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Halfpipe- See if you can sign a waiver. I just went to the eye doc for a vision field test and check up since I have bleperitis, sjorgen's problems. The eye doc who is a retina surgeon also said the same thing, she has only read studies and seen people have eye problems if they are above 400mg or on it for 15yrs or more, but if caught in time it is reversible.Also I know for me it took 4 rheums, I couldn't get my regular doc prescribe to me. It was a hassle to have to see a new doc each time. Maybe something will show in the lab, but then again that would suck.
Good Luck
oh sorry the yellow skin thing is probably carotemia due to the body now being unable to convert beta carotene to retinol, due to the high level of retinoic acid already in the cells, diabetics and people with hypothyroid have the same problem causing their skin to turn yellow, do you eat high carotene foods like lots of fruits and vegetables cut out high carotene foods and it should go away.
seattle how is plaquenil working for you?
Hey man. Two weeks ago today I stopped taking it (7 days in) because I got pretty sick. I had a nasty sore throat/fever for like 5 days followed by 5 days of, generally nighttime, coughing. I have been waiting to fully recover before starting again as plaquenil lowers the immune system so I figured it wise to stop since I only had been on it seven days and can't be for certain that it isn't the reason I got sick in the first place. I'm planning on starting up again here shortly, but I still have some lingering throat pain and am waiting for that to disappear. I had tonsillitis 4-5 months after my round of tane in 2006 and ever since then I swear I get the worst sore throats whenever I do get sick. I'm pretty sure I never really recovered properly, but oh well. I'll let you know when I start back up and of course will update you moving forward...
umm are you making a joke?
that drug is for severe diarrhea?
and seattle that is most likely smart to stop until you get better 
EDIT:tommy I looked on the forums and seems very interesting as it is a bit embarrising to say but I have bowel problems but just always thought it was normal
could you find out a good dosage to be on and for how long?
and do you only take it for a certain amount of time?
and everyone I got my lab results back
ANA- negative..
lipemia-Slight
rheumatoid factor- 14 (ntermediate)
I understand that ana if negative means 75% chance of not lupus but if any of you understand the lipemia and RF results fully mean that would be great as I am thinking about finding a new doctor and dont wanna go back to my old one as I feel he does not want me as a patient anymore.
umm are you making a joke?
that drug is for severe diarrhea?
and seattle that is most likely smart to stop until you get better
EDIT:tommy I looked on the forums and seems very interesting as it is a bit embarrising to say but I have bowel problems but just always thought it was normal
could you find out a good dosage to be on and for how long?
and do you only take it for a certain amount of time?
and everyone I got my lab results back
ANA- negative..
lipemia-Slight
rheumatoid factor- 14 (ntermediate)
I understand that ana if negative means 75% chance of not lupus but if any of you understand the lipemia and RF results fully mean that would be great as I am thinking about finding a new doctor and dont wanna go back to my old one as I feel he does not want me as a patient anymore.
I said i would retire from the boards but i feel i should continue posting in this thread, it is normally pretty constructive.
Anyway ANA negative doesn't suprise me. What we have is not lupus....It is LUPUS LIKE. You may well find other immune tests come back boarderline/slightly abnormal i.e. rheumatoid factor of 14. Some people can't find anything though.
14...is boarderline i would say indicates that something is going on. Get it re tested in a few months and if it is still there, then it's a pretty sure sign.
Seattle JT my man, lets hope the flu or whatever you had was a coincidence. One thing i have found whilst on mepacrin (may apply to the other Anti milarials aswell) is that i need to take a b vitamin Complex. SO long as i take one 2-3 times per week i never get sick. Without it i can get sick quite often.
There is a long storey behind the b vitamin thing, but you will just have to trust me.
I said i would retire from the boards but i feel i should continue posting in this thread, it is normally pretty constructive.
Anyway ANA negative doesn't suprise me. What we have is not lupus....It is LUPUS LIKE. You may well find other immune tests come back boarderline/slightly abnormal i.e. rheumatoid factor of 14. Some people can't find anything though.
14...is boarderline i would say indicates that something is going on. Get it re tested in a few months and if it is still there, then it's a pretty sure sign.
Seattle JT my man, lets hope the flu or whatever you had was a coincidence. One thing i have found whilst on mepacrin (may apply to the other Anti milarials aswell) is that i need to take a b vitamin Complex. SO long as i take one 2-3 times per week i never get sick. Without it i can get sick quite often.
There is a long storey behind the b vitamin thing, but you will just have to trust me.
Glad to have you back Mark. It most likely was mere coincidence as some of my friends came down with similar sicknesses, but since I was only a week in I figured it would be best to take the cautious approach. It is kind of scary though as antis can lower the immune system which would be a really unfortunate reason for me to not be able to take it. B vitamin complex hmm interesting. Yeah I'll look into that. You take it 2-3 times a week. What dosage?
Cheers bro,
The anti milarials don't actually give any immunosupression, they are more immunomodulating/anti inflammatory. They only become immuno supressive if you suffer certain side effects from them i.e. lukopenia.
The ones i take don't have a dose as such here's a link to them (i didn't buy them from here)
http://www.auravita.com/product/Bio-Health...;adid=BIOH10470
Cheers
Hey!
I am now 4 and a half month past accutane, and the facial flushing is still a huge problem. I do got a permanent redness, which however seems to be getting better. There are periods when i do belive that the Flushing is getting better, but then there are times when it seems to be even worse.
The best example is when I went to the hairdresser. When i got there in October my face got two or three quick flushes and my face went bet red, while when i was there in February my face was A lot less red when i got the flushes. Since your sitting in front of a mirror it is easy to see.
So right now im quite scared and worried. Is it really getting better, or not. My social life has never been worse, even when I has terrible acne it was better. This is fuckn ruining me.
So what is there to do? Should I wait to it has been at least 6-7 months after my last Accutane pill before getting worried?
My flushes are as i said on a daily basis, but it is however only short moments, maybe aprox. 3-5 seconds, and then my face turns "normal" again, even though "normal" still isnt very nice, haha. Its in stressing situations, when working out and when im embarrassed. The problem is that the fear of might be flushing makes me feel embarrassed all the time!
What should I do? Is there anything that can be done? Or is my only option to sit back and wait and hope for the best. Cause there are still hope right?
Haha, welcome to my life
Edit: Before going on accutane I had a perfect skin when it comes to redness. I hardly got sunburned in the summers. Flushing wasent in my vocabulary.
Hey everyone.
I took accutane 6 years ago.
I have flushing/redness to this day. My dad's fam has a lot of rosacea, so it was probably a latent potential that accutane really unleashed or exacerbated.
I def cant go swimming or wet my face in the shower or i will "break out" in inflammation.
My face is also totally dried up.
I have been using METRO CREAM (derm said metro gel will make the dryness worse) for months and not noticed much improvement.
Strangely, he says there is a metro ointment (not sure what the diff is), and that it might have a diff result (but its not immediately covered by insurance so he has to put in a request).
I mentioned anti-milarials and he says that he prescribes PLAQUENIL to other patients and he seemed willing to give it a try with me eventually.
I had a BIOPSY. the analysis said there were many dilated vessels, telangiectasia, lymphohistiocytic infiltrate, and overall looked suggestive of rosacea. but no clear clue as to the cause of dryness.
My face is very wrinkly. both fine/"texture" wrinkes as well as gross-scale wrinkles.
and the cohesion of my skin is very flakey and feels like its always sloughing.
i know accutane is said to thin ur skin, but i dont quite understand the exact mechanism of this.
my biopsy didn't mention anything about thinness. (or anything about collagen for wrinkling)
I imagine I can ask them to re-examine the biopsy sample, but I would want to prepare a thorough list of things to "pay attention to" before i do that. any suggestions?
i know dryness makes wrinkles, but intuitively i feel like that doesnt fully explain the totality of my skin condition.
My derm has me using LAC HYDRIN and UREA creams (exfoliants) b/c I was starting to get some roughness. The creams def smooth out the roughness.
My derm also put in a request for PROTOPIC/ELIDELL cream (insurance doesnt automatically cover that). he says after exhausted other options they might cover it eventually. i volunteered to pay out of pocket if he thought it was worth a try, but it doesnt seem like a guaranteed home run.
The latest thing he prescribed me was topical LIDOCAINE. It is an anesthesic that is supposed to constrict the dermal blood vessels.
Today is my first time using it, and it is basically like vaseline on ur face -- not practical to use day-to-day. after accutane, my face doesn't absorb stuff as well, so it looks especially greasy (compared to if i applied to another area of my body).
had i known the lidocaine would not be practical for day-to-day, i would have asked to try something else too. but i guess i'll just wait until my next followup.
plaquenil seems like "next up to bat" and I will ask to try that next.
Oh, and I have been taking MINOCYCLINE for the past 2 months give or take. I was surprised some people here were complaining that it makes them red b/c i was told it should help calm that.
I cant really put my finger on it, but the minocycline seems to help calm my face. Strangely, my wrinkles seem less pronounced with the minocycline. It does not help the redness/inflammation episodes after a shower or being in a hot room, but in some vague way it helps my skin's "baseline" appearance. I suppose there are some immune mechanisms that are diffusely visible across my face (but not as obvious as a blemish or something) that are generally "calmed" by the minocycline?
are there any specific downsides to minocycline i should keep in mind? generally speaking (not just skin-wise)?
the one utility i see for lidocaine is that i do take adhd medication from time to time, which def causes flushing. so whenever i take it at home studying, i will def apply the lidocaine to try and counteract the flushing. this is day 1, but it does seem to have an immediate effect in calming the redness.
well, this thread is very long, but ive gone through about 30 of the 40 pages.
I am happy that there seems to be a lot of pro-active people in this thread. I'm hoping we can sort of network and "combine forces." My philosophy is that even if there is no cure, and even if some of the possible treatments are risky and i elect not to try them, i want to understand the mechanisms of what is going on in my face and feel assured that i have made the best effort and received the best care.
I live in the bay area and I was told that my biopsy was examined by the top pathologist in the world at UCSF. I am told that UCSF is the top institution for rosacea research. So perhaps this is something we can "tap into."
Cheers bro,
The anti milarials don't actually give any immunosupression, they are more immunomodulating/anti inflammatory. They only become immuno supressive if you suffer certain side effects from them i.e. lukopenia.
The ones i take don't have a dose as such here's a link to them (i didn't buy them from here)
http://www.auravita.com/product/Bio-Health...;adid=BIOH10470
Cheers
Yeah I know the antis aren't immunosuppressive. I just meant, solely, in relation to getting sick they make you more susceptible. From the link it looks like a pretty common mg dosage. Thanks again for the heads up. I had been avoiding vitamin b in general over the fear of niacin, but since plaq should handle my flushing it no longer is a restraint.
a new start ,
You shouldn't do anything until at least 6 months post. Ideally you want to recover naturally and you still have plenty of months where that could happen before you should start trying anything serious. I know of plenty of people that have recovered naturally between 6-12 months post tane so you don't want to do anything that could make it worse and/or impede a natural recovery.
I don't understand your flushes? You say they are only 3-5 seconds now and then your face goes back to normal? That sounds like blushing to me. Is your problem more of a redness issue than a flushing issue now?
myleastfavoritemistake,
Has your flushing improved at all over these 6 years? In regards to you being more susceptible to flushing I agree. I believe that all of us that are post tane flushers have the genetic makeup to flush (obviously), but that doesn't mean that we would have ever been flushers naturally without the use of tane. Linocaine, as you said, isn't very practical.
It seems like you should give plaquenil a go. In regards to the minocycline I found that it exacerbated my flushing post tane. I know it seems counter intuitive since minocycline can be used to treat flushing, but yeah for whatever reason it was definitely making the severity of my flushing worse. One downside to the minocycline is that its an antibiotic so over time its possible that you will become less susceptible to the effects of antibiotics (at least certain types). If you decided to start plaquenil I would definitely stop the minocycline just to make sure that anything that happens post the start of plaquenil can be tied directly back to it.
I would recommend reading the whole thread as it will give you the best idea of what people have tried successfully and such. I'm more than happy to combine forces with you to try to figure this all out. The thing about USCF is pretty cool if its true. Thats rather fortunate for you haha!
a new start
You shouldn't do anything until at least 6 months post. Ideally you want to recover naturally and you still have plenty of months where that could happen before you should start trying anything serious. I know of plenty of people that have recovered naturally between 6-12 months post tane so you don't want to do anything that could make it worse and/or impede a natural recovery.
I don't understand your flushes? You say they are only 3-5 seconds now and then your face goes back to normal? That sounds like blushing to me. Is your problem more of a redness issue than a flushing issue now?
Thanks Seattle. Well, i think your right. When I take a shower and stuff now my face dont get as red as it used 2 be. Actually for the first time in over a year I am now washing my face with the same hot water as my face. So i guess my redness problem is gettn better. I dont really get the difference between blushing and flushing.. But if it is like flushing is longer, but quite the same as blushing then i guess my problem is blushing.
myleastfavoritemistake,
Has your flushing improved at all over these 6 years? In regards to you being more susceptible to flushing I agree. I believe that all of us that are post tane flushers have the genetic makeup to flush (obviously), but that doesn't mean that we would have ever been flushers naturally without the use of tane. Linocaine, as you said, isn't very practical.
It seems like you should give plaquenil a go. In regards to the minocycline I found that it exacerbated my flushing post tane. I know it seems counter intuitive since minocycline can be used to treat flushing, but yeah for whatever reason it was definitely making the severity of my flushing worse. One downside to the minocycline is that its an antibiotic so over time its possible that you will become less susceptible to the effects of antibiotics (at least certain types). If you decided to start plaquenil I would definitely stop the minocycline just to make sure that anything that happens post the start of plaquenil can be tied directly back to it.
I would recommend reading the whole thread as it will give you the best idea of what people have tried successfully and such. I'm more than happy to combine forces with you to try to figure this all out. The thing about USCF is pretty cool if its true. Thats rather fortunate for you haha!
No it has definitely not improved.
Has anyone tried protopic/elidell cream? I don't recall seeing any mention of it...
In doing a quick google search, I have to say, it sounds like there are more people out there suffering from vision problems due to Plaquenil than the "rare cases" my doctor said.
Is it really worth the risk of going blind?
I suppose one defense would be to get your eyes checked as frequently as possible? (I read someone mention they get checked every 3 months. Heck, I would consider paying out of pocket just to be safe).
Also, does Plaquenil dry your eyes? I've read a lot of complaints about that. And accutane has sort of dried my eyes a bit.
myleastfavoritemistake,
Has your flushing improved at all over these 6 years? In regards to you being more susceptible to flushing I agree. I believe that all of us that are post tane flushers have the genetic makeup to flush (obviously), but that doesn't mean that we would have ever been flushers naturally without the use of tane. Linocaine, as you said, isn't very practical.
It seems like you should give plaquenil a go. In regards to the minocycline I found that it exacerbated my flushing post tane. I know it seems counter intuitive since minocycline can be used to treat flushing, but yeah for whatever reason it was definitely making the severity of my flushing worse. One downside to the minocycline is that its an antibiotic so over time its possible that you will become less susceptible to the effects of antibiotics (at least certain types). If you decided to start plaquenil I would definitely stop the minocycline just to make sure that anything that happens post the start of plaquenil can be tied directly back to it.
I would recommend reading the whole thread as it will give you the best idea of what people have tried successfully and such. I'm more than happy to combine forces with you to try to figure this all out. The thing about USCF is pretty cool if its true. Thats rather fortunate for you haha!
No it has definitely not improved.
Has anyone tried protopic/elidell cream? I don't recall seeing any mention of it...
In doing a quick google search, I have to say, it sounds like there are more people out there suffering from vision problems due to Plaquenil than the "rare cases" my doctor said.
Is it really worth the risk of going blind?
I suppose one defense would be to get your eyes checked as frequently as possible? (I read someone mention they get checked every 3 months. Heck, I would consider paying out of pocket just to be safe).
Also, does Plaquenil dry your eyes? I've read a lot of complaints about that. And accutane has sort of dried my eyes a bit.
1. I not sure where you have read a lot about the eyes, every doctor I have spoken to even my husband has said that it usually someone who is on more then 400mg or has been on it for yrs say 15 or so. If you have the eye exams every 6 months and they detect a issue then it can be reversed. Even in someone on it for 15yrs.
Also one must remember people who acutally have Lupus or RA the disease itself can attack many numerous organs including the eyes, some have gone blind and never been on plaquenil. In most of us we do not techincally have a autoimmune disorder, but accutane induced a Autoimmnue Like Disorder.
Reading about the dry eye portion you may be reading about sjorgen pts who are on it and have not had sucess with plaquenil working and some tend to be on 600mg or more for sucess (which I would not do).
I have sjorgen's induced by accutane and no it has not helped my eyes, but has helped my mouth and has NOT in any way made my eyes worse.
As for my eyes I have absoulty no tear production and I have chronic blepheritis. At my recent vision field exam I asked about tear plugs and b/c I have no tear production and blepheritis I am not a canidate, so I was given a Steroid drops and Restasis and I have to say it has helped tremendously just in the last couple of weeks.
if you just have the rosacea issue, it might be benifical to exhaust all your options before you decide to try plaquenil, however it has helped many with accutane induced inflamation/rosacea issues.....It hard to say but that it just plain sucks all the way around.
Oli, why did you pursue Plaquenil instead of Quinacrine?
That is encouraging that you were able to get positive effects from such a low dose of Plaquenil. Were you at 200mg when the flushing started to subside?
Although I am probably much bigger/heavier than you (about 6'1"/190). So perhaps I may require a higher dose. Although I am actually somewhat sensitive to other medications even at low doses....
Anyway, after thinking more about it, I feel as though, heck, even if I "only" take Plaquenil for a couple years, that would be a huge relief if it is able to significantly reduce my flushing. I may be able to deal with with it down the road, just based on my life plans logistics...
Ok, so I have pretty much read through all 40 pages of this thread.
SEATTLE, any update regarding Plaquenil? you had no improvement whatsoever at the 200mg dose?
I just scheduled an appt for my primary care doctor for this friday. I suppose I will also ask her about labwork. Oli, you suggested this to me. Do you have suggestions for what specific tests I should ask for?
Well im glad I found you all...keep hanging in there.
I belive Quinacrine is only made at a compound pharmacy here in the U.S. and if I remember reading it is only given to Lupus pts in combination with plaquenil if plauenil alone is not helping thier skin issues. I have to relook on that though.
As for dose I started at 100mg for a couple of wks and then bumped up to 200mg and withthin about a month I was not red, nor flushed anylonger. As of today it is sunny and I have not had any issues, so for me it must be working...Though I did notice recently since I haven't moisturized that the burning has stoped, not sure if that had anything to do with the continued burning in that area of broken vessels.
hope everyone is doing well
Hey - My doctor recommended I put Vasoline on my skin and leave it overnight to help my often severe flushing. He said Accutane dries you up inside and out and doing this kind of moisturizing can really help. I'm gonna try it and let you all know how it goes!
Keep it cool 
What do you all think are the biggest "triggers" for flushing?
Besides temperature...which may be the biggest one, but the most obvious...
The other day I had chocolate cake...and I had a major flushing episode. it felt like an allergic reaction. I'm assuming it was the chocolate cake.
I've read that avocado can be a trigger? That surprised me, and disappointed me since i like avocado and know it is beneficial for other reasons.
What do you all think are the biggest "triggers" for flushing?
Besides temperature...which may be the biggest one, but the most obvious...
The other day I had chocolate cake...and I had a major flushing episode. it felt like an allergic reaction. I'm assuming it was the chocolate cake.
I've read that avocado can be a trigger? That surprised me, and disappointed me since i like avocado and know it is beneficial for other reasons.
In my opinion stress is definitely the worst. Temperature being second. I don't find any difference really between foods other than hot dishes such as soups or spicy dishes which both cause me to flush.
Regarding the plaquenil, the eye toxicity takes months to develop so its not like one day you wake up blind. Presumably you would begin to notice a difference and if you get regular check ups any damage is generally reversible. If you feel like you have exhausted your other options than yeah you should give it a shot for 2-3 months. If it doesn't work then you're no worse off than you are now as the eye toxicity will not develop that quickly. Before you start though just make sure you get a baseline eye exam and then get another 3 months after starting just to be safe.
I only was on the plaquenil for a week before I got sick. The sickness probably wasn't related, but I since I had only been on it for a week I decided to stop taking it until I recovered just in case it was related. I haven't restarted since then due to starting work and now getting sick again lol. It usually takes at least 2 weeks before you would see any improvement. On the bright side though I hadn't experienced any adverse effects from it after a week so that's generally a good sign for me (assuming its not leading to me getting sick).
hey guys,
I have not restarted plaquenil yet. I started work at a new job Tuesday so its been a hectic week for me. Monday I took a b vitamin complex to prepare for restarting the plaq, but I had a real bad adverse reaction to it. My heart rate jumped up real bad for the next 24 hours and about 12 hours after taking it while I was trying to sleep I started to feel some of the heart irregularities that I have experienced in the past. Also, I experienced a spike in the amount of muscle spasms that I generally get. I'm not sure which b vitamin is the one causing me problems, but I'm interested in finding out. Although I'm not keen on experiencing a night like that again anytime soon haha. I think I got around 3 hours of sleep before my first day lol (have such bad luck now).
I started to get sick again last night too which has continued into today as well. I have kind of a scratchy throat leading to coughs and perhaps the beginning of a sore throat. I never can tell for certain if I'm getting sore throats anymore with the "normal" state of my throat post tane haha. Oh well it is what it is.
On a bright side though I haven't been nearly as flushed at work as I thought I would be so that has been good. They keep the office at least 70 degrees too so its pretty surprising.
So I had another family doctor appointment today
the guy is seriously a joke..and im not saying that just because he didn't give me plaquenil its just that if I was a doctor and someone like me has been going in for over a year complaining about fevers,fatigue,hand joint pain and and butterfly rash's/malar rash I would be very interested in helping a young guy like myself but as he said today hes almost at the end of his carrer and does not want to give anything aka help
I asked for a Rhuem appointment and he laughed and he said you have joint pain? and I was like yes ive been telling you that for a long time,my hands are so stiff when I wake up and if I don't crack them they are in alot of pain and not too mention they look purple/rashy like.
I told him just because the ana test is negative does not mean that theres nothing wrong and he laughed and said tests means everything,if it does not show up in the test you have nothing
I said what about the RA factor being 14 at such a young age of 19 years old,clearly theres something up there and he said you only have to worry about that if its at 30 (i think he tries to fool me when we meet, because I know for a fact that if it is out of range then you should get it checked out way before 30)
I forgot to mention my lymphocytes being out of range too with 4.1,I don't really know what this can mean but 4.1 is out of range
he didn't even mention this to me either as I looked over the lab results again when i got home
I got a Rhuem appointment though and he showed me the fax he sent her
19 year old symptoms of fever,fatigue,joint pain in hand,malar rash,stiffness/aches
He sent her my lab tests too so i am just hoping I don't go in there and she looks at the ana and say well its negative and tries to leave me be
not too mention I was on mepacrine for 4 months so clearly this could alter my results
but i believe a Rhuem will really try to help me and it sucks because I know plaquenil can be the solution..mepacrine practically was giving me my life back but I had to stop due to the yellow side effect