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 Post subject: Re: Tired of rosacea
PostPosted: Fri Sep 20, 2013 1:24 pm 
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Seagull of the PPK
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Location: Brasil
i can only imagine, VinB. not cool.
i have been pretty happy with the clarisonic, but it hasn't been the amazing change i was hoping for. rosacea-wise, my skin is about the same although i do feel that maybe my pores are a bit finer and the regular exfoliation is good. the pustules/papules seem to heal a bit faster, which is nice, but that also may be due to me making a conscious effort to leave them the hell alone.

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 Post subject: Re: Tired of rosacea
PostPosted: Fri Sep 20, 2013 6:29 pm 
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Wears Pleather Undies

Joined: Fri May 10, 2013 11:56 am
Posts: 22
Mirvaso (brimonidine tartrate gel) is in pharmacies in the US now.


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 Post subject: Re: Tired of rosacea
PostPosted: Mon Sep 23, 2013 4:29 pm 
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Loves Carrots (in the biblical sense)
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Location: Oregon
I've got an appointment with my derm in about a week and half. I tried to get in earlier but turns out she was at a conference for mirvaso. I'm looking forward to giving it a try! I might try and call in and see if they'll give me the prescription now since I'm already using the eye drops.


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 Post subject: Re: Tired of rosacea
PostPosted: Mon Sep 23, 2013 5:44 pm 
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Loves Carrots (in the biblical sense)
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Location: Oregon
Called up the derm office and there sending in the mirvaso prescription along with a coupon because my insurance wont cover it. It would cost me $280 but they're sending me a coupon and with that the most I'll have to pay is $80 which is still crazy in my opinion. I had to do the same when my doctor prescribed elidel (which didn't even work for me) and I would have to do that with finacea too but my doctor always gives me plenty of samples whenever I go in. A bit disappointing but I had a feeling this would happen, I'm still looking forward to trying it though.


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 Post subject: Re: Tired of rosacea
PostPosted: Fri Oct 18, 2013 8:14 pm 
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Loves Carrots (in the biblical sense)
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Location: Oregon
mirvaso definitely made my rosacea worse :( I actually even think I was allergic to it. I'll just use the eye drops instead now sense those seemed to work for me but I'm pretty disappointed. My skin has gone back to being really terrible I'm not sure if it's still screwed up because of the mirvaso or if it's the weather or just because but Its really got me depressed.


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 Post subject: Re: Tired of rosacea
PostPosted: Tue Oct 22, 2013 11:34 pm 
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Wears Pleather Undies

Joined: Fri May 10, 2013 11:56 am
Posts: 22
Sorry to hear that. That is what I'm reading on the rosacea forums as well -- people are saying that Mirvaso is in various ways making their problems worse.

For the last three weeks I've been trying a different approach with long-acting antihistamines and a mast cell stabilizer (sodium cromoglicate) after getting my test results back from the allergist/immunologist. It seems to be helping greatly so far, but this condition tends to cycle a bit and I'm still working up the dosage, so it will probably be another 6-8 weeks before I know for sure whether this is the way to go. No adverse effects at all so far, btw.

The doctor I consulted has the right credentials and claims that his patients with mast cell problems suffer from upper body flushing and that the cromoglicate helps, so I'm optimistic.


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 Post subject: Re: Tired of rosacea
PostPosted: Wed Oct 23, 2013 4:33 am 
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Bathes in Braggs
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right now the flushing is the same but it tends not to hurt at all? This skin thing is weird. I also tend to get really bad skin just suddenly in the day and the next morning its gone again. I really dont know what my skin is doing.

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 Post subject: Re: Tired of rosacea
PostPosted: Wed Oct 23, 2013 7:18 am 
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Seagull of the PPK
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i am in full-out flush season (welcome fall!) but so far the papule and pustule business is under control. for the time being, anyway. time to go hunting for the metrogel again.

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 Post subject: Re: Tired of rosacea
PostPosted: Wed Oct 23, 2013 9:35 am 
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Bathes in Braggs
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Its got warm again here, so maybe that's why it doesn't hurt at the moment.

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 Post subject: Re: Tired of rosacea
PostPosted: Wed Oct 23, 2013 7:23 pm 
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Loves Carrots (in the biblical sense)
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Location: Oregon
jrl definitely keep us updated! Sounds very interesting and I hope it works out well for you.

I'm looking into other doctors at the moment, I don't dislike my doctor I just feel like she doesn't know shiitake about rosacea. I live waaay out in a rural part of Oregon so i'd be nice if I could find one not too far with a good understanding of rosacea but no such luck. Looks like I'll probably be driving into Portland!

My facial flushing hurts just as bad as always at the moment but it doesn't look as bad as usual, probably thanks to the brimonidine. My upper body flushing however is probably at it's worst right now. I spend most of my days with a cold pack pressed up against my chest, I don't care if it makes it worse I just want it to feel better!


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 Post subject: Re: Tired of rosacea
PostPosted: Sun Dec 22, 2013 6:15 pm 
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Wears Pleather Undies

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Hi, the fexofenadine (generic Allegra) and sodium cromoglicate (Nalcrom) capsules continue to help a great deal with the redness and flushing but haven't completely stopped it. It took a few months to notice a consistent big difference, but for the last couple months I've had less flushing than I've had since this problem started 2010 or early 2011, despite entering the worst time of the year for my skin. I can now also tolerate things I haven't been able to in a couple years, such as hot beverages and moderate amounts of alcohol. There have been no adverse effects from the drugs.

The only downside is that Nalcrom is quite expensive: about £150/month in the UK unless you can get an NHS GP to prescribe it, and I've read people claim that it costs $1500/month without insurance in the US. A GP in the US should be able to help you if you want to try these drugs, although to get tested properly you'll likely need to see a specialist. An allergist/immunologist with an understanding of mast cell disorders as well as other disorders that can cause flushing might be your best bet. My consultations with a dermatologist who specialises in rosacea were in contrast not particularly useful.

Forgot to add, I also try to adhere to the diet described by Allergy UK here. I tend to have fewer problems when I minimise things on that list.


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 Post subject: Re: Tired of rosacea
PostPosted: Sun Dec 22, 2013 8:53 pm 
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Loves Carrots (in the biblical sense)
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That's great! I'm definitely interested in that, I need to find a good allergist because my last one was really no help at all. My skin was actually doing pretty well for awhile but just recently I discovered I was allergic to chamomile tea and now several days later my skin is still suffering!


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 Post subject: Re: Tired of rosacea
PostPosted: Sat Dec 28, 2013 5:53 am 
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Bathes in Braggs
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So... my rosacea seems to be almost gone/indefinitely better since I've reduced my hormone tablets. This winter I only got it twice so far, when I was stuck in a hot room without water for too long.

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 Post subject: Re: Tired of rosacea
PostPosted: Sun Dec 29, 2013 12:49 pm 
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Seagull of the PPK
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i've also been having a great rosacea year- only maybe 3 flushes, each time caused by stress. not one caused by hot sauce, coffee, or anything like that.

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I'm just a drunk who likes fruit. -- Desdemona


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