Physician Question and Answer Section -- Need Input on This [Archive]

drnase

2nd July 2005, 05:55 AM

Hi Moderators. Looking for input on this thread as this will be just as important to this entire group -- you guys figure out the questions, but we also need constructive input on how you think this should go and various opinions to get to the best approach to keep this section (which will be tough) to keep growing and come across as a very friendly and constructve place that makes physicians want to participate), Ned your input in a think tank way

I am having a pretty good head day. I had my last internal stint taken out and it feels much better. I also dropped one antisiezure medication due to the healing process and the severe mood swings that it caused. Just to put you guys an gals at ease, they said this was a common side effect. They also said that it is quite common for people with tumors in my area to experience daily/hourly mood swings -- and this was in there for at least a couple years growing. I hope that you all understand that my constant movement, my partial rambling sometimes, and my seemingly fleeting feet is just not the true Jeff. No one has seen the true Jeff for a couple years. I am dedicated to this group and will continue to do for as long as you guys want to build and educate.

I have several physicians who are interested in a Physician Q and A section. I told them it would not be about advertising and that we had an extremely bright group. They were all fine with that. Questions. My first thoughts which are definitely changeable:

1. Include a section on Physician answer and question in the main forum. Allow the rosacea sufferers to know who is coming up for interview so they can investigate and then have them advise us on questions and then we can vote. I think 20 moderate level answer questions is reasonable and a few long questions.

2. We then hand the physician a list of those questions so he can prepare answers within a few days. Then he submits them for review by our group.

3. This is followed up by furhter clarity questions and the physician should answer.

4. I would like the chance to focus on one or two questions to constructively debate each physician.

5. If we get a good impression we let them join and start a physician collaboration group?????

So far, I have four laser physicians willing to do this, each with a different machine. I have two dermatologists and think Albert Kligman would definietly respond a flushing expert. All are willing to try this out.

Dr. Darm
Dr. Bitter Sr.
Dr. Diaz
One unsure but leaning towards yes

Dr. Wolverton 00 derm
Well known Internet Derm
Most likely Albert kligman

Skin Flushing expet from Texas

What you think about the section, setup and folow up?

drnase

2nd July 2005, 06:46 AM

One physician we may want to interview.

Hi Dr. Nase.

My name is Gus Diaz, MD. I am a Facial Plastic Surgeon based in Gulf Shores, Alabama. I would like to thank you for the extraordinary work you are doing in helping patients with rosacea. Currently I have about 3-4 patients that were referred form your board to my practice.

I currently have a Lumenis One since Sep 2004. I currently treat 4 to 5 patients a day. All IPL treatments are preformed by me. I am also currently a teacher for Lumenis for the Lumenis One, ClearLight, LightSheer, and in the near future for 2 new modules that are going to be available for the Lumenis One.

I will like to help you and the group in any way that is possible. My consultations are free, and I think that the prices of my treatments are reasonable. Please, let me know that you received this e-mail.

Thanks once again.

Gustavo A. Diaz, MD

Facial Plastic Surgeon at the McCollough Institute

Medical director of the MedSpa and Laser Center at the McCollough Institute

Kris Jacobs

2nd July 2005, 04:09 PM

Great to hear you are feeling better Dr. Nase,
This is going to be short because I have to run:
But I think it is important to have physicians know that creams (metronazole, noritate, Retin A Etc Etc Etc) Have absolutely NO efect on rocasea symptoms. And in a lot of cases can make our symptoms worse. I think I is importatnt To let these doctors know that right now creams are not the answer.
I will elaborate more on this later. Sorry I have to run. You guys and gals have a great day
Kris Jacobs

drnase

2nd July 2005, 05:00 PM

Kris,

That has always been a foremost goal. Actually, most of the physicians that I/we invite I have collaborated with or they have read my book and know that. Our job is to extract more information out of them and also emphasize that we still need better treatments no matter how good they are. Good point.

We could possibly put a short introductory paragraph for all future physician posters to address this, but still listen to some degree to what they have to say if they veer slightly into that area.

Bob Bear

2nd July 2005, 09:24 PM

This may be irrelevant to this thread, but Iv noticed that most UK GP's have an odd view towards rosacea - they seem to dismiss anything that doesnt show up in their little books with regards to treatment options.

For example, Iv been told by my GP that non of the following should be used or have any place in the treatment of rosacea:

- Moxonidine
- Clonidine
- Clonazepam
- Any kind of laser machine

This is quite contary not only to the facts, but also to my own experience. Iv had great results with IPL, and I know many people using the above drugs.

So, I think its important that treatments such as these become regonised as standard by the medical world. Its no good for patients to be at odds with their physicians.

2nd July 2005, 09:49 PM

I agree that UK GPs do not believe lasers have any association with rosacea, in fact they seem to think Metrogel and antibiotics is where it starts and ends but i don't think Dr Nase can do much to remedy that situation sadly.

Kris Jacobs

2nd July 2005, 10:01 PM

I could'nt agree with you more Dr. nase,
How (what angle) do you think is best when approaching this?
I have no idea how these doctors will respond. maybe you could give us an outline or guidelines as to what we should cover.
Kris jacobs

drnase

2nd July 2005, 10:11 PM

Kris Jacobs

2nd July 2005, 10:13 PM

Hi Dr. Nase,
I think that if these doctors are already somewhat educated on rosacea, then we should concetrate on near-future treatments- that is VEGF inhibitors, sansrosa etc.
From what you say, VEGF seems to be the most promising. If we can get IPL treatments and then inhibit vessel re-growth, Via VEGF inhbitors, then we are really onto something.

Also, like you have said in the past, beating rosacea will probabely lie at attacking it at the genetic level. We should ask these doctors if they are willing to study this at the genetic level, or if they already have, what have they found?

thanks
Kris Jacobs

drnase

2nd July 2005, 10:13 PM

Nice follow up with Dr. Diaz which shows postive potential of Physician Q and A.

Hi Dr Nase.

I am honored with your invitation for the section of Physician Questions and Answer. Being a Facial Plastic Surgeon and worried about cosmetic results might bring a different twist to the traditional vision that the dermatologist bring to rosacea. I also understand that you are trying to keep advertisement to a minimum and I will also try to keep it that way. But, my experience is with the Lumenis One and rosacea is very successful and I will like to help as much as I can. It also depends on what equipment the physician has and also if they are able to bring it to the maximum that that particular technology allows.

I will like to join the group, but also it will have to be done in a way that I am not bombarded also with questions and also taking into consideration not to cause any bias to a treatment modality, medical specialty, or professional controversy with any other physician inside or outside the board. You know how patients like to place you in the spotlight with questions referring to treatment specifics between us physicians and why our way works and the others physician don’t. That is one thing that we have to try to keep to a minimum. This could be a good beginning for a group to take improvements in their condition and make us learn how to improve between each others as patients and physicians. It is funny, but the times that I have learned the most about a condition have been the times that I have sit down and really listen to what the patient has to say about it.

I will keep your information and phone number confidential.

Thank you,

Gustavo A. Diaz, MD

--------------------------------------------------------------------------------

From: Dr. Geoffrey Nase [mailto:drnase1000@hotmail.com]
Sent: Saturday, July 02, 2005 12:06 AM
To: drdiaz@mccolloughinstitute.com
Subject: RE: Hi

Hello Dr. Diaz,

Sorry for the delay, I receive too many emails to ever get to so I have to weed through sometimes. Warren and I are moderators of a great forum with very intelligent rosacea sufferers. We are builiding a Physician Question and Answer Section and I would love to have you on as a guest physician.

I was thinking about allowing the rosacea sufferers 15 questions and then sending them to you to fill out at your liesure, submit your answers and then have one more follow up for cliarification. You would then be certainly welcome to join our group. We try to keep advertising to a minimum, but as you are aware I am very impressed with the Lumenis One and experienced Laser Specialists because this attacks the heart of the neuro-vascular rosacea beast.

Please feel free to email or give me a call in the afternoon anytime after 5 PM. Please, please keep this number confidential or patients will force me to change my number for the countless time. I look forward to hearing from you. I am working closely with Dr. Jerry Darm of Portland Oregon, but I am first and foremost a patient advocate and an Academician...... so collaboration and choices are very important to me.

Kelli

3rd July 2005, 01:19 AM

It's great that these specific physicians are on board to help and to learn from rosaceans, but what about the countless other physicians out there that we are stuck going to? Is there a way that, through talking with these physicians, that we can ask them questions, and in turn, they can help us with what we need to ask our Dr.s? Our own list of questions that can prove we are educated.

This is my problem. Most everything here goes over my head. I try to dissemenate the information I read, but I'm WAY behind everyone else. I ask a simple question about IPL, and get answered this machine and that machine... I can't take that information with me to a Dr.

Maybe I'm asking for two different things here. But, just throwing out my 2 cents. :-)

drnase

3rd July 2005, 02:41 AM

Excellent suggestions Kris. So, as I am gathering information for 15 to 20 questions with you folks maybe:

1. 50% should be in his area of expertise
2. 30% should be on what he/she thinks about upcoming treatments
3. 20% on the genetic level (this one will be very hard though because very few are experienced with this -- you have to go to PhD geneticists who work with patients to really get the correct information.

This helps organize.

drnase

3rd July 2005, 02:42 AM

Do we just make another subforum or do we make a cute front page?

drnase

3rd July 2005, 02:46 AM

Kelli,

Very important question as I learned down the road. We should ask each physician how he would like his/her patient to present the case or answer questions. Great question.

For example, my dad told me how to approach doctors with this mysterious confusing disorder.

1. Come in with one page of bulleted notes (no more because they lose concentration)
2. He does not ever want to hear what another doctor thinks. That surprised me....... but his explanation made sense. Doctors are human to and if you come in self diagnosed or a doctor says this then that bias is already in his mind and may cause him to make a mistake.
3. My dad wants to hear facts in an orderly fashion. What are your symptoms, when do they worsen, is pain involved, etc.

Tamara

3rd July 2005, 02:52 AM

20% on the genetic level (this one will be very hard though because very few are experienced with this -- you have to go to PhD geneticists who work with patients to really get the correct information.

I like this idea of finding out more about where we stand with rosacea on a genetic level. How about finding a PhD geneticist to do a Question and Answer session? That would be exciting!

Tamara

keisha06

3rd July 2005, 04:14 AM

I really like the idea - especially having some time to think about the questions ahead. Having a bit of bio available on the particular physcian ahead of time would also help (yes we can do some investigation on the Net, but having some info ahead of time of who they are and where they are coming from would be very useful.

I would also like to see the information from the Q&A compiled into some kind of document - html or PDF that can be kept on the site for reference (and used to take/give to derms or doctors members are visiting).

Thanks for the work!

grooney

3rd July 2005, 04:48 AM

I think it would be nice if we had the name of the Doctor who would be doing the discussion ahead of time. Also, if possible, to have a little bit of information about their area of expertise. That way, we could gather all of our questions and sort them out. I would also like to have the doctor tell us a little bit about what they specialize in.

So far, the list of physicians sounds great. I think that they could really offer some good advice. I really like the idea of someone speaking on the area of genetic research, also if there is someone who is an expert in flushing and blushing.

I think the future treatments is what we're all hoping to get some information on.

Not sure if this is possible, but is there a way to get these Doctor's to spread the word to other Doctor's. I would love for my physicians to know what's going on, so they could finally realize that Rosacea isn't cured with Metrogel.

I'm not sure if this was the kind of feedback you were looking for Dr. Nase, but I hope it helps.

Thanks again,
Gina

drnase

3rd July 2005, 05:01 AM

Very helpful group. This is one area Warren and I were especially excited about.

Tamara -- absolutely get a PhD geneticist to form some practical questions for these physicians (most wont know anything at that level though) I will have to ask groups associated with the NRS genetic study to get a physician who could really help.

A full bio before and time to ponder over questions and take questions from the group is an absolute. This way they can focus different questions if it is a derm or laser physician or flushiing expert, etc.

Diane, all good points. We will keep this permanent somehow -- certainly in this forum, but then also in a PDF format hopefully.

Give the physician time to prepare so they feel comfortable, but as I learned in my field it is the followup interview that clarifies and reveals the most in many cases.

Kris -- With your comment I will give you a sneak peak for my upcoming article, but this has to stay here for right now for copyright reasons until it is published please. From what you say, VEGF seems to be the most promising. If we can get IPL treatments and then inhibit vessel re-growth, Via VEGF inhbitors, then we are really onto something. After several long talks with Dr.. Theobold the head director of research at Collagenex it looks like Col-3 will be one of the most significant advances in rosacea treatment. The studies on rosacea sufferers show that this modified tetracyline is a potent inhibitor of angiogenesis in areas of inflammation and skn cancer and knocks down angiogenesis by 60 to 70%. So, they found marked benefit in just 28 days in the vascular beast. More exciting will be to study it after laser treatment -- can you imagine if we could knock out most of the regrowth. We may just need two or three treatments tops. Plus you can use it long tern because it downregulates VEGF to normal levels in rosacea sufferers and it blocks the inflammatory iNOS involved in rosacea (finally my nitric oxide theory is linked directly to this disorder). These three actions are really more than we could ever hope for in one oral drug. Much more information.......cant give away the ending.

Bihbicat

3rd July 2005, 06:57 AM

I agree that it would be important that we know what Dr and what their area is beforehand so we can come up with good and relevent questions for them. I'm sorry to see I don't have much insight into the best way to set up this stuff -- practical web stuff is not my strong point, but I do look foward to seeing the discussions that arise.

drnase

3rd July 2005, 07:25 AM

Bihi,

That's it. You could have at least used run on sentences. :shock: Your point absolutely has to be driven home. We dont want 15 questions about laser treatment for dermatologists who dont use laser, etc.

Warren

3rd July 2005, 08:24 AM

Do we just make another subforum or do we make a cute front page?
I would also like to see the information from the Q&A compiled into some kind of document - html or PDF that can be kept on the site for reference
We will keep this permanent somehow -- certainly in this forum, but then also in a PDF format hopefully.

mock up of cute front page.

http://rosaceagroup.org/Dr_xx.html

Adam

3rd July 2005, 03:29 PM

Dr. Nase:

Hi. Good news! :D Let us looking forward to that.

I am glad you are having a good recovery, but please don't work too hard.

Cheers,
Adam

Hi Moderators. Looking for input on this thread as this will be just as important to this entire group -- you guys figure out the questions, but we also need constructive input on how you think this should go and various opinions to get to the best approach to keep this section (which will be tough) to keep growing and come across as a very friendly and constructve place that makes physicians want to participate), Ned your input in a think tank way

I am having a pretty good head day. I had my last internal stint taken out and it feels much better. I also dropped one antisiezure medication due to the healing process and the severe mood swings that it caused. Just to put you guys an gals at ease, they said this was a common side effect. They also said that it is quite common for people with tumors in my area to experience daily/hourly mood swings -- and this was in there for at least a couple years growing. I hope that you all understand that my constant movement, my partial rambling sometimes, and my seemingly fleeting feet is just not the true Jeff. No one has seen the true Jeff for a couple years. I am dedicated to this group and will continue to do for as long as you guys want to build and educate.

I have several physicians who are interested in a Physician Q and A section. I told them it would not be about advertising and that we had an extremely bright group. They were all fine with that. Questions. My first thoughts which are definitely changeable:

1. Include a section on Physician answer and question in the main forum. Allow the rosacea sufferers to know who is coming up for interview so they can investigate and then have them advise us on questions and then we can vote. I think 20 moderate level answer questions is reasonable and a few long questions.

2. We then hand the physician a list of those questions so he can prepare answers within a few days. Then he submits them for review by our group.

3. This is followed up by furhter clarity questions and the physician should answer.

4. I would like the chance to focus on one or two questions to constructively debate each physician.

5. If we get a good impression we let them join and start a physician collaboration group?????

So far, I have four laser physicians willing to do this, each with a different machine. I have two dermatologists and think Albert Kligman would definietly respond a flushing expert. All are willing to try this out.

Dr. Darm
Dr. Bitter Sr.
Dr. Diaz
One unsure but leaning towards yes

Dr. Wolverton 00 derm
Well known Internet Derm
Most likely Albert kligman

Skin Flushing expet from Texas

What you think about the section, setup and folow up?

allstar

3rd July 2005, 09:09 PM

Dr. Nase, with all due respect, I am concerned about this dr. q and a section that you are promoting. I have been reading your posts (so many of them lately) and following you on other boards. I am concerned about your recent mood swings and irrational rage that you have shown on the boards (and discussed at the beginning of this post). I am not sure how you will handle the situation if you disagree with the opinions of these doctors. You have been extremely vocal and diligent lately in your defense of macrolides in response to differing opinions on that subject. I think that it is important to have differing opinions. You are the resident "expert" on this forum, and with the recent history of late, I am wondering if we should hold off on this project until your medication and emotional state is under control. Dr. Diaz even expressed his concerns about this in his email to you. What does everyone else think about this? I guess I am just being cautious in light of very recent history. Thank you for understanding. Moderators, I am also wondering how you feel about this. Thank you.

Allstar

drnase

3rd July 2005, 09:25 PM

Allstar,

I am finally starting to feel like I did two years ago and have just been taken off a couple medications.

I have been presenting facts about the macrolides, not opinions.

Mood swings, irritability and pain are classic symptoms that occur with tumors and for a few months after tumors. I am finally starting to see a balance back again in my life and would like to pick up and run with it.

These doctors that I am inviting are not even comparable to what has happened with the website and the constant Laura/Soldo interjections on every subject that I post. They are actively attacking me on every subject and lately I think I have handled it extremely well.

I can appreciate your concern, and I respect it to some degree, but your post is a little bit harsh and has been on other boards. I also believe you have misinterpreted Dr. Diaz's concerns and I certainly can ask him about this during our phone conversation this week to double check.

All I needed when I got back from surgery was a break, but not only did I not get that, but I found myself all of a sudden in the middle of three very hostile women protecting their physician's income and the last wings of two RRF members anger because I warned people about 9 out of 12 board members no longer there yet being advertised.

Is someone willing to give me a break after my long track record and let me do my thing. The macrolide is important because many have no response to normal tetracylines and the macrolides can literally clear them in 8 weeks and then maintain them on pulse therapy. Its also cutting total laser treatments on patients by 30% to 40% in 6 months of reports from physicians testing this out.

drnase

3rd July 2005, 09:37 PM

Allstar,

The other point is that you termed it irrational rage. That is not a correct statement because it means rage for no known reason or for a reason that is of no consequence. My rage, if any, has been directed only at a large website placed up by two or three very angry people. So, to be mad or upset (not rage) at this and to voice your facts on these allegations is not something I'd like to do, but is something that had to be done. Thats it. I thought that point needed some clarity because if I was in a state of irrational rage during my brain tumor and after my brain tumor including now, then I certainly would not want to be a part of the Physician Q and A until I healed. But, I honestly do not believe that I ever demonstrated rage and certainly not irrational rage. I was justifiably upset as I believe you would have been if our places were reversed.

Dr. Diaz does not want to get into heated battles with other physicians that we bring onto this board. This does not concern me and I made my point clear that if we invite them, they answer the questions based on their experience. On flollow up their may be a couple questions, but I think it would work out nicely.

I hope you see some of my points and believe them to be valid.

allstar

3rd July 2005, 09:38 PM

Thank you Dr Nase, and I am sorry that my post appeared harsh. I was just going on what I have observed and what you shared in your post. I am concerned, and I think that it is ok to bring up concerns, especially when they are honest and valid concerns. I and I am sure so many people want to give you a break and let you do your thing, but all I said was that maybe we should wait for a little while, also to give you time to heal and get your career and institute going. It is sometimes difficult to challenge politely on these boards because so much is lost in the typed words. It is ok to disagree and be disagreed with.

allstar

allstar

3rd July 2005, 09:50 PM

Thank you for your replies, dr nase, and I will look forward to the q and a sessions with all of the doctors. Thank you again.

allstar

drnase

3rd July 2005, 09:57 PM

Allstar,

You did bring up a point that I have thought about quite often and was the reason for me switching boards and my halt in stopping posts for a while right after surgery -- I was not physically able to handle it. But, I guess that also made me look a little whimsical. I honestly dont think I have ever showed irrational rage or irrational anger. That was the only point that felt harsh. I admitted my mood swings, but they were childish at best and to be expected after a major operation to that area of the cortex. So, I have been trying to feel my way back into this. Some hours are now normal and some are not (but I have learned not to post at all during these times because the symptoms are clear -- the brain swells, my ears ring, my vision drops by over 50% and my left side loses much control). I know not to fight through this anymore.

No hard feelings. We want this to grow and I certainly would not want to be the downfall of a Physician Q and A that I set up. But, I am also picking physicians who have known me for quite some time and would not attack me. I love civil debates. I did this for 16 years in academa. We then shake hands and go to eat to discuss the points that the other one made and laugh and decide who won that debate and why. I really take constructive criticism well. What I dont take wll is when I make factual statements and then one person with a huge grudge combines with a doctor with a huge grudge and just posts that what Dr. Nase is impossible, or no one uses that, or thats wrong (when they just post strong opiniion without any facts, or experience). Then I will bury them with a thousand references, facts and direct quotes.

Kelli

4th July 2005, 01:32 AM

drnase

4th July 2005, 05:21 AM

Dr. Nase, Warren... a thought that jumped into my head. Once the Specific Q&A is uploaded (which, let me know if you need help with layout of the PDF's. Print layout and design is my expertise.) what would y'all think about a very controlled live discussion with a Dr. at one time?

It can be invitation only, could be done through yahoo chat so you could see who is in the room. And, if you're worried, questions could be posted ahead of time for screening purposes. But, the Dr. would be available for any questions that pop up right then. Maybe an hour MAX of their time (which is extremely valuable).

Just a thought if you guys were thinking of directions for this to go...

Kelli,

Thank you for the PDF layout help. Your expertise would be greatly appreciated.

Very interesting idea about the real time questions. Something to place in the think box and mull over. The only con I can think about for this is the doctor may need more time to give the best answer in the most logical order. If I may use myself as an example, when I started posting 7.5 years ago to a few small groups, I always wanted to take my time and write out long detailed answers with proper grammer, spelling and most importantly, not forget anything or write down anything with too much haste. I found out that tthis was not what the people wanted -- I was taking too long in cyverspace. Something I learned and adapted to. So, now I answer many questions aolmost any day and this is a quick, response, a shorter response and somethimes I forget very important points covering the topic so quickly. Spelling and grammer mistakes (which I now make constantly because that time is not spent on double checking, it is spent on moving on to answer the next question). My real concern, is I almost alwsy leave out or forget important points; It is never as orderly and logical in its presentation because I have not had time to think about it. So the answer in almost real time is not nearly as good as an answer if I was handed 40 questions each night to answer at my own pace and go over at leasst 7 to 10 times. So, I would not want to sacrifice the quality of a permanent answer put up by a physician for the benefit of a real time interview. That is the only con I see, but maybe we can make some hybrid, so keep them coming kelli.

Spav

4th July 2005, 10:16 AM

All this sounds very promising.

I think the largest hurdle is gaining the doctors confidence. Personally i would definitley cross any ideas of real time chats off the list (past experiences have told us how easy it is to be quoted out of context in web chats). It is likely that the first doctors who agree to take part will only do so with some trepedation. We need to ease their fears as much as possible at the begining.

I was thinking something along the line of:

When a doc agrees to take part in the Q/A. A thread is started (maybe in the announcements section), giving the doctors name, background, qualifications and current interests and asking for questions. Us the users are given a limited time to reply with ideas. After which the forum moderators decide what are the most suitable questions to ask taking into account the doctor, group members interest and value to rosacea treatment. Then a list of 15 questions are submitted to the doctor.

It is also very important that we clarify what we intend to do with the answers with the doctor. Just displaying them on the site is very different to compiling PDF's to be sent to derms.

drnase

4th July 2005, 10:25 AM

Excellent post spav. Those are the exact things I was thinking. I was also intrigued about the PDF, but we need to ask them because they may just want to keep it here.

Once we get two or three dcctors with their reports up, then we have shown the future doctors a good track record and lessen some of their fears.

We also do need a bio and information from the doctor so that the questions asked can be focused and relevant. For example, I would never ask a Laser Specialist what his thoughts or experience were with Finacea.

Thanks for the thought provoking post. We continue to trim and modify in order to give it our best shots.

We do need to emphasize that there will be no bullseyes on the back of any doctors. And joking around has to be obvious or not at all.

Bob Bear

5th July 2005, 02:25 AM

UK people,

I am sorry to hear that and have heard that often from Andrew Reid of the UK. That is probably why Dr. Patterson is the only known guru in the whole land.

On a separate note, Dr. Patterson does listen to me often (I mean we collaborate, he listens and we talk). He has prescribed moxonodine because most need less laser treatments, he does prescribe clarithromycin XL and he does experiment quite a lot.

I will leave the UK people who kindly responded to either find a UK doctor who supposedly knows his stuff and re-educate or we can go right for Dr. Patterson.

Thank you for your comments

Dr Nase,

I think that Dr Patterson would be a FANTASTIC choice as a guest in the Q/A forum. Like you say, it appears that he is pretty much the only Dr in the entire UK who is on the right page. Iv seen several IPL practicioners, GP's, derms etc and none of them have anything to say thats worth hearing. Quite often they get very defensive when you talk about medicine they arent familiar with! Not good.

Im not saying this because I think you can 'do something about it'. I mentioned it becuase I'd love to see a UK Dr on here. I know Dr Patterson, Iv had numerous treatments with him and remain in regular contact. He seems very open minded about new treatments and ideas, so I think it would be great to invite him to our humble abode.

drnase

5th July 2005, 03:30 AM

Bob,

With the large number of Rosacea sufferers in the UK (almost comparable to the US), it baffels me why the UK doctors do not know much or are dismissive. Are you talking about your UK dermatologists also? Why do you think they are like this?

I will certainly invite Dr. Patterson and I am sure that he would love to participate. Maybe we can unravel some mysteries. I put you in charge of coming up with a few specific questions about treatment and approaches that UK doctors take and see what he says.

Bob Bear

5th July 2005, 03:58 AM

Hmmm, I couldnt say.

With regard to my GP ('s), Iv gotten different responses:

One didnt take me seriously at all. I described my symptoms, but he said I didnt have rosacea because I wasnt (and I quote) a middle aged white woman. Lol. I saw him again on another occassion and explained that I felt my symptoms were consistent with rosacea, and that Id had moderate to good success with an IPL specialist. Afer that we got into quite a heated debate since he wasnt prepared to accept that IPL was an actually legit treatment.

Another GP is saw was prepared to accept I had rosacea (after showing him your book). He was happy to help, but wouldnt stick his neck out and prescribe me something worth having.

The derm (well, a skin specialist at the hospital) I saw wasnt familiar with anything i had to say. He offered me beta blockers but said he didnt know what else to say.

Im sure you can see the trend. Dr's in the UK just dont seem to have any idea of what rosacea is let alone how to treat it. This is a problem, since its difficult to talk to your Dr when you fear you know more than they do on the particular issue.

I must admit, Im as baffled as you as to why this is! I think it many Brits 'dont like to make a fuss' over such things, thinking them silly and insignificant. Unfortunately that has all changed with my generation, hence why we're flooding these boards looking for help. This as Im sure you agree is not a good thing AT ALL. We need to be able to trust in our health service, not rely on the internet for selfdiagnosis and treatment. If we could get some Dr's from the UK on here, maybe it would be a start?

Anyway, Iv gone on about this long enough. I look forward to the first Q/A, I think this is a great idea! Wish I could offer more in the way of support with regards to this section, but I honestly dont know what to suggest.

Bob Bear

5th July 2005, 04:07 AM

On second thoughts I may be able to suggest a reason for this:

It seems that all the accepted rosacea treatments are considered somewhat 'alternative' in the UK. A GP said to me that if IPL was proven then it would given on the NHS - the fact that it wasnt showed that it was an unproven technique. He even went as far as to suggest that my IPL doc was a cowboy!

I think maybe if these treatments were recognised as rosacea treatments then we might have better look.

For example, Iv been denied Clonidine and Moxonidine all because they were down as hypertension drugs, NOT rosacea drugs. Same for Clonazepam, the GP wasnt having it that this drug would be of any benefit at all; and therefore wasnt prepared to take the risk of prescribing it to me.

To be honest, I dont know WHAT exactly they do have down as rosacea treatments, but they certainly dont recognise the majority of stuff from your book. This needs to change if we are to have any look with GP's.

PS. I would like to point out that I by no means have seen every GP in the UK. Im only talking from my own limited experience here. If any other UK rosaceans have had experiences contrary to this, then it should probably be bought up before the Q/A.

5th July 2005, 07:04 AM

I'm not sure if anyone has read the thread on ESFB about Dr Crouch at the Burghley Clinic in Swindon. He is using the Lumenis One, apparantly with great effect according to the two people who have posted on the thread, plus it has been stated that he has rosacea himself and so understands the effect this condition can have on a sufferers quality of life.

I would LOVE to hear more from him on regards to his treatment protocol and the Lumenis One.

drnase

5th July 2005, 08:07 AM

Put him on our list Sally Ann. That sounds like a very intriguing interview.

5th July 2005, 08:23 AM

Excellent stuff! Just thought id post the link for those who hadn't read the thread i mentioned;

http://www.esfbchannel.com/cgi-bin/yabb/YaBB.pl?board=Rosacea&action=display&num=1118712051&start=30

Kris Jacobs

5th July 2005, 04:11 PM

Wow!
I just got back into town and it seems as though this physician Q&A will be a success.
Dr. Nase, the VEGF article sounds very promising.
My only concern with all of these new future treatment options on the horizon is that most Docs will be completely lost.

I mean if we can't get docs now to understand that low dose Accutane and IPL treatments are recomended for rosacea, then how are we going to educate them on NOS inhibitors, sansrosa, and VEGF inhibitors?

In general, the medical community (in regards to rosacea treatment options) seems to be about 10 years behind where we (the Group) is now.
What are your thoughts on bringing these Derms up to speed with the rest of us?
Also like you have mentioned before, most docs stick to what they know (ie. metro cream, tetrocycline, and call me in the morning). How are we going to change this devastating way of thinking that has caused rosacea research to progress but only at a crawl?
I mean I think about it and wonder where rosacea research would be with out you Dr. Nase, and thats a scary thought. It has only come a long way because of you.
Just wondering how we can have the most impact on these docs.
Thanks
kris Jacobs

bethanne

5th July 2005, 06:18 PM

Kris,

My thoughts exactly. I was pondering the same question
these past months. When something does make it past
the FDA to market, how do we find a derm who will
write the script?

In my experience, the derm I've seen will give me practically
anything to try topically. Oral medication is quite another
matter.

I guess we will have to cross that bridge when we get there.
And I'll be thrilled to get there!

I also would be appreciative of any thoughts Dr. Nase has on
this matter.

Warm Regards,
Beth

drnase

5th July 2005, 11:47 PM

Kris and crew,

That is the 64 million dollar question.

Just as a side note. I have one very close friend who is a dermatologist here in Indiana Medical School. Top notch, caring guy. Everytime I use to come in he would book me for free for a one hour session and bring in all his Residents and sit back and let me eductate. Really very cool.

Now the sad part. After Noritate was released, I finally decided to go to him for a script. It had been out for almost 8 whole months. I asked him for a script and he had NEVER heard of it. He said, Oh it must be a generic version .75%. I said, actually it is a 1% in an 82% water base for sensitive skin.

I was shocked. He should have known about this med 8 months before it was even released, let alone 8 months after.