anybody else taking plaquenil notice dry mouth or red eyes? i ALREADY have both of these, and maybe im just paranoid, but they feel a little bit worse.

It won't make your eyes or mouth worse. It is used to TREAT dry eyes and mouth (often reffered to as sjogren's syndrome)

Myleastfavorite

I have been on it almost for a month too,has not kicked in for flushing/redness yet but honestly its only been a about a month and these drugs are weird and kick in randomly

I remember Mepacrine at the month mark was not kicking in and I was really bummed and sad but then like a week later it just randomly kicked in very significantly

and no I have not had the dry eyes/mouth if anything my eyes have been better (they always got very dry)

so far no eye changes that I have noticed

lamar does it make u sun sensitive though..

Myleastfavorite

 

I have been on it almost for a month too,has not kicked in for flushing/redness yet but honestly its only been a about a month and these drugs are weird and kick in randomly

 

I remember Mepacrine at the month mark was not kicking in and I was really bummed and sad but then like a week later it just randomly kicked in very significantly

 

and no I have not had the dry eyes/mouth if anything my eyes have been better (they always got very dry)

 

so far no eye changes that I have noticed

 

lamar does it make u sun sensitive though..

"lamar does it make u sun sensitive though.."

are you asking him? or are you saying lamar says it made him sun sensitive?

i was told by a derm that i email that lac hydrin is bad for rosacea. i found it good for moisturizing and it helps exfoliate since i cannot really wash my face at all. i know lac hydrin does probably make u more sensitive to sun so that probably dont help rosacea like symptoms. any tips fora new moisturizer (non exfoliant kind -- which is lac hydrin)??

this sucks this sucks this sucks.

some dermatologist i emailed gave me some names for people out of state who are have "Decades of expertise with accutane". they are at UPENN. well 2 at UPENN one at Iowa, but i cant find his email yet. so I emailed to two UPENN guys just now. i dunno, i just cant believe there isnt like a seminal researcher or voice on these whole-body damages from accutane and what the latest most effective treatments are.

SHANTELLE,

what do you do for the seborrheic dermatitis on your nose? i think i have the same thing, but its weird. my whole face is dried up, except my nose is oily. but then the corners of my nose/nostrils get red and flakey when they get dry. desonide (SP?) cream is the most effective treatment but I am told that its bad to use it too much. its weird cuz my nose gets oily and my derm tells me its gonna cause problems (like rhinophyma?) then the redness at the corners seems to get worse when it is dry. so i find myself like washing to my nose EXCEPT the corners, lol, and in fact moisturizing those. even needing vaseline on the corners.

No,I was asking if plaquenil makes you sun sensitive..i heard from some forums it does and some it does not..

yeah i have to change my earlier position and say that, between the plaquenil and the brimonidine eye drops that i topically apply to my face, my flushing has improved.

the brimo drops seem more like an immediate thing sort of like lidocaine but better and not greasy.

i began using both of them at the same time, so i cant really tell which is better. but i am fairly certain both have effects, but in different ways.

i just got really discouraged when i tried exercising the other night and had a huge flushing outbreak to the point that i had to stop working out. I used to play 3 sports in high school, but post-accutane I can barely exercise without all sorts of discomforts. SUCKS SUCKS SUCKS.

gosh you guys, i really feel like accutane/claravis raped my body. i was never like this. i had mild acne and i really just randomly took accutane in my last semester of high school thinking "hey my grades dont count anymore, this high school is a prison and i hate it with a passion, but i have to finish this semester, so in the mean time why dont i just do this and ill have an extra edge for college!"...to think that if i just dropped out of high school right at that moment instead, it would been a 10 fold healthier decision.

at its absolute worst, any acne breakout probably bothered me at most 5% what all these post-accutane side effects bother me. literally. yes i would get a little self conscious about a pimple or two, but i would never do something so crazy as to not leave my house. which happens now all the time. i avoid old friends, i avoid meeting new people like the plague. no self esteem. i cant even imagine dating. it's sad. even with a few pimples, i remember still getting gitty when i met a cute guy and trying to initiate flirtation.

now i just feel like such damaged goods. the other day i turned and asked the nearest person around me where a certain building was. and he happened to be another gay guy, and he was actually really sweet and friendly and totally my type. yet i just paralyzed in fear, repeated his directions to make sure i heard them correctly, and ran away. yet at the same time i can just vividly see myself, the old me, flirting, joking, and with a healthy amount of nerves, mustering the courage to ask his plans for the weekend, and then after a moment of awkward silence, his phone number.

my life is really a nightmare if im honest about it. even in platonic social situations i feel so damaged. its awkward to get kissed on the cheek. my mouth is so dry i foam at the mouth when i talk too long. i have no saliva for kissing or oral sex. i know, vulgar/TMI, but think about it, it sucks. my hair feels like dry hay...and i have terrible dandruff now. i used to be so fit and active, now im overweight cuz exercising is so uncomfortable.

im not saying my situation is worse than other people's. but i know some people probably were depressed over their acne and maybe it was more severe than mine and they really thought about it for a long time and decided it was worth the risk. but i never had an "acne problem" and if i could have just survived those last few months of high school without making such a stupid rash decision, i never would have touched accutane. it was just like a perfect storm of all these things. and life is cruel....right after i took accutane, i moved on to a great college that i had worked so hard to get accepted into...in a wonderful new enriching environment, where, compared to my previous oppressive school and family life, up-was-down and down-was-up, and i was surrounded by so many incredible people and experiences and opportunities. it really would have been "my time." and i did have great moments. but it soon became apparent that these symptoms were here to stay and i would be haunted and anchored down by that one mistake forever. so right on the eve of "my time" i allowed myself to be raped by the stupid medication, and my body has been so uncomfortable to live in ever since. the timing of it feels so cruel. and it feels like an out of body experience when i look back because it was really so uncharacteristic of myself to do something so stupid like this, but when your environment is making you unhappy, you make stupid decisions, and all it takes is one time. my life has just literally been a nightmare ever since. and the timing just pains me. but its like that alanis morrisette song ..... winning the lottery and dying the next day. or something.

and i try to get motivated at times and tell myself "ok, im gonna recycle this into something positive and be like the erin brokavich of accutane!", but honestly it just pains me to even read about some of this. if i saw my old dermatologist on the street. i wouldnt yell at him. i wouldnt cry. honestly, i would just crumble into a ball and have an anxiety attack and hide.

i really don't know what's going to happen to me. but im running out of things to try and gusts of inspiration to try to renovate and repair my life. i've tried to find painless ways to end my life but i end up just getting scammed there too. i have a couple friends who have taken accutane. and they aren't even as bothered or traumatized as i am. but i get sick to my stomach sometimes when i see their deep wrinkles or flushing. even my psychiatrists are worn out by me. and ive seen many. honestly, it would be far more therapeutic if i could redistribute all those minutes talking to a psychiatrist to a dermatologist well-verse in the whole body effects of accutane.

i remember when i was younger i was mystified by people who committed suicide. i always thought "if i ever got liek that, i would just run away to some beautiful place and live simply and peacefully." never did i think i would find myself in a situation where the idea of an exotic place no longer represents an escape but rather evokes immediate and legitimate concern over my permanent heightened sensitivity to the sun and my skin's inability to tolerate any normal contact with water.

i have panic and anxiety attacks all the time, which just tandems with my accutane-induced-rosacea to form a vicious flushing cycle. i have had professors approach me out of concern based on my forlorn appearance. or even had professors email my advisor about me for the same reason.

i really just cant believe this has happened to me. i used to wake up from a bad nightmare and sigh "phew it was just a dream". now it's the opposite.

i just cant believe any of this. and to think doctors just shrug it off or even find it offensive that i would be unsatisfied, when for years all i got was "thats not happening, just give it time, it will return more to normal." maybe thats my calling. to be a nagging pest or gadfly to the dermatology profession. im running out of time and im running out of shame. this is just the most bizarre set of problems to have. i really wish i could just move on and say hey, ill just go after X% uglier guys and settle for X% less happiness and excitement. but it really doesn't work that way. im in a new category.

isndfjanviuweboiwrsvnhqduiqwnflknvsbvhucbqeofwlnvs,abvhdbfiuwenvie

No,I was asking if plaquenil makes you sun sensitive..i heard from some forums it does and some it does not..

Halfpipe - I can say for me it hasn't, but I tend to put spf on anyway and stay out of the sun for long periods of time if it is really hot. I can say no flushing out in the sun.

You have to give plaquenil at least 4-6 months for the full effect.

Though I am stilling holding out on hope for my joints. Can say they are slightly better, but I now have ankle problem and still have pain, just not as extreme. Flushing and other things are better.

Myleastfavorite

 

I have been on it almost for a month too,has not kicked in for flushing/redness yet but honestly its only been a about a month and these drugs are weird and kick in randomly

 

I remember Mepacrine at the month mark was not kicking in and I was really bummed and sad but then like a week later it just randomly kicked in very significantly

 

and no I have not had the dry eyes/mouth if anything my eyes have been better (they always got very dry)

 

so far no eye changes that I have noticed

 

lamar does it make u sun sensitive though..

 

 

"lamar does it make u sun sensitive though.."

 

are you asking him? or are you saying lamar says it made him sun sensitive?

 

i was told by a derm that i email that lac hydrin is bad for rosacea. i found it good for moisturizing and it helps exfoliate since i cannot really wash my face at all. i know lac hydrin does probably make u more sensitive to sun so that probably dont help rosacea like symptoms. any tips fora new moisturizer (non exfoliant kind -- which is lac hydrin)??

 

this sucks this sucks this sucks.

 

some dermatologist i emailed gave me some names for people out of state who are have "Decades of expertise with accutane". they are at UPENN. well 2 at UPENN one at Iowa, but i cant find his email yet. so I emailed to two UPENN guys just now. i dunno, i just cant believe there isnt like a seminal researcher or voice on these whole-body damages from accutane and what the latest most effective treatments are.

 

SHANTELLE,

 

what do you do for the seborrheic dermatitis on your nose? i think i have the same thing, but its weird. my whole face is dried up, except my nose is oily. but then the corners of my nose/nostrils get red and flakey when they get dry. desonide (SP?) cream is the most effective treatment but I am told that its bad to use it too much. its weird cuz my nose gets oily and my derm tells me its gonna cause problems (like rhinophyma?) then the redness at the corners seems to get worse when it is dry. so i find myself like washing to my nose EXCEPT the corners, lol, and in fact moisturizing those. even needing vaseline on the corners.

 

Heya

Re Seb Derm- I was on Sporanox anti-fungal capsules for a month and a half and even that is a long time to be on the medication. Apparently antifungal oral meds can damage your liver and cause heart problems- hence why i'm sticking to a liver cleansing diet to get rid of as much medication toxins as possible (fish, chicken, wholegrains, homemade bread, tons water, honey, nuts/seeds, tons veges and fruits (excluding those with high Vit A for now...). Can't hurt right?? Sometimes have a treat though- only human.

Also recommend getting some Miconazole antifungal cream and use very sparingly if you have sensitive thin skin like mine. Derm recommends using twice daily but my skin can only handle once a day. I'm sure a normal GP could see you, discuss and prescribe for you if Seb dermatitis diagnosis is agreed. And yes- SD only affects the oily parts.

A couple times a week, I also fill the basin half up with lukewarm water and add literally 1 cm worth of Heads 'N Shoulder shampoo with the 1% pyrithicone zinc (this apparently kills yeast - only based on my internet research mind you...). Recently, I've ordered a Dermadoctor cleanser specifically made for the face. It should arrive in a few weeks (i'm way over in New Zealand) but there have been some good reviews on the stuff. Apparently with this cleanser, you have to follow the instruction VERY carefully though to avoid reported burning sensations. I'm hoping this will get rid of my SD for good- can only try! : http://www.dermadoctor.com/product_DERMAdo...anser_1527.html

I've also read good reviews in this website's SD thread on using raw honey on SD skin. I haven't tried this as believe my skin is to fragile at the moment (I.E i never scrub my face, so i'd never be able to get the honey off).

Also look into B vitamins - i've read that a deficiency in one of the B6 Vit can cause SD. E.g. as noted here- http://www.salugenecists.com/genpage.php?t...nt&dbid=108

Haven't heard of desonide (SP?) cream. Probably has another name in NZ??

My GP asked if I was having panic attacks the other week too, when i told him about a couple random chest pains (not severe, occurs randomly) and when I asked for blood tests re flushing. Dad says I could panicking when I enter a room and can see no windows or doors are open and work myself up (he has noticed I check fresh air is coming into the room lol and knows to open the door up for me). Also, I know what you mean about sports- I co-coach my younger sister's netball team and I can't even join in the game at training (hard to breath, and flushing). So generally I just ref, but i'd like to do so much more, and even play for a netball team myself. This just isn't physically possible right now- but I do hold hope for next year.

My Vit A results came back normal (predicated by Oli Girl). So- now my GP has asked for tests to be sent to an Endocrinologist. I think she is concerned about hormones (first having severe acne and now having flushing issue). Obviously I know these are likely to come back normal (like everything else does) but I figure they have to start with the basics and then maybe will be open to my suggestions if Doxy doesn't start kicking-in soon re anti-inflammatory effect. My Derm refused to believe Accutane and Minocycline caused my bad flushing so I'm not going to see him anymore, and i'm currently relying more on my GP's help (who actually seems way more helpful/open/easier to talk too anyway).

We can all only try to keep positive; hope this info helps a little. You might already be reading Rosacea forums for info on flushing and treatments, but if not could be worth a shot to gain info.

No,I was asking if plaquenil makes you sun sensitive..i heard from some forums it does and some it does not..

Hey, I just read through you post. It's really sad to hear how horribly this condition has got you down and makes me angry to think about how this can just happen. It sounds as though it has been especially bad for you "i.e. no saliva/ dry hair" ect. so I won't pretend I can completely understand. I can however sympathize with the utter frustration of having no control over your life. For me that is the hardest part, coming to terms with the fact that there is something happening that I can do little to nothing about. It's infuriating.

For me I try my best to focus on what I can do as opposed to what I can't. Since I can't go to the gym because my flushing draws to much attention - I run at night. Turns out I now love running at night. Not only does the cool breeze feel nice on my skin but I am completely alone out there. Free from scrutiny.

Okay so drinking any amount of alcohol in a bar will make me light up like the fourth of July. Switch to cool water indoors and encourage your friends to drink outside. (again, a little redness goes fairly unnoticed in the dark).

The age-old remedy of flipping the negative into a positive is far more effective in theory. I have on so many occasions had to smile my way through (what I perceived to be) a room full of confused stares, and even though I was smiling I did not feel all that positive. I could only think of the lost opportunity. How much fun I could have had if free'd from the prison which is my own skin! Now looking back however - I can recognize something I did not before.

I am so proud of myself for living my life as normal even though I fell down. It is so hard to even get up somedays that we are blinded to the personal triumph that it is. I believe that when the fog has cleared in this blip in my long life, I will look back and think highly of the way I drudged through. I think you will too.

I am turning 22 next week and I think this kind of condition is especially damaging mentally at this stage in life. As we see youth slip away, we are bombarded with more physical detriments to make us think that our lives are pretty much over. The truth is that there is so much beyond that vail of youth, and the sooner we realize that the sooner we can all start living our lives.

For me - acne didn't just leave me with this flushing condition, but scars as well. I feel older then I am and regrettably often have a hard time taking my own advice here. But I am really trying to A) think less about these trivialities and B) find new things in life to be excited for. I too feel anxious on occasion... (waiting for this thing to CEASE FIRE is practically artery clogging) but I want so much to look to the future and not dwell on the present.

I don't know if anything I can say will help you out but I hope it does. Life is so beautiful when we stop thinking only about ourselves and spending our days in our own shadow. That beach you thought you could run away too in a time of serious depression doesn't have to literally be a beach. It could be a book you wanted to read, a good friend who you can share everything with and laugh about it afterwards, it can be repainting your room, studying a new language... ANYTHING to keep your mind off of the things you hate because really what your trying to run away from are your own negative thoughts.

Okay, enough Dr. Phil talk...

love and peace

yeah i have to change my earlier position and say that, between the plaquenil and the brimonidine eye drops that i topically apply to my face, my flushing has improved.

 

the brimo drops seem more like an immediate thing sort of like lidocaine but better and not greasy.

 

i began using both of them at the same time, so i cant really tell which is better. but i am fairly certain both have effects, but in different ways.

 

i just got really discouraged when i tried exercising the other night and had a huge flushing outbreak to the point that i had to stop working out. I used to play 3 sports in high school, but post-accutane I can barely exercise without all sorts of discomforts. SUCKS SUCKS SUCKS.

 

gosh you guys, i really feel like accutane/claravis raped my body. i was never like this. i had mild acne and i really just randomly took accutane in my last semester of high school thinking "hey my grades dont count anymore, this high school is a prison and i hate it with a passion, but i have to finish this semester, so in the mean time why dont i just do this and ill have an extra edge for college!"...to think that if i just dropped out of high school right at that moment instead, it would been a 10 fold healthier decision.

 

at its absolute worst, any acne breakout probably bothered me at most 5% what all these post-accutane side effects bother me. literally. yes i would get a little self conscious about a pimple or two, but i would never do something so crazy as to not leave my house. which happens now all the time. i avoid old friends, i avoid meeting new people like the plague. no self esteem. i cant even imagine dating. it's sad. even with a few pimples, i remember still getting gitty when i met a cute guy and trying to initiate flirtation.

 

now i just feel like such damaged goods. the other day i turned and asked the nearest person around me where a certain building was. and he happened to be another gay guy, and he was actually really sweet and friendly and totally my type. yet i just paralyzed in fear, repeated his directions to make sure i heard them correctly, and ran away. yet at the same time i can just vividly see myself, the old me, flirting, joking, and with a healthy amount of nerves, mustering the courage to ask his plans for the weekend, and then after a moment of awkward silence, his phone number.

 

my life is really a nightmare if im honest about it. even in platonic social situations i feel so damaged. its awkward to get kissed on the cheek. my mouth is so dry i foam at the mouth when i talk too long. i have no saliva for kissing or oral sex. i know, vulgar/TMI, but think about it, it sucks. my hair feels like dry hay...and i have terrible dandruff now. i used to be so fit and active, now im overweight cuz exercising is so uncomfortable.

 

im not saying my situation is worse than other people's. but i know some people probably were depressed over their acne and maybe it was more severe than mine and they really thought about it for a long time and decided it was worth the risk. but i never had an "acne problem" and if i could have just survived those last few months of high school without making such a stupid rash decision, i never would have touched accutane. it was just like a perfect storm of all these things. and life is cruel....right after i took accutane, i moved on to a great college that i had worked so hard to get accepted into...in a wonderful new enriching environment, where, compared to my previous oppressive school and family life, up-was-down and down-was-up, and i was surrounded by so many incredible people and experiences and opportunities. it really would have been "my time." and i did have great moments. but it soon became apparent that these symptoms were here to stay and i would be haunted and anchored down by that one mistake forever. so right on the eve of "my time" i allowed myself to be raped by the stupid medication, and my body has been so uncomfortable to live in ever since. the timing of it feels so cruel. and it feels like an out of body experience when i look back because it was really so uncharacteristic of myself to do something so stupid like this, but when your environment is making you unhappy, you make stupid decisions, and all it takes is one time. my life has just literally been a nightmare ever since. and the timing just pains me. but its like that alanis morrisette song ..... winning the lottery and dying the next day. or something.

 

and i try to get motivated at times and tell myself "ok, im gonna recycle this into something positive and be like the erin brokavich of accutane!", but honestly it just pains me to even read about some of this. if i saw my old dermatologist on the street. i wouldnt yell at him. i wouldnt cry. honestly, i would just crumble into a ball and have an anxiety attack and hide.

 

i really don't know what's going to happen to me. but im running out of things to try and gusts of inspiration to try to renovate and repair my life. i've tried to find painless ways to end my life but i end up just getting scammed there too. i have a couple friends who have taken accutane. and they aren't even as bothered or traumatized as i am. but i get sick to my stomach sometimes when i see their deep wrinkles or flushing. even my psychiatrists are worn out by me. and ive seen many. honestly, it would be far more therapeutic if i could redistribute all those minutes talking to a psychiatrist to a dermatologist well-verse in the whole body effects of accutane.

 

i remember when i was younger i was mystified by people who committed suicide. i always thought "if i ever got liek that, i would just run away to some beautiful place and live simply and peacefully." never did i think i would find myself in a situation where the idea of an exotic place no longer represents an escape but rather evokes immediate and legitimate concern over my permanent heightened sensitivity to the sun and my skin's inability to tolerate any normal contact with water.

 

i have panic and anxiety attacks all the time, which just tandems with my accutane-induced-rosacea to form a vicious flushing cycle. i have had professors approach me out of concern based on my forlorn appearance. or even had professors email my advisor about me for the same reason.

 

i really just cant believe this has happened to me. i used to wake up from a bad nightmare and sigh "phew it was just a dream". now it's the opposite.

 

i just cant believe any of this. and to think doctors just shrug it off or even find it offensive that i would be unsatisfied, when for years all i got was "thats not happening, just give it time, it will return more to normal." maybe thats my calling. to be a nagging pest or gadfly to the dermatology profession. im running out of time and im running out of shame. this is just the most bizarre set of problems to have. i really wish i could just move on and say hey, ill just go after X% uglier guys and settle for X% less happiness and excitement. but it really doesn't work that way. im in a new category.

 

 

isndfjanviuweboiwrsvnhqduiqwnflknvsbvhucbqeofwlnvs,abvhdbfiuwenvie

Hey, I just read through you post. It's really sad to hear how horribly this condition has got you down and makes me angry to think about how this can just happen. It sounds as though it has been especially bad for you "i.e. no saliva/ dry hair" ect. so I won't pretend I can completely understand. I can however sympathize with the utter frustration of having no control over your life. For me that is the hardest part, coming to terms with the fact that there is something happening that I can do little to nothing about. It's infuriating.

For me I try my best to focus on what I can do as opposed to what I can't. Since I can't go to the gym because my flushing draws to much attention - I run at night. Turns out I now love running at night. Not only does the cool breeze feel nice on my skin but I am completely alone out there. Free from scrutiny.

Okay so drinking any amount of alcohol in a bar will make me light up like the fourth of July. Switch to cool water indoors and encourage your friends to drink outside. (again, a little redness goes fairly unnoticed in the dark).

The age-old remedy of flipping the negative into a positive is far more effective in theory. I have on so many occasions had to smile my way through (what I perceived to be) a room full of confused stares, and even though I was smiling I did not feel all that positive. I could only think of the lost opportunity. How much fun I could have had if free'd from the prison which is my own skin! Now looking back however - I can recognize something I did not before.

I am so proud of myself for living my life as normal even though I fell down. It is so hard to even get up somedays that we are blinded to the personal triumph that it is. I believe that when the fog has cleared in this blip in my long life, I will look back and think highly of the way I drudged through. I think you will too.

I am turning 22 next week and I think this kind of condition is especially damaging mentally at this stage in life. As we see youth slip away, we are bombarded with more physical detriments to make us think that our lives are pretty much over. The truth is that there is so much beyond that vail of youth, and the sooner we realize that the sooner we can all start living our lives.

For me - acne didn't just leave me with this flushing condition, but scars as well. I feel older then I am and regrettably often have a hard time taking my own advice here. But I am really trying to A) think less about these trivialities and B) find new things in life to be excited for. I too feel anxious on occasion... (waiting for this thing to CEASE FIRE is practically artery clogging) but I want so much to look to the future and not dwell on the present.

I don't know if anything I can say will help you out but I hope it does. Life is so beautiful when we stop thinking only about ourselves and spending our days in our own shadow. That beach you thought you could run away too in a time of serious depression doesn't have to literally be a beach. It could be a book you wanted to read, a good friend who you can share everything with and laugh about it afterwards, it can be repainting your room, studying a new language... ANYTHING to keep your mind off of the things you hate because really what your trying to run away from are your own negative thoughts.

Okay, enough Dr. Phil talk...

love and peace

Also, look at this guy! He also makes me feel better.

Myleastfavorite

 

I have been on it almost for a month too,has not kicked in for flushing/redness yet but honestly its only been a about a month and these drugs are weird and kick in randomly

 

I remember Mepacrine at the month mark was not kicking in and I was really bummed and sad but then like a week later it just randomly kicked in very significantly

 

and no I have not had the dry eyes/mouth if anything my eyes have been better (they always got very dry)

 

so far no eye changes that I have noticed

 

lamar does it make u sun sensitive though..

I don't remeber it making anyone sun sensitive no, if anything the oposite for lupus patients. If it had made you sun sensitive for some reason you would know by now!

JT what sulpher topical do you use aain buddy? Looking for something for my folliculitis!

JT what sulpher topical do you use aain buddy? Looking for something for my folliculitis!

Is that the same as Keratosis pilaris, caus I think I have gotten it..

Also, look at this guy! He also makes me feel better.

 

 

Hehe, makes me feel better in one way... But ppl see him and know what they see. When it comes to flushing no one can relate or understand how it is affecting our lives.

oil girl are you still flush/redness free with laquenil..

and are you at 400mg still

The highest dose for me has been 300mg, due to my weight. Yes, I have been flush free. I even stopped it for 2 wks to see and the flushing came back, started back up and it was gone. So for me plaquenil has helped the flushing. Been to florida and out the other day in 90 degree weather.

However, I still battling the joint/bone issue, keep in mind though I have damage, so if you have joint/muscle pain or any type of red inflamation and tests show nothing wrong plaquenil should help with that too.

Myleastfavoritemistake- I know your upset and frustrated, but you have to give it time and have patience. You just started the plaquenil and have been suffering for years.....Don't give up on it.

Seattle-How are you????

Oli girl, Do you get much sun exposure? do you notice any of your side effects improving whilst in the sun or shortly after? I can't stress this enough but i think we all need a good amount of unprotected sun exposure. Just don't burn!

And ofcourse use a good mineral based sunblock on the face, just don't lather your whole body in any form of sun protection, unless you know you are likely to burn.

Oli girl, Do you get much sun exposure? do you notice any of your side effects improving whilst in the sun or shortly after? I can't stress this enough but i think we all need a good amount of unprotected sun exposure. Just don't burn!

 

And ofcourse use a good mineral based sunblock on the face, just don't lather your whole body in any form of sun protection, unless you know you are likely to burn.

I do get quite a bit, but I have too due to the osteopenia and it has been a struggle getting my Vit D levels up since Accutane. I am now up to 4,000 i.u. and it has taken me 2yrs to get to level of 40.

*** I can't use tanning beds though since accutane and I do have to wear sunscreen, (I don't put a lot on though) as my skin is thinned and I got wrinkles on my hands from accutane. oh and depending where thyroid levels are at & I am blonde.

I tend to have more engery, flush free and some other problems are better, but I still not sure if the sun has helped my joints as it doesn't matter what season it is I am still have pain, maybe just not as much in the sun. About to try the wheat gluten free diet for the joint

Is the mineral based pba free????

thanks for the reply marc o. i appreciate your comment about the beach not needing to literally be a beach.

the reality is that our bodies are permanently changed and they will dictate parts of our lives forever. so it is a struggle to re-envision life in a way that is appropriate for your new body. it's a creative process, but not so much artistic, rather survival.

honestly, one thing i do is buy lotto tickets. it's kind of just a fun game for me. and ive become more interested in architecture and real estate. i guess instead of a beach i dream of a neatly designed indoor living space (w/ central air) to escape to.

yeah i have to change my earlier position and say that, between the plaquenil and the brimonidine eye drops that i topically apply to my face, my flushing has improved.

 

the brimo drops seem more like an immediate thing sort of like lidocaine but better and not greasy.

 

i began using both of them at the same time, so i cant really tell which is better. but i am fairly certain both have effects, but in different ways.

 

i just got really discouraged when i tried exercising the other night and had a huge flushing outbreak to the point that i had to stop working out. I used to play 3 sports in high school, but post-accutane I can barely exercise without all sorts of discomforts. SUCKS SUCKS SUCKS.

 

gosh you guys, i really feel like accutane/claravis raped my body. i was never like this. i had mild acne and i really just randomly took accutane in my last semester of high school thinking "hey my grades dont count anymore, this high school is a prison and i hate it with a passion, but i have to finish this semester, so in the mean time why dont i just do this and ill have an extra edge for college!"...to think that if i just dropped out of high school right at that moment instead, it would been a 10 fold healthier decision.

 

at its absolute worst, any acne breakout probably bothered me at most 5% what all these post-accutane side effects bother me. literally. yes i would get a little self conscious about a pimple or two, but i would never do something so crazy as to not leave my house. which happens now all the time. i avoid old friends, i avoid meeting new people like the plague. no self esteem. i cant even imagine dating. it's sad. even with a few pimples, i remember still getting gitty when i met a cute guy and trying to initiate flirtation.

 

now i just feel like such damaged goods. the other day i turned and asked the nearest person around me where a certain building was. and he happened to be another gay guy, and he was actually really sweet and friendly and totally my type. yet i just paralyzed in fear, repeated his directions to make sure i heard them correctly, and ran away. yet at the same time i can just vividly see myself, the old me, flirting, joking, and with a healthy amount of nerves, mustering the courage to ask his plans for the weekend, and then after a moment of awkward silence, his phone number.

 

my life is really a nightmare if im honest about it. even in platonic social situations i feel so damaged. its awkward to get kissed on the cheek. my mouth is so dry i foam at the mouth when i talk too long. i have no saliva for kissing or oral sex. i know, vulgar/TMI, but think about it, it sucks. my hair feels like dry hay...and i have terrible dandruff now. i used to be so fit and active, now im overweight cuz exercising is so uncomfortable.

 

im not saying my situation is worse than other people's. but i know some people probably were depressed over their acne and maybe it was more severe than mine and they really thought about it for a long time and decided it was worth the risk. but i never had an "acne problem" and if i could have just survived those last few months of high school without making such a stupid rash decision, i never would have touched accutane. it was just like a perfect storm of all these things. and life is cruel....right after i took accutane, i moved on to a great college that i had worked so hard to get accepted into...in a wonderful new enriching environment, where, compared to my previous oppressive school and family life, up-was-down and down-was-up, and i was surrounded by so many incredible people and experiences and opportunities. it really would have been "my time." and i did have great moments. but it soon became apparent that these symptoms were here to stay and i would be haunted and anchored down by that one mistake forever. so right on the eve of "my time" i allowed myself to be raped by the stupid medication, and my body has been so uncomfortable to live in ever since. the timing of it feels so cruel. and it feels like an out of body experience when i look back because it was really so uncharacteristic of myself to do something so stupid like this, but when your environment is making you unhappy, you make stupid decisions, and all it takes is one time. my life has just literally been a nightmare ever since. and the timing just pains me. but its like that alanis morrisette song ..... winning the lottery and dying the next day. or something.

 

and i try to get motivated at times and tell myself "ok, im gonna recycle this into something positive and be like the erin brokavich of accutane!", but honestly it just pains me to even read about some of this. if i saw my old dermatologist on the street. i wouldnt yell at him. i wouldnt cry. honestly, i would just crumble into a ball and have an anxiety attack and hide.

 

i really don't know what's going to happen to me. but im running out of things to try and gusts of inspiration to try to renovate and repair my life. i've tried to find painless ways to end my life but i end up just getting scammed there too. i have a couple friends who have taken accutane. and they aren't even as bothered or traumatized as i am. but i get sick to my stomach sometimes when i see their deep wrinkles or flushing. even my psychiatrists are worn out by me. and ive seen many. honestly, it would be far more therapeutic if i could redistribute all those minutes talking to a psychiatrist to a dermatologist well-verse in the whole body effects of accutane.

 

i remember when i was younger i was mystified by people who committed suicide. i always thought "if i ever got liek that, i would just run away to some beautiful place and live simply and peacefully." never did i think i would find myself in a situation where the idea of an exotic place no longer represents an escape but rather evokes immediate and legitimate concern over my permanent heightened sensitivity to the sun and my skin's inability to tolerate any normal contact with water.

 

i have panic and anxiety attacks all the time, which just tandems with my accutane-induced-rosacea to form a vicious flushing cycle. i have had professors approach me out of concern based on my forlorn appearance. or even had professors email my advisor about me for the same reason.

 

i really just cant believe this has happened to me. i used to wake up from a bad nightmare and sigh "phew it was just a dream". now it's the opposite.

 

i just cant believe any of this. and to think doctors just shrug it off or even find it offensive that i would be unsatisfied, when for years all i got was "thats not happening, just give it time, it will return more to normal." maybe thats my calling. to be a nagging pest or gadfly to the dermatology profession. im running out of time and im running out of shame. this is just the most bizarre set of problems to have. i really wish i could just move on and say hey, ill just go after X% uglier guys and settle for X% less happiness and excitement. but it really doesn't work that way. im in a new category.

 

 

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Hey, I just read through you post. It's really sad to hear how horribly this condition has got you down and makes me angry to think about how this can just happen. It sounds as though it has been especially bad for you "i.e. no saliva/ dry hair" ect. so I won't pretend I can completely understand. I can however sympathize with the utter frustration of having no control over your life. For me that is the hardest part, coming to terms with the fact that there is something happening that I can do little to nothing about. It's infuriating.

 

For me I try my best to focus on what I can do as opposed to what I can't. Since I can't go to the gym because my flushing draws to much attention - I run at night. Turns out I now love running at night. Not only does the cool breeze feel nice on my skin but I am completely alone out there. Free from scrutiny.

 

Okay so drinking any amount of alcohol in a bar will make me light up like the fourth of July. Switch to cool water indoors and encourage your friends to drink outside. (again, a little redness goes fairly unnoticed in the dark).

 

The age-old remedy of flipping the negative into a positive is far more effective in theory. I have on so many occasions had to smile my way through (what I perceived to be) a room full of confused stares, and even though I was smiling I did not feel all that positive. I could only think of the lost opportunity. How much fun I could have had if free'd from the prison which is my own skin! Now looking back however - I can recognize something I did not before.

 

I am so proud of myself for living my life as normal even though I fell down. It is so hard to even get up somedays that we are blinded to the personal triumph that it is. I believe that when the fog has cleared in this blip in my long life, I will look back and think highly of the way I drudged through. I think you will too.

 

I am turning 22 next week and I think this kind of condition is especially damaging mentally at this stage in life. As we see youth slip away, we are bombarded with more physical detriments to make us think that our lives are pretty much over. The truth is that there is so much beyond that vail of youth, and the sooner we realize that the sooner we can all start living our lives.

 

For me - acne didn't just leave me with this flushing condition, but scars as well. I feel older then I am and regrettably often have a hard time taking my own advice here. But I am really trying to A) think less about these trivialities and B) find new things in life to be excited for. I too feel anxious on occasion... (waiting for this thing to CEASE FIRE is practically artery clogging) but I want so much to look to the future and not dwell on the present.

 

I don't know if anything I can say will help you out but I hope it does. Life is so beautiful when we stop thinking only about ourselves and spending our days in our own shadow. That beach you thought you could run away too in a time of serious depression doesn't have to literally be a beach. It could be a book you wanted to read, a good friend who you can share everything with and laugh about it afterwards, it can be repainting your room, studying a new language... ANYTHING to keep your mind off of the things you hate because really what your trying to run away from are your own negative thoughts.

 

Okay, enough Dr. Phil talk...

 

 

love and peace

 

 

 

my primary doctor said she would not take vitamin levels for me. she said to see like a HOMEOPATH.

she did do some bloodwork for thyroid and other stuff.

has anyone tried BETA BLOCKERS? my dermatologist says there is a big DIFFERENCE BETWEEN FLUSHING like rosacea on the face, and BLUSHING like from exercising (which is like whole body and more autonomic nervous system). he prescribed me beta blockers which i guess lowers ur blood pressure. he said it should reduce the blushing at the gym and also like when i get really anxious.

i was very surprised but he actually talked about a SURGICAL OPERATION that i had never heard of before. but basically they cut the pathway that innervates ur face to blush LOL. isnt that crazy? LET'S ALL GET IT! haha...the crazy thing is that I probably would...as i dont give hoooootttt anymore.

my DRY MOUTH is really bothering me. it gets worse when I get anxious and I'm a pretty anxious person obviously. and it sucks b/c indeed PLAQUENIL is prescribed for SJOGREN'S syndrome, so it is supposed to help dry mouth! Yet my dry mouth and dry lips are bothering me as much as ever.

Has anyone tried CEVIMELINE or PILOCARPINE for DRY MOUTH? It's sad, I just got back from a store. And while talking to the cashier. I was like "wow, this sucks, im literally thinking 'ok, keep ur mouth closed otherwise it's gonna get dry. so don't start a conversation with this person.' ". I'm reading about PILOCARPINE just on wiki, and it says an adverse effect is excessive salivation. I would LOOOOVE to have excessive salivation lol. Literally everytime i hear someone say the word "drool" i get nostalgic.

and I change my previous position, PLAQUENIL IS HELPING MY FLUSHING. but after i went to the gym and had the major BLUSHING episode, i got frustrated. But I am sitting in my bed right now, socks on, warm up pants, all my room lights on, blankets and warm laptop on my lap, on a warm night after a warm day, and my face is not nearly as bad as it used to.

my derm prescribed me some new cream/ointment to use against the dryness. i htink he like invented it himself, so i have to get it compounded from a pharmacy that does that.

he's pretty firm that there's nothing that can be taken orally for the dry skin, and that basically anything topical is just supportive or replacement but not something repairing.

im a little encouraged by the plaquenil helping the flushing and maybe the beta blockers or some other strategy can reduce the blushing when i work out. and if i found something to help the dry mouth, i think i would be ok accepting the dry skin and wrinkles and dry hair/scalp.

God, can we make that deal? You give me effective treatment for the dry mouth, flushing, blushing, rosacea, and i'll cope with the dry hair/scalp, dry skin, and wrinkles?

I can deal with the dry hair/scalp because while my hair looks bad, at least I don't feel it throughout the day. and while my scalp feels bad, if i thoroughly condition / do my thing in the morning, it's usually not so bad throughout the day. the dry mouth, on the other hand, bothers me all day no matter what i do. anything that helps usually only last minutes at worst or an hour at best.

one thing i wanna mention about PLAQUENIL is the stomach discomfort. It's weird, but like "if it were up to me", it wouldn't be a problem at all. like the actual sensations themselves are not that painful. HOWEVER, I have found myself waking up in the middle of the night and needing to eat something before falling back asleep to sooth my stomach.

you know when u have mild stomach or hunger pains and you wake up because of them, and ur thinking "gosh it doesn't hurt that bad, i really dont mind it...Body, will u please just let me go back to sleep?" but ur body is like "no! too bad, u need to feed me before i let you go back to sleep." wel i would compare it to that.

hopefully it doesnt become a major problem where i cant sleep or something. im wondering if there is a best time of day to take it to avoid this problem.

I have just scanned over your posts myleastfavorite. I can offer some help.... Yes the beta blockers will help a great deal, not just for flushing from exercise but flushing from numerous stimuli. I still use it to this day before a night out, it reduces anxiety and all sorts....great safe drug!

The stomach pains will reduce over time, it can take many months but it ill eventually go. I know this as i speak to many people who have taken it and other anti milarials (myself and my mum included!).

Gamma linoiliec is the only thing orally that will probably help your dryness, try borage oil. (stay away from fish oil and any omega 3 including flaxseed)

I may one day switch to plaquenil, not because mepacrin doesn't work, it works amazingly for me....but mepacrin gives me pretty bad insomnia, so i have to take an anti depresant with it to force me into sleep.

I am curently trying without any meds, but i don't think it is going to last....lol.

Oli Girl, many of the sunscreens are PBA free. I love zinx oxide based sunscreens. google megan gayle invisible zinc and theres sone specially for rosaceans called zinco (you can get them in tinted versions will hide redness very well!

I have just scanned over your posts myleastfavorite. I can offer some help.... Yes the beta blockers will help a great deal, not just for flushing from exercise but flushing from numerous stimuli. I still use it to this day before a night out, it reduces anxiety and all sorts....great safe drug!

 

The stomach pains will reduce over time, it can take many months but it ill eventually go. I know this as i speak to many people who have taken it and other anti milarials (myself and my mum included!).

 

Gamma linoiliec is the only thing orally that will probably help your dryness, try borage oil. (stay away from fish oil and any omega 3 including flaxseed)

 

I may one day switch to plaquenil, not because mepacrin doesn't work, it works amazingly for me....but mepacrin gives me pretty bad insomnia, so i have to take an anti depresant with it to force me into sleep.

 

I am curently trying without any meds, but i don't think it is going to last....lol.

 

Oli Girl, many of the sunscreens are PBA free. I love zinx oxide based sunscreens. google megan gayle invisible zinc and theres sone specially for rosaceans called zinco (you can get them in tinted versions will hide redness very well!

thanks lamar.

so you only take beta blockers on an as needed basis? if so, what times do you use it and how often a week does that end up being?

and again:

Has anyone tried CEVIMELINE or PILOCARPINE for DRY MOUTH? It's sad, I just got back from a store. And while talking to the cashier. I was like "wow, this sucks, im literally thinking 'ok, keep ur mouth closed otherwise it's gonna get dry. so don't start a conversation with this person.' ". I'm reading about PILOCARPINE just on wiki, and it says an adverse effect is excessive salivation. I would LOOOOVE to have excessive salivation lol. Literally everytime i hear someone say the word "drool" i get nostalgic.

In some good news: strangely, while the entire rest of my face is dry, my nose is extremely oily (more than I ever remember). Yet I need to keep the corners of my nose moist otherwise it gets red, flakey, like seb. derm.

I have been using metro cream, but I switched to metro gel (same .75 %), yet immediately it has really helped my nose. Metro gel is known to be drying, so its perfect to use exclusively on my nose. It immediately reduced the oiliness. ANd between that and lidocaine on the corners of my nose, i have kept the seb. derm. red/flakeyness at bay.

yay! something actually works. too bad i have like 12 other skin problems, but hopefully one by one....

In some good news: strangely, while the entire rest of my face is dry, my nose is extremely oily (more than I ever remember). Yet I need to keep the corners of my nose moist otherwise it gets red, flakey, like seb. derm.

 

I have been using metro cream, but I switched to metro gel (same .75 %), yet immediately it has really helped my nose. Metro gel is known to be drying, so its perfect to use exclusively on my nose. It immediately reduced the oiliness. ANd between that and lidocaine on the corners of my nose, i have kept the seb. derm. red/flakeyness at bay.

 

yay! something actually works. too bad i have like 12 other skin problems, but hopefully one by one....

That's great news. Glad you have found something to help ) Is it Rosex or a metronidazole gel used by people with Rosacea??

In some good news: strangely, while the entire rest of my face is dry, my nose is extremely oily (more than I ever remember). Yet I need to keep the corners of my nose moist otherwise it gets red, flakey, like seb. derm.

 

I have been using metro cream, but I switched to metro gel (same .75 %), yet immediately it has really helped my nose. Metro gel is known to be drying, so its perfect to use exclusively on my nose. It immediately reduced the oiliness. ANd between that and lidocaine on the corners of my nose, i have kept the seb. derm. red/flakeyness at bay.

 

yay! something actually works. too bad i have like 12 other skin problems, but hopefully one by one....

 

That's great news. Glad you have found something to help ) Is it Rosex or a metronidazole gel used by people with Rosacea??

 

metronidazole gel. yeah, my nose would get oily and i would still get some red inflammations and pimples on my nose.