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Repairing the long-term damage from Accutane

 
MemberMember
1803
(@guitarman01)

Posted : 05/11/2017 1:09 pm

40 minutes ago, mariovitali said:
@guitarman01@tanedout

OK now look at this girl that commented on the post about this Research. I have asked her whether she took anything prior getting CFS. She said no. Then she read the post and remembered that she had taken Accutane!

For some reason i am not able to upload the snapshot

That's funny actually I just saw it earlier. This forum glitches out sometimes. So looking at this machine learning method, are there actual direct gene mutations that could indicate issues with vitamin k processes , or is this looking at other gene mutations that more indirectly could be dependant on vitamin k?

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MemberMember
158
(@accuity_drane)

Posted : 05/11/2017 1:51 pm

On 5/10/2017 at 4:26 AM, hatetane said:

Anyone can send their story/journey/history with any relevant research documents to the accutane review that is coming up in June.
ACTION IS NEEDED AND WE HAVE AN OPPORTUNITY HERE.

You are absolutely right. Here is what I sent. Feel free to steal it completely for emailing purposes, edit it down, make changes, or send it to other authority figures or researchers. Alternatively, do it better than me and write your own email with much more emotional appeal:
 

To whom it may concern:
 

It is my understanding that a review will soon be taking place regarding the safety of the pharmaceutical drug Accutane. As a resident of the U.S. who was personally negatively affected by the drug (among many), I would like to provide research and facts to your committee so that this issue can be discussed in the most intelligent way possible.
 

Accutane's Relationship to Psychiatric Issues:
 

- Taking into account FDA's list of top 10 drugs associated with depression, Accutane is the only non-psychoactive drug on that list.

- From 1989 to 2003, Keith Altman, Adverse Drug Reaction Statistics Analyst, found that more patient suicides were associated with Accutane than Prozac. This is an interesting finding since Prozac is a drug given to actual depressed patients.
 

- One study found that 37% of dermatologists believe Accutane can cause psychiatric issues in patients.
 

- Eight years after approval, the FDA actively considered removing Accutane from the market due to its ability to cause birth defect, as well as evidence that it causes psychiatric problems in some. Source: United States Congress House of Representatives Committee on Government Reform

Pharmacological Effects of Accutane:
 

- Patients taking Accutane were found to have decreased bloodflow in the orbitofrontal cortex, a region of the brain implicated in depression.
 

- Patients taking Accutane were found to have increased levels of homocysteine, which is associated with things like aggression and depression.
 

- The Norwegian Medicines Agency has documented lasting neurological symptoms in patients who have taken Accutane. Testing of the brain revealed organic brain damage and reduced blood flow to the frontal lobes.

- In mice, administration of Accutane is may be associated with cellular loss in the hippocampus of the brain. The hippocampus is associated with learning, memory, and depression.
 

- Another study in mice found that Accutane disrupted the ability for mice to learn a spatial radial maze.
 

Lastly on the topic of psychiatric health, I would like to point out that Accutane was originally used as a chemotherapy drug. Clear skin was simply noted as a side effect of the original purpose (cancer-killing). Like any other chemotherapy drug, Accutane's effects are not specific to one region of the body. The following quote explains how Accutane does not only target skin glands. It targets many other systems in the body. :

"We have to appreciate that isotretinoin does not œexclusively targets apoptosis of the sebaceous glands as proapoptotic drug effects have been observed in several unrelated cell systems and explain all adverse effects of isotretinoin and other retinoids. . . . strongly suggests that isotretinoin and its isomerization product ATRA induces upregulation of FoxO-signaling and exerts apoptotic effects in multiple cell types like the muscle, the bone and the brain."
 

Sexual Side Effects:
 

Briefly, allow me to shift to the topic of sexual side effects. Health Canada recently issued a statement stating Accutane may be associated with sexual dysfunction in some. This is supported by patient reports, and some studies noting a decrease in a number of pituitary hormones in patients taking Accutane. It seems other health regulatory agencies have been slower to acknowledge this devastating effect. This is similar to what happened in 1997 when France added a warning that Accutane may be associated with suicide, and other regulatory agencies were unaware until some time later. I would be saddened to see a similar information gap occur between countries for the issue of sexual side effects.
 

My Broader Reason for this Letter:
 

I convey all of this information because the issues of psychiatric and sexual health are very personal. In the case of sexual health, it appears many regulatory agencies have failed to warn patients at all of Accutane's potential to cause issues. In the case of psychiatric health, many warnings exist. However, that does not change the fact that many patients are left suffering after quitting the drug. The FDA does acknowledge that quitting the drug after incurring psychiatric issues may not be enough to resolve the issues, based on previous post-marketing research. This is serious because Accutane is often prescribed for acne that is moderate rather than severe. Going forward, as a private citizen of the U.S., I suggest one of two things: 1) Increased regulation on how and when this drug is prescribed. Perhaps it should only be used for severe nodular acne, as originally intended when it was marketed for acne. 2) Increased research into the pharmacological effects of Accutane so that we can understand how and how some people develop persistent problems. In the past, UK MCA and FDA MedWatch estimated that only 10-15% of serious adverse drug reactions are ever reported. This is why it is important to act whenever there is a hint of a problem, especially when it involves the health of people.
 

Thank you for reading. All the best.

cleardot.gif

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Here is the list of contacts hatetane sent me to email:

[removed]

We can't make this any easier. Act.

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Nicholas Ross, Dubya_B, guitarman01 and 6 people reacted
MemberMember
37
(@mariovitali)

Posted : 05/11/2017 2:18 pm

@guitarman01

Well, they banned me from the group. Unbelievable.

Here is the post :

Screen Shot 2017-05-11 at 20.16.20.png

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MemberMember
37
(@mariovitali)

Posted : 05/11/2017 3:30 pm

Hmm it appears that MK-7 is a 5AR inhibitor. So probably better is MK-4

[Edited link out]

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MemberMember
1803
(@guitarman01)

Posted : 05/11/2017 6:53 pm

For anyone that was still curious about this I did get the results back of my full thyroid panel. All well within good ranges, so for me at least, Im going to put this to bed.

access_(3) (1)-page-001.jpg

 

5 hours ago, ACCUiTy_drANE said:

We can't make this any easier. Act.

I have reported my sides to the fda and roche. 

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MemberMember
1803
(@guitarman01)

Posted : 05/11/2017 8:33 pm

On 5/12/2017 at 4:30 AM, mariovitali said:

Hmm it appears that MK-7 is a 5AR inhibitor. So probably better is MK-4

[Edited link out]

Well this might contradict that.

These areMK4andMK7.MK4used in dietary supplements is created through chemical synthesis.MK7is produced by bacterial fermentation of soy, appears to have a longer half life thenMK4, and can also decrease serum ucOC.

ive looked into mk4 vs mk7 in the past, mk7 has alot longer half life and circulates in the blood longer. but maybe there could still be a argument for mk4? maybe mk4 could be overall safer? but there could be different effects even between mk4 and mk7.

MK4 versus MK7 for Bone Health - NBI Health

www.nbihealth.com/t-mk7-hip-fractures.aspx

Serum undercarboxylated osteocalcin as biomarker of vitamin K2intake and risk of prostate cancer: a nested case-control study in the Heidelberg cohort of the European prospective investigation into cancer and nutrition.

https://www.ncbi.nlm.nih.gov/pubmed/19124480

I wouldnt worry much about a 5ar inhibitor effect. I have taken mk7 in the past.it actually seemed to have the opposite effect. im a little concerned about the unknowns of such a new type of supplement.(this prob pertains mostly to mk7) for instance the bacteria they use to ferment one of the leading brands of mk7( menaq7) some comes from natto some comes from another questionable bacterial source. Menaquinones can interact in alot of different ways in the body. For instance not to just look at the positives and ignore the negatives, ive seen studies menaquinones can worsen copper toxicity, Ive seen they can strengthen relatively dormant infections. Too much can maybe have a negative effect on bone. Everything seems to have a purpose both good and bad, or too little, too much.

Whats the mechanism for deficiency? I believe gut bacteria and conversion from k1 are the only sources of k2, because nobody is eating natto.
Looking at gut bacteria e.coli produces k2 i believe. e.coli takes up a relatively small populationwhen it comes to overall good bacteria in the gut.
Both accutane and fin have been shown to modify gut bacteria.

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MemberMember
0
(@abi72)

Posted : 05/12/2017 4:09 pm

view.I

6 hours ago, guitarman01 said:

For anyone that was still curious about this I did get the results back of my full thyroid panel. All well within good ranges, so for me at least, Im going to put this to bed.

access_(3) (1)-page-001.jpg

 

I have reported my sides to the fda and roche. 

Appreciate this but they are not doing a review n June. You have done so much research and an email from you would greatly help our cause.
We all need to report to all agencies as they clearly don't interact with each other.

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MemberMember
1803
(@guitarman01)

Posted : 05/12/2017 5:50 pm

1 hour ago, hatetane said:

Appreciate this but they are not doing a review n June. You have done so much research and an email from you would greatly help our cause.
We all need to report to all agencies as they clearly don't interact with each other.

I have some other things going on right now, im really sorry but i dont have the time or patience atm to send 70 emails. Not to discourage anyone else, it is easy enough to copy and paste, thankyou Accuity. If I end up finding something more out related to accutane, I plan on doing alot more then sending emails.

On 5/11/2017 at 2:12 AM, mariovitali said:

Regarding Choline / TUDCA / TMG 

I have taken them all : I was symptom-free when taking Choline/TUDCA but then something happened that basically told me that i have to further look for the root of the problem. My appetite was diminishing month by month. At some point i was not able to eat even a small bite of food. This was a clear sign that the solution was elsewhere. Of course i have sent numerous emails to researchers asking for help. No luck, so i had to continue looking myself.

I am not sure how exactly Choline helps, if i recall well it helps in proper protein folding within the ER. Note also that one of the nodes in the Network Analysis chart is "Choline deficiency"

Did you ever just try quitting the TUDCA and sticking with Choline only? I read a study indicating Choline might  possibly become depleted in the liver from Accutane. I also read about choline deficiency relating to muscle weakness/contractions. There might be something abnormal going on with digestion thats causing the stomach to overcompensate by producing excess stomach acid.

File:Cholin-PET MIP.ogv
Maximum intensity projection of a PET/CT with choline: Note the physiologic accumulation in the liver, pancreas, kidney, bladder, spleen, bone marrow and salivary glands. 

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MemberMember
0
(@abi72)

Posted : 05/12/2017 6:39 pm

39 minutes ago, guitarman01 said:
I have some other things going on right now, im really sorry but i dont have the time or patience atm to send 70 emails. Not to discourage anyone else, it is easy enough to copy and paste, thankyou Accuity. If I end up finding something more out related to accutane, I plan on doing alot more then sending emails. Did you ever just try quitting the TUDCA and sticking with Choline only? I read a study indicating Choline might  possibly become depleted in the liver from Accutane. I also read about choline deficiency relating to muscle weakness/contractions. There might be something abnormal going on with digestion thats causing the stomach to overcompensate by producing excess stomach acid.

File:Cholin-PET MIP.ogv
Maximum intensity projection of a PET/CT with choline: Note the physiologic accumulation in the liver, pancreas, kidney, bladder, spleen, bone marrow and salivary glands. 

Not 70 emails - 1 email to a group. I have done all the hard work in accumulating these emails addresses.
You have plenty of time to post on this forum though haven't you - what exactly have you achieved?
While your pondering, two more boys just took their lives!
http://www.itv.com/news/anglia/2017-05-09/parents-whose-sons-took-their-own-lives-warn-of-dangers-of-acne-drug/
Like it or not - the truth is that anyone who does not report their side effects has played a role in allowing this to happen.

 

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MemberMember
1803
(@guitarman01)

Posted : 05/12/2017 6:49 pm

10 minutes ago, hatetane said:

Not 70 emails - 1 email to a group

yea sorry guess i didnt even think of that. I dont do alot of emailing. Ok when I get a chance in the near future I will send something.

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MemberMember
1803
(@guitarman01)

Posted : 05/12/2017 10:19 pm

The role of dietary choline in the beneficial effects of lecithin on the ...

by MJ LeBlanc - 1998 - Cited by 23- Related articles

Aug 28, 1998 -In addition, a lecithin diet enhancesbilesecretion and preventsbileacid-induced cholestasis. This study evaluated the contribution ofcholine,...

New Research Shows Choline is Important to Eye Development and ...

www.prnewswire.com/.../new-research-shows-choline-is-important-to-eye-developme...

Jul 8, 2015 -The mechanism wherebycholinesupports eye development andvisionis similar to how it supports brain development and the capacity of the...

Is ageing a risk factor for canine periodontal disease? The effect of ...

Furthermore, if this hypothesis is proved correct then it offers the possibility thatcholinedietary supplementation may help protect fromcanine periodontal...

The Form of Choline in the Maternal Diet Affects Immune Development ...

by ED Lewis - 2016 - Cited by 4- Related articles

Mar 2, 2016 -OBJECTIVE: We sought to compare the effects of PC and freecholinein the maternal diet on the development of the offspring'simmune system...

Wilson Disease: Epigenetic effects of choline supplementation on ...

by V Medici - 2016 - Cited by 2- Related articles

Sep 9, 2016 -Wilson Disease: Epigenetic effects ofcholinesupplementation on phenotype and clinical course in a mouse model. Medici V(1), Kieffer DA(1),...

Choline | Linus Pauling Institute | Oregon State University

lpi.oregonstate.edu/mic/other-nutrients/choline

(More information);Cholinedeficiency causesmuscle damageand abnormal deposition of fat in the liver, which results in a condition called nonalcoholic fatty...

Phospholipid Composition of Liver in Rats Fed High Levels of 13-Cis Retinoic Acid

BS Alam et al.Lipids 18 (2), 142-145.2 1983.more

Abstract

The composition of liver phospholipids was studied in rats fed for 4 weeks diets containing 0, 100 or 300 mg 13-cis retinoic acid per kg diet. There was a significant decrease in phosphatidylcholine content

^this could be your methyl donor loss from this study

Vitamin A and Its Derivatives Induce Hepatic GlycineN-Methyltransferase and Hypomethylation of DNA in Rats1

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MemberMember
158
(@accuity_drane)

Posted : 05/12/2017 11:08 pm

4 hours ago, guitarman01 said:
4 hours ago, hatetane said:

Not 70 emails - 1 email to a group

yea sorry guess i didnt even think of that. I dont do alot of emailing. Ok when I get a chance in the near future I will send something.

I sincerely appreciate it. Feel free to share what you send and pass it on like a virus. A virus that will hopefully infect the right people in power to cause a splash one way or the other. Once one regulatory agency does something, generally it has a (slow) domino effect on others. Whatever the efficacy of their actions (ineffective or not), it will keep Accutane in the news and hopefully inspire more research.

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MemberMember
45
(@cnb30)

Posted : 05/14/2017 12:14 am

On 5/2/2017 at 5:34 PM, macleod said:
LDN is up there on the to do list. It's worth a shot. A big shot. Try it. When I did mention it to my doctor he said, "yea another guy with 100 problems came in here asking for that, and now with his Placebo LDN, he's doing a lot better." So, you may want to source your own. And be skeptical, because I suppose selling placebo's could be a possibility. If there is such a chemical try your best to get the real thing.

Also, Zinc like the person was mentioning on here for your depression. Proper nutrition and exercise. Any antioxidant you can get your hands on (I eat every fruit imaginable daily). Vitamin C (1,000 - 2,000mg a day) & D (500mg). Get plenty of sunlight. Experiment with Vitamin A (10,000iu) to see if your retinoid receptors are lacking and need to be leveled out or if they are fried and you need to stay away.

I think if you want to see big neurological improvements you're gonna want to try hyperbaric o2 therapy. Hard to convince a doctor to recommend this, if you have subjective neurological issues, they'll just want to refer you to a psychiatrist that'll just want to prescribe you drugs. So, just build your own chamber, it's not difficult if you get the right mechanical or engineering guy. Two 55 gallon drums, weld them together, cut out a window, screw in some pressure valves, buy an air compressor, get your hands on medical grade o2 tank and mask, then you're set.

You'll also want to try EEG biofeedback/neurofeedback. This is a new type of treatment, it's not covered by insurance companies, so you'll have to pay out of pocket.

It's tough man, if you really want to see change you're gonna have to get your hands on a decent amount of money and do it all yourself. It's like building an airplane from scratch, and 5% of the people will be able and willing to help you.

Im honestly back to feeling like giving up again. Anyway, if my doctor was as sarcasticly rude and dismissive about this as yours, I probably would've lashed out at him. Luckily I have a doctor who takes this seriously (and has taken this much more seriously since i was able to find some credible studies to give him)

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MemberMember
46
(@vanceastro)

Posted : 05/14/2017 5:53 am

Did anyone managed to fix the digestive side effects of Isotretinoin?(i.e. loose stools, fat & fructose malabsorbtion, very loud stomach gurgling etc.) ?

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MemberMember
45
(@cnb30)

Posted : 05/14/2017 11:35 am

5 hours ago, VanceAstro said:

Did anyone managed to fix the digestive side effects of Isotretinoin?(i.e. loose stools, fat & fructose malabsorbtion, very loud stomach gurgling etc.) ?

I was able to lessen them after fasting for a couple days.

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MemberMember
45
(@cnb30)

Posted : 05/14/2017 11:37 am

https://www.nytimes.com/2017/05/10/health/brain-defect-gut-bacteria-microbiome.html?smid=tw-nytimes&smtyp=cur

While this isn't likely anywhere near what we have, it's kinda optimistic to see scientists realizing the connection between mental health, and the gut, something a lot of us deal with.

Also, can someone send the link to the EU thing on accutane again. I hadn't realized it wasn't just for European citizens.

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MemberMember
1803
(@guitarman01)

Posted : 05/14/2017 12:29 pm

6 hours ago, VanceAstro said:

Did anyone managed to fix the digestive side effects of Isotretinoin?(i.e. loose stools, fat & fructose malabsorbtion, very loud stomach gurgling etc.) ?

Chlorogenics. im looking at this atm. accutane is also capable of damaging saliva glands. This can also affect certain parts of the brain. Choline is responsible for neurotransmission. Choline is almost considered a vitamin but they couldnt decide on a deficiency state. I know ive mentioned anticholinergics as a benefit, but this is looking at the other side of the spectrum. Choline seems to be highly concentrated in the saliva glands.

Anticholinergicsblock acetylcholine from binding to its receptors on certain nerve cells. They inhibit parasympathetic nerve impulses. ... Blocking acetylcholine signals can decrease involuntary movement, digestion, and mucus secretion. If you take ananticholinergic, you may retain urine and experiencedry mouth.Oct 10, 2016

All About Anticholinergics - Healthline

www.healthline.com/health/anticholinergics

alot of people dont sweat in the face anymore. Maybe damaged sweat glands. Too much choline can lead to excess sweating and increased saliva.
Last time I was at the dentist one thing he noticed was that my saliva was really thick and my saliva glands seemed to be inflamed.

So choline could maybe be of benefit.

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MemberMember
32
(@dandytsunami)

Posted : 05/14/2017 12:37 pm

jeesuz this forum page really scared me i guess im not going on accutane :( unless u guys did high doses of accutane? My dermatologist prescribed me low dose of 30mg will it be fine?

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MemberMember
75
(@colinboko)

Posted : 05/14/2017 1:51 pm

1 hour ago, DandyTsunami said:

jeesuz this forum page really scared me i guess im not going on accutane :( unless u guys did high doses of accutane? My dermatologist prescribed me low dose of 30mg will it be fine?

I was on 30 mg for a month.. 

1 hour ago, guitarman01 said:
Chlorogenics. im looking at this atm. accutane is also capable of damaging saliva glands. This can also affect  certain parts of the brain. Choline is responsible for neurotransmission. Choline is almost considered a vitamin but they couldnt decide on a deficiency state. I know ive mentioned anticholinergics as a benefit, but this is looking at the other side of the spectrum. Choline seems to be highly concentrated in the saliva glands.
 

Anticholinergics block acetylcholine from binding to its receptors on certain nerve cells. They inhibit parasympathetic nerve impulses. ... Blocking acetylcholine signals can decrease involuntary movement, digestion, and mucus secretion. If you take an anticholinergic, you may retain urine and experience dry mouth.Oct 10, 2016

All About Anticholinergics - Healthline

www.healthline.com/health/anticholinergics

 

alot of people dont sweat in the face anymore. Maybe damaged sweat glands. Too much choline can lead to excess sweating and increased saliva.
Last time I was at the dentist one thing he noticed was that my saliva was really thick and my saliva glands seemed to be inflamed.

So choline could maybe be of benefit. 

I sweat A LOT around my hair line and then my back sweats more than ever before... actually to be honest I don't have a problem at all with not sweating. 

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MemberMember
1803
(@guitarman01)

Posted : 05/14/2017 2:05 pm

11 minutes ago, Colinboko said:
I was on 30 mg for a month.. I sweat A LOT around my hair line and then my back sweats more than ever before... actually to be honest I don't have a problem at all with not sweating.

I believe I sweated excessively shortly after accutane treatment. Then after awhile the opposite started to happen. What I noticed most is I dont sweat from my facial pores any more, this could go hand in hand with the facial flushing alot of people experience post tane.

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MemberMember
9
(@washer)

Posted : 05/14/2017 3:27 pm

9 hours ago, VanceAstro said:

Did anyone managed to fix the digestive side effects of Isotretinoin? (i.e. loose stools, fat & fructose malabsorbtion, very loud stomach gurgling etc.) ?

You need to give LDN or Iodine a shot most definitely.

2 hours ago, DandyTsunami said:

jeesuz this forum page really scared me i guess im not going on accutane :( unless u guys did high doses of accutane? My dermatologist prescribed me low dose of 30mg will it be fine?

STAY AWAY, STAY AWAY. Accutane has ruined so many peoples life - you simply can't risk taking it!

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Nicholas Ross, exitrade, Chris16 and 6 people reacted
MemberMember
1804
(@truejustice)

Posted : 05/14/2017 4:42 pm

1 hour ago, Washer said:
You need to give LDN or Iodine a shot mostdefinitely. STAY AWAY, STAY AWAY. Accutane has ruined so many peoples life - you simply can't risk taking it!

Yep I think it's time to try LDN. There's no supplement that's doing anything significant so time to hit something harder I'd say.

Our immune systems are fucked from our gut health being destroyed. It says LDN is used by Aids and Cancer patients amongst other conditions - I guess we tane victims need to also join the group.

Maybe in the future when someone googles LDN it'll say used by Accutane Victims....

Ahh the joy of it all....,,

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MemberMember
9
(@chris16)

Posted : 05/14/2017 4:52 pm

I agree Iodine and LDN are very powerful to heal us. Make sure if you're taking iodine that you take the co factors. I'm up to 20 mg and starting to see results.

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MemberMember
1804
(@truejustice)

Posted : 05/14/2017 5:33 pm

Are you taking the co factors indivualy or are you taking a co factor multi pack which I've just discovered you can buy??

The Iodine itself I have liquid drops.

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MemberMember
9
(@chris16)

Posted : 05/14/2017 6:50 pm

I take the co- factors individually. I take the lugols crow iodine. I know Washer takes the same.

What kind ofiodine do you have?

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