myleastfavoritemistake- Do you take the plaquenil with food?? I usually pop one right after dinner. I noticed too a slight insomina when first taking it before I went to bed, so I switched to taking it after dinner and have no stomach problems either.

Lamarr- Thanks on the sunscreen. Hey do you think Gla in borage oil is better then primrose oil as I have read different views, from other suffers, some take primrose form???? Just curious as I take the primrose form.

Oh, also as for dry mouth it plaquenil has helped my mouth, but not eyes, I think sjrogen's pts take 600mg for that help from what I have read and been told...Too much MG in my opinion. However, my dentist also gave me a toothpaste high in flouride that helps.

Myleast favoritemistake-Let me know if the stuff your dr. gave you works on the dryness...

Happy Holiday everyone

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.

Myleastfavouritemistake,

That is interesting that your GP wouldn't enable you to get Vitamin levels blood tests done, but it is good she'll enable the thyroid check etc. I know my GP mentioned 'tests are expensive' but considering I am/was concerned about my health I pushed for them anyway.

I have done research on Beta-blockers. Many people with Rosacea take them (along with other meds usually) to combat flushing e.g Propranolol: http://rosaceagroup.org/The_Rosacea_Forum/...ead.php?t=21527

Yes I have heard somehwere about a surgery to stop flushing. I can't remember where I read or heard about it though. But like you- I would actually consider it if there are no negative effects on the system. It would be a last option though, after ample time (eg years) and exhausting other options first.

I don't ever get dry mouth, but I do get chronically dry nasal passages that sometimes causes bleeding. (I apply vaseline at least twice a day with a cotton bud and this also seems to reduce frequencies of my nose flushing). I don't have much suggestions for you but I found this on a NZ pharmacy site so they might have something similar in your country: http://www.pharmacylive.co.nz/product-guid...F2-8C09EF12E530 Also I drink ALOT of water to hydrate the system (about 2L day), as often I get chronically thirsty.

Great to hear plaquenil is working well for you! Shantelle

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!

 

Hey Lamar. I use Sulfacetamide Sodium Topical Suspension USP, 10% generic (brand name Klaron). I have been using it pretty much continuously post tane for acne. Its good stuff. I bet it would work for folliculitis too, It responds really well to dry skin like us post tane users have.

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????

Hey! I have been ok. I have been taking a step back and trying to reevaluate my situation before I move on to trying anything else. I don't think my flushing has gotten any better/worse for two years now so I don't envision this changing naturally any time soon. Keep me updated on the plaquenil. I'll let you know what I decide. I'll probably ask your opinion on it prior to see if you have tried it or heard anything about whatever it is I decide on.

yeah i drink tons of water and it makes no diff.

oli, i do try to take it with food. but its weird cuz i dont feel stomache pains during the day. but i wouldnt call it fulll out insomnia just yet.

does anyone else have wrinkling? i know it sounds superficial. but its pretty bad. and the two otehr people i know ...well, know in person, who have taken accutane have HORRIBLE wrinkles. and im related to one of them, so im worried mine will look liek theirs. it's crazy, because htey are only like 27-28....and we'll be at family dinners, and they're sitting nex to like my 60 year old uncle....and the 60 year old's wrinkles are not nearly as bad as their's.

ironically, my derm mentioned retin-A for wrinkles.

REEEEEEEEEEEEEEELAPSE

ok...so my classes this summer are in smaller classrooms and i guess they are a bit warmer. but today i had a TERRIBLE flushing episode.

so i felt it coming on for sure...and the person next to me kept looking at me, so i was like hmmmmm....uhoh. but when i went to the bathroom and looked in the mirror....i was SHOCKED by how bad it was. my face was on fire and looked like i had a huge rash all over my entire face. it looks like you could fry an egg on my face.

unfortunately, my dermatologist messed up on my prescription (forgot to include percentages/dosing info) for betablockers (metoprolol) so I do no have them yet.

but its funny how the Endoscopic Thoracic Sympathectomy (surgery for blushing), something i did not know existed until last week, is already seeming like a necessity. well, im gonna give the beta blockers a try first. but sheesh, today was BRUTAL. it was not even a hot day. and i made sure to sit by the windows and take off my sweatshirt and stuff.

i took pictures and im for sure going to show them to my dermatologist and other docs i see.

but yeah, i need to do more research on this ETS surgery but for it to get THAT bad when im being careful and able to control things like sitting by an open window and dressing light....i cant imagine how bad it could get when im stuck in an environment with no control over those things.

lamar...so the beta blockers kick in immediately? i think i read it only takes 24 hours for them to kick in.

jesus christ.....im reading a little abotu ETS the endoscopic thoracic surgery....and it sounds pretty terrible for some people.

jesus christ.....im reading a little abotu ETS the endoscopic thoracic surgery....and it sounds pretty terrible for some people.

After what I have read/heard its pretty much gamling. You have to consider how much ypu are willing to lose. It might give you hell, but it may also fix your problems. Pretty much like accutane i guess, and look how that went...

Had an appointment with my derm today. She was really satisfied with my acnes, or the lack of them. She also wondered if I were finish with accutane, and I was like.... WHAT?!?!?! I am seven months past. LOL. She just ignored my flushing problem.. I said it a couple of times, and she was like; some ppl need a year, and some unlucky needs two before the skin is back 2 its original thickness and stuff.

Also mentioned the bumps on my arm, but she said it wasent accutane, but I know it is... Does any of you know any connection between keratosis pilates and accutane? Saw that a person on rosaceagroup asked a person struggling with post accutane flushing whether he had bumps on his arms, is there a connection??

50 bucks for ..... nothing. Thanks

BigDaddyCory: how is the tanning going?

Im just so fuckn bitter. Wanna go to the beach and have fun. I got like three friends who have taken accutane and their all fine. FUCK I HATE MY LIFE

Halfpipe- If I remember correctly at one point you mentioned something about jaw surgery. Did you have it???? If you did, did it heal good and did you get any infection. Going in soon for implants, Yeah another great gift from accutane, teeth breaking.

Hi all

Myleastfavouritemistake- Know exactly how you feel re burning up/flushing from being inside rooms. Any tiny amount of heat, rooms full of people, or poor air circulating triggers the flushing. It happened (very severely) a few times at work- very embarrassing not to mention unbearable. I have to constantly carry bottled cold/ice-y water around with me to help lessen the possibility of full-blown tomato-faced flushing attacks.

A New Start- Sorry to hear Derm appointment didn't go as well as hoped. Maybe time to try a new Derm??

Managed to get an appointment with a 'new' Dermatologist and he wanted me to do tests to rule out connective tissue disease based on these issues:

1. Had 4 very small, pin-head sized, red ringed circles develop on the skin of my middle finder. Blistering surrounding the area.

2. Developed a burning photo-sensitive rash on my cheek facing the driver's side window/sun while driving to the appointment (it's mid- winter here too). Ahhhh.

3. ...and of course the central face redness and flushing problem.

I'm aware that some post-Accutane users have been tested for Lupus- Does anyone have/or has had issues 1. or 2. above, post Accutane (or Minocycline) ??

You should post those pics. I'd be interested to see how bad your bad gets.

REEEEEEEEEEEEEEELAPSE

 

ok...so my classes this summer are in smaller classrooms and i guess they are a bit warmer. but today i had a TERRIBLE flushing episode.

 

so i felt it coming on for sure...and the person next to me kept looking at me, so i was like hmmmmm....uhoh. but when i went to the bathroom and looked in the mirror....i was SHOCKED by how bad it was. my face was on fire and looked like i had a huge rash all over my entire face. it looks like you could fry an egg on my face.

 

unfortunately, my dermatologist messed up on my prescription (forgot to include percentages/dosing info) for betablockers (metoprolol) so I do no have them yet.

 

but its funny how the Endoscopic Thoracic Sympathectomy (surgery for blushing), something i did not know existed until last week, is already seeming like a necessity. well, im gonna give the beta blockers a try first. but sheesh, today was BRUTAL. it was not even a hot day. and i made sure to sit by the windows and take off my sweatshirt and stuff.

 

i took pictures and im for sure going to show them to my dermatologist and other docs i see.

 

but yeah, i need to do more research on this ETS surgery but for it to get THAT bad when im being careful and able to control things like sitting by an open window and dressing light....i cant imagine how bad it could get when im stuck in an environment with no control over those things.

 

lamar...so the beta blockers kick in immediately? i think i read it only takes 24 hours for them to kick in.

Hi all

 

Myleastfavouritemistake- Know exactly how you feel re burning up/flushing from being inside rooms. Any tiny amount of heat, rooms full of people, or poor air circulating triggers the flushing. It happened (very severely) a few times at work- very embarrassing not to mention unbearable. I have to constantly carry bottled cold/ice-y water around with me to help lessen the possibility of full-blown tomato-faced flushing attacks.

 

A New Start- Sorry to hear Derm appointment didn't go as well as hoped. Maybe time to try a new Derm??

 

Managed to get an appointment with a 'new' Dermatologist and he wanted me to do tests to rule out connective tissue disease based on these issues:

1. Had 4 very small, pin-head sized, red ringed circles develop on the skin of my middle finder. Blistering surrounding the area.

2. Developed a burning photo-sensitive rash on my cheek facing the driver's side window/sun while driving to the appointment (it's mid- winter here too). Ahhhh.

3. ...and of course the central face redness and flushing problem.

 

I'm aware that some post-Accutane users have been tested for Lupus- Does anyone have/or has had issues 1. or 2. above, post Accutane (or Minocycline) ??

Did theese come before you started the doxy the blistering and rash????

I had like a lupus rash across my cheecks and nose, I was tested and came back postive for ANA and Postive for the DS Antibody (which is specific for lupus), but they were on the boder of high so they blew it off as nothing. I also tested postive for Grave's, but even having thyroid fixed still flushed.

Let us know what your results are????? Oh and I had small red dots that appeared, thankfully after plaquenil most of them strangely went away.

Hi all

 

Myleastfavouritemistake- Know exactly how you feel re burning up/flushing from being inside rooms. Any tiny amount of heat, rooms full of people, or poor air circulating triggers the flushing. It happened (very severely) a few times at work- very embarrassing not to mention unbearable. I have to constantly carry bottled cold/ice-y water around with me to help lessen the possibility of full-blown tomato-faced flushing attacks.

 

A New Start- Sorry to hear Derm appointment didn't go as well as hoped. Maybe time to try a new Derm??

 

Managed to get an appointment with a 'new' Dermatologist and he wanted me to do tests to rule out connective tissue disease based on these issues:

1. Had 4 very small, pin-head sized, red ringed circles develop on the skin of my middle finder. Blistering surrounding the area.

2. Developed a burning photo-sensitive rash on my cheek facing the driver's side window/sun while driving to the appointment (it's mid- winter here too). Ahhhh.

3. ...and of course the central face redness and flushing problem.

 

I'm aware that some post-Accutane users have been tested for Lupus- Does anyone have/or has had issues 1. or 2. above, post Accutane (or Minocycline) ??

ok, i will work on that. i'll just need to like cross my eyes out or something. id be curious to see pics of other people, too.

Did theese come before you started the doxy the blistering and rash????

 

I had like a lupus rash across my cheecks and nose, I was tested and came back postive for ANA and Postive for the DS Antibody (which is specific for lupus), but they were on the boder of high so they blew it off as nothing. I also tested postive for Grave's, but even having thyroid fixed still flushed.

 

Let us know what your results are????? Oh and I had small red dots that appeared, thankfully after plaquenil most of them strangely went away.

Hi Oli Girl

Thanks for your reply. It is interesting that so many of us post-Accutane have been tested for Lupus. I've read right back through this thread, and on external websites that lupus-like symptoms can arise from both Accutane (Isotane in NZ), and in some cases Minocycline can even 'bring out' Lupus- quite scarey.

Unfortunetly, i'm not certain whether these surfacing issues are attributed to Accutane or Minocycline (flushing reactions from both). Or, if whether Doxy can be attributed at all... because had one sun rash incident pre-Doxy when was sitting on the couch with my cheek facing the window (but less severe- just put it down to Accutane still being in the system). The small circles on my finger surfaced about week 5 or 6 on Doxy though. Also i'm noticing progression of red random patches appearing on my temple and forehead after showers now (they fade about half an hour post showering). I've had this problem since stopping Accutane, but seems becoming more evident over time The Question is - How can inflammation be seemingly increasing in my system? Before Accutane, I never reacted to anything. In fact, i never had any worrying health issues apart from the severe acne that started end of Uni in 2006.

It is strange that your tests results were blown off like that... Having read your past posts, i'm so glad to hear Plaquenil is giving you some relief though- espec as Plaquenil is ideal for lupus / lupus symptoms and other inflammatory conditions. Is your jaw surgery very soon? Best wishes here.

My Derm is currently out of town this week, at his satellite practice. Tests results should be available for review about now... so can only await his phone call - lets hope hear word this week. If the tests say 'no connective tissue disease' then i'm thinking Rosacea is potentially progressing which would make it more difficult to convince Derm to prescribe something likely beneficial such as Plaquenil.

Keep us updated on how your surgery goes...

Best, Shantelle

a new start-- i finished accutane about 6 months ago and have the same bumps on my arm and bad flushing...there mus be a correlation if a bunch of people have said they had the same symptoms. my doctor said to exfoliate with a lupa iin the shower and put lots of lotion on my arms. im going to go harder at that problem now that i know that other people have the same thing. i know my accutane brought this stuff on.

and i think my flushing is due to dryness because it only really happens on the left side of my face where the most dryness occurs. i can put a shitload of moisturizer on that spot but nothing really helps. anybody try oracea or metrogel for this flushing. if not aspirin or any kind of pain reliever to take the inflammation down???

Thanks alot guys

Hi Jumiormk

Sometimes I have flushing on just one side of my cheek too, others days it'll be both... I also get rashes from the sun by just being in my car.

As advised to someone on this thread (Lamarr I think it was) who sees post-Accutane flushing and Rosacea expert Derm Dr Chu - UK ??, Post Accutane flushing is plain and simply- Rosacea.

Re: Oracea- there are quite a few Rosaceans who use Oracea which I believe contains an anti-inflammatory dose of Doxycycline. As Oracea is not available in New Zealand where I live, my 'old' Derm put me on standard Doxycycline 1x 50mg day to get anti-inflammatory properties. So far, being 2 months into treatment, no change to flushing. A couple others on this thread have also tried Doxy but didn't have any effect either. Oracea would probably only be beneficial if you have any acne post Accutane, as this treatment is usually only used by Rosaceans who have both inflammatory redness & p&ps. The Rosaceans with flushing (no p&ps) generally find some relief via either/or all: Clonidine (Anti-flushing/Menopause med), Mirtazapine/Remeron (Anti-depressant with anti-inflammatory properties), Propranolol (Beta Blocker).

Some people on this thread and/or http://rosaceagroup.org/The_Rosacea_Forum/ have also mentioned very good success with Plaquenil or Mepacrine (funnily enough- generally prescribed for those with inflammatory conditions such as Lupus etc).

Re: Asprin or Metrogel - Some people find some relief using these, others see no effect. Neither helped me unfortunately.

I have other post-Accutane symptoms apart from flushing, similar to those found in those with connective tissue diseases, so my new Derm asked for tests to be done for which i'm awaiting results for. Apart from the awfully uncomfortable bad flushing, and bumps do you have any other side effects from Accutane?? (No problems with joints I hope..)

Hope this info helps, keep us updated on what treatment (if any) you decide to try with guidance of your Derm? and how it goes...

Best, Shantelle

Anyone have any advice regarding acne scar laser procedures? My flushing has died down significantly, only really taking place when im embarrassed (more then your average flushing still thou unfortunately.)

I want some help with my scars but am worried my skin is much too sensitive after 7 months of daily flushing.

Any experience in this area?

Hey Soul, Lamarr, Oli Girl, & Halfpipe,

How are things going for you all? I hope everything is good, but I just wanted to get updated.

a new start-- i finished accutane about 6 months ago and have the same bumps on my arm and bad flushing...there mus be a correlation if a bunch of people have said they had the same symptoms. my doctor said to exfoliate with a lupa iin the shower and put lots of lotion on my arms. im going to go harder at that problem now that i know that other people have the same thing. i know my accutane brought this stuff on.

 

and i think my flushing is due to dryness because it only really happens on the left side of my face where the most dryness occurs. i can put a shitload of moisturizer on that spot but nothing really helps. anybody try oracea or metrogel for this flushing. if not aspirin or any kind of pain reliever to take the inflammation down???

 

Thanks alot guys

Mhm, those bumps are clearly accutanes fault.. Keep us posted, since im 8 moths past and your 6 were pretty much in the same boat.

As advised to someone on this thread (Lamarr I think it was) who sees post-Accutane flushing and Rosacea expert Derm Dr Chu - UK ??, Post Accutane flushing is plain and simply- Rosacea.

After what I have read Rosacea is constant facial redness, that might get worse with time. Victims suffering from post accutane flushing often get better, then it cant be Rosacea?!?

Anyone have any advice regarding acne scar laser procedures? My flushing has died down significantly, only really taking place when im embarrassed (more then your average flushing still thou unfortunately.)

 

I want some help with my scars but am worried my skin is much too sensitive after 7 months of daily flushing.

 

Any experience in this area?

Marc O

That's excellent news that your flushing has died down a great deal )

Personally I've only had experience with V-Beam laser (years ago pre Accutane for small facial scar - bike accident). It really did get rid of a lot of the scar's redness, but not 100%. There was a huge amount of bruising (believe it's called Purpura or something similar) and it took about 4 weeks for skin to mend (but I think my skin is fragile and slow to heal anyway). If you can find a top Derm that specialises in lasering i'd recommend seeking their advice. Alternatively, topical Retina-A helps to reduce/heal acne scarring but i found it far too irritating and it caused redness (was prescribed this by Derm when first started Accutane).

Oli Girl- Update on Connective Tissue tests: Had a call back from the Derm and I have positive ANA test suggesting autoimmune disorder. Am having skin biopsy tomorrow.

I took accutane for five months 40mg the first month and 60mg the next four and I just finished last friday. Through the whole course I noticed that just my cheeks mainly would become red more easily because of embarrassment, a hot shower, excercise and other normal triggers talked about here. I don't understand if this is flushing or not it doesn't really burn or hurt when it happens and it also doesn't seem to happen everytime when one of my triggers happens. When it does happen it seems to fade pretty quickly most times and the redness never lasts more than an hour at most. Should I just wait it out for awhile or try to treat it early on?

shantelle- that sucks you got a postive ANA, however it is at least good something showed abnormal. It will be interesting to see what the biopsy will show. I know for me things showed abnormal here and there, however physical findings and little physical tests they dx me w/sjorgen's and undiagnosed connective tissue disease and then I got the plaquenil. Let us know.

UCF492-If you just finished on Fri I would give time a chance first. Esspecially if all you have is redness/flushing.

Seattle- How are you. I am doing okay, Achilles still not doing soo hot. Flushing is going okay.

lamarr and halfpipe- How are things going???

Things with me are OK. I managed to get the highest classification possible in my university degree and i'm just working part time as a security guard (i did an SIA license whilst i was at uni) until i find my 'career' path.

Tbh i'm till reminded of most of my sides every day, be it my eyes, lips, hair. But i don't have any crippling pain as such anymore and i don't flush etc so i can get on with life somewhat.

I am currently taking just one mepacrin pill a week and i'm on a low dose of mirtazapin (15mg). I still take all my usual supplements and use my LEDS and topical etc to control folliculitis/hairloss.

I'm just hoping things will slowly improve some more over the years.

ok, so im uploading a picture i took of my face one time i was flushing. i have a mac, so im not sure if its the same for all screens, but when you tip your screen back and look at it from an angle, you may be able to see the redness more. but otherwise, from the glare of the light and low quality from my camera phone, it might not look so bad.

you cant see in this picture, but the flushing extends across my forehead too and of course the other side. my chin and i think my nose are the only parts that dont get so red. this particular day, i was in a lecture in a warm classroom. i starting flushing right in the beginning of class...then afterwards i went to the bathroom, about 1 hour 15 minutes after the start of the flushing, and took this picture.