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Thread: NYC derm for Propranalol or Clonidine? And a success story

  1. #1
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    Default NYC derm for Propranalol or Clonidine? And a success story

    Hi all - first time poster here but I have been reading archives voraciously for the past several weeks after discovering this forum. Such a wealth of knowledge, I wish I would have discovered it earlier and before my rosacea progressed to the stage it is at now.

    I just saw my derm in NYC and she refused to let me try Propranalol and/or Clonidine. Even after I showed her several printed studies she declined. Does anyone know a derm in NYC who is willing to prescribe these for rosacea?

    Thanks,
    MP

    P.S. Here is an additional positive data point on these medications. I recently discovered that my mother suffered from rosacea subtype 1 as a child and young adult. Apparently she was nicknamed "red" when she was in college. When she was in her late 20s she was diagnosed with high blood pressure and has been on Clonidine and Metoprolol (which is a beta-blocker, like Propranalol) for the past 30 years. She literally never had a flush during the past 30 years as a result! I was shocked to hear that she suffered from rosacea as a young adult because she has been quite pale as long as I can remember.

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    My dermatologist wouldn't give me a prescription for these either. I think that is often the case.

    Clonodine is a blood pressure medication so I can see whay some dermatologist aren't comfortable prescribing it.

    I'd reccomend making an appointment with an internal medicine or family practice doctor. I had no problem getting a prescription from them once I fully descriped my problem.

  3. #3
    Senior Member nat007's Avatar
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    I got my prescriptions from Prof Chu but then had to convince my local GP to go along with them and give refills. We made a deal, after I showed her the referral and all the medical data I could find (I gathered some articles on my blog btw in the Current Medication post), and I could use it for one month, then come back and she and I would evaluate if it did anything for my (really red, flushed) face yes or no. Plus keep an eye on my blood pressure.
    Skin went a few shades paler and my bp has been on the low-normal side but stable, not too low. Been on it since 2006 now and doc was convinced when she saw the improvement in rosacea.

    Maybe you can find a cooperative GP, it can be as simple as that sometimes. I'd bring some poignant prints of the positive effects of clonidine and beta blockers on hot flashes, and also that at a low maintenance dose (which is usually enough for rosacea, NOT the high dose they give to patients with high blood pressure) can stop the terrible cycle of worsening erythema and blood vessel dilation. I would really try to convince this doc how destructive and hard to treat facial flushing and burning is, how it negatively affects your life (I'd really be very graphic and honest about that, some docs just can't imagine how much it hurts) and how both clonidine and a beta blocker like propranolol have been around for many decades and are relatively safe, especially in the lower doses for rosacea treatment.

    Good luck
    Uses: 22,5 mg mirtazapine, clonidine and propranolol, Xyzal at times.
    Diet: trying low sugar, no gluten and dairy, high protein diet.
    Link to my rosacea blog:http://scarletnat.blogspot.com

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    Thank you so much all! Nat007 - your articles from your blog literally saved me here. I just saw my GP and described my symptoms and showed him pics and he was about to give me Propranalol 10mg tablets as needed, but after reading through the printouts from your website, he remarked "Wow you really did your homework... OK I'll try a higher dose with you" and gave me the 80mg extended release! Can't tell you how much I appreciate the help there. I'll keep you updated on my progress.

    BTW, I am now two weeks into Red Light therapy on Iowa Dave's setup and I have a noticeable improvement in my symptoms. I have flushed a few times since starting it but my face was not nearly as red as it was before starting the therapy. And there were also multiple situations where in the past I probably would have flushed and didn't flush at all. It is time consuming (I have been doing 20 minutes 1x per day) but well worth it so far.

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    Senior Member nat007's Avatar
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    Fantastic, glad the links helped! They helped me too at the time, getting a chance from my doc of trying these meds. As I said, and I don't want to push unnecessary medication down people's throats, but these meds are routinely used at much higher dose and with a low side effect profile; when your face and blood vessels are under daily stress from flushing, it requires some sort of intervention or else you risk making the problem progressively worse.

    Keep us updated pls how or if it works for you.
    Nat
    Uses: 22,5 mg mirtazapine, clonidine and propranolol, Xyzal at times.
    Diet: trying low sugar, no gluten and dairy, high protein diet.
    Link to my rosacea blog:http://scarletnat.blogspot.com

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    Just wanted to provide an update here. I am on my third week of extended release propranolol. This medicine has been life changing! My rosacea is vastly improved. My primary trigger was embarrassment / stress from public speaking, and I now enter my public speaking engagements and my heart rate is barely elevated and I do not flush at all. It is amazing how this medicine keeps me calm and prevents the flushing response. I wish I had found it years ago. My overall quality of life is vastly improved. I am so grateful to Nat and everyone on this site for the great insights that helped me get here!

    My secondary trigger is general biorhythm - my face and ears get flushy at around 8pm at night, particularly if I am in a warm room. The propranolol does not seem to help this much / at all. However, I had been noticing a gradual improvement in these evening flushes since I started red light therapy. The RLT seems to be working gradually to suppress / fix the flushing response in these evening flushes. I am going to continue the combo of Propranolol and RLT and will keep everyone updated on my results.

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    Hi MP1985, That's great news! It's such a relief when flushing subsides - but also not having to carry around the fear and worry of flushing.

    I tried propanolol a couple of years ago, but at about 10-20 mg and it didn't do much except lower my already pretty low BP. I'm about 5'6" and normal weight.

    What dose are you taking for the time release? I've seen that some people take 80 mg time release. I'm not sure how that works. Sounds like a lot.

    I flush at night mostly, but warm rooms and any exertion. But public speaking for me is also a huge issue. I've had to step away from that because of my combustive face.

    Do you notice being out of breath from the propanolol when you're speaking? I had a little issue of finding it hard to exercise when I took it. The slightest exertion - even casual walking - was leaving me out of breath.

    Maybe I wasn't taking it properly? Or maybe the time release is more efficient and less disruptive?

  8. #8
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    Quote Originally Posted by MP1985 View Post
    Just wanted to provide an update here. I am on my third week of extended release propranolol. This medicine has been life changing! My rosacea is vastly improved. My primary trigger was embarrassment / stress from public speaking, and I now enter my public speaking engagements and my heart rate is barely elevated and I do not flush at all. It is amazing how this medicine keeps me calm and prevents the flushing response. I wish I had found it years ago. My overall quality of life is vastly improved. I am so grateful to Nat and everyone on this site for the great insights that helped me get here!

    My secondary trigger is general biorhythm - my face and ears get flushy at around 8pm at night, particularly if I am in a warm room. The propranolol does not seem to help this much / at all. However, I had been noticing a gradual improvement in these evening flushes since I started red light therapy. The RLT seems to be working gradually to suppress / fix the flushing response in these evening flushes. I am going to continue the combo of Propranolol and RLT and will keep everyone updated on my results.
    Yaaayyy That is good news. Thanks for updating us here on that. I think improvement is the aim, as it's hard to find a cure for all of this. But a good improvement is wonderful and as my derm always tells me; don't change a winning formula. Hope you will see more improvement in time. Clonidine + propranolol help me deal better with the 8 o'clock flush which might be linked to increased body temperature in the evening plus heat coming from your digestion system after you had your meal (not to mention potential flushing triggers from what you have eaten). Try to stay cool and good luck.
    Nat
    Uses: 22,5 mg mirtazapine, clonidine and propranolol, Xyzal at times.
    Diet: trying low sugar, no gluten and dairy, high protein diet.
    Link to my rosacea blog:http://scarletnat.blogspot.com

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    HG24 - thanks for the kind words. To answer some of your questions:

    I spent two weeks on the Propranolol 80mg extended release and now I am on 120mg extended release. I am 6'0" male and 170 lbs. My understanding of the extended release is that with an 80mg tablet, there is no more than 20-30mg in your system at any given time. There are portions the capsule that your body absorbs immediately and other portions of the capsule that take time for your stomach to breakdown - the result is that you have a steady flow of 20-30mg in your system all day. My blood pressure has always been on the higher end so low BP is not an issue for me. I have not noticed being out of breath or overly fatigued.

    You might try giving the extended release a shot. As long as your blood pressure and heart rate aren't dangerously low, I have had multiple physicians tell me that Propranolol is a very safe medicine. Your body may very well adapt to the medicine over several months and you could see those side effects subside. I definitely think that for the "fight or flight" flush (such as embarrassment from public speaking) Propranolol is very helpful. You may also try Clonidine if you haven't done so yet. And just to reiterate, I think very highly of the Red Light therapy that IowaDave sells. It is not as quick of a fix as a pill and it takes some time out of your day, but it is definitely helpful and reduces the severity of the flushing by calming your skin.

    As an update on my flushing - I had another public speaking engagement yesterday and once again I was quite calm and no flushing at all. I am finding that my first reaction to stress / embarassment is to sweat rather than flush. However, I have had relatively severe nightime flushes the last three nights. My diet has been bad (I've been eating a lot of sugar and carbs in the afternoon / evening) so I am going to try to cut that down and see if it helps.

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    Quote Originally Posted by nat007 View Post
    Yaaayyy That is good news. Thanks for updating us here on that. I think improvement is the aim, as it's hard to find a cure for all of this. But a good improvement is wonderful and as my derm always tells me; don't change a winning formula. Hope you will see more improvement in time. Clonidine + propranolol help me deal better with the 8 o'clock flush which might be linked to increased body temperature in the evening plus heat coming from your digestion system after you had your meal (not to mention potential flushing triggers from what you have eaten). Try to stay cool and good luck.
    Nat
    Thanks so much Nat for all of the help! Were you able to isolate the impact of Clonidine on your flushing at all? Propranolol has really done nothing for my nightime flush and I wonder if Clonidine does more for that biorhythm flush. Also, has your physician voiced any concern over using both Propranolol and Clonidine together?

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