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 Post subject: Re: Tired of rosacea
PostPosted: Thu May 16, 2013 10:07 am 
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The doc gave me Finacea, along with anti-biotics, metrogel, desonate and something else. The finacea totally calmed my red spots and little bumps. It worked for me, that's all I can say about it.

I was given allegra and zyrtec for my allergies before they were over the counter. Not together but at different times. Both made my allergies worse. When I was on the meds my nose was running constantly, like it just wouldn't stop until I still I stopped taking the meds. And afterwards I felt like I have more allergic reactions then I did before.


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 Post subject: Re: Tired of rosacea
PostPosted: Thu May 16, 2013 3:34 pm 
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I feel like finacea works for me, that's one thing I am pretty happy about. It seems to calm the redness and it feels nice. And that's really scary about your allergies. When I can, I think I'll stop taking the antihistamines, unfortunately right now that is not an option because when I woke up this morning my hives turned into a disgusting looking rash that pretty much covers every inch of me from the neck down (because I guess rosacea wasn't enough) and I have to be on benadryl for it. If it gets worse they want me to come in for an emergency derm appointment....I don't even wanna know how much that is gonna cost. Oh life, sometimes I hate it.


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 Post subject: Re: Tired of rosacea
PostPosted: Fri May 17, 2013 3:30 pm 
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I think I'm like the only person in the world that that happened too. I can take benadryl, Duane Reade used to sell their store brand loradine or some antihistamine that started with an L, and that was fine, but now Walgreens took them over and it's off the shelves. The thing I really don't like about antihistamines is that they always like night time formula or non-drowsy, and I can't deal with the non-drowsy anything because the slightest upper makes me feel ill. Like Dayquil makes me feel nauseous and like my hearts gonna explode. And I don't always want to fall asleep either!
That sucks about your hives! I hope it gets better. Are you sure your not having reactions to the antibiotics?


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 Post subject: Re: Tired of rosacea
PostPosted: Fri May 17, 2013 11:54 pm 
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Loves Carrots (in the biblical sense)
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That's so weird sometimes I have reactions like that to certain medicines too but they're usually the pm nighttime versions. Like when I take Tylenol PM I get really restless and shaky feeling and my heart feels like it's speeding up.

I'm almost certain it is an allergy to the antibiotics so the dermatologist has me down for a tetracycline class antibiotic allergy and now that pretty much means an allergy to just about every common rosacea antibiotic there is. When I talked to them on the phone about it they said they would just do the ipl and the topicals as my only treatment and I told them that I didn't want to do that, at least not now and they were sooooo pushy about it! I'm going to have to findanother dermatologist.

My face looks worse then ever right now and hurts so bad! I don't know what to try next. I have an appointment with my regular doctor next week and hopefully this time she'll take my heartburn a bit more seriously and I can get something for my anxiety and maybe that will help at least a little with the rosacea. It feels like I'm running out of ways to treat it!


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 Post subject: Re: Tired of rosacea
PostPosted: Sun May 19, 2013 12:28 am 
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I am having the worst flare up ever, this makes all my past flare ups seem like nothing. My face literally feels like it is on fire and it's really swollen. I am in so much freakin pain. Cold compresses, splashing cool water on my face, and fans are only making it worse, it's been like this for about an hour now and I'm just at a loss. I feel like dying, I just can't handle this right now.


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 Post subject: Re: Tired of rosacea
PostPosted: Sun May 19, 2013 6:55 pm 
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oh god what is it with today, Kori?? I have had a flare ALL DAY. I just was skyping with a colleague and was shocked to see i am STILL RED. i had literally about half an ounce of coffee this morning. How can this be???? SNARL

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 Post subject: Re: Tired of rosacea
PostPosted: Sun May 19, 2013 8:50 pm 
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National flare up for no apparent reason day I guess! Why is it so hard to get this forking this under control? You'd think by now they'd have some sort of fix for flushing and flare ups besides their not very effective antibiotics and fishy lasers.


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 Post subject: Re: Tired of rosacea
PostPosted: Fri May 24, 2013 4:06 pm 
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Loves Carrots (in the biblical sense)
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Going to the doctor in a little bit, have a huuuuge list of things to talk about most of them related to rosacea. I'm so nervous! Wish me luck.


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 Post subject: Re: Tired of rosacea
PostPosted: Fri May 24, 2013 4:45 pm 
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hope you get something good. i've pretty much been bright red since i posted last. i hate this time of year and can't WAIT to leave soon.

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 Post subject: Re: Tired of rosacea
PostPosted: Fri May 24, 2013 9:29 pm 
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That's the worst! I hope your face feels better soon, having a flare up that lasts days is really awful. I wish doctors took rosacea a bit more seriously, most of them just don't seem to have many answers for us. Luckily my doctor appointment went pretty good, we talked a lot and I brought up my veganism for the first time to her and she thought it was fantastic and told me about her vegetarian daughter and how she was in the process of becoming vegan. We also talked about my anxiety and ocd and that in relation to my rosacea and she wants to try me on a low dose of prozac and she wants me to try propranolol again but at a slightly higher dose she thinks those two together might cut down on the flushing and just make me feel a little bit better in general. I'm going to see her again in three weeks so she can check on my progress.

Also on Tuesday I saw a different dermatologist, I had seen her before but never for my rosacea and it went good. She was honest which although a bit depressing I really appreciated, she told me the antibiotics I was taking even if I wasn't allergic to them they still wouldn't have helped me because they are more for the bumps and pustules then the redness and flushing and the same goes for IPL. It was nice to see a derm that doesn't try and force the IPL on you. She also prescribed me Brimonidine which is a bit controversial but she thinks I should give it a go. It's actually eye drops (I think for glaucoma?) but they're working on a gel made from it that will be available in a few years that will help with redness and flushing for some and for now she prescribed them to me off label so I just mix them with my finacea and apply it twice a day. So far I haven't noticed a difference but I'm still happy to try.


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 Post subject: Re: Tired of rosacea
PostPosted: Sat May 25, 2013 5:36 pm 
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I hope you find the topical brimonidine helpful. A number of people on some rosacea forums tried putting the brimonidine eyedrops on their face and found that it suppressed flushing, but that they got horrible and long-lasting flushing (much worse than usual) as each dose wore off. I imagine some people have had better results with brimonidine since some dermatologists are recommending the eyecare formulation to patients.

Anyhow, supposedly the brimonidine formulation that Galderma is making for rosacea won't cause this rebound flushing.
Galderma has applied for FDA approval for their brimonidine product according to this, so maybe we will hear more about that soon.

If you don't find that or the propranolol helpful, I'd still suggest looking into other beta blockers or clonidine. Clonidine is in the same class of drugs as brimonidine (alpha receptor agonists), just taken orally instead of topically. All these drugs either inhibit peripheral vasodilation (beta blockers) or cause peripheral vasoconstriction (alpha agonists), which can help suppress flushing from a variety of causes including rosacea. In my experience they're rarely a cure except in mild cases (despite my dermatologist telling me things like '50% of people with subtype 1 rosacea just need clonidine'), but they can help greatly with symptoms.

Personally I am probably going to talk to my dermatologist about antimalarials like mepacrine or hydroxychloroquine, since he has found them very helpful in a subset of patients with treatment-resistant flushing and anecdotally I know of several people who claim antimalarials finally stopped them from flushing. They can have serious side effects and can take weeks to fully eliminate from your body, though, so I'm not sure if this is something I want to pursue. I still get substantial flushing on and off all day, but it's nowhere near as bad as it was about 16 months ago.


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 Post subject: Re: Tired of rosacea
PostPosted: Sun May 26, 2013 8:42 pm 
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Loves Carrots (in the biblical sense)
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I had heard about the terrible rebound flushing and it really made me nervous to try it but I figured I'd never know unless I gave it a shot and so far nothing has happened, good or bad. But it's still early, I've been using it for about 6 days so far. The formulation they're working on sounds very interesting though, I hope if it gets approved it's something that will be able to help a lot of people!

So far nothing has really changed for me but I wasn't expecting to get drastic improvement quickly. There are a lot more treatment options for rosacea then I initially thought which is a good thing but I hope I don't have to try too many before I find something that can help me. I want to get back to my life but at the moment my rosacea is just too out of control! I am very interested in Clonidine, if what I'm currently trying doesn't seem to be helping by my next appointment I will ask my doctor about it.


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 Post subject: Re: Tired of rosacea
PostPosted: Mon Aug 26, 2013 7:42 pm 
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I wanted to post about a couple things in this old thread as a follow-up to previous discussion:

1) Mirvaso (the new name for the brimonidine tartrate gel previously referred to as Sansrosa) got FDA approval today. There's a press release here. If it performs as well as it supposedly did in the clinical trials, this is the first FDA-approved treatment for the redness and flushing associated with rosacea as opposed to the inflammatory bumps. This isn't a treatment for any underlying cause in my opinion, but could still provide some major relief of symptoms.

2) There is some recent research on a disorder that causes flushing called mast cell activation syndrome. Here are a couple recent papers written at a generalist level:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3069946/

http://people.musc.edu/~afrinl/MCAS_Pri ... 202011.pdf

I saw an immunologist about my ongoing flushing problems a couple weeks ago, and what he told me is that disorders involving mast cells and histamine were until the last few years thought to be limited to allergies and mastocytosis, but in the last couple years mast cell activation syndrome has been added as a separate category.

According to him, the primary symptom of mast cell activation syndrome is upper body flushing. Patients with the disorder frequently have intolerances to foods containing substances that can cause vasodilation, for example the tannins in red wine and the histamine in aged cheeses (not the best example for this site, I know). The disorder, as I understand the literature, is related to release of substances from mast cells -- either histamine or in some cases leukotrienes or prostaglandin d2. Histamine levels can be tested in the urine and blood in the UK, but leukotrienes and prostaglandin d2 can only be tested by a couple labs in the US (Mayo Clinic and one other I forgot).

Some people are also deficient in an enzyme called diamine oxidase that breaks down histamine. This can be tested for in the UK and US (can't remember whether it's a urine or blood test, or both).

Treatments are antihistamines and mast cell stabilizers like sodium cromoglicate. Sometimes montelukast is added to inhibit the leukotriene pathway. He told me there is a difference in how the disorder is treated in the UK vs US; I think he meant that ketotifen is used instead of sodium cromoglicate in the US.

There is also another disorder called histamine intolerance, and I'm not sure whether this is something separate or if it overlaps with mast cell activation syndrome.

So anyhow, he ordered all these tests & others, along with serum tryptase to rule out mastocytosis and urine 5-HIAA to rule out carcinoid, and I get the results in a couple more weeks. Hopefully it will turn up something useful.

I thought this information might useful to people who've posted in this thread with similar flushing problems, particularly if you respond to antihistamines. An allergist or immunologist who's relatively up to date ought to be familiar with the literature on mast cell activation syndrome. By the way, the doctor I consulted said something like "Every med student knows to run tests for carcinoid and pheochromocytoma if the patient is flushing," so it might be worth talking to your GP about running those tests if you have flushing problems and haven't already ruled out those diagnoses.


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 Post subject: Re: Tired of rosacea
PostPosted: Mon Aug 26, 2013 10:03 pm 
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Loves Carrots (in the biblical sense)
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Thank you for all this information, I appreciate the update. Although I've had some improvement it's still not where I'd like to be. The news about Mirvaso is exciting, I hope it's helpful to a lot of us suffering from flushing. I have seen some improvement with brimonidine so I'm very interested in trying Mirvaso. I will definitely let my GP know I am interested in those tests next time I see her which is soon. I hope you're able to find something out from the tests!


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 Post subject: Re: Tired of rosacea
PostPosted: Tue Aug 27, 2013 1:39 am 
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My doctors both said as long as I'm not in pain it's just a cosmetical issue and I shouldn't do anything, except avoid alcohol and caffeine. I don't drink alcohol anyway and I try to avoid caffeine now.

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 Post subject: Re: Tired of rosacea
PostPosted: Tue Aug 27, 2013 9:35 pm 
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That's good that yours is not painful, for me it doesn't look attractive but the pain is definitely the worst part. Rosacea comes in so many forms I hope some day doctors can better understand it because atm it seems like some of them can barely spot it, at least in my experience. I never really drank alcohol either so that was easy to avoid but caffeine was a little bit harder, I feel better without it though but it hasn't made in difference in my rosacea. I feel like cutting down on sugar has helped though and right now I'm trying gluten free.


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 Post subject: Re: Tired of rosacea
PostPosted: Wed Aug 28, 2013 1:46 am 
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For me I know not getting fresh air for too long triggers it. Which is shitty if I'm in university in a room full of 40 people and I can't just leave class. It does hurt in the moment of the flush but not afterwards.

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 Post subject: Re: Tired of rosacea
PostPosted: Wed Aug 28, 2013 6:43 am 
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i don't care too much about the flush (it is painful, but it passes), but i wish more doctors knew more. i had one doctor who was really knowledgeable. everyone else seems to have no idea.
one doc was nuts for me to take accutane, another told me if i stopped using anything on my skin it would go away, another told me every time i flush the rhinopymas (?) on my nose get bigger (i have two tiny nodes that i will have lasered if it ever comes to that, but what the fizzle, am i pinocchio? i have never read that ANYWHERE, also patently untrue as they`re still pinpoint size). Now basically I keep updated about what's new and when i need to i go to the doctor, any doctor, and say "hi i have rosacea and my perioral dermatitis is acting up, can you prescribe me 1% metrogel and doxycycline for 6 weeks".

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 Post subject: Re: Tired of rosacea
PostPosted: Wed Aug 28, 2013 6:44 am 
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i don't care too much about the flush (it is painful, but it passes), but i wish more doctors knew more. i had one doctor who was really knowledgeable. everyone else seems to have no idea.
one doc was nuts for me to take accutane, another told me if i stopped using anything on my skin it would go away, another told me every time i flush the rhinopymas (?) on my nose get bigger (i have two tiny nodes that i will have lasered if it ever comes to that, but what the fizzle, am i pinocchio? i have never read that ANYWHERE, also patently untrue as they`re still pinpoint size). Now basically I keep updated about what's new and when i need to i go to the doctor, any doctor, and say "hi i have rosacea and my perioral dermatitis is acting up, can you prescribe me 1% metrogel and doxycycline for 6 weeks".

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 Post subject: Re: Tired of rosacea
PostPosted: Fri Aug 30, 2013 9:26 pm 
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VeganinBerlin, that's the same for me! Increasing my time outdoors has been really helpful in calming it down. Mine hurts when it flushes and sometimes I will have moments where I feel like I'm having a painful flush but when I look in the mirror my face looks fine.

torque, My doctor and past doctors and dermatologists I've had know nothing or very little about rosacea also. My current derm is the best so far but I also do a lot of my own research because my past experiences have made me not very trusting of doctors, if one of them had just recognized that I had rosacea to begin with and I could have got it under control early on I'm sure things would have not gotten as bad as they did! Sometimes it feels like doctors don't care about learning more about it, I know it's not as terrible as a lot of other problems but I feel like there needs to be more awareness.


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 Post subject: Re: Tired of rosacea
PostPosted: Thu Sep 19, 2013 1:30 pm 
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Seagull of the PPK
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oh fall, how i hate thee. coffee is now completely forbidden, but the weather is making me flush like a... tomato? stopsign? red apple? ugh.

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 Post subject: Re: Tired of rosacea
PostPosted: Thu Sep 19, 2013 1:59 pm 
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Bathes in Braggs
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I wonder if kicking tea and chocolate could help, too. The past weeks have been horrible.

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 Post subject: Re: Tired of rosacea
PostPosted: Thu Sep 19, 2013 3:36 pm 
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Yeah these past two weeks have been bad for my rosacea :( partially due to a medication change and I've been eating a bit worse then usual..... also exercising less. Consistent exercise has helped my rosacea a lot for some reason.


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 Post subject: Re: Tired of rosacea
PostPosted: Thu Sep 19, 2013 4:47 pm 
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Seagull of the PPK
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VeganinBerlin wrote:
I wonder if kicking tea and chocolate could help, too. The past weeks have been horrible.

i'll give up coffee, and even chocolate, but not tea, nor alcohol. cold dead hands, etc etc. there are limits.

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 Post subject: Re: Tired of rosacea
PostPosted: Fri Sep 20, 2013 12:20 am 
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I really like herbal tea, so that's okay. I just hate having to mull over what I can and can't eat in regards to this. Its bad for my mental health eating disorder-wise.

I'm also thinking about buying a clarisonic and unsure what my skin would think of it.

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