1154 replies to this topic

[lamarr1986]

Pred works as you all know because it is anti inflammatory and immuno supressive. I am starting to think a combo of mepacrin and LDN would be perfect for us.... Even mepacrin at say 50mg every other day and then the LDN. I think this would have better results than pred but with pretty much no sides....

I have known for a long time now that nearly EVERY side effects from tane stems from inflammation. EVERYTHING if you research enough.

Mepacrin is amazing for a number of sides but for instance with the hairloss, you need to remove the T cell and B cell 'swarm' from the hair bulb. Mepacrin can reduce the damage that this does to the surrounding tissue but like i said before it can't alter blood levels or the way in which these cells target tissue/foreign objects.

LDN on the other hand has more of a potential to do this and like i said i think a combo would cure pretty much every side effect, ESPECIALLY if you get on them early.

The only trouble is this....the widespread inflammation can damage tissues, nerves, blood vessels, nureons in the brain, serotonin, dopamine receptors in the brain aswell. Pretty much any tissue can be damaged. Once you remove the inflammation the body will heal things to a certain extent and things such as rosacea will be easier to fix than other problems such as mental issues.

If to much damage has happened you may not get total reversile of problems... For instance people are trying LDN for sjorgens syndrome, they find that it does relieve them pretty quickly but the glands within the eyes which normally produce oil can be left damage so there eyes wouldn't ever be totally normal again.

I do have solutions for healing the tissues e.g. light therapy. BUT the inflammation must first be removed, then you can use something like LLLT (low level light therapy) to help restore tissue function.

This is essentially what i have been doing in one way or another for quite some time now...

I think the future looks promising for tane victims....

[soul78]

Pred works as you all know because it is anti inflammatory and immuno supressive. I am starting to think a combo of mepacrin and LDN would be perfect for us.... Even mepacrin at say 50mg every other day and then the LDN. I think this would have better results than pred but with pretty much no sides....

I have known for a long time now that nearly EVERY side effects from tane stems from inflammation. EVERYTHING if you research enough.

Mepacrin is amazing for a number of sides but for instance with the hairloss, you need to remove the T cell and B cell 'swarm' from the hair bulb. Mepacrin can reduce the damage that this does to the surrounding tissue but like i said before it can't alter blood levels or the way in which these cells target tissue/foreign objects.

LDN on the other hand has more of a potential to do this and like i said i think a combo would cure pretty much every side effect, ESPECIALLY if you get on them early.

The only trouble is this....the widespread inflammation can damage tissues, nerves, blood vessels, nureons in the brain, serotonin, dopamine receptors in the brain aswell. Pretty much any tissue can be damaged. Once you remove the inflammation the body will heal things to a certain extent and things such as rosacea will be easier to fix than other problems such as mental issues.

If to much damage has happened you may not get total reversile of problems... For instance people are trying LDN for sjorgens syndrome, they find that it does relieve them pretty quickly but the glands within the eyes which normally produce oil can be left damage so there eyes wouldn't ever be totally normal again.

I do have solutions for healing the tissues e.g. light therapy. BUT the inflammation must first be removed, then you can use something like LLLT (low level light therapy) to help restore tissue function.

This is essentially what i have been doing in one way or another for quite some time now...

I think the future looks promising for tane victims....

Another good link with lots of info on ldn, including ongoing clinical trials.

http://www.lowdosenaltrexone.org/

My only concern is trying to convinve my Dr. to try this...

[halfpipe101]

Lamar for you I would not think about going on ldn..

you gotta count your blessings dude and be happy with how good you are now because you never know..

edit: after reading all of the page of ldn..really low dose..pretty interesting

so lamar this could cure redness/flushing just as good as mepacrine if not better?

would you say its a better alternative to get?

Im from canada too soul and I doubt this drug will be in the book (the drug big blue book you see at your doctors office) so that will make it way harder..

[soul78]

Lamar for you I would not think about going on ldn..

you gotta count your blessings dude and be happy with how good you are now because you never know..

edit: after reading all of the page of ldn..really low dose..pretty interesting

so lamar this could cure redness/flushing just as good as mepacrine if not better?

would you say its a better alternative to get?

Im from canada too soul and I doubt this drug will be in the book (the drug big blue book you see at your doctors office) so that will make it way harder..

It would be the same as Mepacrine, either way they would both have to be compounded by a pharmacy. There are pharmacies in Toronto that are reliable compounding Pharmacies. I am sure you know as you probably got your Mepacrine from one.

Naltrexone is widely available in Canada and the US and every Doctor will be aware of it as it is indicated for alcohol dependence and narcotic addiction. Some Doctors may not be aware of its off label use in low doses that we have discussed here but there is lots of literature (some of it I posted here) that can be referenced for them.

The only reason we would need a compounding pharmacy is because the doses are so low for its immunomodulator capabilities (1.5-4mg) and the standard prepared dose for Naltrexone is 50mg.

Doctors actually do this all the time for people who are hypersensitive to medications and need to start or stay at lower doses then what is commercially available. They can create lower doses for pretty much any medication as per a Doctors request.

[Seattle JT]

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.

Thanks for the advice. From what I can tell the most important things with vitamin d are calcium and magnesium. I get enough calcium. I think that I probably do not get enough magnesium everyday so I am looking to get it as a supplement. Do you recommend a certain brand? I went to go grab it yesterday, but I was surprised by how many different brands of magnesium there were and how there were slight differences between the magnesium supplements (for example: citrate, oxide).

[Seattle JT]

Hey guys,

In my opinion the ldn would not be hard to get from doctors. We are talking about a maximum dose of 4.5 mg per day and no dangerous sides. It would be much easier to convince them of the value of the ldn than anti malarials. But first we have to see if it will actually work. If we were talking about HIGH dose naltrexone that would be a different story lol.

[soul78]

Hey guys,

In my opinion the ldn would not be hard to get from doctors. We are talking about a maximum dose of 4.5 mg per day and no dangerous sides. It would be much easier to convince them of the value of the ldn than anti malarials. But first we have to see if it will actually work. If we were talking about HIGH dose naltrexone that would be a different story lol.

Good point. I will likely bring it up at my next appointment and bring in some literature and sites. I will just express my interest in it as a possibility and leave the info with him for a month to review. After reviewing the info, I can't imagine it would be a problem at such a small dose (as you pointed out). The sides are very minimal, you're right.

[lamarr1986]

Lamar for you I would not think about going on ldn..

you gotta count your blessings dude and be happy with how good you are now because you never know..

edit: after reading all of the page of ldn..really low dose..pretty interesting

so lamar this could cure redness/flushing just as good as mepacrine if not better?

would you say its a better alternative to get?

Im from canada too soul and I doubt this drug will be in the book (the drug big blue book you see at your doctors office) so that will make it way harder..

Halfpipe, don't underestimate my ocular rosacea(blepharitis) /diffuse alopecia areata. I still have to deal with those, i use about 4 different things for my eyes and they still bother me quite alot. I also use about three things to help control the hairloss. Some people have only those two things and find it very hard to deal with, even just my ocular symptoms you can visit the dry eye forum and see just how much it can affect a persons life. Severe dry eyes like i have is not nice ATALL and is almost on par with severe rosacea/flushing.
I still get really bad folliculitis if i don't use my topicals for that aswell, so i still have a few things that by themselves can be extremely bothersome. The eyes can be terrible though i have tried everything for them... Protopic is the only thing that relieves all of the inflammation and dryness, but it also gives me a very painfull burning sensation which didn't pass even after two months of use. So i had to stop and go back to gels, topical rosex gel and curcumin/light therapy.

I use about 5 different topicals atm EVERY day to control things. The folliculitis i use two seperate things once in the morning once at night (topical niacinamide and topical ibuprofen) for the hairloss i use two seperate things (topical steroids and topical essential oils) AND use lasers. For my eyes i also have to use two topical (rosex and genteal severe dry eye gel). So you can see why i am interested in the LDN, it's probably better for my body than all the topicals. Don't worry dude i know what i'm doing...

Trust me those three remaining side effects are severe, i lose 70% of my hair density without all of those things......

Lamar for you I would not think about going on ldn..

you gotta count your blessings dude and be happy with how good you are now because you never know..

edit: after reading all of the page of ldn..really low dose..pretty interesting

so lamar this could cure redness/flushing just as good as mepacrine if not better?

would you say its a better alternative to get?

Im from canada too soul and I doubt this drug will be in the book (the drug big blue book you see at your doctors office) so that will make it way harder..

It would be the same as Mepacrine, either way they would both have to be compounded by a pharmacy. There are pharmacies in Toronto that are reliable compounding Pharmacies. I am sure you know as you probably got your Mepacrine from one.

Naltrexone is widely available in Canada and the US and every Doctor will be aware of it as it is indicated for alcohol dependence and narcotic addiction. Some Doctors may not be aware of its off label use in low doses that we have discussed here but there is lots of literature (some of it I posted here) that can be referenced for them.

The only reason we would need a compounding pharmacy is because the doses are so low for its immunomodulator capabilities (1.5-4mg) and the standard prepared dose for Naltrexone is 50mg.

Doctors actually do this all the time for people who are hypersensitive to medications and need to start or stay at lower doses then what is commercially available. They can create lower doses for pretty much any medication as per a Doctors request.

I definently wouldn't say it will be the same as mepacrin. I think it has the potential to be, but mepacrin has already been used with success in post tane victims so LDN is yet to prove itself. Like i said it does have the potential to be as good (if not better) though. They work via different means so we can't judge yet...

I also agree it would probably as easy to convince a Dr to give you LDN as it would mepacrin, if not easier. It is most certainly worth a shot.

[oli girl]

Lamarr - I have severe dry eyes and they don't seem to be getting any better. Looking at all my tests the only one that hasn't been done is sjorgren's...Which I have severe dry mouth also.

Lamarr- What is this gel u speak about? Is it in a rx? and what is the protopic you speak about?

I also have purple color on my eyelids, thought my eye situation was getting better, but last two days have woke up with major crusting where my eyes were closed shut.

Thought the flushing and redness was getting better, flaring up again.

I leary with problems w/ meds since accutane, but willing to try a topical 1st if it would help....

[halfpipe101]

lamar i thought you dont use any acne creams? (you said u use creams for folli)

I might try to get this low dose seeing as it looks promising

I would not even bother though if i didnt get the yellowing side effect but its going down

anyways guys the progress from the first 15 pages of this thread to now are amazing

good job everyone for all your help

[lamarr1986]

Oli girl,

Yeah both prescription, both used off label for certain inflammatory eye disorders.

Halfpipe i said i use them for folliculitis? that's what i said above aswell?, i use what i said i use above and have done for nearly two years (topicals for the folliculitis have changed slightly though)...

[soul78]

Lamarr,

what essentail oils are you using on your scalp? I started using pure emu oil about a month ago (a few squirts after my shower on a hydrated scalp) along with nizoral shampoo 2% (twice per week) and have noticed a difference in the quality of both my scalp and hair (less inflammation and not nearly as dry). Wondering what oils were working for you and how/when you apply them etc.

Halfpipe,

You mentioned the yellowing is going away on your skin, did you stop the mepracrine?

[lamarr1986]

40% emu, 20% jojoba, 20% grapseed 10% lavender....

Picked all because of their anti inflammatory properties and through trial and error. I originally copied a study used with essential oils on alopecia areata but i found it actually increased shedding... so i dropped one ingriedient at a time and included emu which has always helped my tane induced hairloss.

[kleg]

Yo

Saddens me to see the same guys having problems still. Truely hope things have a got a bit better at least?

The flushing has reduced I'd say about 80%. I do have to drink A LOT of water though to keep it down. I get it only on the tube now (London subway) where it's ridiculously hot but I of course go a lot more red than the average!


I've got a few spots back but that's a fair price to pay for severe reduction in the flushing. They're on my forehead which I believe is more related to my bowel problems anyhow (too much information?! Most probably).

Alcohol is also an inducer for the old flushes but with my IBS I find it hard to drink a lot anyhow.

Oh also with regards to heat, I've been going to the Middle East a lot (I'm half Israeli) and no flushes! Even in the ridiculous midday heat.

So there IS hope. For anyone reading this who's on tane and is starting to get flushes PLEASE STOP taking and go see your derm. I put my foot down and told him I was coming off it even though he disagreed.

Good luck to yall
safe x

[soul78]

Hey Lamarr,

what doses of Clonidine and Propranolol were you on when you started the Mepacrine? Also, how long after being on the Mepacrine did you stop these? Did you stop them gradually? or at the same time?

I know you still use them for acute situations when you are going out clubbing etc. but I am curious as to the details on your doses and scheduling for stopping them when being on Mepacrine.

I am currently on Propranolol, about 20-30mg daily along with the Mirtazinpine.

Feel free to PM me or drop me a line here.

Cheers,

[123000123]

does anyone have any thoughts on the potential cause being a thyroid issue?

i recently visited a natural therapist to look for alternatives to acne management after stopping accutane due to intense facial flushing and red face and also for some other issues i wanted sorted out. one of the things she commented on was my enlarged thyroid on the right side of my neck. after running a bunch of tests we found my THS levels in my thyroid to be low.. not exactly out of range but definitely low. this suggests hyperthyroidism.

after doing a bit of my own research on hyperthyroidism and looking at the symptons i read one of the main ones being INTOLERANCE TO HEAT and facial flushing as a result. other symptons include anxiety, panic attacks, hair thinning, fatigue, weight loss even if you eat heaps, muscle weakness, etc. all of which i've had to some extent, some moreso than others. some of these i have had before taking accutane but most if not all either STARTED or DRASTICALLY WORSENED during and/or after the course. also i have read of links between accutane and hyperthyroidism. so basically i am convinced i have hyperthyroidism or some type of thyroid issue.

will be conducting further tests to see if this is the case.

any thoughts?

it has only been about 6 weeks since i stopped taking accutane and i only took 40mg for about 7 weeks, which is a relatively low cumulative dose so i know i should be patient and hopefully the flushing will subside but it is really getting me down so i am eager to find an answer.

also to the people who have had the flushing for a long time now could it be anxiety related and have you noticed any improvements with using anti-anxiety medications/decreased general anxiety?

PLEASE REPLY, cheers

[oli girl]

123000123- I acutally was found to have grave's (autoimmune of hyperthyroid)...(another nice gift from accutane) However, even w/my thyroid at normal levels at times I still flush and some things that get better for people w/grave's after treatment are NOT better for me or nor did they disappear. Note: I had no anxiety issues.

I acutally have studied and read many books on hyperthyroid and also part of a group of people w/thyroid issues. It seems that they do suffer w/the problems u mention, however mine were way more stronger and intense then someone who didn't ingest accutane and had a thyroid issue.

I will admit somethings got better once my thyroid was on track, but I still have many issues....

Accutane in some mimmics hyperthyroid symptoms, Acutally if u read some of the side effects from accutane they are the similar.....

All I can say that Accutane can do horrible things to some people......Read some of the pgs in this thread.

I hope ur flushing gets better....

By the way how low was your TSH? You should be fine since u took a very short course. If your thyroid levels come back normal then I would suggest not touching accutane again.

If u do come back w/a thyroid problem don't take accutane either, retinoids & Vit A are in w/the thyroid family which will just disrupt ur thyroid and ur acne will probably be b/c of the thyroid problem which is hormonal.

[Cman]

Does this long lasting flushing/red face occur to many people who have used accutane or is it a rare side effect?

[Seattle JT]

does anyone have any thoughts on the potential cause being a thyroid issue?

any thoughts?

it has only been about 6 weeks since i stopped taking accutane and i only took 40mg for about 7 weeks, which is a relatively low cumulative dose so i know i should be patient and hopefully the flushing will subside but it is really getting me down so i am eager to find an answer.

also to the people who have had the flushing for a long time now could it be anxiety related and have you noticed any improvements with using anti-anxiety medications/decreased general anxiety?

PLEASE REPLY, cheers

One of the first things a doctor will look for when searching for the cause of flushing is to check the thyroid. In the case of accutane induced flushing there really is not one set type of flushing that it gives. For example, some people find IPL really helps their flushing while others find this does nothing. Some people have seb derm, while others don't. It really can vary. If you are really interested I would suggest reading the whole thread (I know its long) but we have made a lot of progress since then.

I would be optimistic if I were you. 40mg for less than 2 months is not that much. Your body can undo some of the damage that accutane causes so obviously the less you take the greater the chance you have to recover. In my opinion you should try to get your thyroid sorted out and it see if that helps. For now I wouldn't worry about the acne because, in attempting to treat it, you could easily make the flushing worse. It really is a personal decision, but I think the majority of people would prefer acne to full blown flushing (not to downplay acne). If sorting out your thyroid deficiency does not cure your flushing I wouldn't try anything else for at least 6 months. You have to give your body a chance to recover naturally or you could just end up making it worse since there is no easy fix for flushing. Honestly that is the best advice I can give you.

In regards to the flushing being due to anxiety I wish it was that simple. I think all of us have tried antidepressants to some degree and at its best it takes the edge off, but it doesn't cure the flushing. In my opinion the idea that it is all anxiety related is a common mistake that doctors make. It really is quite silly. I never had any anxiety before I started flushing lol. The flushing is what causes my anxiety. It is safe to say that my enhanced level of anxiety makes the flushing worse, but it isn't the reason why I flush in general. I believe the problem is inflammation.

I hope that helps

[Seattle JT]

Does this long lasting flushing/red face occur to many people who have used accutane or is it a rare side effect?

It is complicated. You will not find accurate information regarding the number of people who get significant side effects from accutane. As such I can't quote figures to you, but I can tell you how accutane sides differ from most drugs. Accutane alters your system so while most drug side effects will go away once the drug is discontinued, this is not the case with accutane. I have had the flushing for over two years so if it is not permanent, it is at least significantly long-term. Flushing really isn't the worst side effect that accutane can cause. There is a whole slew of side effects that can be caused by accutane ranging from IBS, sexual dysfunction, severe eye problems, brain damage, joint pain/lack of tissue healing ability. Those are just a few. Another thing that makes accutane dangerous is that you can get side effects post accutane that you never had while on accutane. I'm sorry that I cannot give you more of a definitive answer, but the truth is that the research isn't there. Accutane is not a well understood drug at all which is what makes it so dangerous.