: Sun Dec 17, 2006 8:45 pm Post subject: | |
| Hello Sarah
Yes very wise to complete your laser treatments first and then decide whether RLT is an option for you. I suppose you will see Tony again in the Spring so hopefully his trial will be well underway by then and there should be more information available on the benefits of red light in treating rosacea. Best wishes Peter |
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Joined: 12 Jun 2005
| Posted: Tue Dec 19, 2006 11:27 pm Post subject: | |||
Given this scenario, I fear the trial may prove inconclusive. |
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Joined: 04 Apr 2006
| Posted: Wed Dec 20, 2006 1:12 am Post subject: | |
| It could still be random. The people randomly chosen would remain in the study if they could make it to clinic twice a week. The best thing about the study is that any positive results would spur on larger, more detailed studies.
It could even be double blinded if red Christmas lights were used for half the participants  It would be nice if it's at least random, though. If not, I would not call the info inconclusive, just not as strong. Still much more information about the effects of RLT than we have now, but keeping in mind the strength of the setup. Plus the benefit of possible repeat, future studies.
Cheers! Artist |
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Joined: 14 Sep 2005
Location: Chicago
| Posted: Wed Dec 20, 2006 3:36 am Post subject: | |
| But using it only twice a week for 20 min. - isn't that too minimal??? - | |
Joined: 04 Apr 2006
| Posted: Wed Dec 20, 2006 4:21 am Post subject: | |
| I think it must be one of the larger, more powerful machines? I'm not sure. Good question.
Artist |
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