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I have extremely severe sebborheic dermatitis of the face as a result of taking Accutane when i was 17 years old. The seb derm was so bad, that i didn't go out the house for years, it covered the entire length of my face and scalp in thick diffuse plaques similar to psoriasis. I have to use vaseline every night to stop my lips from cracking and bleeding. Likewise I've developed scarring of the face as a result of the skin condition. I'd suffer from very bad joint cracking and hair loss as well. All in all pretty brutal stuff.
Anyway i'm not here to scare people into not taking Accutane, i understand what happened to me was an extremely rare thing, although unfortunate it should not deter people from taking the drug. I am only here to help people suffering from the long term side effects of the drug. I've had this for 8 years now and as you can imagine i've tried everything under the sun to cure it. I'm getting better now, alot better infact and it's down to the things i'll share with you now. Bare in mind everyone is different, what works for one might not work for another, but there are certain things all people suffering from Accutane side effects have in common and can benefit from.
Firstly as i say, all these symptoms are based around retinoic acid (accutane) and it's effect in the body. Retinoic acid cannot be stored in the liver like normal vitamin A. It only works in the skin cells. All these people thinking Accutane is still stored in their livers are wrong, it's not. The reason in my mind why Accutane causes side effects is because it is a glucuronidated drug. Ie as it comes into the body, the liver binds the retinoic acid to glucuronic acid molecule which makes it more water soluble. The only problem is over time these glucurides build up and slow down bile flow, or bile acid transport to be precise. Just like anabolic steroid's Accutane causes a similar Liver toxicity. If your suffering from accutane side effects, check your stools....i know i sounds gross but how dark are your stools? if they are a light brown / clay colour you ain't got enough bile flow, chances are your bile has slowed to a snails pace.
Heres an analogy....imagine a bathtub, now look at the hole in the bottom of the tub, it's filled with clumps of hair, the taps are on full blast, eventually it's going to overflow right?
Well the hole is your bile flow (or lack thereof) and the water is the toxins that you accumulate from living ie processed food, air, shampoos, cleansers, soda's, trans fats.
First port of call is to clean up your diet, eat a high percentage raw food diet, organic fruits, vegetables, lots of green juices, spring water, small amounts of soaked nuts, natural personal care items, throw out your perfumes, cleansers, synthetic chemicals, if it's not natural don't put it in your body or on your body (everything you put on your skin is absorbed into the bloodstream in 15 minutes)
Now if you do have low bile acid transport as a result of Accutane toxicity their are certain things that help.....Firstly if you got very low bile flow you cant digest fat or fat soluble vitamins
1. Virgin Coconut oil - is a MCT, it's a medium chain fat.....which means it doesn't need pancreatic enzymes or bile to be absorbed. Without bile it's almost certain you wont absorb any fat so Coconut oil will be one of the few you can absorb very easily. Coconut cream, young coconuts, coconut meat anything coconut related it fine, as long as it's raw.
2. You wanna avoid eating lots of high retinol foods they'll make you more ill....ie milk, cheese, eggs, liver etc. Retinoic acid is a derivative of vitamin A (retinol), so taking large amounts exasperates hair loss, skin conditions, joint cracking, impotence, chellitis etc.
3. Drinking lots of alcohol is very bad for those with long term accutane side effects as retinoic acid react's with alcohol, especially those with liver problems related to accutane.
3. Organic raw food diet is the best tactic to bring about healing, as it stops the chemical load coming in which takes the strain off the liver, kidneys etc. Plus its just the natural way to live. You can eat some steamed chicked occasionally, but at least 70% of your food should be organic raw food, with some green juices, ginger, lemons etc
Accutane basically shuts down the bile acid transport in people with severe accutane side effects, joint cracking, hair loss, seb derm, psoriasis, impotence. All these side effects are caused by the accutane still being in your body, because once the bile has stopped, how is the retinoic acid going to be removed? it isn't? the bodys going to go into hibernation mode and it'll try and protect the organs by storing the accutane in the fat cells. A lack of bile means a lack of fat absorption hence inability to gain weight.
Thats my two cents.
This one is a great thought. Thank you!
Hi guys, wanted to come forward with some updates.
1. Biotin works very slightly and your body goes back to the same secretion when you stop biotin. I have been taking it for some time at a very high dose: 5000, 1 pill a day, but realised that it alters hormones and can mess with the thyroid so Ive stopped. Im theorising that doing the same overdose as with vitamin A, but with biotin could bring back the secretion for a prolonged time, like a reversal of the effects, but I highly doubt that it wont bring its own side effects and honestly isotrenoin isnt even vitamin A, its a part of it. Vitamin A would be lethal to use in the same way as roccutane.
so in the end Im stopping biotin for now. However I think that some people will benefit from supplementing at least a low dosage, like in a vitamin B complex for example (NOW has a great one). Since vitamin B is essential for neurons system and accutane kind of messes with it.
2. I found it really good to supplement with collagen. Bovine is considered a better source of it. I think that eating gelatin will work great too, you dont even have to dissolve it, just drink a cup of water after a spoon of gelatin powder. But collagen is probably better (however I dont think that you can take it every day of your life)
im taking a collagen+ hyaluronic acid+Q10 coenzyme. It feels great. I dont think that its the work of only the collagen. Its a great combo, would highly recommend for the skin and healing and the energy level.
3. Filter for the shower head. In big cities they add a little bit of chlorine into water and there can be rust there too. Its okay for people with oily enough skin but you better use a filter if you dont live in a rural area. It also is great for eczema.
4. if you have scaly spots on hands or feet (basically spots that you can easily moisturise with the cream) you might look into sulfate free sulfur soap. Kind of makes tissue less breakable but dries just a little. However its good when used once in a while. I cant use it on a scalp since I cant moisturise it enough, but yeah. Also pretty good at removing oil after oil massage and etc. overall could have been used to treat acne and rosacea but thats another topic.
5. Skincare. Here are my faves that really work nicely and dont have bad chemicals in them:
-vegan kombucha essence (has oily texture and was perfect to restore moisture in the face at least a little. The benefit is that it stays in the skin for a few days for me, so I use it in the worst days)
- lanolin (substitute for petroleum jelly or Vaseline. Its way better since its natural. Look up pure or creams and oils based on it depending on needs. Dr. berg recommends mixing it with vitamin E but Im still not there yet.
- mucin cosrx. Im using a cream but anything out of this line supports the hydration and flexibility. And it seems to have a good ingredient list.
- camellia oil with vitamin f. vitamin F in creams is pretty good for scarring and overall healing. I had easily crackable hands during winter and it probably helped a little. Camellia oil is very similar to the sebum in its chemical composition so its easy absorbed and feels very natural on the skin.
6. look up fungi therapy in your area. Treat candida and other bad fungi with other fingi. Its really good if you have gut issues and almost any issues with inflammation. My therapist is also a kinesiologyst and osteopath so he does kinesiologic tests to find out if some fungi affect specific organs. Homeopathy is also linked with it somewhere. A good specialist will suggest you a diet with cutting sugars or gluten or milk or all of it and will prescribe oral or rectal medication. Healing can last for a year even but imo it was what healed my gut since fungi like candida will pierce the gut lining and its really bad when you have issues with repairing tissue like we do after accutane.
7. Oil pulling and hydroxyapatite tooth paste. Dont use harsh mouthwashers and etc.
8. anything with peptides. Peptides of pineal gland. Peptides of thymus. Peptides of cartilage and bones in balms for gums. Looking into liver peptides and thyroid peptides.
9. Castor oil to boost circulation. Can use to boost gallbladder. Do ultrasound check to see if you have it spasmed and the use a patch with castor oil overnight.
10. Drinking bitter things like herbs and coffee and chicory to help with gallbladder and bile flow. Bay leaves. Drinking wormwood.
11. Cocoa to boost stem cells production. Look it up. I prefer 100% chocolate.
12. Energetically programmed audio from YouTube. Yep I love it. Topics like
- boost fat metabolism
- androgen receptors sensitivity - collagen production -
- pituitary gland
- liver
Anything, really. Subliminals too. But energetically programmed and binaural sounds work better for me. But beforehand check what affirmations are used. Sometimes you can stumble upon something that you dont want so skip these audios.
overall thats most of what helped me. I will do updates and hope these help someone! Stay positive guys, forgive yourself for your choices and let yourself heal no matter what.
Hey all,
just want to inform everybody that I will be starting a HCG regimen low dose. PFS sufferers had success stories on it. On the Ray Peat forums you can find it with a google search. My current symptoms are mostly in the memory/neurosteroids department, so I want to fix that with this regimen.
Hello. It is my first time posting in this or any forum related to this issue. I am also a victim of this treatment of accutane. I have visited three different doctors (Im currently working with a different one but no positive results yet).
I was in accutane for 12 months which make me think that Im screwed because some people have commented that it only took a month for them to get all of this symptoms.
My symptoms include: Fatigue, dryness, low libido, I lost my morning woods completely, ED in a 70%, premature ej, weak concentration, brain fog, bad muscle joints, depression, low stamina, new food/drink intolerance. I think what it affected me more was that it destroyed my sexual life.
I got a lot of different blood tests.
I have tried viagra pills, testosterone injections, hcg, tyroid pills, ashgwanda, maca roots, zinc, magnesium, vitamin D3+K2, electrolytes, and none of that worked. Didnt make any effect on me.
Currently, Im trying to restore my colon. I was told by a doctor to stop eating carbs except for vegetables, and no sugar for 3 months which it has been hard to follow and also taking a bunch of supplements that I dont feel like entirely good with that.
But I will keep you posted because my treatment ends in November.
I have read almost half of the pages in this forum and obtained some good information. But if someone has something new to say it would be helpful. It has been so many years and its hard to find a person that can state that he/she was completely healed from this drug and it makes me sad to think that I will have to live like this all my life.
With HCG, Dont you have to be on it for life though? As in once you stop you revert back to how you currently are?
I get why though, youre just looking for some relief.
My belief these days is that its an autoimmune issue, something like lupus or a mild form of it. Supplements can have a slight affect and improve things but it is not a cure.
The other thing to consider is the gut dysbiosis. We know thats a real thing after Accutane as there were reports on it. That report was saying incurable so with that in mind, how do we expect to keep parasites and candida out, its impossible as far as I can tell.
That could be why we have persistent brain fog and libido issues.
Long Post, but highly recommend you read it all
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What do we know about accutane? Well certainly the people that make it claim to know nothing. All they claim to know is that it causes birth defects, and it causes acne to go away. They also claim it causes no lasting side effects, which is obviously incorrect. However, that is because not everyone suffers the same side effects. The reason for this, is because it inhibits neurogenesis and causes hippocampal atrophy, which causes varying degrees of brain damage
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http://www.ncbi.nlm.nih.gov/pubmed/25689814
"A 25-question survey was emailed to 7,013 dermatologists included in a proprietary database (MBD, Inc.) and anonymous responses were collected. 591 board-certified dermatologists participated. Thirty-seven percent of the responding dermatologists believe that isotretinoin may cause psychiatric disturbances. Dermatologists' opinions on this relationship did not significantly impact prescription practices in patients with history of depression (P=0.056) or in patients being treated with an antidepressant (P=0.118)."
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http://www.ncbi.nlm.nih.gov/pubmed/15863802
A"Results: Isotretinoin but not antibiotic treatment was associated with decreased brain metabolism in the orbitofrontal cortex (-21% change versus 2% change for antibiotic), a brain area known to mediate symptoms of depression.A
Conclusion: This study suggests that isotretinoin treatment is associated with changes in brain functioning."aoeA 4-month treatment trial with isotretinoin was associated with a decrease in brain functioning in the orbito-frontal cortex, a brain region implicated in depression.a
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http://www.ncbi.nlm.nih.gov/pubmed/15251924
aoeWe now show, in a mouse model, that endogenous RA generated by synthetic enzymes in the meninges acts on hippocampal granule neurons, and chronic (3-week) exposure to a clinical dose of 13-cis RA may result in hippocampal cell loss.a
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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC387382/
"This report demonstrates that a clinical dose (1 mg/kg/day) of 13-cis-RA in mice significantly reduces cell proliferation in the hippocampus and the subventricular zone, suppresses hippocampal neurogenesis, and severely disrupts capacity to learn a spatial radial maze task. The results demonstrate that the regions of the adult brain where cell proliferation is ongoing are highly sensitive to disruption by a clinical dose of 13-cis-RA."
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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3276716/#R173
"Increased concentrations of homocysteine have also been associated with attacks of violent anger. Isotretinoin administration to human subjects was shown to be associated with increased concentrations of homocysteine, as well as decreases in 5-methyl-tetrahydrofolate, providing a potential metabolic mechanism by which isotretinoin may promote depression."
"In the case of patients reported to the Norwegian Medicines Agency, single photon emission computed tomography (SPECT) of the brain was performed in 15 cases who reported lasting neurological symptoms. Altered brain function was seen in all cases involving altered or reduced frontal lobe blood flow. Ten of these patients were evaluated to have organic brain damage."
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https://www.ncbi.nlm.nih.gov/pubmed/20708044
"13-Cis-retinoic acid (13-cis-RA) causes depression-related behavior in mice. Hypothalamic dysregulation has been implicated in clinical depression. In fact, apoptosis of hypothalamic neurons may lead to depression after myocardial infarction. . . .We hypothesize that the ability of 13-cis-RA to decrease hypothalamic cell number may contribute to the increased depression-related behaviors observed in mice."
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Now that we have established that Accutane causes hippocampal atrophy and varying degrees of brain damahe, what are the consequences?
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Traumatic brain injury: a disease process, not an event.
https://www.ncbi.nlm.nih.gov/m/pubmed/20504161/
aoeTraumatic brain injury (TBI) is seen by the insurance industry and many health care providers as an "event." Once treated and provided with a brief period of rehabilitation, the perception exists that patients with a TBI require little further treatment and face no lasting effects on the central nervous system or other organ systems. In fact, TBI is a chronic disease process, one that fits the World Health Organization definition as having one or more of the following characteristics: it is permanent, caused by non-reversible pathological alterations, requires special training of the patient for rehabilitation, and/or may require a long period of observation, supervision, or care. TBI increases long-term mortality and reduces life expectancy. It is associated with increased incidences of seizures, sleep disorders, neurodegenerative diseases, neuroendocrine dysregulation, and psychiatric diseases, as well as non-neurological disorders such as sexual dysfunction, bladder and bowel incontinence, and systemic metabolic dysregulation that may arise and/or persist for months to years post-injury. The purpose of this article is to encourage the classification of TBI as the beginning of an ongoing, perhaps lifelong process, that impacts multiple organ systems and may be disease causative and accelerative. Our intent is not to discourage patients with TBI or their families and caregivers, but rather to emphasize that TBI should be managed as a chronic disease and defined as such by health care and insurance providers. Furthermore, if the chronic nature of TBI is recognized by government and private funding agencies, research can be directed at discovering therapies that may interrupt the disease processes months or even years after the initiating event.a
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Currently there is no acknowledgement of this from anywhere, which is why mental illness is becoming an epidemic. In a few decades though I think this will become mainstream knowledge
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https://www.ncbi.nlm.nih.gov/pubmed/16425236
aoeThe hippocampus is one of several limbic brain structures implicated in the pathophysiology and treatment of mood disorders. Preclinical and clinical studies demonstrate that stress and depression lead to reductions of the total volume of this structure and atrophy and loss of neurons in the adult hippocampus. One of the cellular mechanisms that could account for alterations of hippocampal structure as well as function is the regulation of adult neurogenesis. Stress exerts a profound effect on neurogenesis, leading to a rapid and prolonged decrease in the rate of cell proliferation in the adult hippocampus. In contrast, chronic antidepressant treatment up-regulates hippocampal neurogenesis, and could thereby block or reverse the atrophy and damage caused by stress. Recent studies also demonstrate that neurogenesis is required for the actions of antidepressants in behavioral models of depression. This review discusses the literature that has lead to a neurogenic hypothesis of depression and antidepressant action, as well as the molecular and cellular mechanisms that underlie the regulation of adult neurogenesis by stress and antidepressant treatment.a
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In this we see that accutane, in many ways, affects us like a chronic bout of stress. It is also why people who use antidepressants feel better, and why you often find people recommending SSRIs to treat accutaneas sides. That is because they DO help.
Now we established that hippocampal atrophy may be the cause of many of our symptoms, and that the way antidepressants work is by stimulating neurogenesis, here is how you can improve your recovery naturally, though if you wish to use antidepressants as well that fine as well
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Nutritional treatment for acute and chronic traumatic brain injury patients.
https://www.ncbi.nlm.nih.gov/m/pubmed/24844176/?i=6&from=/24605947/related
"omega 3 fats, vitamin D, N-Acetylcysteine, branched chain amino acids, zinc, alpha-lipoic acid, magnesium, taurine, coenzyme Q10, and many phytonutrients may be helpful in the recovery from a a TBI"
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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3705194/
Mindfulness Meditation can stimulate hippocampal brain cell growth. A smaller hippocampus is correlated with a poorer recovery from TBIs, in the case of war veterans suffering PTSD at least.
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http://www.ncbi.nlm.nih.gov/m/pubmed/11079535/
Study supporting Creatine consumption as one of the top supplements for recovering from a TBI, and the one below supports Taurine use as well.
http://www.ncbi.nlm.nih.gov/m/pubmed/27156064/
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Long-term effects of a ketogenic diet in obese patients
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2716748/
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"Beneficial changes in the brain energy profile have been observed in subjects who are on a ketogenic diet (28). This is a significant observation because cerebral hypometabolism is a characteristic feature of those who suffer from depression or mania"
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Currently I Adoing:
Creatine - increases Dihydrotestosterone (DHT) and testosterone. Increases muscle power and ALSO improves neuroplasticity
Fish Oil - improves joint pain, helps heart disease, and ALSO improves neuroplasticity
Zinc - increases levels of male hormones and ALSO improves neuroplasticity
Magnesium - helps with chronic pain, fatigue and insomnia and ALSO neuroplasticity
Vitamin D: Improves bone health, physical fitness, and ALSO improves neuroplasticity
CoQ10: Improves cardiovascular fitness and heart health, and ALSO improves neuroplasticityMultivitamin - makes me less likely to be malnourished.
I try to do meditation regularly, but I don't prioritise it enough... Though it helps with anxiety and stress, as well as neuroplasticity, and i plan to add it into my daily routine. A
I feel much better than I have in years. I think for the last two months I have woken with morning wood 95% of the time, social anxiety is limited, confidence in my abilities in much higher, and motivation to reach my goals, and also willingness to do the work to reach them, is also one of the main things I have noticed. Before I did the work still expecting to fail, while now I do the work and I expect success, which makes me actually enjoy the work, and thatas just one example. My life and my future doesnat seem so hopeless, there is plenty to celebrate and Iam sure plenty I will celebrate in the future
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Things I plan to do:
Taurine: Helps body avoid hypervitaminosis A, improves eyesight, digestion, heart health and ALSO improves neuroplasticity
Ketogenic Diet: Improves body composition, can help ED, and ALSO improves neuroplasticity
I try to do meditation regularly, but I don't prioritise it enough... Though it helps with anxiety and stress, as well as neuroplasticity, and i plan to add it into my daily routine. A
Things that might help, but are on the riskier side and I am unlikely to attempt myself, but possibly would help
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Antidepressants increase human hippocampal neurogenesis by activating the glucocorticoid receptor
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3121947/
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The regulation of adult rodent hippocampal neurogenesis by deep brain stimulation.
https://www.ncbi.nlm.nih.gov/pubmed/18173322
aoeHigh-frequency stimulation of the AN increases the hippocampal neurogenesis and restores experimentally suppressed neurogenesis. Interventions that increase hippocampal neurogenesis have been associated with enhanced behavioral performance. In this context, it may be possible to use electrical stimulation to treat conditions associated with impairment of hippocampal function.a
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Stimulation of entorhinal cortex promotes adult neurogenesis and facilitates spatial memory.
https://www.ncbi.nlm.nih.gov/pubmed/21940440
aoeDeep brain stimulation (DBS) is an established therapeutic modality for the treatment of movement disorders and an emerging therapeutic approach for the treatment of disorders of mood and thought. For example, recently we have shown that DBS of the fornix may ameliorate cognitive decline associated with dementia. However, like other applications of DBS, the mechanisms mediating these clinical effects are unknown. As DBS modulates neurophysiological activity in targeted brain regions, DBS might influence cognitive function via activity-dependent regulation of hippocampal neurogenesis. Using stimulation parameters analogous to clinical high-frequency DBS, here we addressed this question in mice. We found that acute stimulation of the entorhinal cortex (EC) transiently promoted proliferation in the dentate gyrus (DG). Cells generated as a consequence of stimulation differentiated into neurons, survived for at least several weeks, and acquired normal dentate granule cell (DGC) morphology. Importantly, stimulation-induced promotion of neurogenesis was limited to the DG and not associated with changes in apoptotic cell death. Using immunohistochemical approaches, we found that, once sufficiently mature, these stimulation-induced neurons integrated into hippocampal circuits supporting water-maze memory. Finally, formation of water-maze memory was facilitated 6 weeks (but not 1 week) after bilateral stimulation of the EC. The delay-dependent nature of these effects matches the maturation-dependent integration of adult-generated DGCs into dentate circuits supporting water-maze memory. Furthermore, because the beneficial effects of EC stimulation were prevented by blocking neurogenesis, this suggests a causal relationship between stimulation-induced promotion of adult neurogenesis and enhanced spatial memory.a
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Nootropic agents stimulate neurogenesis.
https://www.ncbi.nlm.nih.gov/pubmed/19441945
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Electrical Stimulation Elicits Neural Stem Cells Activation: New Perspectives in CNS Repair
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4610200/
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Acupuncture stimulation induces neurogenesis in adult brain.
https://www.ncbi.nlm.nih.gov/pubmed/24215918
Hippocampal Neurogenesis and Antidepressive Therapy: Shocking Relations
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4055571/
"A strong enhancement of neurogenesis has been observed in various species following experimental ECS treatments [20, 21]. Several studies indicated a close relation between hippocampal function and mood regulation. The observation of an antidepressive-like effect and an upregulation of hippocampal cell proliferation upon experimental ECS raised speculations on the participation of neurogenesis in the antidepressive mode of action. However, evidence for a direct participation of neurogenesis in antidepressive mechanisms still remains to be convincingly demonstrated [17].Systematic review of effect of coenzyme Q10 in physical exercise, hypertension and heart failure.
https://www.ncbi.nlm.nih.gov/pubmed/14695924
COENZYME Q10 IN PHYSICAL EXERCISE. We identified eleven studies in which CoQ10 was tested for an effect on exercise capacity, six showed a modest improvement in exercise capacity with CoQ10 supplementation but five showed no effect. CoQ10 IN HYPERTENSION. We identified eight published trials of CoQ10 in hypertension. Altogether in the eight studies the mean decrease in systolic blood pressure was 16 mm Hg and in diastolic blood pressure, 10 mm Hg. Being devoid of significant side effects CoQ10 may have a role as an adjunct or alternative to conventional agents in the treatment of hypertension. CoQ10 IN HEART FAILURE. We performed a randomised double blind placebo-controlled pilot trial of CoQ10 therapy in 35 patients with heart failure. Over 3 months, in the CoQ10 patients but not in the placebo patients there were significant improvements in symptom class and a trend towards improvements in exercise time.
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Smaller hippocampal volume predicts pathologic vulnerability to psychological trauma
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2819093/A
aoeIn animals, exposure to severe stress can damage the hippocampus. Recent human studies show smaller hippocampal volume in individuals with the stress-related psychiatric condition posttraumatic stress disorder (PTSD). Does this represent the neurotoxic effect of trauma, or is smaller hippocampal volume a pre-existing condition that renders the brain more vulnerable to the development of pathological stress responses? In monozygotic twins discordant for trauma exposure, we found evidence that smaller hippocampi indeed constitute a risk factor for the development of stress-related psychopathology. Disorder severity in PTSD patients who were exposed to trauma was negatively correlated with the hippocampal volume of both the patients and the patientsa trauma-unexposed identical co-twin. Furthermore, severe PTSD twin pairsaboth the trauma-exposed and unexposed membersahad significantly smaller hippocampi than non-PTSD pairs.a
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here is another interesting study about recovering from a TBI, it's basically like the worse the patient thinks his recovery will be, the worse it will be
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2077969/
The reason for this may be the worse the TBI is, the less likely the patient is optimistic about his recovery, or the worse his mental state before the injury happened the worse his recovery will be, rather than being optimistic improves outcomes
This is pretty much all the information needed for taking this approach to curing Post-Accutane Syndrome in one place. Obviously I would have missed things, and thats why I want everyone to discuss and suggest things that I have missed, and while I am certain that this will wipe away many of the sides, there are other mechanisms in which accutane acted, and while this counters one way it wrecked havoc in our lives, any ideas of the things we may do to address its other issues will always be appreciated
Love you all, donat give up, we will continue getting better together!
So this is my old post from 2017. I was addicted to this site around 2018 and it wasn't helping me anymore, so I changed my password to a random string of characters and left it behind. Since then google allows you to log in without fuss, and I just realised that today because I wanted to do an update for the first time in a long while.
I just want to say I am healthier and happier now than I was then. I am in a long term committed relationship and while I still have some scars from Accutane and deeply wish I had never taken it, it doesn't define my life and it has given me perspective and maturity that I likely would not have developed if I had never consumed it.
Some of the side effects still persist. Sexual Dysfunction is much alleviated, with a generic Multivitamin and regular zinc and magnesium supplementation along with vitamin D and Vitamin K helping in that area. Regular exercise also helps. I have tried periods of Keto, Carnivore, and prolonged fasting. They help reduce inflammation in the body (as shown by C reactive Protein) and that immediately helps with much of the brain fog and joint soreness, but it will not cure underlying nutritional deficiencies.
Even though when it was just me I felt fine, with others my anxiety would spike due to numerous traumatic failures, and I was dependant on Sildenafil when I first started dating again, but in my current long term relationship it hasn't been neccessary at all after the first few weeks. I am no stud but it does the job.
Vitamin K is the most important ingredient for me, physically. This is going to be TMI, but I would shoot blanks often from 2011-2018 before supplementing vitamin K regularly, but now quantity isn't an issue. I personally take this supplement:
It also has boron and other micronutrients, which I also believe can help somewhat, but Vit K is the most important for me.
While most of my previous advice from years ago is still quite relevant ( https://docs.google.com/document/d/1gGkP_NQ8tmYkOADlG2VuEX17YvQJKgnfcEtgy5_6y7c/edit ), one of the things not mentioned there is Telomere length.
Telomere length is both a predictive indicator and a lagging indicator of health. Chemotherapy shortens it, but once the treatment stops it relengthens again to close to its previous level, and people that have a genetic defect that keeps it longer than 99% of the population never have their hair go grey and are more resistant to stress/PTSD/Depression, but at the same time are at a significantly greater risk of tumours and cancer. I believe that supplements that increase telomere length generally do it by reducing inflammation and the subsequent improvement in health is what helps telomere length increase. Perhaps some simply increase telomere length with no other significantly beneficial effect, but that is why I was recently interested in oleanolic acid, though recent events have also increased my motivation to start taking it.
Oleanolic Acid is one of the supplements that bests lengthens telomere length, has a beneficial effect on depression and other mental illness:
https://pubmed.ncbi.nlm.nih.gov/37541369/ - suggests perhaps MS also
https://pubmed.ncbi.nlm.nih.gov/20677602/
https://pubmed.ncbi.nlm.nih.gov/38084769/ - also parkinsons while increasing increased BDNF(Brain-Derived Neurotrophic Factor plays an important role in the modulation of synaptic plasticity processes underlying learning, memory, and behavior)
It can also mediate the effects of an overactive immune system:
[Effects of oleanolic acid on immune system and type I allergic reaction]- https://pubmed.ncbi.nlm.nih.gov/2624126/
-In addition, the homologous passive cutaneous anaphylaxis in mice or rats and the degranulation of mast cells of calvarial periosteum in rats were significantly prevented by OLA 50, 100 mg/kg. The increased capillary permeability in the rat skin caused by intradermic injection of histamine was also reduced by OLA 100 mg/kg. These results indicate that OLA inhibited the type I allergic reaction.
Oleanolic acid modulates the immune-inflammatory response in mice with experimental autoimmune myocarditis and protects from cardiac injury. Therapeutic implications for the human disease - https://pubmed.ncbi.nlm.nih.gov/24732212/
Oleanolic acid is the supplement I am most interested in, but the B-vitamins including Folic Acid also improve my energy levels significantly as well, but I do so slowly because the balance of nutrients is important.
As many of the symptoms we suffer mimic those of an autoimmune disorder, I believe it will be of much help to many here.
Now, I am going to be a bit of a downer, and talk about Brain Fog
I personally believe one of the worst effects of accutane is the following:
https://psychiatryonline.org/doi/10.1176/appi.ajp.162.5.983
RESULTS:Isotretinoin but not antibiotic treatment was associated with decreased brain metabolism in the orbitofrontal cortex (21% change versus 2% change for antibiotic), a brain area known to mediate symptoms of depression.
However, it is also involved in the cognitive process of decision-making, impulse control and focus/attention, which is what I believe most people identify as brain fog. Reducing inflammation will help significantly, but it hasn't cured it, at least for me. Reducing inflammation helped me feel intelligent and creative again, but my concentration is still shot. ADHD runs in my family, so perhaps attention issues were always there but didn't bother me until my mental health tanked due to Accutane. I doubt the 20% reduction in brain metabolism in the orbitofrontal cortex helped though.
On another note, it has been interesting listening to people talk about Long Covid, as many of their symtoms, as well as the dismissiveness of the general public and most medical professionals alike, align with how many of us were treated.
What I learnt from my experience is the only way to get better was to improve both my mental and physical health. This has meant supplements, but it has also meant lifestyle changes, such as regular exercise and meditation as well as trying not to get sucked into depressing thought loops and avoiding 'triggers' so to speak.
Life is not fair. Some people get cancer, Long Covid, various autoimmune disorders, greviously injured due to no fault of their own, receive trauma from a deprived or abusive upbringing, and many other circumstances. The best thing you can do is try to live the best life that you can given your current circumstances. It is only natural and understandable to grieve for what is lost, but failure to move on will only hurt oneself further.
Yesterday I had an allergic reaction to one of my Girlfriend's culture's traditional drinks. I only had a small sip, and in the time it took to add more sugar because it had been completely unsweetened (which even my girlfriend doesn't like), my tongue/throat started to tingle and within 10 minutes I was going into anaphylaxis and on my way to hospital which was fortunately only a few minutes away. If it had been sweetened and I had drunk a significant amount I very well may have died. None of my siblings, nor either of my parents and their siblings, have any food allergies, and fortunately for me it was the first time for me too, though I have developed Hayfever.
The reason I decided to make this post was because after yesterday I did more research on Oleanolic Acid, and while realising it actually may have helped significantly yesterday, I also realised it may help many people here as well.
I think that once upon a time I would have dwelled on this for an extended period of time. Isotretinoin certainly affects epigenetics, and can cause autoimmune disorders, and so the 'what ifs' would have made me angry, frustrated, regretful, upset, etc. Instead I am going to get an allergy panel done, be more careful and move on with my life, because those feelings don't help me live the life I want to live.
Wish everyone here all the best!
fchawk
@recreant hi, I have the same problems sfter accutane. Ive tried oregano oil capsules, organic better, it does a great job in fighting bacteria in all parts of the body, specially the gut.
Yes! There is hope. Its taken me 30 years since going on Accutane, but Ive eliminated most of my symptoms. Ive just stumbled on this forum but Ill reply back soon with the most effective solutions Ive come across. I think youre all looking for the magic nutrient, but thats only part of the solution.
@scottjacobsnz inpiring. Looking forward.
@monsterdiesel I can't actually post what worked for me as the Moderator is blocking it!
damn I was looking forward to reading your experience 😫 . Any way you can try posting it again or elsewhere? Or just briefly summarizing? Thank you. Feel free to pm me as well
@lendertonnights I just sent you my full post in private message. Let me know if you got it.
Hi All. I'm sure there may be some relevant info in the previous pages of this thread, but it's >750 pages so I didn't want to comb through it all. I'm a 27 year old female, and I finished my second course of accutane in April 2024. I want to say that I have had cystic acne since I was 14 or 15. I started birth control and Differin at a young age, and it helped a lot (along with BPO topicals). My acne started to get worse in my early 20's, so back in 2021, I did a 5-month course of accutane. I had virtually no side effects except a slight reduction in oil. My acne was gone and stayed away! My oil production was overall reduced but not absent. My skin was perfect for a year after finishing my first course, and I maintained with topical tretinoin. Then, that winter, I started getting weird breakouts that I hadn't gotten before. My skin started to feel sensitive and fragile. I stopped my topicals, but I changed dermatologists at the time, and the one i had started aggressively pushing me to start Accutane again even though what I hadwas not acne but rather dermatitis.
In any case, after some time, I started round 2 of Accutane at her suggestion. It was HORRIBLE from the start. This time, around, my entire faceerupted in the worst rash of my life (retinoid dermatitis),for which I was prescribed a topical steroid. That steroid helped but the rash kept coming on and off, and my derm told me to keep using it.I ended up getting perioral dermatitis as a result of the steroid use and then got steroid-induced rosacea and a mild form of topical steroid withdrawal. This was all while I was on the Accutane to begin with. However, my derm told me to stick it out with the Accutane because it would help treat the perioral derm along with any texture I had left. My course was so bad, towards the end my side effects were intense--nightmares, intense facial flushing, GI issues, etc.
Thankfully, I quit my course at around a cumulative dose of 180 mg/kg (I know, it's way too high; my first course only reached about 145 mg/kg). At the end of it all, my skin was left in shambles. I had to take antibiotics for the perioral dermatitis, which still comes in small flares every so often. The flushing has subsided a lot but isn't completely gone (I get it every couple weeks or so).I also have EXTREMELY SENSITIVE skin. I started getting spontaneous hives on my face (only one hive at a time), and I cannot find any known allergen that causes them. They come without warning and itch like crazy and only respond to antihistamines.
My skin is truly unrecognizable. It doesn't make any of it's own oil anymore. I don't have acne but I now get weird rashes and dermatitis on all parts of my face, even parts that did not break out before. Thankfully my skin is not steroid reliant anymore, but it has gotten so bad to the point of not being able to function properly.
I'm at my wits end. I don't know where to start with supplements or if supplements will even help. I'm thinking of pursuing traditional chinese medicine/herbalism. I eat a relatively clean diet but am not consistent with it every day. I also need to work out more. I don't know if anyone has any experience with hives, rashes, dermatitis, and extremely sensitive skin after accutane, but any advice would be greatly appreciated.
Also, I cannot even wash my face with cleanser without it burning afterwards, so I stopped all cleanser. I only rinse with water and apply moisturizer, either Cerave PM lotion or La Roche Posay Double Repair Toleriane. I've tried hundreds of other moisturizers, but heavier ones make me flush or make my skin itch for some reason. These are the only safe ones for me at the moment.