1150 replies to this topic

[oli girl]

Allright I don't have much time right at the moment, but Seattle,Lamarr- I got Plaquenil I didn't even have time to even mention Accutane. He took one look at me, and did some tests in the office, looked at some of my previous notes of how steroid only helped my joint and tendon issues....
Seattle-I will send you a pm maybe this will help for your doctor to give it to you.

Lamarr-I will try and read back to some of your posts, I may have some questions, so I may email you. I am a little nervous with the med senstivity I developed after ingesting the poison.

Halfpipe-I argee with Seattle, I had low vit D levels after Accutane, I had my levels checked and was very low, probably part of the retinoid related osteopenia I developed. I found my bone don't click as much, My mood improved and my memory....I guess some of my flushing was helped, not sure though to be honest since I had other problems to on accutane. Get your levels checked, even though it is hard to overdose on Vit D...My doctor said 70-90 was optimal.

I hope this works...

Edited by oli girl, 21 December 2009 - 11:40 PM.

[lamarr1986]

Hey Jen,

Just replied to your email.

One thing i want to remind everyone who is suffering from tane side effects is this... We aren't your typical patient in many many ways, we require a doctor and treatments which think slightly outside of the box.

For example i and many others on old accutane forums find sunbeds help things quite alot. Not only will you be upping your vitmin D levels, you are helping inflammation by effectively killing t cells.

I really recommend buying one and laying under it for 15 mins twice per week. I am looking at preventing my health getting any worse and i think things like this will help do this.

Doctors probably wouldn't recommend this and would warn against skin cancer. But lack of sunlight is just as harmfull as to much sunlight. simply cover your face and hands and then you don't have to worry about wrinkles and age spots.

It will help relieve some of the inflammation and prevent low vitamin D levels thus maintaining bone density etc.

Lamar what does curcumin do? you just take that now,no mepacrine? does curcumin help with flushing/redness?


I am thinking about starting to take vitamin D3,thoughts?

I still take mepacrin, about 300mg per week. I take curcumin twice per day, helps with my eye inflammation. It may help the flushing but i can't comment on that anymore. so long as you don't get a flushing response to it, it should help.

Lamar im thinking about asking my doctor for plaquenil,as I believe anti-millarials are the solution because they heal the skin inside but wondering how should I ask him for it? and since your moms on it can you please reply/pm me with what i should say and how its safer then he thinks/and what not.

They don't heal the skin directly, they just relieve the inflammation in the right way, without and serious side effects.

Just explain the relief mepacrin gave you and say so long as your having regular eye checks you will be fine!

[lamarr1986]

Yeah but you're gonna most likely have to take it for longer than Accutane

Best option would be not taking anything actually

Please don't try and be a smart arse. I'm sure if any of us had the option we would of probably never taken any drugs. Hopefully you won't pick up any side effects on your accutane course and find out what us guys are going through.

I am also getting orthognathic jaw surgery this summer and I am really worried

its still my decision on if i wanna get it or not but my orthodontist is recommending it

could this make my flushing/rosacea worse?

there is obvious swelling after but its supposed to go away/down

What kind of surgery, my dad is a dentist so with mine and his knowledge i would probably be able to give you a good answer.

[halfpipe101]

its orthognathic jaw surgery

type it in a youtube and theres some crazy pictures/storys of what people went through and asking your dad would be great

so if plaquenil not heal the skin directly..and mepacrine does that would mean there totally different and I would not get the same benefits..?

[Seattle JT]

Allright I don't have much time right at the moment, but Seattle,Lamarr- I got Plaquenil I didn't even have time to even mention Accutane. He took one look at me, and did some tests in the office, looked at some of my previous notes of how steroid only helped my joint and tendon issues....
Seattle-I will send you a pm maybe this will help for your doctor to give it to you.

Lamarr-I will try and read back to some of your posts, I may have some questions, so I may email you. I am a little nervous with the med senstivity I developed after ingesting the poison.

Halfpipe-I argee with Seattle, I had low vit D levels after Accutane, I had my levels checked and was very low, probably part of the retinoid related osteopenia I developed. I found my bone don't click as much, My mood improved and my memory....I guess some of my flushing was helped, not sure though to be honest since I had other problems to on accutane. Get your levels checked, even though it is hard to overdose on Vit D...My doctor said 70-90 was optimal.

I hope this works...

That is exciting news! I look forward to your PM as I want to hear about all the details haha...

[Seattle JT]

Hey seattle thanks for the quick reply

there is actually a person on the rocasea group forum whos flushing has been greatly helped from vitamin D and actually cured I believe and helped so much for redness and other symptoms

how are your results if you have been taking it?

and there are threads on here from people who says it keeps there skin Clear!

Initially my levels were something like 19 and now they are in the 50s, but I haven't noticed any difference with anything. It hasn't done anything for the flushing and although my acne comes and goes I don't think the D has done anything for that either. It could still help as its only been a couple of months where I have been increasing my levels. Even if it doesn't do anything it is still important to keep your level high because Vitamin D is a valuable vitamin. Plus its dirt cheap so its nice haha...

Ohh and in regards to your question about plaquenil and mepacrine not working the same I think you misread what Lamarr posted. As he said they don't heal the skin directly, but enable healing by removing the inflammation that is preventing the healing process so they should work about the same (in theory).

Edited by Seattle JT, 22 December 2009 - 06:27 PM.

[lamarr1986]

Hey seattle thanks for the quick reply

there is actually a person on the rocasea group forum whos flushing has been greatly helped from vitamin D and actually cured I believe and helped so much for redness and other symptoms

how are your results if you have been taking it?

and there are threads on here from people who says it keeps there skin Clear!

Initially my levels were something like 19 and now they are in the 50s, but I haven't noticed any difference with anything. It hasn't done anything for the flushing and although my acne comes and goes I don't think the D has done anything for that either. It could still help as its only been a couple of months where I have been increasing my levels. Even if it doesn't do anything it is still important to keep your level high because Vitamin D is a valuable vitamin. Plus its dirt cheap so its nice haha...

Ohh and in regards to your question about plaquenil and mepacrine not working the same I think you misread what Lamarr posted. As he said they don't heal the skin directly, but enable healing by removing the inflammation that is preventing the healing process so they should work about the same (in theory).

Spot on.

[goofyguy]

It seems like i feel hot in the face a lot and i get all red in the face too. I guess the Finacea they gave me seems to be working on the feeling hot. Does anyone else have this and know. Even though under certain lights i seem to still be really red in the face

[Shantelle]

Hi all

I've has experience with both Isotretinoin (Accutane- but called 'Isotane' here in NZ), and lately-Minocycline.

Had been on Isotane for 3.5 years; in the first few months I had no redness or flushing but about month 4 I started getting terrible bouts (cheeks and nose) which was very embarrassing and usually in social situations e.g. at work (especially in rooms with alot of people in it, and no air conditioning). Eventually, and after discussing with my Derm, I cut down the dose from 3x 10mg a day to 1x a day and that stopped the flushing significantly. As time went on though, I found i had to cut down even further as i progressed with the treatment. From yrs 2- 3.5 i was only on 1x 10mg capsule a week to keep the acne away- this worked really well for me.

Now i've re-started Isotane again, as the Minocycline i was put on (after i had stopped Isotane) caused me to break out terrribly with massive inflammation issues (ironic as it's supposed to have the oppositte effect), so i'll never take that again... plus it caused me to have headaches, feel extremely tired, and experience random severe flushing just on the nose (which was strange).

With Isotane/Accutane and flushing issues I can recommend:
* Talk to your Derm... if the Isotretinoin (Accutane or Isotane- same thing) has gotten rid of most of your acne you can possibly try reducing your dosage and see if this helps re: flushing and redness (worked for me! and no acne flare ups occurred by doing this from month 4 of treatment)
* Avoid alcohol, and warm rooms without air-conditioning- this caused me to have severe flushing and redness while on Isotane.
* Avoid strenuous exercise (unless your in the water) to avoid severe flushing and redness
* Listen to your body- Isotretinoin is powerful, and some people like me cannot handle too much of it and require lower doses to endure a more satisfying and less embarrassing life. At one stage flushing was a constant daily worry and I prayed i'd get through the day without an embarrassing episode- if you are experiencing this sort of thing, I truely advice talking to your Derm about possibly lowering your daily dosage.

Shantelle

[A new start :)]

Hi all

I've has experience with both Isotretinoin (Accutane- but called 'Isotane' here in NZ), and lately-Minocycline.

Had been on Isotane for 3.5 years; in the first few months I had no redness or flushing but about month 4 I started getting terrible bouts (cheeks and nose) which was very embarrassing and usually in social situations e.g. at work (especially in rooms with alot of people in it, and no air conditioning). Eventually, and after discussing with my Derm, I cut down the dose from 3x 10mg a day to 1x a day and that stopped the flushing significantly. As time went on though, I found i had to cut down even further as i progressed with the treatment. From yrs 2- 3.5 i was only on 1x 10mg capsule a week to keep the acne away- this worked really well for me.

Now i've re-started Isotane again, as the Minocycline i was put on (after i had stopped Isotane) caused me to break out terrribly with massive inflammation issues (ironic as it's supposed to have the oppositte effect), so i'll never take that again... plus it caused me to have headaches, feel extremely tired, and experience random severe flushing just on the nose (which was strange).

With Isotane/Accutane and flushing issues I can recommend:
* Talk to your Derm... if the Isotretinoin (Accutane or Isotane- same thing) has gotten rid of most of your acne you can possibly try reducing your dosage and see if this helps re: flushing and redness (worked for me! and no acne flare ups occurred by doing this from month 4 of treatment)
* Avoid alcohol, and warm rooms without air-conditioning- this caused me to have severe flushing and redness while on Isotane.
* Avoid strenuous exercise (unless your in the water) to avoid severe flushing and redness
* Listen to your body- Isotretinoin is powerful, and some people like me cannot handle too much of it and require lower doses to endure a more satisfying and less embarrassing life. At one stage flushing was a constant daily worry and I prayed i'd get through the day without an embarrassing episode- if you are experiencing this sort of thing, I truely advice talking to your Derm about possibly lowering your daily dosage.

Shantelle

Did it fade for you?

[oli girl]

Allright Guys, I thought I would update since it has been a little over a month on the plaquenil.

My flushing is pretty much gone. It took for me about 2wks. I recently in the last week have woken up and gone through the whole day with no redness on my face. It still gets a little burning in the cheeks and nose, but I assume that is from the broken capillares.(sp)

As for my severe joint and muscle and bone problems, I still have some pain, but I was able to clean my house with out my tendons swelling and fingers closing up, I acutally have had energy and my pain has gone down enough that I was able to go on the treadmill and do extremely light weight lifiting and i didn't feel 80 the next morining or stiff....
I acutally noticed my hair isn't falling out in clumps, it still is thin and dry but it isn't falling out as much...
Seattle how are things going????? Have you had your eye appt?
Lamarr-Thanks for your help

Edited by oli girl, 28 January 2010 - 08:47 AM.

[Seattle JT]

Allright Guys, I thought I would update since it has been a little over a month on the plaquenil.

My flushing is pretty much gone. It took for me about 2wks. I recently in the last week have woken up and gone through the whole day with no redness on my face. It still gets a little burning in the cheeks and nose, but I assume that is from the broken capillares.(sp)

As for my severe joint and muscle and bone problems, I still have some pain, but I was able to clean my house with out my tendons swelling and fingers closing up, I acutally have had energy and my pain has gone down enough that I was able to go on the treadmill and do extremely light weight lifiting and i didn't feel 80 the next morining or stiff....
I acutally noticed my hair isn't falling out in clumps, it still is thin and dry but it isn't falling out as much...
Seattle how are things going????? Have you had your eye appt?
Lamarr-Thanks for your help

I'm glad to hear that its been working for you! I have had all the preliminary blood tests done and have had all the eye tests as well. My appointment is 2 weeks from today so hopefully I will get the plaquenil then. I would be lying if I said the eye appt hadn't made me nervous, but at this point this is the best option so I'm going to take it. What dose are you taking now?

[oli girl]

I am still on the 200mg, I think I may try and bump it up to the dose he orginally wanted me on 300mg, but I got to admit since Accutane I am scared to take anything pharma, besides certian supplements.
Though I must admit with the joint damage I have hopefully it will at least stop it from getting worse, and it is nice to get on the treadmill and not have my tendons swell up...It was nice to not wake up with a bright red face everyday.....
I'll keep my fingers crossed for you Seattle...

[halfpipe101]

Hey oilgirl,I am thinking about going to my doctor this week and asking for plaquenil

he really hates it because he fears the eyes but I wanna try it out on a trial basis for 3 months at 100mg or 200 mg

do you think i should go to him or see a specialist?

what are the chances a specialist would give it to me when i say i have symptoms of butterfly rashes/fevers-flushing/ and joint pain (on my hands/fingers)

[halfpipe101]

and lamarr are you saying tanning for 15 minutes a week would benefit us?

and on my led I still dont know what the infra red is used for? I feel more heat when its on but what are the benefits compared to the yellow and red....

thanks everyone and sorry thats alot of QUESTIONS haha

Edited by halfpipe101, 05 February 2010 - 03:57 AM.

[oli girl]

Hey oilgirl,I am thinking about going to my doctor this week and asking for plaquenil

he really hates it because he fears the eyes but I wanna try it out on a trial basis for 3 months at 100mg or 200 mg

do you think i should go to him or see a specialist?

what are the chances a specialist would give it to me when i say i have symptoms of butterfly rashes/fevers-flushing/ and joint pain (on my hands/fingers)

Halfpipe- 1. You can start at 200mg, I just wanted to make sure I wouldn't have a reaction first and went slow with the dosage. I acutally just started 300mg since I got joint damage.

2. Who do you think u would have a better chance of getting it? Do have the butterfly rash now? Is the flushing still there with menacrpin (sp)?, Have you had any xrays or such that show joint issues? ( though I think in Canda u guys get things easier then we do here in the U.S., if Seattle gets his from the primary, he's lucky cause it is very rare here in the U.S.)

After my 4th Rheum I finally got it from the flushing, xray showing joint damage, nails like lupus pts and sjorgen's and he prescribed it before my labs came back.

So a specialist might, worse scenerio would be ask the primary 1st no sucess try specialist.

3. As for the eyes, it is very rare from what I have read, usually people who have been on it for 10-15yrs and then it only a few I have read...Also my rheum said people get in trouble w/the eyes if they are taking high doses and well you don't need that he says for it to work.
The only other thing I have read about plaquenil is people with posarisis (sp) should not take plaquenil, It causes a very nasty rash, and in rare cases people without posarisis have experinced this. I was fine and I have extreme sensitivity to meds since accutane.

Hope this helps......though I am not 100% better, I really can't explain why it has helped so much so fast but I am

Seattle let me know how things go w/ your appointment.

You know I don't get how some drs can be soo okay with precscribing or reffering for Accutane, but they get all worried about a drug that's not even half as dangerous.

[lamarr1986]

and lamarr are you saying tanning for 15 minutes a week would benefit us?

and on my led I still dont know what the infra red is used for? I feel more heat when its on but what are the benefits compared to the yellow and red....

thanks everyone and sorry thats alot of QUESTIONS haha

Yeah just cover your face while tanning. Infrared works much depper than the other wavelengths e.g. it may be able to relieve inflammation of the larger deeper vessels.

[lamarr1986]

Hope this helps......though I am not 100% better, I really can't explain why it has helped so much so fast but I am

Seattle let me know how things go w/ your appointment.

So glad to hear your doing well! as the months go by you should continue to see even more improvement. You should try staying on 300-400mg for a while and by all means reduce this again in say 6 months time. I only take 200-300mg of mepacrin a week and my results are maintained at this dose.

Best wishes

Edited by lamarr1986, 07 February 2010 - 06:04 AM.

[Seattle JT]

Oli girl,

My appointment is Friday so we'll see. I'll let you know what happens though...

[halfpipe101]

lamar someone posted this about the rlt/light therapy and its really scaring me to be honest,i think he was only referring to red light therapy but it scares me because RLT is the one I mostly use because i didn't know if yellow light was safe when I was on doxy and my skin did not get any better from using just the red lets say


>>>Dont mean to but in, but the Yellow LED's are out there and make much more sense for rosacea as they cause the vessels to physically shrink. There are a couple hand helds and some full face machines. I'll try to find the links again.

I watched the rosacea forum with distraught. Many of these people were selling RLT and adding testimonials. I was approached by over a dozen people making commission off of this device. The results are tainted and skewed and unethical. People who sound off are banned or attacked.

The interesting thing I found that at first it may help some, but look at those same people, they have stopped using them a couple months in. Everything about them is theoretically unsound.

Here is a partial list taken from one of Dr. Nase's posts:

1. It increases the growth of blood vessels exponentially
2. It increases blood flow by up to 300% for 8 to 10 hours
3. It increases the production of the three worst substances for rosacea, NF KappB, VEGF and nitric oxide
4. It causes increase in fibroplasia - rhinophyma and orange peel skin
5. It increases ATP which the NRS has shown to cause outbreaks and papules
6. There are significant numbers of side effects including first and second degree burns. He then copied and pasted a half dozen incidents reported by the FDA.
7. Worst of all, people are putting these machines together without any bakground in biophysics, so sudden energy surges can cause permanent facial burns or scarring
8. Dr. Nase said that laser physicians are now treating RLT cases to undo the increased redness, flushing and burning.
9. He did mention one form of rosacea that it might help, steroid rosacea.
10. The key thing to remember is that many of those people are selling machines and making up their own testimonials.

If I am wrong about any of these points Im sure Dr Nase will correct them. Its just not smart.