Clonidine

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Clonidine

Postby Lisamouries » Fri Feb 15, 2008 12:44 pm

Hi.
Well, I just got back from the derm and he suggested taking Clonidine to help with the burning and redness. Any thoughts? I am 47 (eeeeeks how did that happen????) and have very reed cheeks and chin and side of nose and forehead, kind of the whole face more or less... He sounded quite positive that this would help. Luckily I was really red when I saw him as it is very cold today in London and the hospital was very warm, perfect Rosacea condition so he saw the effect first hand.
I did ask him about IPL and Red Light Therapy and he 'poopooped' the RLT immediately saying "there are no real conclusive benefits" I didn't want to get into a whole antagonistic conversation with him so I stopped there. He didn't seem to take on too well to my internet research which is a bit of a shame. Why do consultants feel so threatened by a few open minded questions I have no idea.
Take care.
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Re: Clonidine

Postby melissaw » Fri Feb 15, 2008 2:53 pm

Hi Lisa,

I think that many doctors are threatened by the internet research because 1. They don't want to spend the extra time discussing all your questions about the info you have found from reading and 2. They are arrogant and think they know more than anyone else possibly could from these internet groups or 3. They are insecure and feel threatened (the least likely scenario since most doctors are very full of themselves IMO).

It's hard to find a doctor who is smart enough and open minded enough to really listen and even read whatever info you might bring them but if you can find someone like that you would be better off than a doc who will poo poo everything you ask about and just go about the formulaic treatment.

Many people have had success with Clonidine for flushing/burning. Just be careful because it can have serious side effects. It didn't help me and made my Raynaud's more severe but as I said it does help many other people. I once went to a flushing meds expert (referred by my primary derm) and tried the Clonidine and then stopped. He also prescribed amytriptilline (sp?) but I decided against it after reading the side effects. Some people have success with low dose antidepressants like remeron, amytriptilline, etc. Also, some have had success with H1 and H2 blockers in conjunction with Singulair. It is all a matter of trial and error and trying one new thing at a time.


I ultimately decided against the Rx meds route for now and am trialing RLT and doing VBeam. My primary derm (who does NOT do laser) is very pro laser vs. meds as controlling rosacea because it doesn't affect every system in your body and he thinks of it as less invasive that way. Good luck with whatever you decide to try now and do let us know how you get on.

Best wishes,
Melissa
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Re: Clonidine

Postby Peter » Fri Feb 15, 2008 7:49 pm

Hello Lisa M

I took Clonidine (Dixarit) for several years and found it really helped calm the blood vessels but it took several months to kick in, although I was on the lowest dose. All drugs can have side effects but I had absolutely no noticeable problems at all with Clonidine and I think all it did was gave me a dry mouth for a couple of days and lowered my BP slightly over time, which is never a bad thing.

If your dermatologist is going to monitor your progress then my advice would be to give the drug a try, as it can be effective at helping control the flushing attacks which in turn might reduce the overall redness. Be prepared to have to use the drug for a few years though, so it is important to have regular checks on your progress. If Clonidine doesn't help then Moxonodine is another which you could try.

RLT has been very effective for some with rosacea who have tried it but again it has not yet been clinically trialled and therefore there are no guarantees it will work for you. Treating rosacea is very much trial and error until you find something that works but despite what your Derm thinks why not give it a try? I have used it since 1998 and it has been extremely helpful in keeping my rosacea under control and probably in remission. Some consultants do seem intimidated by patients who have done their homework and are able to ask awkward questions which puts them on the spot. Possibly you might need to be more assertive with him when he starts his nonsense on your research and if he isn't helpful then consider changing to someone who is. If you live in or near London perhaps try getting an appointment to see Dr Tony Chu at Hammersmith Hospital?

Good luck

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Re: Clonidine

Postby Aurelia » Fri Feb 15, 2008 10:48 pm

Hi Lisa,

Sorry that your rosacea is flaring, although at least it helped the derm see how bad it gets. (Nice that you can put a positive spin on it.)

Many patients and doctors now report very real "conclusive benefits" from RLT, but research studies are definitely lacking.

Yes, antagonistic exchanges are best avoided, but in your shoes, I would print out perhaps half a dozen pages of the most authoritative reports from medical doctors to take in with you next time. I would also post him a copy now while the topic is fresh in his mind, with a friendly covering note briefly explaining that you thought he might perhaps find it interesting reading.

One key tip would be to cut and paste at the top of each report and embolden and put in larger type the qualifications and position of the doctor or researcher. Seeing just the author's name plus "M.D." or whatever, your derm might not even bother to read them. If he sees straight off that the author has two or three other impressive qualifications and is Professor of X and Y at Z University might make all the difference.

I sent some excellent papers to a doctor last year, so will hunt out the details of my selections and post them in this thread over the week-end.

Kind regards,

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Re: Clonidine

Postby Artist » Sat Feb 16, 2008 12:28 am

Lisa: Here is some research David found on IPL that may help:

http://rosacea-support.org/ipl-is-excel ... sacea.html

There is less out there on RLT. From my experience and the feedback I've seen here, though, it's a good option.

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Re: Clonidine

Postby Lisamouries » Mon Feb 18, 2008 11:36 am

Hi there.
Thank you for all those lovely replies. I couldn't access my computer this weekend as my kids were on it almost continuously, grrrr but I'll definitely give the Clonidine a go, your comments are most helpful as I was a bit worried about it. Peter mentioned he took it for 2 years, when and why did you decide to stop?

The Derm I saw is a normal NHS one recommended by my GP. If I am unhappy with him than I'll definitely try Dr Chu as Peter had mentioned him before. I just need to find a bit of spare cash... Kids are just sooooo expensive and as they get older they seem to always need more, if you know what I mean.

I've been reading about RLT for a while now on this site and really like that alternative so I think I'll dismiss the Derm's comments on that one. Love Aurelia's suggestion about sending him the research with a covering note... but I'm not sure he'd take it too well somehow. The way he answered my query was very dismissive and I could feel him tensing up as soon as I mentioned researching. At the end of the day I certainly think RLT won't be harmful if used properly so I'm not really bothered about his lack of interest. Just a shame for him and his patients not to be very enlightened.
Thanks again.
Lisa M.
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Re: Clonidine

Postby Artist » Mon Feb 18, 2008 2:40 pm

Lisa: You are most welcome. Atenolol is another beta blocker you might consider. I've taken 12.5 mg (1/2 tablet) for many years. It's curbed my social "fight or flight" blushing nearly 100%.

Cheers!

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Re: Clonidine

Postby Peter » Mon Feb 18, 2008 9:01 pm

Hello Lisa

No problem - happy to help where I can.

Lisamouries wrote:but I'll definitely give the Clonidine a go, your comments are most helpful as I was a bit worried about it. Peter mentioned he took it for 2 years, when and why did you decide to stop?


Clonidine was part of the first treatment regime Tony Chu advised me to start on when I saw him in July 1998. I stopped in May 2002 after using the drug for nearly 4 years because he felt that it had done it's job in calming my blood vessels down.

Unfortunately it can be expensive seeing these consultants privately but I would recommend Tony Chu, although be warned because he can have a 6 month waiting list, so you need to book early.

I have nearly always found that most of the critics of RLT have either never tried it themselves or are just completely ignorant of it's benefits, which I suspect applies to your Dermatologist. Some of them are so out of touch that it's frightening. I have a nearly new, portable hand held LED lamp here which I will probably sell on later this year, so if you wanted to try RLT then you can borrow it for a month or so to see if it suits you.

All the best

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Re: Clonidine

Postby Artist » Tue Feb 19, 2008 12:42 am

Peter, what is the most you've heard of someone using RLT? I've often wondered what would happen if I sat under it for an hour every day instead of 15 minutes. I'd have to rig it up so I could sleep under it in order to have the time. Just curious. Do you think there is even more benefit the longer you sit under it?

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Re: Clonidine

Postby Peter » Tue Feb 19, 2008 12:28 pm

Hello Artist

I have heard of people using RLT for several hours daily with no adverse effects. Kristen (Banshee) used the same fluorescent tube lamp as I have and then she experimented with LED, alternating between the two from what I remember. I hardly ever hear from her now but I think she did use the lamps for quite long periods so as to cover all her face and ears. Didn’t David Christian report that he used to fall asleep under his LED set up and I think Jen posted about doing this also?

Personally just 15 minute daily sessions over nearly 10 years now has worked for me and I’m not sure more is always better but it’s up to the individual to decide what suits them. If I had wanted to do increased time then I would have probably carried out 2 x 15 minutes split morning and evening. Have you really got the time to do more than 15 or 30 minutes a day? Your skin always looks great in the pictures I have seen, so why not stay with what you are currently doing as it obviously seems to be helping?

Bye

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