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Time to be proactive!!
There is going to be a review of accutane in JUNE this year.
I want each and everyone of you from Europe to write the best email you can.
Send it to the representatives of your country and to as many independents as possible.
For those of you outside of the UK please send to all independents and to as many others as you can especially
to the MHRA in the UK.
This as a minimum, everyone send to as many representatives as you can. Once you have composed an email it is simply a matter of re-sending.
You must include your name ( data protection will protect you) age, dosage, duration and how long post A.
A complete and thorough list of all your side effects.
You must tell your story about how and when your sides evolved.
Write about your full experience but I especially ask that you concentrate on sexual dysfunction (brain - penis disconnect) and any sides that are not listed on the PIL.
For anyone who has or still is - talk about depression and try and describe it. I believe that many doctors think you are all depressed because of your acne and you really have to convey how this unique depression gets hold of you and how long it lasts.
For those of you who feel they have had there personalties change and or depersonalisation please describe it.
Most importantly talk about any suicidal ideation or attempts.
Please mention how accutane has effected and or interrupted your study/work.
Mention how you feel about accutane and any regrets you might have about taking it.
Write about any recovery and the time this has taken.
Add a brief detail about the response of you doctors and finish of with:
1 I have reported my sides to .......
2 I have never reported my side effects.
This is your opportunity to protest and have your voice heard. It will probably take you an hour which is less time than it would take to visit you GP.
I want you all to post on here when you have done it so as to encourage others to participate.
This is not a lot to ask, no excuses are acceptable .
We are trying to get better 'Patient Information' for anyone being giving accutane in the future - if you feel stronger than this then say so.
Please, Please participate.
http://www.ema.europa.eu/ema/index.jsp?curl=pages/contacts/PRAC/people_listing_000112.jsp#MNMS
Please copy and paste on any other forums you use and let us know that you have done this.
Many many thanks.
6 hours ago, cnb30 said:So the fact that Accutane is a retinoid is why we never get better?
Also does anyone here suggest getting a cat-scan/mri? If so, which one?
Definitely no to a catscan, it's alot of radiation. Mri is pretty much the gold standard for brain imaging. A step further would be a spectral scan, and even more detailed then that is pet scan. A pet scan is very expensive and you'd probably have to have something show up on the mri for insurance to cover it.
21 hours ago, sacha_n said:On 4/8/2017 at 2:45 PM, guitarman01 said:there are some things i'd like to get back to but,
just had a crazy idea, what if our body got used to and adapted to a different type of vitamin a? then after withdrawal of this vitamin it was looking for more, but never got it. It didnt treat normal vitamin a the same afterwards because our body was changed. I wonder how I would react to a extremely low dose of accutane years after I had taken it. I dont know if you could make a dose small enough though that id feel good about taking it.
The whole cell death, stopping cells from dividing thing, I was wondering if this could also have a anti aging effect and sure enough,Quite an interesting idea. They prescribe low dose isotretinoin too. But what would be the correct dose if this theory were true? If I were to try this I'd probably get prescribed low dose and take a pill once in a week, to see the effects. I won't be the first to try this though..
I'd have to go back to find details of the study and see what kind of dose they were using. In my mind this really isn't a serious idea. Yet anyways.
what might bepossible.
Oxidative DNA damage induced by copper and hydrogen peroxide promotes CGTT tandem mutations at methylated CpG dinucleotides in nucleotide excision repairdeficient cells
https://academic.oup.com/nar/article/30/16/3566/2380383/Oxidative-DNA-damage-induced-by-copper-and
Abstract
Oxidative DNA damage may play an important role in human disease including cancer. Previously, mutational spectra have been determined using systems that include transition metal ions and hydrogen peroxide (H2O2). GT transversions and CT transitions were the most common mutations observed including some CCTT tandem mutations. CT transition mutations at methylated CpG dinucleotides are the most common mutations in human genetic diseases. It has been hypothesized that oxidative stress may increase the frequency of mutations at methylated CpG sequences. Here we have used a CpGmethylated shuttle vector to derive mutational spectra of copper/H2O2induced DNA damage upon passage of the shuttle vector through human fibroblasts. We find that copper/H2O2treatment produces higher numbers of CpG transition mutations when the CpGs are methylated but does not create clear CT hotspots at these sites. More strikingly, we observed that this treatment produces a substantial frequency of mutations that were mCGTT tandem mutations. Six of seven tandem mutations were of this type. mCGTT mutations (6/63 = 10% of all mutations) were observed only in nucleotide excision repairdeficient (XPA) cells but were not found in repairproficient cells. The data suggest that this novel type of mutation may be produced by vicinal or crosslinked base damage involving 5methylcytosine and a neighboring guanine, which is repaired by nucleotide excision repair. We suggest that the underlying oxidative lesions could be responsible for the progressive neurodegeneration seen in XPA individuals.
i had an idea. this is similar to the TRT problem bodybuilders face. when a bodybuilder takes a steroid, their bodies shut down the ability to make natural steroids. we shouldnt be doing a TRT restart...we should be doing a retinoic acid restart??!!
we took a load of retinoic acid. our bodies then shut down the enzyme needed to convert retinol to retinoic acid (AS A DEFENSE). could this be causing a backup of retinol in the liver? would this be the reason we have both vitamin A deficiency and toxicity symptoms? this could also be the reason some react so poorly to foods containing high amounts of vitamin A. One of the key signs of aldehyde excess is brain fog, which is why we call pantethine the œclear head pill.
this enzyme THAT STARTS THE RETINOIC ACID RESTART....is ALDH
what is needed to produce ALDH ? acetyl-coA and a nad+ cofactor.
two supplements that help with this... pantethine and b3
Alcohol dehydrogenase as a critical mediator of retinoic acid synthesis from vitamin A in the mouse embryo.
https://www.ncbi.nlm.nih.gov/pubmed/9478048
Excessive vitamin A toxicity in mice genetically deficient in either alcohol dehydrogenase Adh1 or Adh3.
https://www.ncbi.nlm.nih.gov/pubmed/12027900
Retinoic acid down-regulates aldehyde dehydrogenase and increases cytotoxicity of 4-hydroperoxycyclophosphamide and acetaldehyde.
https://www.ncbi.nlm.nih.gov/pubmed/15470086
3 hours ago, tryingtohelp2014 said:i had an idea. this is similar to the TRT problem bodybuilders face. when a bodybuilder takes a steroid, their bodies shut down the ability to make natural steroids. we shouldnt be doing a TRT restart...we should be doing a retinoic acid restart??!!
we took a load of retinoic acid. our bodies then shut down the enzyme needed to convert retinol to retinoic acid (AS A DEFENSE). could this be causing a backup of retinol in the liver? would this be the reason we have both vitamin A deficiency and toxicity symptoms? this could also be the reason some react so poorly to foods containing high amounts of vitamin A. One of the key signs of aldehyde excess is brain fog, which is why we call pantethine the œclear head pill.
this enzyme THAT STARTS THE RETINOIC ACID RESTART....is ALDH
what is needed to produce ALDH ? acetyl-coA and a nad+ cofactor.
two supplements that help with this... pantethine and b3
Alcohol dehydrogenase as a critical mediator of retinoic acid synthesis from vitamin A in the mouse embryo.
https://www.ncbi.nlm.nih.gov/pubmed/9478048
Excessive vitamin A toxicity in mice genetically deficient in either alcohol dehydrogenase Adh1 or Adh3.
https://www.ncbi.nlm.nih.gov/pubmed/12027900
Retinoic acid down-regulates aldehyde dehydrogenase and increases cytotoxicity of 4-hydroperoxycyclophosphamide and acetaldehyde.
https://www.ncbi.nlm.nih.gov/pubmed/15470086
if i could take acutane again to fix this i would. oddly seems like a good idea
16 minutes ago, IntimateHemp said:4 hours ago, tryingtohelp2014 said:i had an idea. this is similar to the TRT problem bodybuilders face. when a bodybuilder takes a steroid, their bodies shut down the ability to make natural steroids. we shouldnt be doing a TRT restart...we should be doing a retinoic acid restart??!!
we took a load of retinoic acid. our bodies then shut down the enzyme needed to convert retinol to retinoic acid (AS A DEFENSE). could this be causing a backup of retinol in the liver? would this be the reason we have both vitamin A deficiency and toxicity symptoms? this could also be the reason some react so poorly to foods containing high amounts of vitamin A. One of the key signs of aldehyde excess is brain fog, which is why we call pantethine the œclear head pill.
this enzyme THAT STARTS THE RETINOIC ACID RESTART....is ALDH
what is needed to produce ALDH ? acetyl-coA and a nad+ cofactor.
two supplements that help with this... pantethine and b3
Alcohol dehydrogenase as a critical mediator of retinoic acid synthesis from vitamin A in the mouse embryo.
https://www.ncbi.nlm.nih.gov/pubmed/9478048
Excessive vitamin A toxicity in mice genetically deficient in either alcohol dehydrogenase Adh1 or Adh3.
https://www.ncbi.nlm.nih.gov/pubmed/12027900
Retinoic acid down-regulates aldehyde dehydrogenase and increases cytotoxicity of 4-hydroperoxycyclophosphamide and acetaldehyde.
https://www.ncbi.nlm.nih.gov/pubmed/15470086
if i could take acutane again to fix this i would. oddly seems like a good idea
I wouldn't touch the stuff again until there was proof this could be the case
What do people who have low libido, but still masterbate alot suggest for lessening masterbation? Also, nobody said anything about my other comment about whether or not the fact that accutane is a retinoid has anything to do with the permaneance of all this. Furthermore, if it is, is there any way to view this, or for doctors to see this?
9 hours ago, cnb30 said:What do people who have low libido, but still masterbate alot suggest for lessening masterbation? Also, nobody said anything about my other comment about whether or not the fact that accutane is a retinoid has anything to do with the permaneance of all this. Furthermore, if it is, is there any way to view this, or for doctors to see this?
The way to get doctors to see this is to do as I have asked.
I know you have had a particularly hard time with accutane and your story would really help our cause.
I don't think that anyone understands here that if you don't report your side effects then you are part of the problem.
WE WILL NOT GET HELP TO GET BETTER UNTIL ENOUGH PEOPLE REPORT THEIR SIDE EFFECTS WHICH WILL EVENTUALLY LEAD TO
RESEARCH.
Are you going to do your bit and write an email? - All email addresses have been provided!
2 hours ago, hatetane said:The way to get doctors to see this is to do as I have asked.
I know you have had a particularly hard time with accutane and your story would really help our cause.I don't think that anyone understands here that if you don't report your side effects then you are part of the problem.
WE WILL NOT GET HELP TO GET BETTER UNTIL ENOUGH PEOPLE REPORT THEIR SIDE EFFECTS WHICH WILL EVENTUALLY LEAD TO
RESEARCH.Are you going to do your bit and write an email? - All email addresses have been provided!
I did report to the company website, and I've discussed the issue with a couple doctors where else should i report? The FDA?
Just an update: I've stopped taking SJW because the pro-sexual effects stopped and it just made me feel uneasy. However, taking melatonin at night is still causing me to wake up with morning wood so idk. I've also added beta-carotene and seen benefits from that. It was something I've tried in the past but never stuck with
Isotretinoin's Role in Acne and Vitamin B12
Isotretinoin is a highly effective medication against acne; it can, however, decrease systemic vitamin B12levels by a mechanism that remains unclear but which may be related to decreased absorption of the nutrient.
A study published in the November/December 2014 issue of theIndian Journal of Dermatologylooks at isotretinoins complex relationship with vitamin B12, and suggests that routine supplementation is unwise in patients being treated for acne.
Vitamin B12homeostasis and excursions from normal are well documented. Pernicious anemia, a decrease in red blood cells caused by improper B12absorption, leads to nerve damage and possibly multiple psychiatric disorders. Folic acid deficiency is difficult to differentiate from pernicious anemia. Therefore, folic acid and vitamin B12levels are usually measured together and the 2 are usually supplemented together.
This study measured baseline vitamin B12and folic acid levels in acne patients and in healthy controls. They found that the acne patients had elevated vitamin B12levels. After 6 months on isotretinoin, the acne patients experienced a statistically significant decrease in vitamin B12and folic acid levels.
Vitamin B12deficiency was more commonly identified and more likely to be symptomatic in patients undergoing more than one 6-month course of treatment.
The authors advise against routine vitamin B12supplementation in all isotretinoin patients because vitamin B12aggravates acne. Patients identified as being deficient by periodic monitoring should be treated.
Isotretinoin patients are already more closely monitored by pharmacists than many other patients due to the iPLEDGE program. Part of isotretinoins propensity to cause teratogenicity is due to its effects on vitamin B12and (especially) folic acid levels. Special care should be taken for patients who have had gastric bypass surgery, as these patients are already more likely to develop vitamin B12deficiency.
On 4/10/2017 at 0:05 AM, cnb30 said:Has anyone here ever had anything show up on an mri, or a spectral scan?
Yea. On a mri. Not sure if it's related to accutane though. I'm getting a head mra soon to check blood flow and blood vessel health.
29 minutes ago, guitarman01 said:Yea. On a mri. Not sure if it's related to accutane though. I'm getting a head mra soon to check blood flow and blood vessel health.
I had an MRI, and it came up normal. Due to my headaches, Ive always wanted an MRA though. How did you convince them ? But now they know the contrast agent in MRA, gadolinium , leaves metal deposits for decades in the brain, Im not so sure I want one..
I'm a bit confused on exactly which B vitamin we might be low in?
Many reports suggest B12 butfurther up the page there's mention of both B3 and a product called Pantethine which is B5 related?
interesting, after reading what Pantethine can do I immediately ordered some. Look up the overview and tell me we wouldn't benefit from it!!?
Although I'm still unsure if our problem isn't just that we need these supplements but equally as important is how we absorb them - that's the prob after tane it would seem....
Ive been on B12 before but don't know how well I absorbed it???
3 hours ago, mikez said:I had an MRI, and it came up normal. Due to my headaches, Ive always wanted an MRA though. How did you convince them ? But now they know the contrast agent in MRA, gadolinium , leaves metal deposits for decades in the brain, Im not so sure I want one..
don't have a MRA, I had one along with MRI, Pet Scan etc....I had such severe brain pressure, vibrations etc....It showed nothing. Was useless, finally took 3 yrs but got a answer. I have paid so much to get no where!
2 hours ago, oli girl said:5 hours ago, mikez said:I had an MRI, and it came up normal. Due to my headaches, Ive always wanted an MRA though. How did you convince them ? But now they know the contrast agent in MRA, gadolinium , leaves metal deposits for decades in the brain, Im not so sure I want one..
don't have a MRA, I had one along with MRI, Pet Scan etc....I had such severe brain pressure, vibrations etc....It showed nothing. Was useless, finally took 3 yrs but got a answer. I have paid so much to get no where!
Perhaps it's a lumbar puncture we need over an MRI?
The pressure in head has more to do with spinal fluid issue perhaps?
Although in saying that, those tests that have shown Accutane to cause frontal lobe damage must of come from an MRI surely - I'm confused.
Or is pressure in head from "inflammation"??? These are the questions no one can answer.
8 hours ago, QuietSoldier said:Just an update: I've stopped taking SJW because the pro-sexual effects stopped and it just made me feel uneasy. However, taking melatonin at night is still causing me to wake up with morning wood so idk. I've also added beta-carotene and seen benefits from that. It was something I've tried in the past but never stuck with
What benefits have you seen in regards to Beta-carotene ? Effects on the skin?
8 hours ago, oli girl said:11 hours ago, mikez said:I had an MRI, and it came up normal. Due to my headaches, Ive always wanted an MRA though. How did you convince them ? But now they know the contrast agent in MRA, gadolinium , leaves metal deposits for decades in the brain, Im not so sure I want one..
don't have a MRA, I had one along with MRI, Pet Scan etc....I had such severe brain pressure, vibrations etc....It showed nothing. Was useless, finally took 3 yrs but got a answer. I have paid so much to get no where!
Are you saying you had these symptoms before the tests? Or the mra gave you these symptoms? If so how long did they last? Your answer was you got diagnosed with a auto immune disease correct? What tests finally diagnosed this and does this disease have a specific name? If you don't mind sharing. Thx
11 hours ago, oli girl said:14 hours ago, mikez said:I had an MRI, and it came up normal. Due to my headaches, Ive always wanted an MRA though. How did you convince them ? But now they know the contrast agent in MRA, gadolinium , leaves metal deposits for decades in the brain, Im not so sure I want one..
don't have a MRA, I had one along with MRI, Pet Scan etc....I had such severe brain pressure, vibrations etc....It showed nothing. Was useless, finally took 3 yrs but got a answer. I have paid so much to get no where!
Sorry to hear that..I know the feeling. In short, what was the answer?
10 hours ago, Justdry said:19 hours ago, QuietSoldier said:Just an update: I've stopped taking SJW because the pro-sexual effects stopped and it just made me feel uneasy. However, taking melatonin at night is still causing me to wake up with morning wood so idk. I've also added beta-carotene and seen benefits from that. It was something I've tried in the past but never stuck with
What benefits have you seen in regards to Beta-carotene ? Effects on the skin?
skin is naturally exfoliating better, but there's also sexual benefits including the return of erections without manual stimulation.
Sorry for the interruption but. . . Can anyone comment on SAM-e? I talked to a fellow post-Accutane sufferer and found we were helped by similar substances, but one supplement he responded well to that I hadn't tried (at the time) was SAM-e. I'm 5 days in and feeling some tingles in my brain (figuratively?). This sensation is similar to what I felt on NSI-189, which I responded to significantly well. I have read literally one horror story about SAM-e causing sexual dysfunction, but there were some confounding variables there (occurred after quitting, prior SSRI exposure). Studies say SAM-e can not only lift depression as well as anything else out there, but it can help sex drive. No honest study conducted on SSRIs would claim the latter. One possible side effect of SAM-e is gastrointestinal distress, which can likely be mitigated by injecting it. (Doing so would also save money.) To be clear, it's not an SSRI. The "Biochemistry" section of the first link explains exactly what SAM-e does. I suppose I am interested because it assists in so many reactions in the brain and liver. SAM-e doesn't have research out there to support potentially long-term negative consequences and there aren't forums full of people claiming it ruined their lives (which is always a good start, haha). There's just one, pesky anecdote. Can anyone else chime in for better or worse?
I think only good can come from discussing non-SSRI options that help those of us dealing with psychiatric problems. Right now I'm taking Agmatine, Tianeptine, Acetyl-l-Carnitine, SAM-e, Pregnenolone, B12, Folate, D3, Magnesium, Fish Oil (high EPA), and Caffeine (4 days per week). Feeling okay most days, but there's definitely some harsh swings in the mix.