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Repairing the long-term damage from Accutane

 
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1803
(@guitarman01)

Posted : 11/03/2018 1:17 pm

replace the term "leaky gut" with "intestinal permeability" and you'll find a lot of credible information on the subject.
you see alot of this is very recent information.

Leaky Gut As a Danger Signal for Autoimmune Diseases - NCBI - NIH
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5440529/
by Q Mu - 2017 - Cited by 46- Related articles

May 23, 2017 -Numerous factors can affectgut permeability, such as various ... focus on their association with extraintestinalautoimmune diseases, such as...

by MC Smyth - 2017 - Cited by 1- Related articles

Nov 28, 2017 -The inducer ofautoimmuneresponses related to thegutis most likely to be microbiota dysbiosis leading to increasedintestinal permeability. ... The microbiota offers protection by repressing pathogenic growth and prevention against allergy anddiseaseby regulating the immune system (Guarner and Malagelada, 2003).

by IFM Join - Related articles

Theautoimmuneprocess shuts off, and, consequently, theintestinaldamage heals completely. ... Besides celiacdisease, several otherautoimmune diseases, including type 1 diabetes, multiple sclerosis, and rheumatoid arthritis, are characterized by increasedintestinal permeability.

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1804
(@truejustice)

Posted : 11/03/2018 9:40 pm

Do you think the fat absorption issue many of us have post tane is more due to gut health, liver/gallbladder related or Vit A issues??

Id love to know the origin of this problem

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46
(@vanceastro)

Posted : 11/04/2018 4:52 pm

19 hours ago, TrueJustice said:

Do you think the fat absorption issue many of us have post tane is more due to gut health, liver/gallbladder related or Vit A issues??

Id love to know the origin of this problem

Good question. I also suffer from fat malabsorbtion post accutane (for more than 8 years now...) and I have tried every available probiotic & L-Glutaminewith zero results.

Studies like this oneconfuse me even more...(i.e. "Isotretinoinhad no significant effect on the faecal microbiota").

One thing that I noticed- while checking lab tests during my treatment - was increased bilirubin level...so maybe you are right by saying that Accutane can cause (permanent?) damage to liver, gallbladder & the whole biliary system.

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1803
(@guitarman01)

Posted : 11/05/2018 7:24 pm

you can find much conflicting information on Accutane's effect on microbes.

"high levels of antibiotic-resistantP. acneswere recorded in each patients skin microbiota before, during and after treatment. In this study, microbial composition of the skin appears substantially altered by isotretinoin treatment, which clearly has differential antimicrobial effects on each anatomically distinct site. Our study confirmed that orally administered isotretinoin shows good efficacy in the resolution of moderate to severe acne that correlates with reductions in the number ofP. acneson the skin, including resistant isolates"
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5524737/

The effects of systemic isotretinoin and antibiotic therapy on the microbial floras in patients with acne vulgaris.
https://www.ncbi.nlm.nih.gov/pubmed/22239608

Systemic isotretinoin and antibiotic treatments in acne patients precisely caused variations in the microbial floras of several sites of the body, while isotretinoin was commonly more responsible than antibiotics.

So Accutane was maybe more effective as an antimicrobialthen antibiotics themselves.

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1804
(@truejustice)

Posted : 11/05/2018 8:47 pm

Im currently working on fixing HPA Axis with Kinesiologist

I knew all these things seperately but didnt know there was a term for it.

Goes a long way to explaining everything from a rough sleep to chronic fatigue to parasite issues etc etc

Dont know if its been talked about before on here but this is what we are trying to repair right now!!

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0
(@chetty23)

Posted : 11/06/2018 12:45 am

Hello guys..... I also took accutane recently and have severe depression and sexual problems...its really stressing me out.

@truejustice
thats a good idea sorting out your HPA axis....Research shows that mifepristone can normalize that which was caused by retanoic acid.

https://www.nature.com/articles/tp201398

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0
(@gatu77777)

Posted : 11/06/2018 10:46 am

I'm going to try a paleo diet and supplement with ox bile, vitamin c, d and zinc.
I'm also going to start working out.

Has anyone tried this before?
Also I don't think vitamin a is the problem. Its definitely diet.
And Is anyone suffering from constipation?

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6
(@moretwine)

Posted : 11/06/2018 10:28 pm

Hi Everyone,

Just wondering if there are any tane users in Brisbane, Australia who want to have a chat about the side effects? I feel like I'm on my own here. Would be nice to share experiences with some people.

MT

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19
(@justdry)

Posted : 11/07/2018 3:59 am

update on beta carotene.

No adverse effects - feel like my anxiety is getting a bit better, less jaw clenching.

However, i've started getting regular whiteheads around my mouth and my chin area which i haven't had in years. Don't know why that would be =/ My skin is still really red and dry.

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2
(@niedlaizo)

Posted : 11/07/2018 7:01 am

Hey guys,
I was taking isotretinoin for almost 2 months (20mg / day) and I started to feel severe pain in my legs muscles and joints. I stopped taking the pills but unfortunetaly the pain does not want to quit. What can I do?

I assume there is an answer somewhere in this topic but 650 pages is a huge wall to find interesting information in certain case.

Any advice?

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MemberMember
1803
(@guitarman01)

Posted : 11/07/2018 8:03 pm

So now they are looking at this with parkinson's and MS.
https://www.nature.com/articles/s41531-016-0002-0

The state of the intestinal environment can have profound effects on the activity of the central nervous system through the physiological contributions of the microbiota, regulation of intestinal barrier function, and altered activity of peripheral neurons. The common language employed for much of the gut-brain communication is the modulation of immune activity. Chronic proinflammatory immune activity is increasingly being recognized as a fundamental element of neurodegenerative disorders, and in Parkinsons disease, inflammation in the intestine appears particularly relevant in pathogenesis.

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0
(@accunate)

Posted : 11/08/2018 7:36 am

On 2018/11/7 at 1:01 PM, niedlaizo said:

Hey guys,
I was taking isotretinoin for almost 2 months (20mg / day) and I started to feel severe pain in my legs muscles and joints. I stopped taking the pills but unfortunetaly the pain does not want to quit. What can I do?

I assume there is an answer somewhere in this topic but 650 pages is a huge wall to find interesting information in certain case.

Any advice?

There's no answer, we're all screwed.
Some more or less, depending on their dosage, where they are located - easier to get testing or help from certain practitioners.
Best you can do is to report these side effects to your doctor, as they seem pretty concering. When it comes to pain, all I had was some stomach upset and stomachache.
Also, widze ze rodak. We have even worse in our country, because getting anything more than standard morphology blood test , is hard to get, so good luck with that.

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19
(@justdry)

Posted : 11/09/2018 4:56 am

21 hours ago, AccuNate said:
There's no answer, we're all screwed.
Some more or less, depending on their dosage, where they are located - easier to get testing or help from certain practitioners.
Best you can do is to report these side effects to your doctor, as they seem pretty concering. When it comes to pain, all I had was some stomach upset and stomachache.
Also, widze ze rodak. We have even worse in our country, because getting anything more than standard morphology blood test , is hard to get, so good luck with that.

Way to make someone despair !

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359
(@dubya_b)

Posted : 11/09/2018 12:09 pm

A citizens petition to the FDA to add warnings of sexual side effects to the Accutane/Isotretinoin label was recently submitted by Data Based Medicine Americas (RxISK).

https://rxisk.org/petition-about-isotretinoin-sexual-side-effects/

A copy of the petition (containing supportive data from adverse event reporting) can be found here:

rxisk.org

Bottom line; Accutane was associated with more reports from children experiencing sexual side effects than any other drug!

Supportive comments can be posted anonymously here: https://www.regulations.gov/docket?D=FDA-2018-P-4088

If you suffer persistent side effects from Accutane, there is absolutely no excuse for not commenting.

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2
(@niedlaizo)

Posted : 11/10/2018 2:02 pm

On 11/8/2018 at 1:36 PM, AccuNate said:
There's no answer, we're all screwed.
Some more or less, depending on their dosage, where they are located - easier to get testing or help from certain practitioners.
Best you can do is to report these side effects to your doctor, as they seem pretty concering. When it comes to pain, all I had was some stomach upset and stomachache.
Also, widze ze rodak. We have even worse in our country, because getting anything more than standard morphology blood test , is hard to get, so good luck with that.

I already told my doctor about these certain side effects but all she said to me was that I just need to wait and be patient because in her opinion it will disappear.

For me it is kind of bullshit because I read about similar side effects and almost everyone said that it will not disappear at all and they are trying to figure it out for years after taking the isotretinoin. But I do not give up. In my case it is pretty serious. I can hardly walk. From time to time, when I have a pain attack I just need to find a wall or something to catch bescuse in other way I would fell down. It is really hard to describe. I have never had something similar in my life.

Also, rodaku, maybe it is because I am fighting with every doctor and I am not polite at all, I got a lot of tests to do. But unfortunately (or fortunately) everything is fine. Results of muscles, bones and joints tests are just perfect. Not even good, just perfect. There are some tests to do ahead of me yet but now doctors just do not know what need to be fixed. So I always ask them if they think that I am faking...

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1804
(@truejustice)

Posted : 11/10/2018 5:23 pm

On 07/11/2018 at 11:01 PM, niedlaizo said:

Hey guys,
I was taking isotretinoin for almost 2 months (20mg / day) and I started to feel severe pain in my legs muscles and joints. I stopped taking the pills but unfortunetaly the pain does not want to quit. What can I do?

I assume there is an answer somewhere in this topic but 650 pages is a huge wall to find interesting information in certain case.

Any advice?

Youll need to see everyone from a GP to specialists but from my experience youll get more answers from seeing someone in alternative medicine.

Go to GP for blood tests, take your pick on what you want tested - Ill hazard a guess and say they wont find anything but you might want to start gathering info anyway just to be sure.

Regardless, you need to prepare yourself that youll still have issues 20 years from now - time alone will not heal you!!

Im getting relief and making progress in recent times by working with a kinesiologist, not cured but in a much better place mentally & physically. Currently working on fixing HPA Axis, he is astounded that I was never tested on bacteria in my gut when seeing a Gastroenterologist and I am too.
Dont ever think that when you see a specialist theyll have the answers - mostly they wont. They are looking for stuff that is sinister and if they dont find it theyll move you on - thats how the system works and for the most part I get it, they are looking for cancer and theyll act on that but if you have bacteria issues its up to you to work it out.

So yeah, it took a kinesiologist to diagnose a bacteria issue, not a Gastroenterologist!!!

My point is, yes seek help from GP and specialist, gather info and learn as you go but DO NOT rely on them completely, youll be disappointed- try and understand its your health and you need to be in charge of it.

Also, do not wait for Roche or any pharmaceutical company to take responsibility- it is not happening and never will, understand youve been fucked over and that compensation if highly unlikely at this stage.

Yes comment on action sites and tell people your story as it will prevent others suffering the same bullshit but dont pin your hopes on someone working on a miraculous cure - its not happening.

Be strong and adapt as best you can - best of luck!!

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0
(@gatu77777)

Posted : 11/12/2018 9:19 am

Guys I'm seeing some improvement on the paleo diet but the dizziness just won't stop and I'm losing weight.
Neurologist booked me for an mri. He said something about my nervous system being disrupted but he needs to do tests to be sure.
He said that gluten sensitivity could be a factor.
Is there any way to stop the dizziness???

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1803
(@guitarman01)

Posted : 11/12/2018 6:24 pm

couple things. The fact that during the most critical part of life, the infant gut is absolutely dominated by bifidobacteria (90+ percent) might say something. This bacteria declines with age, diet, drug intervention.

it could be a matter of right dosage, strain, growth factors, and knocking down competitive pathogens, without harming the probiotic.

Also looking at peptides from milk, wheat and sugar that bifido might prefer over competitive pathogens that could release toxins that could affect mental health and inflammation.
Funny how kids can handle sugar but it becomes a detriment later on in life.

Interaction Between Bifidobacterium and Medical Drugs | SpringerLink

Reversal of ciprofloxacin-induced testosterone reduction by probiotic microbes in mouse testes

https://www.fasebj.org/doi/abs/10.1096/fasebj.31.1_supplement.696.2

by K Tremellen - 2016 - Cited by 13- Related articles

Jun 22, 2016 -Male obesity is associated with late onset hypogonadism, a condition characterised by decreased serumtestosterone, sperm quality plus...

Gut-liver axis and probiotics: Their role in non-alcoholic fatty liver disease
https://www.wjgnet.com/1007-9327/full/v20/i42/15518.htm

The Role of Probiotic Bifidobacteria and Bile Acid Metabolism in Carcinogenesis

http://grantome.com/grant/NIH/U01-CA179582-02

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1804
(@truejustice)

Posted : 11/12/2018 6:42 pm

Ive got H. Pylori bacteria

Apparently it can lead to stomach ulcers amongst other things

Determined by a kinesiologist not a gastroenterologist.....insane!!

Can a real gastroenterologist pls stand up

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4
(@biggest-brother)

Posted : 11/13/2018 4:23 am

H Pylori is usually associated with someone who has the stomach flu. That's pretty insane if you didn't have stomach flu like symptoms. Hope you're doing well True!

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1
(@user2)

Posted : 11/13/2018 3:16 pm

Hello,

I took Accutane over 30 years ago and like many of you, I still suffer from many typical mental and physical long-term side effects from this drug including chronic dry skin, hair loss, itchy scalp, dry and often red eyes, dry lips and mouth, digestion issues, anxiety, low energy, sleep problems, sinus problems, liver issues, joint and spine pain, muscle stiffness and as I believe one member described - being "emotionally flat".I can go on but you already know the list. Some side effects such has head pressure subsided but many persist. I check this forum occasionally in hope that someone post adefinitecure to these side effects or at least something that has significantly help them (long-term). I have seen posts about the possibility of relief from various food sources, vitamin/mineraland amino acid supplements, probiotics, fecal transplants and others. I would like to ask what has provided you the most significant improvement? I have had some better days than others which leads me tobelievewe still can find some level of relief. I would like to share a couple of observations to see if they align with some of yours or if they may lead to new findings.

Many years ago, when working in a lab, my employer purchased a new microscope. We began to test the magnification on different items including our head hair. This was around the time I was losing my hair at a fast rate post Accutane. While everyone elses hair looked perfectly normal and healthywith nice straight shafts running though the length of the hairs; my hair shaft was very jagged and unhealthy. In addition, my hair follicle appeared to be dried up and a fraction of the size of other peoples. This was in direct contrast to when I examined my hair under a home microscope when I was child. For those of you who lost your hair post Accutane and have a very dry/itchy scalp like meand perhaps even those who have not yet lost their hair; have you had an opportunity to view your hair under a microscope and if so, what did you see?

I have tried a liver detox twice. I was sceptical but I must admit I felt somewhat better after the first time. I seemed to have more energy and I noticed the annoying pain that I always had post Accutane, along the top ridge of both sides of my pelvis in my hip area, seemed to let up. However, when these symptoms returned and I tried the detox again, I unfortunatelydid not get the same positive results.

I have tried various multi-vitamin supplements over the years which sometimes lead to short-term improvements but occasionally seem to have resulted in eyelid infections from blocked oil/tear ducts. Perhaps some of the vitamins started to get my skin and eye oils flowing again but since my eye ducts are so dried up, it resulted in the duct getting backed up and later infected. My Optometrists said I have keratoconjunctivitis. I wonder if the lining of all our eye oil/tear ducts and skin oil glandshave been negatively affected in a similar manner as my hair shaft. I would like to view my hair under a microscope again to check the condition of my hair after all these years. In any event, some of these eyelid infections were stubborn and my doctor suggested antibiotics. This brings me to another observation. While taking these antibiotics, I noticed a vast improvement in my digestion and a significant increase in my energy level. There was a return of my general ambitionand I felt more like my pre Accutane days. Perhaps the loss of our protective oil barriers throughout our bodies, including our GI tract, results in various infections and bacteria overgrowth which are taxing on our immune system resulting in chronic fatigue. In addition, I wonder if I was better able to digest and absorb nutrients while on antibiotics, which gave me more energy. I plan to discuss these improvements while on antibiotics with my doctor the next time I see him. Has anyone else had similar experiencewith blocked eye ducts or increases in energy and a general sense of well being while taking antibiotics?

I would like to test my vitamin D levels. I have long suspected thelack of oil in our skin inhibits our ability to convert sun rays intovitamin D and therefore results in adeficiency. Has anyone maintained thecorrect level of vitamin D after Accutane withoutsupplements?

I have started adding hemp hearts to my diet recently and have noticed my lips are less dry. I have only been taking a teaspoon per day and quickly noticed this change. Hemp hearts are very nutritional and high in iron, thiamine, folate, phosphorus and zinc. They are also very high in magnesium and manganese. I decided to try supplementing with some of the vitamins and minerals in hemp hearts to see if I could amplify the results. So far I tried magnesium bisglycinate and B6. However, shortly after supplementing with magnesium, I started to get random bone pains, which would last only a few seconds and then go away (mostly in my legs). In addition, I developed a bone spur in my hand. I cant be sure these things were the direct result of the magnesium but I stopped taking it for now. Maybe I will try it again to test if these same symptoms return. I should mention I have also tried taking calcium supplements in the past. They seemed to help with sleep but my hip joints ached too much and I got calcification of my shoulder tendon so I stopped taking them. I seem to remember reading recently you should take vitamin K with calcium and magnesium as it apparently assists in directing these minerals to where they are needed. If I try them again, perhaps I will add vitamin K to the mix to see if that helps. I would also like to try supplementing with manganese because of all the vitamin and minerals in hemp hearts; manganese is in the highest concentration. I am hopefully one of these hemp heart vitamins or minerals may have larger positive effect whensupplemented. Has anyone tried hemp hearts or any of the vitamins or minerals found in hemp hearts? If so, did you have positive results?

I have also found that chia seeds and truffle oil seems to help with mood. Has anyone found these or any other items helped?

I apologize for the long post but I am glad to finally share some ideas.

All the best...

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183
(@monsterdiesel)

Posted : 11/14/2018 6:59 pm

On 11/6/2018 at 12:45 AM, chetty23 said:

Hello guys..... I also took accutane recently and have severe depression and sexual problems...its really stressing me out.

@truejustice
thats a good idea sorting out your HPA axis....Research shows that mifepristone can normalize that which was caused by retanoic acid.

https://www.nature.com/articles/tp201398

this is really interesting. Is mifepristone safe for men to take?

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MemberMember
1804
(@truejustice)

Posted : 11/14/2018 9:00 pm

The more important question to ask before you entertain taking mifepristone is - can I fix HPA Axis naturally?

When someone says it can fix it, what part can it fix exactly? All 3 areas of HPA??
the hypothalamus, pituitary or adrenals?

Plus as my kinesiologist has pointed out, you have to calm everything else going on first in order to fix HPA - such as inflammation the body is suffering from, calm the nervous system and various reflexes the body has developed from negative situations life has thrown at us.

So as Ive pointed in numerous posts, theres a certain method to follow outside of just chucking another supplement or drug at our problems, only to be disappointed by the outcome yeah....,Id rather follow this approach than just take mifepristone in the hope that it might do something- chances are if you havent done all the other steps it wont work.....happy to be proven wrong though

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10
(@marshl1)

Posted : 11/15/2018 9:56 am

On 10/29/2018 at 11:41 PM, TrueJustice said:

Is someone going to bite the bullet and get a poo transplant???

Thats the ultimate gut healer Ive been told

If that dont work, what hope is there!!!

I have already. Two weeks FMT at the Taymount Clinic in the UK. Didn't improve a thing.

On 11/2/2018 at 11:26 AM, Justdry said:
It's not the vitamin A - it's something else you're getting or doing on that diet - or something that doesn't agree with you when you go back to your normal diet. I can pretty much guarantee that it isn't the vitamin A in food causing the issues.

Many of us, like myself, have gone years without consuming vitamin A and it doesn't change a thing. You more than likely have vitamin A deficiency after accutane, so avoiding it will make things worse in the long run. I don't buy into the long term vitamin A toxicity theory, i think our bodies have a lack of it or don't know how to use it properly after accutane. It's an essential vitamin, we shouldn't stop consuming it.

Right on man, you're on the right track on a vitamin A deplete diet. It takes a long time to deplete your levels though. Cholestyramine can help speed up the process.
Dr Garrett Smith has furthered the work of Grant Generaux and designed a low Vitamin A diet.
Contact his secretary to get the information.
No direspect to anyone here but in light of the work of GG and Dr Smith I really would not supplement with Vitamin A or Beta Carotene that appears to be the worst thing you can do.

Good luck

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6
(@mabbbs)

Posted : 11/15/2018 11:54 am

On 11/10/2018 at 11:02 PM, niedlaizo said:

I already told my doctor about these certain side effects but all she said to me was that I just need to wait and be patient because in her opinion it will disappear.

For me it is kind of bullshit because I read about similar side effects and almost everyone said that it will not disappear at all and they are trying to figure it out for years after taking the isotretinoin. But I do not give up. In my case it is pretty serious. I can hardly walk. From time to time, when I have a pain attack I just need to find a wall or something to catch bescuse in other way I would fell down. It is really hard to describe. I have never had something similar in my life.

Also, rodaku, maybe it is because I am fighting with every doctor and I am not polite at all, I got a lot of tests to do. But unfortunately (or fortunately) everything is fine. Results of muscles, bones and joints tests are just perfect. Not even good, just perfect. There are some tests to do ahead of me yet but now doctors just do not know what need to be fixed. So I always ask them if they think that I am faking...

Omg Im in the exact same situation. Its been four years since I took Accutane, and all test results come back normal, but by the day I get worse. Sometimes I feel like Ill really die. Currently Im clinic shopping, literally going around from one doctor to another trying to figure out whats wrong with me. Please post if you discover any abnormalities from any test you did. Its driving me crazy that everythings coming back normal and I reached the point where I cant walk, sleep, or eat properly.

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