JT,

 

From what I have read, there is about a 50% chance of increased pigmentation which looks like a tan (why it is also used in Vitiligo) and then about half of that will have an evident yellow staining (25%). So you basically have a 25% chance of having yellow stain to the skin. But it is also said that when you drop to 50mg per day or lower, that the yellowing resolves in most cases or is at the very least less pronounced.

 

I have also serached around the Lupus boards and come across a few posters taking this medication. Some posters even as long as 3-10 years with no yellowing and others claiming they went orange and therefore discontinued - so it sounds pretty much hit and miss.

Haha man i'm pretty sure we read a lot of the same articles. I came across the percentages and have a good understanding about it. The problem is that there is no example of how yellow we are talking lol. But yeah from what I have read it seems to be correlated with your dose so higher dose = more yellowing etc. I am probably going to start on 50 mg and just stick with that for awhile. I am somewhat hypersensitive post tane so I won't go any higher than 50 mg to limit potential side effects. I think that I will take milk thistle with it. Perhaps start taking that before I start mepacrine to make sure there are no problems with it.

It will help your slow wound healiing ALOT. I also had that side effect. It is due to an over active inflammatory response to pathagens etc.

 

The yellowing is different for different people, but i do know for some it looks like a mild suntan, for others it looks more jaundice. BUT in most cases a tan can blend the colour to look natural. So worst comes to worst you can use some fake tan to blend the colour to look like a tan.

Hmm i'm not sure we had the same thing. Were you just healing slowly or were you not actually healing? Because for me I don't recover. I have had to give up running, lifting weights, and sports right now because I just keep getting hurt worse. I hurt my right rhomboid pretty bad a long time ago and it has never healed, but everything checks out on it. It gets substantially worse when I lift weights or use it. Just the worst of many aches. But if mepacrine were able to help out with that I would be very surprised and extremely grateful. It would really give me my life back.

I hope I don't get the yellowing too bad because I am a redhead with fair skin meaning I do not tan (at all) so it would be hard to blend the color lol. And in regards to the fake tan it would look very strange on me too lol. I guess if I got the yellowing really bad, but it appeared to be working for my sides, I could always try the other anti malarials and just be more careful about the eye toxicity.

I don't usually post on here, but do read....

Lamarr- interesting, I'll have to try thoose two supplements, Thanks for posting that info. Also yes telemores, there is more info on that regarding tane and telemores,(on u know where) and they are actually coming out with a treatment regarding telemores. Which might be somethig I will be looking into. There is some interesting articles that have been posted.

Seattle-I be interested to know what tests you have had done, curious cause you say it is worse when you work out.

The hypersensitivity from meds, I had/have the same thing since Tane, Like it changed the way medcines process through my Liver.

I have been a year post tane and it has gotten better, but I don't dare take anything prescription wise if I don't have too.

Just becareful to monitor yourself. I agree that alot of us could benifit from anti malarials. The question is here in the U.S. to find a doctor who is open minded or experinced with Tane Victims.

Hey Lamarr,

what are your thoughts on Dapsone? It is also an antimilarial and I have read some snipits from studies saying that it is also effective for Rosacea symptoms.

I tried it for a week a year or so ago and had some stomach upset so stopped. I wonder if I try that again at a slightly lower dose.

Could have a few options here.

Yeah it is another potential option i remember you trying it before and i said stick with it if you can...

Only other treatment that excites me for accutane induced side effects is low dose naltrexone, i think it could potentially cure any and all of accutanes side effects. Best thing is it has no sides effects, a buddy from canada told me about it and hes currently been on it for three days ( he has dozens of nasty sides from tane).

Will keep you all updated.

I don't usually post on here, but do read....

 

Lamarr- interesting, I'll have to try thoose two supplements, Thanks for posting that info. Also yes telemores, there is more info on that regarding tane and telemores,(on u know where) and they are actually coming out with a treatment regarding telemores. Which might be somethig I will be looking into. There is some interesting articles that have been posted.

 

Seattle-I be interested to know what tests you have had done, curious cause you say it is worse when you work out.

The hypersensitivity from meds, I had/have the same thing since Tane, Like it changed the way medcines process through my Liver.

I have been a year post tane and it has gotten better, but I don't dare take anything prescription wise if I don't have too.

Just becareful to monitor yourself. I agree that alot of us could benifit from anti malarials. The question is here in the U.S. to find a doctor who is open minded or experinced with Tane Victims.

I have had tons and tons of tests done. Is there any test in particular you are curious about? I can try to elaborate on what I was talking about with regards to working out. Um for the joint issues it definitely makes it worse (strange, i know). Take for example my elbows. Only my right elbow cracks and it is more bothersome after lifting than if I weren't to lift at all. In regards to the muscle injuries and pain. I believe that I do not fully heal after injuries now, like the swelling/bruising will go away, but my tissues do not heal properly so I still have pain. This pain is intensified whenever I do something that works out that muscle and not in a muscle soreness type of way. In regards to the sensitivity to meds I am somewhat of a hypochondriac now lol. I have had such bad reactions to medications that I am gun shy now. I'm scared of taking pretty much anything. I am glad to hear that your sides have gotten somewhat better.

Yeah it is another potential option i remember you trying it before and i said stick with it if you can...

 

Only other treatment that excites me for accutane induced side effects is low dose naltrexone, i think it could potentially cure any and all of accutanes side effects. Best thing is it has no sides effects, a buddy from canada told me about it and hes currently been on it for three days ( he has dozens of nasty sides from tane).

 

Will keep you all updated.

I talked to him about the ldn as well. I am really hopeful that it can at least help with some of his sides. As you mentioned the thing that is exciting about it is that it is such a low dose that sides are almost nonexistent. If I remember correctly the top dose is like 4.5 mg a day. Anything higher starts to lose its effect. I am waiting to see how it goes for him before deciding whether to move forward with mepacrine or try the ldn instead.

Yeah it is another potential option i remember you trying it before and i said stick with it if you can...

 

Only other treatment that excites me for accutane induced side effects is low dose naltrexone, i think it could potentially cure any and all of accutanes side effects. Best thing is it has no sides effects, a buddy from canada told me about it and hes currently been on it for three days ( he has dozens of nasty sides from tane).

 

Will keep you all updated.

 

I talked to him about the ldn as well. I am really hopeful that it can at least help with some of his sides. As you mentioned the thing that is exciting about it is that it is such a low dose that sides are almost nonexistent. If I remember correctly the top dose is like 4.5 mg a day. Anything higher starts to lose its effect. I am waiting to see how it goes for him before deciding whether to move forward with mepacrine or try the ldn instead.

 

Interesting.

Do you know how this drug is suppose to work in helping with Accutane side effects? Mechanisms involved? It is an immunostimulant but isn't the Accutane induced flushing/Rosacea caused by an overactive immune system? Thus, the antimilarials are immuno supressants?

Is it suppose to help with the post tane flushing side effect? Please keep us posted on how your buddy makes out with it and if it helps his side effects - Is flushng one of his sides?

I am also from Canada and will likely sit back for a bit like JT and see what else is hopefully working for people and then perhaps weigh the options.

Also, is the low dose naltrexone something he would be getting from his derm?

Here is a good read up on it in case anyone else is interested in the research. It actually lists Rosacea as a possible condition it can be treated by.

http://ezinearticles.com/?id=1281408&opt=print

Seattle- No, I just wondered if like Sheefa you had like a full bone scan, any x-rays, dexascan? Just wonder if they did any blood work on hormones, Rheum, total Vit D labs along with hydrox 25 Vit D labs. Most importantly did you find a doc who understands and knows.

Believe it or not I have had over 300 tests, I have a copy of all of them. I was tierd of hearing they were normal, come to find out alot of them were either abnormal, on the low side of normal or on the high side of normal.

There was even things mentioned in my scans and xrays that weren't mentioned to me.

I guess too, b/c it is ironic you say you feel worse after working out, alot of osteoarthritis patients feel worse after working out.

Well Accutane has been known to induce osteoarthritis or mimmic (drying out the joints) it in accutane suffer population from other people's experinces I have read, even at a young age.

On accutane avengers I just read someone who had been suffering for years w/ pain since accutane and finally after years they did a dexa scan and he had osteoprosis in his 20's.

I think I remeber reading about LDN on another fourm that people have tried, can't remember if it worked or not for them...Interesting though.

Good luck to everyone.

Seattle- No, I just wondered if like Sheefa you had like a full bone scan, any x-rays, dexascan? Just wonder if they did any blood work on hormones, Rheum, total Vit D labs along with hydrox 25 Vit D labs. Most importantly did you find a doc who understands and knows.

 

Believe it or not I have had over 300 tests, I have a copy of all of them. I was tierd of hearing they were normal, come to find out alot of them were either abnormal, on the low side of normal or on the high side of normal.

 

There was even things mentioned in my scans and xrays that weren't mentioned to me.

I guess too, b/c it is ironic you say you feel worse after working out, alot of osteoarthritis patients feel worse after working out.

 

Well Accutane has been known to induce osteoarthritis or mimmic (drying out the joints) it in accutane suffer population from other people's experinces I have read, even at a young age.

On accutane avengers I just read someone who had been suffering for years w/ pain since accutane and finally after years they did a dexa scan and he had osteoprosis in his 20's.

 

I think I remeber reading about LDN on another fourm that people have tried, can't remember if it worked or not for them...Interesting though.

 

Good luck to everyone.

oli girl,

I actually have not had a bone density test directly. I had x-rays done on my back and have had blood drawn for everything that is understood to cause flushing and/or joint pain. 300 tests is rather impressive. May I ask what came back abnormal? I know that you have a string in your foot. What is the latest on that? In regards to finding a doctor that knows about accutane side effects, I have had no success in my area. I'm kind of resigned to the fact that I will have to take the initiative if I want results. The number of doctors with knowledge of post accutane sides is quite limited.

I thought that I had gotten a vitamin d test done about 6 months ago along with many other blood tests, but I found out months later that it had been forgotten so I went in a month ago to get that tested. My levels were low, not super low, but lower than average so I have been taking a high dose of vitamin d once a week to try to bring the level up. I am kind of embarrassed that I had not considered the possibility of myself having low vitamin d levels when it makes sense since the sun and I are not on good terms.

Thanks for the info on the dexascan I will try to get that test done.

Interesting.

 

Do you know how this drug is suppose to work in helping with Accutane side effects? Mechanisms involved? It is an immunostimulant but isn't the Accutane induced flushing/Rosacea caused by an overactive immune system? Thus, the antimilarials are immuno supressants?

 

Is it suppose to help with the post tane flushing side effect? Please keep us posted on how your buddy makes out with it and if it helps his side effects - Is flushng one of his sides?

 

I am also from Canada and will likely sit back for a bit like JT and see what else is hopefully working for people and then perhaps weigh the options.

 

Also, is the low dose naltrexone something he would be getting from his derm?

 

Here is a good read up on it in case anyone else is interested in the research. It actually lists Rosacea as a possible condition it can be treated by.

 

http://ezinearticles.com/?id=1281408&opt=print

I haven't really spent a lot of time researching the ldn quite yet, but i'll try to answer your questions. I know that he got it through prescription. From what I understand it has the potential to help with any tane side effect. I know that he used to have the flushing bad, but I believe it got somewhat better over time. Although I believe that he still flushes. Flushing is really a minor concern for him. He has far worse sides. I will keep you updated, but he has only been on it for a couple of days so it should be a couple of weeks before he can really say what effect, if any, it is having. I'll talk to him and see if he can give a better explanation on how it works.

Interesting.

 

Do you know how this drug is suppose to work in helping with Accutane side effects? Mechanisms involved? It is an immunostimulant but isn't the Accutane induced flushing/Rosacea caused by an overactive immune system? Thus, the antimilarials are immuno supressants?

 

Is it suppose to help with the post tane flushing side effect? Please keep us posted on how your buddy makes out with it and if it helps his side effects - Is flushng one of his sides?

 

I am also from Canada and will likely sit back for a bit like JT and see what else is hopefully working for people and then perhaps weigh the options.

 

Also, is the low dose naltrexone something he would be getting from his derm?

 

Here is a good read up on it in case anyone else is interested in the research. It actually lists Rosacea as a possible condition it can be treated by.

 

http://ezinearticles.com/?id=1281408&opt=print

 

 

I haven't really spent a lot of time researching the ldn quite yet, but i'll try to answer your questions. I know that he got it through prescription. From what I understand it has the potential to help with any tane side effect. I know that he used to have the flushing bad, but I believe it got somewhat better over time. Although I believe that he still flushes. Flushing is really a minor concern for him. He has far worse sides. I will keep you updated, but he has only been on it for a couple of days so it should be a couple of weeks before he can really say what effect, if any, it is having. I'll talk to him and see if he can give a better explanation on how it works.

 

Cool, thanks. Do let me know what his response is. I would be particularly interested to know if it will help with flushing and joint pain as these are my two major concerns. BTW, sorry to hear that he has had a lot of more serious problems, not that flushing is not serious, it can be quite debilitating and seriously, physically painful in itself - which you are well aware of.

Cool, thanks. Do let me know what his response is. I would be particularly interested to know if it will help with flushing and joint pain as these are my two major concerns. BTW, sorry to hear that he has had a lot of more serious problems, not that flushing is not serious, it can be quite debilitating and seriously, physically painful in itself - which you are well aware of.

I talked to him and he confirmed what I had thought. It basically makes your body produce more endorphins than it normally does. It modulates the immune system and basically up regulates it. It is really quite interesting because anti malarials are immuno suppressants so it is basically the opposite strategy. In theory it could help with both. Yeah I know what you are saying about the flushing. I wasn't trying to imply that its not serious, but in comparison to other things he has it really isn't. I'll keep you updated, but nothing to report yet.

Guys anti milarials are NOT immuno supressants. They are immunomodulators/anti inflammatories. People always make this mistake...

They do not alter T cell, B cell etc. blood counts, therefore are not immunopsupressants like prednisolone/cyclosporin etc.

Im currently suffering from accutane induced rosacea.

Im on a 10mg course and Ive experimented with lowering the dosage as low as possible to try and get rid of the redness, its strange, everytime I do lower the dose (say 10mg every other day) my skin loses the redness almost instantly but because there is hardly any accutane in my body I always break out immediatly without fail.

Ive decided to get some 5mg pills instead of 10mg, and then take them everyday. hopefully the lower dose will lower the redness and the consistancy of taking it every day will keep just enough accutane in my body to deter the breakouts

Lamarr,

thanks for the clarification. I automaticall thought it would be a suppresant due to its use in Lupus which is also treated by the other suppresants you mentioned (Prednisone etc). But being an imuuno modulator makes perfect sense, in effect these two would likely work in a similar way to regulate the immune system, albeit by different actions.

JT,

thanks for the explanation. I did some reading up on endorphins and the immune system. I came across some intersting text and explanations.

It is shown that lymphocytes have surface receptors for endorphins and enkephalins.

Furthermore, endorphins and enkephalins can influence several immune functions such as antibody synthesis, lymphocyte proliferation, and natural killer cytotoxicity. It is thus possible that the receptors play a functional role.

Endorphins and enkephalins are physiological regulators of the immune response (two-hit opioid peptide lymphocyte receptor hypothesis) and they are humoral mediators between the central nervous system and the immune system.

They may play a pathogenic role in a variety of diseases with primary or secondary immunological defects.

Finally, enkephalins and endorphins can be considered as immunomodulators and modifiers of the biological response and as such may become a tool in the field of immunotherapy.[/

http://www.ncbi.nlm.nih.gov/pubmed/2981735

Some interesting stuff. This ldn looks encouraging based on the mechanisms you mentioned, acting as an immune modulator. Hopefully this works out for your friend and perhaps some of us. I am also encouraged because of the nearly non existent side effects due to the low dose.

JoeBloggs,

If you have Accutane inducede Rosacea and signs of increased flushing, the FIRST thing you should be doing is stopping the drug immediately. You are playing with fire imo. I, among others were told the flushing would go away within 6 months after stopping. It is still here a year and half later (albeit it not as bad but I am also on several medications to combat it). Just be careful bro.

Soul no problemo dude. I have many alternative therapies that have little or no side effects which i keep as a back up... UVA-1 treatment is one, full body red laser exposure is another. Niether is widely used and requires construction of devices done by yourself. But i also know they will work for us, just depends to what degree.

UVA-1 therapy is also used in lupus, full body red light exposure using lasers is something i am slightly experienced with because i know the effects lasers have on local tissue.

I think a combo of UVA-1, LDN (or mepacrin) coupled with full body red light exposure. WOuld actually put me in better health than pre tane...now that is saying something...

JoeBloggs,

 

If you have Accutane inducede Rosacea and signs of increased flushing, the FIRST thing you should be doing is stopping the drug immediately. You are playing with fire imo. I, among others were told the flushing would go away within 6 months after stopping. It is still here a year and half later (albeit it not as bad but I am also on several medications to combat it). Just be careful bro.

The thing is its not really that bad, if my skin was scarless and it was just redness I could probably handle it, but the thing is i have a lot of scarring from around 2 years ago and the redness makes the scarring really stand out.

Also the redness pretty much dissapears after 3 or 4 days without taking an accutane pill, so im pretty confident its not permanant, and Im not at a high enough dose to potentially make it permanant.

Plus if I stop the drug I instantly start breaking out, and considering how severe my acne was at one point 2 years ago, I imagine that if I go 2 or 3 months without the tane my skin will go back to how it was (really severe acne). So unfortunately stopping isnt an option.

I'll be careful though

Joe, use home light therapy, check out the laser and light section on this forum.... You can use that in place of the accutane. It is HIGHLY effective and you can use it with accutane (although some may tell you otherwise because of potential light sensitvity from accutane). After a while you will be able to come off the tane and stay clear.

I see what you are saying lamarr. I have a good understanding of how it works, but just assumed it would fall under the suppressant classification. It makes sense that it isn't though.

I recently had experience with prednisone, its powerful stuff. I got it in a small dose after having allergy testing done and it really handled my flushing for awhile. Obviously it isn't something that should be considered for normal use because it is really quite dangerous, but I found it intriguing that it was so successful.

Joe, use home light therapy, check out the laser and light section on this forum.... You can use that in place of the accutane. It is HIGHLY effective and you can use it with accutane (although some may tell you otherwise because of potential light sensitvity from accutane). After a while you will be able to come off the tane and stay clear.

I tried the beautyskin lamp quite a while ago, I think I may have spoken to you about it back then (I had a big log about it but its been deleted now), unfortunately it didnt do too much for me, my acne is the really persistant severe type, accutane is literally the only thing that keeps it under control, and even then it took 2 courses to actually get me clear.

I see what you are saying lamarr. I have a good understanding of how it works, but just assumed it would fall under the suppressant classification. It makes sense that it isn't though.

 

I recently had experience with prednisone, its powerful stuff. I got it in a small dose after having allergy testing done and it really handled my flushing for awhile. Obviously it isn't something that should be considered for normal use because it is really quite dangerous, but I found it intriguing that it was so successful.

I have heard of a few that have thought that it would be great if you could just keep taking it (Prednisone) because a course has worked so well for them. But it isn't one of those treatments that you can keep taking which sucks. I knew a friend who had pretty severe Lupus and would go on several high dose courses throughout the year. It worked to control the Lupus, but the sides were bad, moon face and buffalo hump which go away when you go off but it can take a while. THey had these sides due to the frequency of the drug and the duration.

On another note, what do you guys think of Dr. Nase's new vacular support supplement? Without getting into all of the politics surrounding him and the he said, she said nonsense, I think his product could be good for vascular support (based on the ingredients I have read up on). It is sort of like all the best herbs for rosacea/inflammation/blood vessels all combined together. Could be a good addition as a multi-vitamin for rosacea just for helping the vascular/cappilary structure.

dr nase is gay

about light therapy and ipl/vbeam/ktp..

light therapy is no way like ipl/vbeam/ktp for facial redness.

i had vbeam and its like a miracle.

my regimen:

morning-

dr brandts pad cleanser

dr brandts toner

aczone

mimyx cream

dr brandts moisturizer

dr brandts spf 30

night

dr brandts pad cleanser

dr brandts toner

mimyx cream

dr brandts moisturizer

3 VBEAM, 2 ISOLAZ, 4 gentle waves

12 mg elavil every night

CURRENT STATUS- CURED i have nothing, not even a blocked pore, or redness, my only problem is when i shave i get like 10 razor bumps which is normal.

(have not flushed since april)- but i do blush like once every 3 weeks for like 10 seconds

I see what you are saying lamarr. I have a good understanding of how it works, but just assumed it would fall under the suppressant classification. It makes sense that it isn't though.

 

I recently had experience with prednisone, its powerful stuff. I got it in a small dose after having allergy testing done and it really handled my flushing for awhile. Obviously it isn't something that should be considered for normal use because it is really quite dangerous, but I found it intriguing that it was so successful.

 

I have heard of a few that have thought that it would be great if you could just keep taking it (Prednisone) because a course has worked so well for them. But it isn't one of those treatments that you can keep taking which sucks. I knew a friend who had pretty severe Lupus and would go on several high dose courses throughout the year. It worked to control the Lupus, but the sides were bad, moon face and buffalo hump which go away when you go off but it can take a while. THey had these sides due to the frequency of the drug and the duration.

 

On another note, what do you guys think of Dr. Nase's new vacular support supplement? Without getting into all of the politics surrounding him and the he said, she said nonsense, I think his product could be good for vascular support (based on the ingredients I have read up on). It is sort of like all the best herbs for rosacea/inflammation/blood vessels all combined together. Could be a good addition as a multi-vitamin for rosacea just for helping the vascular/cappilary structure.

 

I had the same experience I had to try a low dose of predisone due to the severe blueness of my hand and it closed up. When I was on the low dose predisone every symptom gone.....(flushing,swelling,pain etc)

Seattle- Make sure that you are taking a good brand of Magnesium (spelling) w/ the Vit D, Without Magnesium Vit D doesn't process.