1154 replies to this topic

[oli girl]

Halfpipe- The flushing yes, went away in 2wks, the redness I just woke up one day about 1month after plaquenil and it wasn't red, though at times it still gets slightly red, probably due to the broken capillaries from the flushing.
Wether it be truly Roseaca (flushed and red 24/7) or probably due to the fact I have Accute Inflamation in other places. My symptoms and problems resemble thoose who have connective tissue disorders, lupus and such, and well I have Accutane induced Sjorgen's and arthritis. (though most of my lab work is normal sed rate and such) Why soo fast don't know, after everything I have tired I have just responded well to plaquenil and my Rhuem didn't seem suprised by the quick response.

Lamarr- You were right the plaquenil hasn't thinned my hair worse, in fact it has been growing and getting stronger. The rhuem must of noticed a diffrence and tried to pull a strand out,(which in the past numerous strands would came out) and well it wouldn't come out.
Question though??? How has the raynaud's been since the anti or do u take something elese for that????

Seattle- You probably be okay to bump up to 300mg or 400mg if needed. For the joints and muscles give it time, though mine are better then previously he said it will take about 4-5 months for full relief.

[lamarr1986]

Halfpipe- The flushing yes, went away in 2wks, the redness I just woke up one day about 1month after plaquenil and it wasn't red, though at times it still gets slightly red, probably due to the broken capillaries from the flushing.
Wether it be truly Roseaca (flushed and red 24/7) or probably due to the fact I have Accute Inflamation in other places. My symptoms and problems resemble thoose who have connective tissue disorders, lupus and such, and well I have Accutane induced Sjorgen's and arthritis. (though most of my lab work is normal sed rate and such) Why soo fast don't know, after everything I have tired I have just responded well to plaquenil and my Rhuem didn't seem suprised by the quick response.

Lamarr- You were right the plaquenil hasn't thinned my hair worse, in fact it has been growing and getting stronger. The rhuem must of noticed a diffrence and tried to pull a strand out,(which in the past numerous strands would came out) and well it wouldn't come out.
Question though??? How has the raynaud's been since the anti or do u take something elese for that????

Seattle- You probably be okay to bump up to 300mg or 400mg if needed. For the joints and muscles give it time, though mine are better then previously he said it will take about 4-5 months for full relief.

My raynaud's is still there, but it isn't really raynaud's anymore... Just relatively normal cold hands and feet in cold climates. It took about 6 months on the mepa for my hands to reach the point they are at now!

My mum joints continued to improve on plaquenil until about 5-6 months aswell, then hit a plateau. So you should see some good improvement yet.

I believe the reason why some of us see such fast results, is that our bodies haven't been in a state of inflammation as long as many people with auto immune/inflammatory dissorders (well that is assuming that it isn't many years since you took tane) thus the damage which long term inflammation can cause, isn't to extensive....

Edited by lamarr1986, 22 February 2010 - 08:35 PM.

[lamarr1986]

Hey guys, will no longer be posting on here anymore. You can add me or email me at marklamar11111@hotmail.com if you need any advice or support.

I'm fedup with people on these forums so i will stop spending my time on here trying to help people.

I still want to help you guys with accutane side effects, so you know where i am!!


cheers

[1_fighter]

Hmm yeah I don't know anything about that. It sounds like a bad reaction. How long did you go off accutane for before restarting? I'm going to see if I can find anything out about this, but right now I don't have any advice. I'm sorry...
[/quote]
I think i know what the bumps are bro its like a yeast on my skin it can be mistaken for acne. The yeast is called pityrosporum folliculitis, since i do a lot training i'm sweating. So even when i shower the yeast some how stays and these small tiny bumps form on the surface and are mistaken for acne. Yeah bro had to do some research on this. There's a product call Nizoral Shampoo that seems to be doing the work of ridding the red bumps, but only time well time. I'll update you on the it. I've been on tane since August 2008 and finished February 2010. When i stopped would only be two weeks and i would begin the tane treatment again

[Seattle JT]

1_fighter

I'm glad to hear it! Hopefully that works out man as it is a much better solution than continuing on with accutane indefinitely.

Edited by Seattle JT, 24 February 2010 - 10:15 PM.

[MJ-03]

Wow - it is so nice to find this thread. Thank you so much for starting this up!

I have been off accutane for maybe 18 months and just this winter has this flushing thing begun.

At first I thought it was a flu, then an allergy until I finally realized that my skin was sensitive to HEAT! Of course this had to happen on my year off away from home teaching english in JAPAN!! When it happens the kids stare and ask if im okay and I feel like jumping out the window!

Please, if anyone has any advice let me know! I saw the fish oil tip which i will try. I hope to god it gets better in time!

Thanks again for the post - it's nice to know I'm not alone in this

[halfpipe101]

Hey everyone

I went to my doctor this morning and talked to him and he was about to give me plaquenil,literally about to write the prescription and then just stopped and said "IM NOT GONNA GIVE YOU PLAQUENIL,I CANT I CANT" and he was only gonna write it for 100mg...

He was saying how he could get sued if I get eye damage and all this..

Talked some more and He sent me for some test for inflammation

S,SR,CRP,ANA,RI

(edit: looking at these tests online,they test for autoimmune disorders and others..what are the chances that I would get some results back with these tests that would give him a reason to put me on plaquenil? because he said if something comes back with the tests he will think about it)

those are the tests I just got my blood work done on.

fucked up thing is when I told him accutane is more dangerous then plaquenil he said "but accutane I am covered because its for acne and I can say I gave him accutane for acne"

Basically made me feel when leaving that this is a doctor whos not looking to help me with my problems even when everytime I go in there im red/rashy and flushy,hes not looking to help me find a answer with trials and errrors but is only looking for patients with things he can be covered for when I thought the thrill of being a doctor was to help patients like us find the answers.

and when i told him about the flushing,he said plaquenil won't do anything for the fevers and that next time i get a fever I should take my temperature and come back to him with the results..


loss of words right now..

Edited by halfpipe101, 26 February 2010 - 01:25 PM.

[Seattle JT]

Hey everyone

I went to my doctor this morning and talked to him and he was about to give me plaquenil,literally about to write the prescription and then just stopped and said "IM NOT GONNA GIVE YOU PLAQUENIL,I CANT I CANT" and he was only gonna write it for 100mg...

He was saying how he could get sued if I get eye damage and all this..

Talked some more and He sent me for some test for inflammation

S,SR,CRP,ANA,RI

(edit: looking at these tests online,they test for autoimmune disorders and others..what are the chances that I would get some results back with these tests that would give him a reason to put me on plaquenil? because he said if something comes back with the tests he will think about it)

those are the tests I just got my blood work done on.

fucked up thing is when I told him accutane is more dangerous then plaquenil he said "but accutane I am covered because its for acne and I can say I gave him accutane for acne"

Basically made me feel when leaving that this is a doctor whos not looking to help me with my problems even when everytime I go in there im red/rashy and flushy,hes not looking to help me find a answer with trials and errrors but is only looking for patients with things he can be covered for when I thought the thrill of being a doctor was to help patients like us find the answers.

and when i told him about the flushing,he said plaquenil won't do anything for the fevers and that next time i get a fever I should take my temperature and come back to him with the results..


loss of words right now..

Hey man. Sorry to hear that. Did you offer to sign a waiver of rights? My doctor isn't covered for plaquenil either because she's not a rheumatologist so in order for her to give it to me she covered herself by having me sign a waiver saying that I cannot sue her for damages. If that is all that is holding your doctor back then you should try to do that.

[halfpipe101]

thanks alot seattle will be sure to ask him for that

I wonder if they have that in canada though?

and yeah its pretty much all thats holding him back

Edited by halfpipe101, 26 February 2010 - 06:12 PM.

[Seattle JT]

thanks alot seattle will be sure to ask him for that

I wonder if they have that in canada though?

and yeah its pretty much all thats holding him back

Yeah true I don't know how your laws work. Down here the doctors just need you to sign your name on a piece of paper stating that you forego the rights to sue them and assume full responsibility.

[oli girl]

Halfpipe- See if you can sign a waiver. I just went to the eye doc for a vision field test and check up since I have bleperitis, sjorgen's problems. The eye doc who is a retina surgeon also said the same thing, she has only read studies and seen people have eye problems if they are above 400mg or on it for 15yrs or more, but if caught in time it is reversible.
Also I know for me it took 4 rheums, I couldn't get my regular doc prescribe to me. It was a hassle to have to see a new doc each time. Maybe something will show in the lab, but then again that would suck.

Good Luck

[halfpipe101]

As bad as it sounds I really want something to show up on the test

because I believe something is wrong inside

my inflammation is so high in my body I feel and not even that,I pretty much have every symptom of systematic lupus and the only time I had relieve was on mepacrine

seb derm treatments don't work

rosacea treatments don't work

doxycycline don't work

First time on a lupus treatment and Im on my way,yet its so unfortunate that the yellow skin got to me but apart from that,it just shows me that these are the treatments that my body needs

Edited by halfpipe101, 01 March 2010 - 05:35 AM.

[oli girl]

Same here Halfpipe. I actually had a positive ANA and DS Antibody (indicative of SLE;Lupus) but Mi tried to say that it was so low that it was nothing and 3 rheum called me crazy.....Recently I was retested for all that and came back normal, except physical findings. I was nervous the Rheum was going to take me off, but he said your clinical physical findings resemble that of a UDCTD

though my flushing is gone, I have so much damage to my joints,bones and tendons, I probably going to plateau like Lamarr said in that aspect. I hate the day I ever heard of Accutane.

Just keep being persistent don't give up!!!!!!

[halfpipe101]

seattle how is plaquenil working for you?

[pappion]

As bad as it sounds I really want something to show up on the test

because I believe something is wrong inside

my inflammation is so high in my body I feel and not even that,I pretty much have every symptom of systematic lupus and the only time I had relieve was on mepacrine

seb derm treatments don't work

rosacea treatments don't work

doxycycline don't work

First time on a lupus treatment and Im on my way,yet its so unfortunate that the yellow skin got to me but apart from that,it just shows me that these are the treatments that my body needs

I know why Seb Derm treatments dont work, firstly i'm 23 years old i took accutane at 17 and developed facial flushing and cracked lips throughout my course. After discontinuing the product i developed extremely severe seb derm of the face and scalp, i'd gauge about an inch thick all over at it's worst. The outer portion of my eyes became very red and i could never gain a pound above 10 stone.

To explain whats happening to you Accutane is a synthetic form of Retinoic acid, retinoic acid is what retinol is converted to to be used in the cell. It is not stored in the liver and cant be used anywhere else other than the cell itself. Also retinoic acid cannot retro convert itself back to retinol it stays as retinoic acid. The body is damaged on a cellular level due to accutane, it possibly causes cholastatis of the liver due to a build up a glucuronidated metabolites, this is not conclusively true but could be plausible. Any way when the body finds itself unable to remove a fat soluble toxin such as accutane, it stores it in the fat cells of the epidermis just under the skin.

This is true of any environmental toxin such as mercury, uranium, you name it they're all stored in the fat cells under the epidermis to keep them from entering the bloodstream and causing even more damage. Whereas mercury stored in the epidermis may cause chronic fatigue it will never cause seb derm or rosacea due to the fact that it has no control over cell differentation. Retinoic acid is used by the body to control skin cell differentation, therefore the places where accutane resides in the fat cells under the epidermis is where you have out of control skin differentation (ie skin growing far to quickly, which is what Seb derm is)

Also look up hypervitaminosis A and you'll see all your symptoms there, this is a condition where the body contains too much vitamin A, joint pains, hairloss, petichea, inability to gain weight, chellitis of the lips, seb derm are all symtoms. But it's not as straight forward as that, it's not hypervitaminosis A, it's similar but it's not the same because unlike retinol which is stored in the liver, retinoic acid isnt, so accutane users livers are normally perfectly fine, because they havent got any accutane in the liver, it's all stored on a cellular level, normally under the epidermis of the face or scalp.

The only way to remove accutane from the skin cells i've found is Eniva vibe cardiac and life 2oz's a day it seems to scab the seb up then it just falls off leaving healthier skin underneath, but i've now developed hairloss as a result of the accutane being pushed out of the cells, which is displacing one problem with another. I'm thinking the hairloss is associated with the retinoic acid possibly binding to the endrocine hormones such as the thyroid and putuitary.

Also all these people taking anti inflammatorys why dont you supplement your adrenals, thats were all your anti inflammation hormones are created. It's a well known fact adrenal problems cause hairloss, plus environmental toxicity causes you adrenals to shut down. Remember it's all cellular.

[pappion]

Halfpipe- See if you can sign a waiver. I just went to the eye doc for a vision field test and check up since I have bleperitis, sjorgen's problems. The eye doc who is a retina surgeon also said the same thing, she has only read studies and seen people have eye problems if they are above 400mg or on it for 15yrs or more, but if caught in time it is reversible.
Also I know for me it took 4 rheums, I couldn't get my regular doc prescribe to me. It was a hassle to have to see a new doc each time. Maybe something will show in the lab, but then again that would suck.

Good Luck

oh sorry the yellow skin thing is probably carotemia due to the body now being unable to convert beta carotene to retinol, due to the high level of retinoic acid already in the cells, diabetics and people with hypothyroid have the same problem causing their skin to turn yellow, do you eat high carotene foods like lots of fruits and vegetables cut out high carotene foods and it should go away.

Edited by pappion, 08 March 2010 - 08:10 AM.

[Seattle JT]

seattle how is plaquenil working for you?

Hey man. Two weeks ago today I stopped taking it (7 days in) because I got pretty sick. I had a nasty sore throat/fever for like 5 days followed by 5 days of, generally nighttime, coughing. I have been waiting to fully recover before starting again as plaquenil lowers the immune system so I figured it wise to stop since I only had been on it seven days and can't be for certain that it isn't the reason I got sick in the first place. I'm planning on starting up again here shortly, but I still have some lingering throat pain and am waiting for that to disappear. I had tonsillitis 4-5 months after my round of tane in 2006 and ever since then I swear I get the worst sore throats whenever I do get sick. I'm pretty sure I never really recovered properly, but oh well. I'll let you know when I start back up and of course will update you moving forward...

[Tommy2010]

The Rosacea Forum and its informed members have rumored that Rifaximin has caused rosacea sufferers to go into remission. (Well 96% of sufferers in the study.)

Again, this is not a cure. Remission means that triggers and symptoms are kept to a manageable existence.

[halfpipe101]

umm are you making a joke?

that drug is for severe diarrhea?

and seattle that is most likely smart to stop until you get better

EDIT:tommy I looked on the forums and seems very interesting as it is a bit embarrising to say but I have bowel problems but just always thought it was normal

could you find out a good dosage to be on and for how long?

and do you only take it for a certain amount of time?

and everyone I got my lab results back

ANA- negative..

lipemia-Slight

rheumatoid factor- 14 (ntermediate)

I understand that ana if negative means 75% chance of not lupus but if any of you understand the lipemia and RF results fully mean that would be great as I am thinking about finding a new doctor and dont wanna go back to my old one as I feel he does not want me as a patient anymore.

Edited by halfpipe101, 09 March 2010 - 06:04 AM.

[Tommy2010]

Oh I had no idea what the drug was used for. Yikes!

Yeah, I don't know if I would ever take it.