Good stuff man, i hope you have continued success.

Thanks bro idk if we have the same thing, probably not and even if this does the trick thanks for all your help man.

Halfpipe,

How is it going with the mepacrine? Have you gotten any sides from it?

just some yellowing of the skin

yellowing of the skin usually means something's wrong with the liver

no its just a common side effect from mepacrine..the pills are all yellow too

its not jaundice

no its just a common side effect from mepacrine..the pills are all yellow too

 

its not jaundice

Yeah it is most likely due to the dye mechanism of mepacrine. I am glad to hear that you are not experiencing any real sides. How has your back been?

Lamarr,

Hey man I was hoping you could answer some questions if you don't mind. I know you have said that you are on propranolol and I was just wondering why exactly you were taking it? Also, I was wondering what your mepacrine dose is? I think I am at the point now where I should give it a shot. Do you have any advice on convincing my doctor if she is hesitant to give it to me? For example articles or studies etc? Sorry to bombard you with questions, but I would really appreciate it.

Halfpipe,

What dose of mepacrine are you on?

Lamarr,

 

Hey man I was hoping you could answer some questions if you don't mind. I know you have said that you are on propranolol and I was just wondering why exactly you were taking it? Also, I was wondering what your mepacrine dose is? I think I am at the point now where I should give it a shot. Do you have any advice on convincing my doctor if she is hesitant to give it to me? For example articles or studies etc? Sorry to bombard you with questions, but I would really appreciate it.

 

Halfpipe,

 

What dose of mepacrine are you on?

I am no longer on any propranolol, clonidine etc. I was on it because it helped the flushing quite a bit. Also helps anxiety and social blushing. I still blush a little and i sweat alot when in a hot club for isntance, so on a night out i take them both. Prevents blushing and sweating....

I started on 100mg mepacrin every day, now i take 100mg every other day. So 50mg per day.

There is pretty much no litrature on mepacrin for rosacea and i get people on the rosacea forum asking me for info aswell. But you just have to google the use of it for lupus etc and show your doctor that the drug is pretty safe.

All i take now in terms of prescriptions is mepacrin 50mg per day and mirtazapine 22.5mg per day.

I also take curcumin, milk thistle and red wine extract.

Make sure you get liver function tests every month for the first few months of taking mepa, then after that get one every 6 months ish.

Hope this helps.

Propranol is a beta blocker, it lowers blood pressure, helps with hypertension, performance anxiety and migraines. It stops that flight or fight mechanism in our brain that causes fear and anxiety.

Years ago, I had a psychiatrist who gave it to me for the performance anxiety I got before going on stage (I used to dance) as well as anxiety based migraines and tension headaches I would get. I think that for rosacea it would keep any flushing that is emotionally based (social anxiety, stress etc.) from happening. I think it is a helpful drug as it calming but not sedating. I wish I could still take it as I get severe tension headaches, unfortunately, my current doctor agrees that it would help the headaches but he refuses to prescribe it since my blood pressure is too low.

Hope that helps.

from experience it helps the flushing in more ways than just from anxiety, it helps with flushing from heat, exercise, pretty much everything.

I agree though it is calming but not sedating which is great. Mrsz what dose did you used to take? i find 20 mg twice per day helps alot and you avoid lowering your blood pressure much atall...

I am no longer on any propranolol, clonidine etc. I was on it because it helped the flushing quite a bit. Also helps anxiety and social blushing. I still blush a little and i sweat alot when in a hot club for isntance, so on a night out i take them both. Prevents blushing and sweating....

 

I started on 100mg mepacrin every day, now i take 100mg every other day. So 50mg per day.

 

There is pretty much no litrature on mepacrin for rosacea and i get people on the rosacea forum asking me for info aswell. But you just have to google the use of it for lupus etc and show your doctor that the drug is pretty safe.

 

All i take now in terms of prescriptions is mepacrin 50mg per day and mirtazapine 22.5mg per day.

 

I also take curcumin, milk thistle and red wine extract.

 

Make sure you get liver function tests every month for the first few months of taking mepa, then after that get one every 6 months ish.

 

Hope this helps.

Thanks man. Yeah I figured that you were on it to help with the flushing but I thought you were still on it even with the mepacrine so I thought you might have been using it for something else. I am curious though why you take 100mg every other day instead of 50mg every day? Good thinking with the milk thistle for your liver. How are you liking the red wine extract? It seems to have really blown up lately.

Propranol is a beta blocker, it lowers blood pressure, helps with hypertension, performance anxiety and migraines. It stops that flight or fight mechanism in our brain that causes fear and anxiety.

 

Years ago, I had a psychiatrist who gave it to me for the performance anxiety I got before going on stage (I used to dance) as well as anxiety based migraines and tension headaches I would get. I think that for rosacea it would keep any flushing that is emotionally based (social anxiety, stress etc.) from happening. I think it is a helpful drug as it calming but not sedating. I wish I could still take it as I get severe tension headaches, unfortunately, my current doctor agrees that it would help the headaches but he refuses to prescribe it since my blood pressure is too low.

 

Hope that helps.

Thanks for sharing your experience MrsZ. I really appreciate it. I have considered giving it a go, but I just don't think it would help the flushing enough for me to be content. Having said that, propranolol is still on my list of things that could potentially help me with my various ailments lol.

Lamarr, glad to see you are doing well. I am also interested in the Mepacrine. I am hoping you can answer some questions I have regarding the medication when you have a few minutess;

2. You have stopped Clonidine and Propranolol, has the Mepacrine eliminated your flushing completely on its own?

3. How long after starting Mepacrine 100mg did you drop your dose to 50mg? I have read that in Lupus once remission is reached at around 4-6 months of 100mg daily the dose can be gradually dropped every few months to maintenance doses as low as 100mg once or twice per week. Are you/Dr. Chu following a similar protocol? Do you know if Dr. Chu has followed this protocol in the past with Rosacea patients and had success?

4. Did you have any relapses of flushing when you lowered your dose?

5. Would you say that Mepacrine has put your flushing/Rosacea into full remession ie. Symptom free?

6. Have you had any side effects from the Mepacrine? Skin yellowing, stomach cramps, etc.? Do you or has Dr. Chu ever mentioned any potential permanent or serious side effects?

7. Are you able to expose yourself to past triggers and still not flush ie. heavy exercise, sex, direct sun? Social situations?

8. From what iI have read I believe Dr. Chu has prescribed this medication for 4 others for Accutane induced flushing, has he made any comments in terms of how well it has worked for them and if any of them have been able to come off it and still hold their results of being flush-free?

9. I noticed that you have also increased your Remeron dose to 22.5mg. Do you take this dose at once or divided? Do you find it more effective then 15mg daily?

I'm really glad to hear that you have been able to get off of Propranolol and Clonidine. This leads me to believe that the Mepacrine is that effective. My last question is where do you go from here? What are you plans for the future in terms of medications? To try and evenutally get off the Mepacrine?

Sorry for all the questions, but this is something I am seriously considering as the Remeron has helped but I still struggle with swelling and flushing and would hope that perhaps Mepacrine can push me over the hump. The fact that I have learned that it can also help with joint stifness is a huge bonus as I have ongoing issues with my joints since Accutane. As you can probably relate, I am very apprehensive when it comes to taking medications due to what has happened to some of us with Accutane. The last thing I would want is further risk. However, I do understand that this is the safest of the Anti-Milarials from a Lupus profile anyways.

EDIT - Just read through the thread since I posted last so I have taken out the questions that were answered from some of your past posts.

Thanks again.

Seattle JT,

I too take Propranolol occasionaly when I have heavy social situations and it does work well for that. I don't take it regularly though as one of its most common side effects is impotence and I find it has some effect on me in that way on the days I take it.

Regarding the Mepacrine, it has a ridiculous half life of 5 to 14 days so taking it every other day would be the same as taking it everyday at a lower dose. I have actually read that Lupus patients who respond to it can take it in as little doese as 100mg once per week and stay relapse free.

Lamarr,

I was going to add that the part that makes me the most nervous about this medication Mepacrine is that it collects in the tissues of the body and that levels in the tissues are considerably higher then those in the blood. Highest concentrations being in the liver, spleen, lungs and adrenal glands. Concentrations in the liver may be 20,000 times the blood levels. I would assume this is why you (Lamarr) are taking Milk Thistle as a supplement. I would also be interested to hear your or Dr. Chu's (if he has any) thoughts on this aspect. How often do you have your liver enzymes tested?

EDIT - I just read through a lot of this thread that I had missed since I posted last. I wanted to add that I also have the following symptoms following Accutane along with the flushing; hands turning red, sore joints, sore/stiff upper back (almost feels like my bones are dehydrated if that makes any sense), mouth ulcers, dryness of skin on the under part of the arms as well as the knee caps, gritty sandpaper eye sensations along with inflammation in the eye and eye lids. Most of these things are transient, meaning they come and go, but they are all persistent unfortuneatly.

I am also wondering if Accutane has induced a Lupus like condition (connective tissue disease) where our immune system is in overdrive and attacking areas of our bodies such as the skin, eyes, joints etc. Did you or Dr. Chu ever persue this concept any further? Isn't there an actual test for Lupus? EIther way, you are on the medication used to treat it and it has put your condition, be it Accutane induced Rosacea or Lupus, into remission, so that is solid in itself.

Cheers

Lamarr, glad to see you are doing well. I am also interested in the Mepacrine. I am hoping you can answer some questions I have regarding the medication when you have a few minutess;

 

 

2. You have stopped Clonidine and Propranolol, has the Mepacrine eliminated your flushing completely on its own?

 

3. How long after starting Mepacrine 100mg did you drop your dose to 50mg? I have read that in Lupus once remission is reached at around 4-6 months of 100mg daily the dose can be gradually dropped every few months to maintenance doses as low as 100mg once or twice per week. Are you/Dr. Chu following a similar protocol? Do you know if Dr. Chu has followed this protocol in the past with Rosacea patients and had success?

 

4. Did you have any relapses of flushing when you lowered your dose?

 

5. Would you say that Mepacrine has put your flushing/Rosacea into full remession ie. Symptom free?

 

6. Have you had any side effects from the Mepacrine? Skin yellowing, stomach cramps, etc.? Do you or has Dr. Chu ever mentioned any potential permanent or serious side effects?

 

7. Are you able to expose yourself to past triggers and still not flush ie. heavy exercise, sex, direct sun? Social situations?

 

8. From what iI have read I believe Dr. Chu has prescribed this medication for 4 others for Accutane induced flushing, has he made any comments in terms of how well it has worked for them and if any of them have been able to come off it and still hold their results of being flush-free?

 

9. I noticed that you have also increased your Remeron dose to 22.5mg. Do you take this dose at once or divided? Do you find it more effective then 15mg daily?

 

I'm really glad to hear that you have been able to get off of Propranolol and Clonidine. This leads me to believe that the Mepacrine is that effective. My last question is where do you go from here? What are you plans for the future in terms of medications? To try and evenutally get off the Mepacrine?

 

Sorry for all the questions, but this is something I am seriously considering as the Remeron has helped but I still struggle with swelling and flushing and would hope that perhaps Mepacrine can push me over the hump. The fact that I have learned that it can also help with joint stifness is a huge bonus as I have ongoing issues with my joints since Accutane. As you can probably relate, I am very apprehensive when it comes to taking medications due to what has happened to some of us with Accutane. The last thing I would want is further risk. However, I do understand that this is the safest of the Anti-Milarials from a Lupus profile anyways.

 

EDIT - Just read through the thread since I posted last so I have taken out the questions that were answered from some of your past posts.

 

Thanks again.

2. I was able to drop clonodine and propranolol every day use after about 6 months. So yeah once the vascular damage was given a chance to heal i didn't need those.

3. About 8 months. I have made up my own protocol. I asked for the drug i wasn't given it, but i did know dr chu already used it. He still thinks im on 100mg per day. He plans on keeping me on this dose for a while then we will taper as we decide. I have been fine on 50mg per day for months now though. No flare of flushing or anything.

4. No.

5. Yeah i don't flush atall now, i only blush mildy in embarising situations which is pretty normal for me.

6. It is common to get stomach pains when you start to feel hungry, after about 6 months i no longer even got that thoug. Slight yellowing on the skin but nothing major. I am a pretty big dude though so that could be part of the reason it was only slight.

7. yes same as pre accutane.

8. Nope haven't spoken to him about it. I thought i was the first he gave it to for tane induced flushing, i know of only one other tane induced flusher that chu has given this to? atleast on the internet anyhow. We haven't disscussed this though nope.

9. I take 22.5mg at night, i find it gives me better sleep quality than 15mg and 30mg actually gives me joint pain soooo...

Lamarr,

 

I was going to add that the part that makes me the most nervous about this medication Mepacrine is that it collects in the tissues of the body and that levels in the tissues are considerably higher then those in the blood. Highest concentrations being in the liver, spleen, lungs and adrenal glands. Concentrations in the liver may be 20,000 times the blood levels. I would assume this is why you (Lamarr) are taking Milk Thistle as a supplement. I would also be interested to hear your or Dr. Chu's (if he has any) thoughts on this aspect. How often do you have your liver enzymes tested?

 

EDIT - I just read through a lot of this thread that I had missed since I posted last. I wanted to add that I also have the following symptoms following Accutane along with the flushing; hands turning red, sore joints, sore/stiff upper back (almost feels like my bones are dehydrated if that makes any sense), mouth ulcers, dryness of skin on the under part of the arms as well as the knee caps, gritty sandpaper eye sensations along with inflammation in the eye and eye lids. Most of these things are transient, meaning they come and go, but they are all persistent unfortuneatly.

 

I am also wondering if Accutane has induced a Lupus like condition (connective tissue disease) where our immune system is in overdrive and attacking areas of our bodies such as the skin, eyes, joints etc. Did you or Dr. Chu ever persue this concept any further? Isn't there an actual test for Lupus? EIther way, you are on the medication used to treat it and it has put your condition, be it Accutane induced Rosacea or Lupus, into remission, so that is solid in itself.

 

Cheers

I have always said to people i believe accutane induces a lupus like condition, I have had all the tests for lupus and so have many others. They normally come back negative, but like i said i don't think it is lupus, just somethign that mimics it.

Mepacrin isn't THAt hard on the liver, i wouldn't worry to much if you having regular checks at first then once every 6 months after that. I take milk thistle as a preventative, 450mg once per day at night. My enzymes have been good other than once when i WASN'T taking the milk thistle AND had an infection, so either could of been the reason for raised enzymes. I continue to take the milk thistle just incased though.

Your lucky your symptoms come and go, that is a good sign. Mine simply continued to worsen or stay the same before mepacrin!!

I imagine myself being on mepacrin and mirtazapine for a very long time yet.

Lamarr,

With all the research I have done it seems the most prevalent side effect is the yellowing of the skin. But I really don't have any idea how this looks as the only examples I have found are for jaundice which isn't the same thing. Is the yellowing really noticeable for you? From what I understand about mepacrine it seems promising for my flushing at least and perhaps my joint/muscle issues, but I would hate to turn really yellow. I think that I am going to ask for it in a couple of weeks. Unfortunately though it isn't likely to help with my biggest problem which is the fact that I do not heal properly anymore. Even the smallest of injuries do not heal completely as my tissue healing abilities have seemed to be compromised (like sheefa).

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.

Lamar would you say milk thistle could possibly be the reason you dont really have skin yellowing

and what are the benefits of taking curcumin and red wine extract? i dont know much about them..

all i know is the possible side effect of hair loss from curcumin

Curcumin Helps my eyes (has some pretty potent anti inflammatory effects) is also said to support liver health aswell. Will be having another LFT (liver function test) when i get back from the states (i'm in marco island florida atm). The curcumin helps relieve some of the inflammation in my eyelids (i have learn't from experience NSAID's help my eyes quite alot (in particular diclofenac), but i wouldn't take these long term due to side effects, curcumin has been side effect free for me. Red wine helps hair growth and sharpens my vision, supports vascular strength aswell..

I can actually notice the red wine working on my vision (my long distance vision was going a bit since tane) but i'm back to 20:20 vision now. I can also notice new hair growth within 10 days of using red wine extract. (many post tane victims believe tane alters our telomere lengths, red wine has a number of components (namely resveratrol) which have a beneficial effect on telomeres) the polyphenols (spelling) are also known to aid hair growth in people.

About the yellowing, it is possible milk thistle may have helped but i don't know why it would do? It is just related to how much of the mepacrin is deposited in my skin. As i said im 6 ft 2/3 and have worked out since i was 16 (i'm 23 now) so i weigh a lean 205 ish pounds.

Alot of the things i take are to prevent any potential damage from other drugs or supplements. For instance i still use topical steroids for tane hairloss and to prevent skin changes i use red lasers.

I must sound crazy to some people but i have my life back to pretty much a full extent now... It still requires alot of effort but is most certainly worth it.

Lamarr,

Thanks a lot for all the info! I think I am also going to give it a try.

Can I ask at what point you noticed the yellowing? From the get go or did it take some time? Is your urine also a bright yellow? Have read that usually goes along with the skin tint.

Also, I have read in a paper that if you drop the dose to 50mg daily or less then the yellowing improves substantially and often resolves or goes away in a lot cases. Did you notice an improvement in the yellowing when you dropped your dose?

Also, do you know if the yellowing gets worse over time, the longer you take the medication, the more yellow you will be as it collects in your skin tissue? Or is it more along the lines of once it is there, it stays the shade no matter the length of corse?

JT, Halpipe Lamarr,

I came across an interesting study that said when B vitamins are taken with Quinacrine, they reduced the toxicity effects. The skin yellowing, I would gather is a result of mild drug toxicity.

Since the toxic effects of atabrine were less pronounced

in rats on diet B2 than in those on diet A2, and since these 2

diets differed only in their content of known B vitamins, it is

apparent that the beneficial effects of diet B2 were due to

its increased content of B vitamins.

http://jn.nutrition.org/cgi/reprint/35/2/269.pdf

I wonder if a B vitamin complex would help with the skin yellowing toxicity? Would need to find one without Niacin or at least with the Non Flush form of Niacin.

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.

Curcumin Helps my eyes (has some pretty potent anti inflammatory effects) is also said to support liver health aswell. Will be having another LFT (liver function test) when i get back from the states (i'm in marco island florida atm). The curcumin helps relieve some of the inflammation in my eyelids (i have learn't from experience NSAID's help my eyes quite alot (in particular diclofenac), but i wouldn't take these long term due to side effects, curcumin has been side effect free for me. Red wine helps hair growth and sharpens my vision, supports vascular strength aswell..

 

I can actually notice the red wine working on my vision (my long distance vision was going a bit since tane) but i'm back to 20:20 vision now. I can also notice new hair growth within 10 days of using red wine extract. (many post tane victims believe tane alters our telomere lengths, red wine has a number of components (namely resveratrol) which have a beneficial effect on telomeres) the polyphenols (spelling) are also known to aid hair growth in people.

 

About the yellowing, it is possible milk thistle may have helped but i don't know why it would do? It is just related to how much of the mepacrin is deposited in my skin. As i said im 6 ft 2/3 and have worked out since i was 16 (i'm 23 now) so i weigh a lean 205 ish pounds.

 

Alot of the things i take are to prevent any potential damage from other drugs or supplements. For instance i still use topical steroids for tane hairloss and to prevent skin changes i use red lasers.

 

I must sound crazy to some people but i have my life back to pretty much a full extent now... It still requires alot of effort but is most certainly worth it.

What dose of Milk Thistle do you take?

What do you mean by "...and to prevent skin changes I use red lasers."? Skin changes from the Mepacrine?

Seems like Milk Thistle can help guys...

One of milk thistle's many beneficial properties is its ability to regenerate damaged cells, including liver cells. The liver acts as a large filter, filtering out impurities from our blood before sending it back through our bodies. As it detoxifies the liver, it helps keep the blood free of toxins, including toxins that may affect the skin.

I think this is a good supplement to potentially help with the yellowing.