Once i get through this I just know I will be a better person at the end of the day..if i can get through this I can get through anything.

Funny how god works

Halfpipe101 I agree 100% and hopefully we will all be able to think of this as a distant memory that made us stronger.

Lamarr, I have also experienced some tane induced hair loss, what did you use of resolve that problem.

Once I get the pills I am also thinking of doing microdermabrasion treatments

Just looked in my buddys mirror in his house...maaaan..uneven skin tone and everything

really showed me stuff that I dont see in my mirror

Jordan,

Can you do me a favor next time you see that accutane doctor. Can you ask him what to do about the muscle pain that accutane can cause? The flushing is my main concern, but I also have a lot of muscle pain and when I tweak muscles I don't seem to recover. Right now I cannot run or lift weights and it is very painful for me not to be able to do those things. I do not believe any of the accutane makers live around my area and when I have gone to see doctors for various ailments such as my back or after straining my hamstring they have given me specific treatments, but they have failed as I think the injuries/muscle pain is related to the underlying problem that accutane has given me and they don't know how to treat it nor really believe that it has caused the problems.

Halfpipe,

I understand what you mean about becoming a stronger person for sure. I wish that other people could understand how hard such a routine thing as going to school is for me. I can honestly say that I took things for granted pre-accutane and the one positive that accutane has had is that it has made me a stronger person mentally and I believe that it has made me more grateful for the things that I do have.

Elle,

When you say that your flushes are only 30 seconds those are not really flushes. That is what you would call a blush and that is relatively normal so I wouldn't stress that. Since you are only seven months post accutane and you can go days without flushing I would say that you have a good chance of it disappearing around the one year mark as accutane generally stays in the skin for a year especially since you said that it has gotten better over the last couple of months. I know some people have had the flushing disappear completely around the year mark. I hope you are that fortunate =).

Halfpipe101 thanks you the info. let know how the anti malarial goes for you and do you think that if this drug works it will be a permanent cure for us all because I feel like something that inhibits the immune system can not be a good long term medication, however I really do not know that much about it.

They don't supress the immune system to any significant degree. The supression is Negligable. They work by blocking inflammation and preventing the over active immune response from doing its damage. They actually have a number of health BENEFITS, for isntance they have been proven to help prevent diabetes, stop the progression of joint distruction, help prevent heart disease etc.

Do some more back ground reading on lupus and the use of antimilarials.

Just to give you an idea, i haven't had a cough or cold in two years since i took accutane. This is one of the ways i know my immune system is overactive because i used to get ill every few months. This hasn;t changed since taking the anti milarial, i still never get ill, even when everyone around me does.

Lamarr I have been sick since being on the tane another reason why I am a little bit skeptical. Flushing is such a generic symptom and it is possible that although we both have flushing from accutane some of us have it due to some sort of auto immune disease and others have it from another reason entirely. You seem to really know your stuff about what you are taking and I appreciate you giving all of us the updates. I want to make sure that what I have is auto immune disease, I am possibly going to go on immuno inhibitors for about a month if my symptoms subside that it is an auto immune disease guaranteed.

And Lamarr, do you think that just taking an anti-malarial will do the job or do I have to take the cocktail of drugs you are on?

JT, no problem buddy I am actually seeing him today and I will ask him about the joint pain and inflammation. I get back to you soon and hang in there dude.

Lamarr I have been sick since being on the tane another reason why I am a little bit skeptical. Flushing is such a generic symptom and it is possible that although we both have flushing from accutane some of us have it due to some sort of auto immune disease and others have it from another reason entirely. You seem to really know your stuff about what you are taking and I appreciate you giving all of us the updates. I want to make sure that what I have is auto immune disease, I am possibly going to go on immuno inhibitors for about a month if my symptoms subside that it is an auto immune disease guaranteed.

 

And Lamarr, do you think that just taking an anti-malarial will do the job or do I have to take the cocktail of drugs you are on?

 

JT, no problem buddy I am actually seeing him today and I will ask him about the joint pain and inflammation. I get back to you soon and hang in there dude.

Well bud, my derm simply thinks accutane induced flushing/rosacea is rosacea, simple as that. Rosacea is an inflammatory condition, probably auto immune in nature but on a small scale. If you visit rosacea forums you find most of them have other symptoms of auto immunity, but often not aswell. My derm does say that tane induced rosacea can burn it out in alot of cases, but not always.

Mine was just continuing to get worse so i knew i needed something pretty serious to stop it.

The thing with me is i have a number of side effects from tane and the cocktail of drugs i'm on work in synergy to address most of them. You could address the flushing on it's own via the use of the anti milarials. I get some slight insomnia from the mepacrin which is counter acted by the mirtazapine. For the most part though i have no side effects from any of thee drugs.

Believe me i didn't want to be on any drugs, but i gave it a year and i was just going downhill.... So yeah i believe the anti milarials are enough if you simply have the flushing.

What type of immunosupressant are you planning on taking? Doses of prednisone which would be effective at addressing the inflammation and over active immune response aren't suitable, as most people get a form of flushing from prednisone (if you are predisposed (which we obviously are)).

Anti histamines help most tane induced flushing to some degree, they definenetly reduce the baseline redness when you begin to develope it. This again illustraights the problem is immune related.

Lamarr, I took antihistamines and they did absolutely nothing, the doctor I am working with was one of the doctors who created accutane so from a biochemical sense he know everything about the drug we are trying to figure out the cause of this problem obviously it will take a long time but I am confident we will figure out how to cure this issue. Do you a painful tingling sensation sometimes before your are about to flush?

Elle,

 

When you say that your flushes are only 30 seconds those are not really flushes. That is what you would call a blush and that is relatively normal so I wouldn't stress that. Since you are only seven months post accutane and you can go days without flushing I would say that you have a good chance of it disappearing around the one year mark as accutane generally stays in the skin for a year especially since you said that it has gotten better over the last couple of months. I know some people have had the flushing disappear completely around the year mark. I hope you are that fortunate =).

I hope so too! But I think it will take a little bit longer, mostly because I stress too much about it. Those blushes can be pretty annoying too, I always have them when I have to say something in working group at college. I didn't have them before accutane/doxycyclin. And I might overreacted a bit by saying I can go days without flushing, my flushes can still be pretty severe. For those heat is a big trigger for me and also anxiety, the flushes i get from anxiety are the worst! First I get all blotchy on my cheeks and in my neck (looks really weird) and then it spreads around till my cheeks are bright, burning red and it takes at least an hour for it calms down a bit. I also noticed I get a bit of a phobia for it, when I know I'm going to have a bad flush I stress out and my heart is racing and ofcourse, the flushing gets even worse. I know it's stupid to let this control my life so much, but I'm just sick of it now!

Lemar how do you feel about microdermabrasions?

Have my first one tommorow,hopefully you can reply before then

I know your on mepacrine which is for autoimmune and you do dermabrasion which they dont recommend but clearly your skin looks great and it does not look like you had a bad reaction to it

Elle,

We pretty much have the exact same type of flushing. My flushing is definitely at its worst due to stress and I also get the blotchy neck thing. I understand what you mean about being scared to flush and that makes it worse, but I don't really think that you can fully prevent it by staying calm. What I have found that really helps me when I am at school is to freeze a water bottle and then bring it to class with you so you can drink ice water when you get a little hot or stressed out (it really has helped me with dealing with short blushes). This strategy combined with trying to stay calm has helped me cope with school most days, but days I have quizzes or tests there is pretty much nothing I can do to prevent getting stressed out so I just kind of deal with it. If you are in college I wouldn't say that you are letting it control your life as you are still living it by going to school and fighting through it.

Lemar how do you feel about microdermabrasions?

 

Have my first one tommorow,hopefully you can reply before then

 

I know your on mepacrine which is for autoimmune and you do dermabrasion which they dont recommend but clearly your skin looks great and it does not look like you had a bad reaction to it

Elle,

 

We pretty much have the exact same type of flushing. My flushing is definitely at its worst due to stress and I also get the blotchy neck thing. I understand what you mean about being scared to flush and that makes it worse, but I don't really think that you can fully prevent it by staying calm. What I have found that really helps me when I am at school is to freeze a water bottle and then bring it to class with you so you can drink ice water when you get a little hot or stressed out (it really has helped me with dealing with short blushes). This strategy combined with trying to stay calm has helped me cope with school most days, but days I have quizzes or tests there is pretty much nothing I can do to prevent getting stressed out so I just kind of deal with it. If you are in college I wouldn't say that you are letting it control your life as you are still living it by going to school and fighting through it.

Thanks for the tip about the ice water! I will try it, i now always bring water just from the fridge and that helps a bit, but I can imagine ice water works even better. And you're right about the tests, I sometimes get a flush then too, but now in college i can go home after those tests so I don't have to face too much people in school with a flushed face. What also helps for me, is taking an aspirin once I'm flushed. I know you shoudn't do it too much, but it works for me.

Lemar how do you feel about microdermabrasions?

 

Have my first one tommorow,hopefully you can reply before then

 

I know your on mepacrine which is for autoimmune and you do dermabrasion which they dont recommend but clearly your skin looks great and it does not look like you had a bad reaction to it

Microdermabrasion and dermabrasion are awfull for rosacea and flushing in general. I have used needling and dermaroller to improve scarring, never had dermabrasion or microdermabrasion.The dermaroller and needling doesn't make roacea worse.

Lamarr, I took antihistamines and they did absolutely nothing, the doctor I am working with was one of the doctors who created accutane so from a biochemical sense he know everything about the drug we are trying to figure out the cause of this problem obviously it will take a long time but I am confident we will figure out how to cure this issue. Do you a painful tingling sensation sometimes before your are about to flush?

The anti histamines sometimes take up to a month to show improvement and it may only be subtle imprvement if you have no baseline redness. I hope you find what the cause for you is, but i recommend you try some sort of systemic anti inflammatory either way. One that is garunteed to work.

I know you are working with one of the creators, but the type of changes accutane initiates is outside of the relm of current medicine. What i mean by this is the changes are made at the DNA level and things are extremely hard to detect at this level.

I have learn't that you need to work at treating the symptoms and not the direct cause, because current medicine just cannot tell us the answers YET.

lamarr couldn't have said it better myself man, accutane definitely permanently alters our DNA. I don't know though buddy im just that kind of person and maybe it is ridiculous to attempt to find the cause and I should just work on treating the symptoms I totally get that, but what if we could find out what this is and no more meds for any of us, your clearly a brilliant dude and you definitely know your stuff I am not trying to take that away from you. I like what you said in previous posts about how sometimes we, the patients, know more than the doctors do. I totally agree and although current test cannot detect what is wrong with us, there are other ways of ruling things out. We know definitively that this problem effects the blood vessels and the nervous system. What actually causes that is unknown. I would like to use the biochemist who knows the structural composition of accutane at a molecular level to figure that out. You probably know this already but accutane was created to cure Basel-Cell Carcinoma and it actually worked. However, they found that the patients that they treated were getting crazy side-effects including intense facial flushing. This first thing my doctor did was to detox the accutane from my body which worked for the cancer patients. But, obviously not for me, I think that is because those patients were dotoxed right away so, our DNA has been altered in the way that something has been permanently damaged, but we can find a way to fix that damage. If we use each other as resources we could solve this problem that much quicker.

And Lamarr you gotta let me know if you get a painful tingling somtimes before you flush.

you guys are right about the connection between accutane and flushing. Took accutane 15 years ago and still dealing with flushing. It was made way worse with a dermabrasion.

It gets misdiagnosed as Rosacea. Doctors simply dont understand it. I think I would like to caution some of you in the theories you come up with in terms of all your hormone and HGH being out of wack. Your treading dangerous waters doing so.

what i have done to help myself is I shave at night before I go to bed. I do a lot of meditation and yoga to stay calm. i have done photo facial treatments which really helped.

In terms of auto immune response it's very interesting. I have since been diagnosed with Ankylosing Spondylitis and Ulcerative colitis. I think accutane actually helped keep my AS under control because it really didnt blow up until years after accutane. My ulcerative colitis happened right about the time I had been on Accutane for a couple of years. Accutane did a lot to me in terms of dry lips,eyes and hair loss for sure. I wish I would have know about propecia before. I started taking it a couple of years ago to save the hair I have and also noticed it stops acne. It neutralized the testesterone before it hits the follicle. So i assume it can also help the skin stay clear with using the same theory.

Thunderbay, I am unsure what you mean by dangerous regarding growth hormone level, the test for pituitary function is an arginine infusion test which has no risks when monitored properly, there is also no risk in getting your growth hormone level checked.

Also propecia does not come without a cost many individuals experience ED or full blow impotence. If this hasn't happened to you consider yourself lucky.

you guys are right about the connection between accutane and flushing. Took accutane 15 years ago and still dealing with flushing. It was made way worse with a dermabrasion.

 

It gets misdiagnosed as Rosacea. Doctors simply dont understand it. I think I would like to caution some of you in the theories you come up with in terms of all your hormone and HGH being out of wack. Your treading dangerous waters doing so.

 

what i have done to help myself is I shave at night before I go to bed. I do a lot of meditation and yoga to stay calm. i have done photo facial treatments which really helped.

 

In terms of auto immune response it's very interesting. I have since been diagnosed with Ankylosing Spondylitis and Ulcerative colitis. I think accutane actually helped keep my AS under control because it really didnt blow up until years after accutane. My ulcerative colitis happened right about the time I had been on Accutane for a couple of years. Accutane did a lot to me in terms of dry lips,eyes and hair loss for sure. I wish I would have know about propecia before. I started taking it a couple of years ago to save the hair I have and also noticed it stops acne. It neutralized the testesterone before it hits the follicle. So i assume it can also help the skin stay clear with using the same theory.

I seriously doubt the accutane helped the Ankylosing Spondylitis. Chances are it is the cause of it... These side effects can kick in years down the line. Accutane essentially makes you much more susceptable to auto immune conditions. It may take years until you hit a stressfull event of a certain set of events, which will trigger the underlying auto immunity.

UC is a common disease initiated by accutane. My anti milarial is something i hope will help to prevent me developing aut immune disorders, they have been proven to help prevent diabetes for instance.

"Another type of commonly used medications are antimalarials. Originally prescribed in the treatment of malaria, these medications are also efficient in the treatment of lupus, as they tend to suppress a series of processes at the level of the immune system, neutralizing some of its undesirable effects on the organism. Antimalarials used in the treatment of lupus include: hydrochloroquine (Plaquenil), quinacrine (Atabrine) and chloroquine (Aralen). These commonly used lupus medications are prescribed to ease fatigue, joint inflammation and pain, skin rashes and inflammation of the lungs and heart. Unlike NSAIDs, antimalarials have less serious side-effects, rendering them appropriate for long-term treatments. Ongoing treatment with antimalarials can efficiently prevent the occurrence of flares."

Thunderbay, I am unsure what you mean by dangerous regarding growth hormone level, the test for pituitary function is an arginine infusion test which has no risks when monitored properly, there is also no risk in getting your growth hormone level checked.

I didnt mean the test was dangerous.I meant you trying to concoct all these baseless theories about accutane and redness. Just be careful.you have very little medical knowledge or understanding. The problem is your "cure" or treatments might harm you more then the original problem. Always keep that in mind.

you guys are right about the connection between accutane and flushing. Took accutane 15 years ago and still dealing with flushing. It was made way worse with a dermabrasion.

 

It gets misdiagnosed as Rosacea. Doctors simply dont understand it. I think I would like to caution some of you in the theories you come up with in terms of all your hormone and HGH being out of wack. Your treading dangerous waters doing so.

 

what i have done to help myself is I shave at night before I go to bed. I do a lot of meditation and yoga to stay calm. i have done photo facial treatments which really helped.

 

In terms of auto immune response it's very interesting. I have since been diagnosed with Ankylosing Spondylitis and Ulcerative colitis. I think accutane actually helped keep my AS under control because it really didnt blow up until years after accutane. My ulcerative colitis happened right about the time I had been on Accutane for a couple of years. Accutane did a lot to me in terms of dry lips,eyes and hair loss for sure. I wish I would have know about propecia before. I started taking it a couple of years ago to save the hair I have and also noticed it stops acne. It neutralized the testesterone before it hits the follicle. So i assume it can also help the skin stay clear with using the same theory.

 

I seriously doubt the accutane helped the Ankylosing Spondylitis. Chances are it is the cause of it... These side effects can kick in years down the line. Accutane essentially makes you much more susceptable to auto immune conditions. It may take years until you hit a stressfull event of a certain set of events, which will trigger the underlying auto immunity.

 

UC is a common disease initiated by accutane. My anti milarial is something i hope will help to prevent me developing aut immune disorders, they have been proven to help prevent diabetes for instance.

 

"Another type of commonly used medications are antimalarials. Originally prescribed in the treatment of malaria, these medications are also efficient in the treatment of lupus, as they tend to suppress a series of processes at the level of the immune system, neutralizing some of its undesirable effects on the organism. Antimalarials used in the treatment of lupus include: hydrochloroquine (Plaquenil), quinacrine (Atabrine) and chloroquine (Aralen). These commonly used lupus medications are prescribed to ease fatigue, joint inflammation and pain, skin rashes and inflammation of the lungs and heart. Unlike NSAIDs, antimalarials have less serious side-effects, rendering them appropriate for long-term treatments. Ongoing treatment with antimalarials can efficiently prevent the occurrence of flares."

 

How does that explain why my brother who never took accutane also has an even more serious case of Akylosing. As an RN in a huge teaching hospital I see people like you all the time. they make these loose connections between a medicine they take with everything bad that happened to them in life afterwards. One may not necessarily be related to the other. You have to be very careful with that mode of thinking.

I realize the association with UC and accutane use is valid. It could have triggered my case. Who knows, so i just deal with it.

dont think these anti-maliarial drugs are benign. I have seen some serious side effects from plaquenil.

Fuckk but lemar if the mepacrine stops my flushing is it okay to have the microdermabrasions done?

I just had one and my skins seems to be smoother and a little pink but supposed to be for only first couple days.she knows I am doing it for my pink areas/red spots/complexion so she used oatmeal masks and whatnot.

I just paid for a series of 6 so you scared me

I was thinking of doing 1 or 2 gylocic peels in between them

you guys are right about the connection between accutane and flushing. Took accutane 15 years ago and still dealing with flushing. It was made way worse with a dermabrasion.

 

It gets misdiagnosed as Rosacea. Doctors simply dont understand it. I think I would like to caution some of you in the theories you come up with in terms of all your hormone and HGH being out of wack. Your treading dangerous waters doing so.

 

what i have done to help myself is I shave at night before I go to bed. I do a lot of meditation and yoga to stay calm. i have done photo facial treatments which really helped.

 

In terms of auto immune response it's very interesting. I have since been diagnosed with Ankylosing Spondylitis and Ulcerative colitis. I think accutane actually helped keep my AS under control because it really didnt blow up until years after accutane. My ulcerative colitis happened right about the time I had been on Accutane for a couple of years. Accutane did a lot to me in terms of dry lips,eyes and hair loss for sure. I wish I would have know about propecia before. I started taking it a couple of years ago to save the hair I have and also noticed it stops acne. It neutralized the testesterone before it hits the follicle. So i assume it can also help the skin stay clear with using the same theory.

 

I seriously doubt the accutane helped the Ankylosing Spondylitis. Chances are it is the cause of it... These side effects can kick in years down the line. Accutane essentially makes you much more susceptable to auto immune conditions. It may take years until you hit a stressfull event of a certain set of events, which will trigger the underlying auto immunity.

 

UC is a common disease initiated by accutane. My anti milarial is something i hope will help to prevent me developing aut immune disorders, they have been proven to help prevent diabetes for instance.

 

"Another type of commonly used medications are antimalarials. Originally prescribed in the treatment of malaria, these medications are also efficient in the treatment of lupus, as they tend to suppress a series of processes at the level of the immune system, neutralizing some of its undesirable effects on the organism. Antimalarials used in the treatment of lupus include: hydrochloroquine (Plaquenil), quinacrine (Atabrine) and chloroquine (Aralen). These commonly used lupus medications are prescribed to ease fatigue, joint inflammation and pain, skin rashes and inflammation of the lungs and heart. Unlike NSAIDs, antimalarials have less serious side-effects, rendering them appropriate for long-term treatments. Ongoing treatment with antimalarials can efficiently prevent the occurrence of flares."

 

How does that explain why my brother who never took accutane also has an even more serious case of Akylosing. As an RN in a huge teaching hospital I see people like you all the time. they make these loose connections between a medicine they take with everything bad that happened to them in life afterwards. One may not necessarily be related to the other. You have to be very careful with that mode of thinking.

I realize the association with UC and accutane use is valid. It could have triggered my case. Who knows, so i just deal with it.

dont think these anti-maliarial drugs are benign. I have seen some serious side effects from plaquenil.

 

I am sorry but no you don't see people like me all the time. ALL of my auto immune problems began within weeks after finishing accutane, things like the flushing started towards the end of my course. I was in perfect health before accutane. Sure you could say it is a coincidence, but then why do people who have been effected in exactly the same way as me by accutane experience exactly the same? Nearly all of tanes side effects are auto immune, not a single person in my family has anything like i do. No rosacea, no chrons or UC, no alopecia areata etc etc.

I know what caused my problems. So again no you don't see people like me all the time. I find that highly insultive.

If you had told me about your brother having the same condition then ofcourse i wouldn't of blaimed it on accutane. Most people who develope problems like this from accutane and look at relatives in their family, the often find no one expericining the same.

I take mepacrin, not plaquenil.

Fuckk but lemar if the mepacrine stops my flushing is it okay to have the microdermabrasions done?

 

I just had one and my skins seems to be smoother and a little pink but supposed to be for only first couple days.she knows I am doing it for my pink areas/red spots/complexion so she used oatmeal masks and whatnot.

 

I just paid for a series of 6 so you scared me

 

I was thinking of doing 1 or 2 gylocic peels in between them

It would probably be ok then, but you would still need atleast a month on the mepacrin beforfe things have calmed down enough!!