Jump to content

oli girl

Member Since 16 Mar 2009
Offline Last Active Today, 08:52 AM

#3423255 Repairing the long-term damage from Accutane

Posted by oli girl on 29 March 2014 - 10:28 PM

Have  you ever been tested for your thyroid? I don't know what other symptoms beside hair loss and the sores you mentioned. I had nose and sores mouth. I sometimes wonder if I had drugged induced lupus which can go away. About a year later I had my ds antibody strand tested and it came back negative. I still though can 't take any sulfa or nsaids which lupus people can't take.  Though I don't like prescription meds I did at that point get on Plaquenil a anti malaria drug and take b12 and Vit C. I was desperate at the time and in bad shape. I don't take plaquenil any longer though. I also stayed away from any acidic foods. My way of living food wise is very simple.


It also could be from the chronic dryness as when I got dx with type 1 diabetes and started insulin all my dryness, vision and most issues have gone away. I live by Chicago and this winter was horrible. However, a lot of autoimmune issues can have a lot of the same symptoms. Pm if you have any more questions. I was out of town so sorry for the delay in response.

#3419012 Accutane Flushing...

Posted by oli girl on 07 March 2014 - 05:17 PM

I am surprised I never saw your post back in July! I would of told you to stop and to see the thread in the rosacea forum or Lamarr However, what done is done and I am not sure how long you have been on the menaprcrine, but it should help and get better with time. Also, it should help with the joint pain though it takes a little time. I took plaquenil which is the same here in the U.S. Hope things improve!


I have always said Accutane is Russian Roulette!

#3411649 Repairing the long-term damage from Accutane

Posted by oli girl on 31 January 2014 - 10:05 PM

Well the latest thing they are being investigated in are the some of the recent studies on IBD & Crohn's that have come out. Looks like they tried to use them in the New jersey court cases only to find out they were funded by yours truly.....that's right Roche!

#3411422 Repairing the long-term damage from Accutane

Posted by oli girl on 30 January 2014 - 09:44 PM

There is actually a study that accutaneresearch posted on the ragfourm regarding Isotretintoin - dna methylation and mental disorder. I need to pm a mod as for some reason acne.org wont let me copy and paste bleh!

#3410351 Repairing the long-term damage from Accutane

Posted by oli girl on 25 January 2014 - 10:07 PM

Yes, there is also a France RAGFOURM for Victims. So anyone who knows French or are from France, you can seek help there also. http://avrg.unblog.fr/

It won't let me paste links here so you can type it in. There is also a victim forum for those in Swiss countries.


Great it finally came off the market in France!  cheer.gif It will be a harder battle for Generics. There was a petition on change.org that posted all over the place for generics, yet we couldn't get enough signatures to do anything :(


Hope all is well

I hate to tell  you epigenetics is a real plausible explanation, especially since if you get pregnant on Accutane it causes epigenetics of the fetus. I believe in some maybe they are not damaged to the extreme and so they may get away with diet and life style changes, however that is not the case with every victim. We are all different yet suffer some of the  same things, I believe this poison changes DNA in some.


Diet worked for you, doesn't mean for everyone!

#3409839 Has Anyone Regrown Hair After Accutane?

Posted by oli girl on 22 January 2014 - 10:12 PM

If your not going to quit then I would speak to your physician to lower your dose. No one can really tell you if it will come back or not, people have had hair loss on 20mg! Are you on any other medications? Are you taking any supplements? Accutane is known to deplete Vit D, iron, b12 and sometimes biotin levels. however, some have developed acne from biotin. See the holistic forum.

I would just stay away from any prescription hair loss drugs.

#3409161 Repairing the long-term damage from Accutane

Posted by oli girl on 19 January 2014 - 10:45 PM

I never taken birth control except when on Accutane, but have you looked in to bio identical hormones or a natural source of estrogen? I believe holistic/organic stores or even whole foods might have some natural sources of estrogen. Funny thing is while on Accutane I had a over growth of hair, then 2 months off it started falling out, I have never figured out if maybe I was deficient in estrogen to begin with and the birth control helped that and hence the over growth of hair, or if it was Accutane.


I wouldn't take any birth control pills though, they can cause problems and depending what meds your taking now you that might not be good.


I am not expert, but just a thought :)

#3403412 Side effects from Accutane (Roaccutane)

Posted by oli girl on 25 December 2013 - 09:55 PM

No your not the only who has experienced this. The thing is though some have had anxiety and social issues and depression continue even after their course is over and they have had their acne return. I personally would suggest that you speak to your physician and think about stop taking Accutane. Have you tried light therapy or looking in to the holistic forum.


Merry Christmas!

#3400954 Repairing the long-term damage from Accutane

Posted by oli girl on 14 December 2013 - 10:59 PM

Well I may be wrong, but a documentary was done on CNN by Dr. Gupta on pot and stopping severe seizure disorder and some other chronic illnesses. They found that strain was low in THC and high in CBD which has medicinal properties, but no psycoactivity. scientist believe the CBD quiets the excessive electrical and chemical activity in the brain that cause seizures and etc....One very young girl couldn't even walk etc.... She takes it liquid in her food. There is only one dispensary in Colorado I believe it is and they only ask for donation.


You can read or watch the documentary just Google it, for some reason it won't let me copy and paste lately I don't know why????  It's called weed and featured on CNN.

#3399541 Repairing the long-term damage from Accutane

Posted by oli girl on 08 December 2013 - 12:07 AM

cry.gif cry.gifcry.gifcry.gif Is sad! I will add him on the list we have of those who have committed suicide on the ragfourm. We had one on the old one too! In fact he posted, but erased his post on playsomebeat thread on she posted back in 2011 on whether to take Accutane or not and he posted on here.


This should be a reminder to all, that though we may not always agree, that we may get on each other nerves at time and drive each other crazy, we are all human, we all have feelings and we are suffering from the hands from the same poison Accutane!


To Those of you that sent me a pm this weekend or last week I will respond to you this coming up week! - Jen

#3399151 Repairing the long-term damage from Accutane

Posted by oli girl on 05 December 2013 - 08:29 PM

There acutally use to be a organized forum called the ragfourm, however many of the 5,000 members don't go on the new one! Very devasting to us what happened to the old one

#3396689 Repairing the long-term damage from Accutane

Posted by oli girl on 23 November 2013 - 09:51 PM

Okay, I have had enough this diabetic is cranky now! It is very obvious that 1 a few of you didn't read my post correctly so I will lay it out for you loud and clear the best I can and If you still don't get it then so be it!


1. I don't see any where I disagreed with diet as I even stated I have a very good diet and did so before Accutane! To assume that I don't and to assume that I  eat sugar, carbs etc.... that's what caused my diabetes is absurd. It is very apparent you are not educated on Type 1 Diabetes which is not surprising since type 2 is such a epidemic and is 90% related to diet. However, Accutane killed my pancreas and no diet is going to heal my pancreas and magically regenerate islet and beta cells! In other words my Diabetes is NOT related to poor diet and  my pancreas wasn't over stressed over a long period of time due to poor diet! My problems didn't come years or months after Accutane. My problems didn't start out slow and progress.


2. My response to having to take thyroid meds and insulin (for life) was in response to Annoy making this statement - "People here are searching a solution with the same mindset that cause the poisoning in the same place, with an other drug, an other magic pill. It will never work." - Basically I was trying to advise Annoy that some people in the Accutane community have no choice but to take drugs....Once Again part of thyroid is gone due to Grave's disease while taking Accutane, Insulin due to Type 1 diabetes. If I don't take these then I either go in cardiac arrest, coma or 2 days without insulin DEATH!


3. Sergiorezende - Thank You for your post, I am already aware of a lot of things you mentioned not to ingest, in which I did before Accutane too, however fruit is horrible organic or not for diabetic it is still fructose! I eat a very clean/organic diet, which hardly any carbs. As for water or any fasting that becomes a issue for us Type 1 diabetics. Why 1 might ask???? B/C two things happen 1 our blood sugars still rise even with out food, due to the liver outputs sugar and we don't produce insulin to counteract this process so we have to take insulin and then risk possibly suffering a low. In which is a roller coaster in itself for a type 1 diabetic.


4. I have been around the Accutane Community for a long time, have meet and spoke with many influential people who were heavily involved regarding Accutane from many years ago. I have read stories and spoke to people who have gone to many lengths and/or spent a lot of money to heal themselves with some success or no success. People need to remember we are made up of different DNA, we need to remember and respect that certain things work for some, but doesn't mean that it works for someone else. We need to remember one may suffer from something that another does not.  We need to remember that we are all here to help each other and respect each other we are all brought together by the same reason poison by Accutane!


5. If you ever read my full story which the link has been posted on here, and if you read my 5yr update then you will know I am doing actually pretty good considering I have life long diseases from Accutane. My only hope is this to heal my body completely!  http://www.cnn.com/2...abetescell1130a


Basically, For Me I believe Accutane Altered my DNA no genetics here in my diagnosis of autoimmune disorders!


Dubya - I haven't forgotten your question. I know I have some things on Sjrogren's and Accutane just have to find the time to look for it, Which I will soon :)

#3396632 Repairing the long-term damage from Accutane

Posted by oli girl on 23 November 2013 - 04:00 PM

Ah, I figured that's what happened.
And I echo your sentiments; I believe we will not get different results until we stop doing the same things. That being said, diet alone really does do a lot, but it is not a cure. Hearing that people have been considering the epigenetic angle for nearly a decade now both makes me hopeful and a little disconcerted- hopefully we're only ever moving closer to a cure.
I'll keep my eyes peeled for your response.

My sentiments exactly. It sucks knowing many of Accutane's side effects may be rooted in rather new discoveries about how biology works. There are so many reasons to be negative about it, and at the same time we are lucky that this area of biology is exploding in recent times.
There are ventures into discovering the epigenetic components of autoimmune disease, fungal infection, personality traits, aging, drug interactions, and of course cancer, going on at the moment. Diet, exercise, and even some traditional medicines, are being considered by some to be very influential on epigenetic mechanisms.
It's sort of a lame example of how profoundly important this branch of science may be, but jellyfish have been found to maintain youth via going through demethylation to "lose" some of the epigenetic tags that cause them to age. They can age backwards.
As far a a treatment or cure goes, probably no one can give a decent answer right now.
You mentioned using certain substances that effect methyltransferase and histone deacetylase enzymes potentially causing problems. You are probably right to some extent. These drugs seem to often cause diarrhea, nausea, and bowel irritation. These are the only side effects I can think of off the top of my head, but there are surely others.
As far as causing cancer goes, a very high percentage of the newer cancer medications inhibit the methyltransferase or HDAC enzymes, causing the removal or loss of methyl tags that shut down or repress DNA repair genes and tumor supressor genes in many types of cancer.
On a side-note, I think most cancer cells actually over-express telomerase and cyclin proteins at some point, which grants them immortality and fast growth! We know if anything, Accutane has the opposite effect on these proteins, which is interesting. Nathan Carr had written a long paper concerning Accutane's supression of telomerase in fast-growing cells being a possible candidate for explaining its side effects (advanced aging). It's understandable what he was getting at, but it's hard for me to understand how just a handful of pills had such a great effect on some sufferers, or how some of the side effects are not necessarily signs of rapid aging, or even explain the wide variation in side effects. Personally, I believe the active antagonism on the effects of certain steroids and other growth factors that Accutane has been shown to cause explains the decrease in telomerase, as inhibiting these growth-promoting pathways has been shown to inhibit production of the enzyme. I really hope I'm right about this one since AFAIK, a human can't get additional telomeres to grow back onto their chromosomes once they are lost.
Back to mehtyltransferase and HDAC inhibitors. There's something like 40 known enzymes with methyltransferase activity and I think there's 20 or so HDAC enzymes. There are also different histone acetyltransferase (HAT) enzymes that work to open-up genes for transcription, but I'm not sure many methods to influence these HAT enzymes are being developed.
Ideally, you would want to know which genes have been persistently "slowed down" or silenced, which of the HMTs or HDACS act on the histone for that gene/s, and what drugs, substances, or other methods can be used to influence those particular histone-modifying enzymes to restore the pre-Accutane transcription rates.
Trying to do this on our own would be taking a shot in the dark.
Some methods target many of the different classes of these histone modifying enzymes, and some have a very specific range.
The narrower the range, the less likely to hit the target, but one would think there should be less "collateral damage" if something goes wrong.
Save the Accutane analogies!
I'll finish this explanation up tomorrow. Just take it all with a grain of salt since I have no background in biology or chemistry, and look into it a little deeper to make your own assumptions.
Well, this just shows the complexity of the issue. Dubya, you're making a valiant effort to try to understand the science behind this, but I can't help thinking that we really need someone with an expert understanding of genetics to critique these theories. What you're doing amounts to the same thing that Nathan Carr did in his paper, which is to stitch together many scientific papers to make an argument that sounds convincing (at best) to a layperson.
The epigenetic effects and pharmacological effects behind accutane are so complex already that it takes an expert to speculate at the method of action. Undoing these complex effects, even if we fully understand the method of action, which nobody does, is MUCH  more difficult a task. It might be impossible. Chemical reactions can't be undone in the same way in which they were originally done.
In this way I sympathize with anonyy, although not for the reasons which he espouses. This line of inquiry (epigenetics) is, in my mind, officially dead until we can get some experts to weigh in on the matter.

Nathan actually had his paper published in a pharmacology book that is sold nationally! So he does have some merit!

#3393279 Blood In Urine While On Accutane

Posted by oli girl on 08 November 2013 - 08:41 AM

Yes stop immediately and call your physician immediately! Blood in the urine can be serious/ infection etc!
Good luck

#3391363 Do You Suffer From Accutane Hair Loss? Read This!

Posted by oli girl on 29 October 2013 - 05:53 PM

You can't compare Coffee to Accutane! Accutane is toxic even the original inventor stated that! Accutane aka Chemo can't  be good for you and I won't even get into how many women who have unexplained infertility reports. Not to mention sexual dysfunction has been reported to the FDA since the 80's and hormonal issues. Why would  Roche spend any extra money on their miracle $$$$ drug, not to mention they pulled from the U.S. and generics don't have too.


However, there is promise in Dr. Crisler  for Accutane and propecia victims and research!


I am perplexed on why you are arguing with suffers as you will never truly understand unless it happens to you. If you have nothing to offer Robert then why waste your timeeusa_doh.gif


Robert I am sorry to hear that things aren't getting better for you and Dubya thanks for posting all that for him, hope your doing well!