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On 11/23/2020 at 3:02 PM, Quinc said:Yes I think there are ways to lower your enzymes with things like vitamin E and milk thistle, but I think the unique function of cholestryamine as it binds to the bile acids and removessubstances like isotretinoin is key here. In the case I posted above, the ALT level for the girl was reduced with cholestryamine, but why would a medicine to lower cholesterol and bind to bile acids lower ALT? Theres a connection there between isotretinoin metabolites and elevated enzymes.I think trying it is worth it
Thinking back to 1998 when I was on tane, from memory 4-6 month treatment, the one test you had to do was a Liver test. I tested ok so continued with my course
Let us know if you have success using Cholestryamine
Its not just another supplement from what Ive read on it, could be very helpful for tane victims
Hello everyone. Anyone else think all, (yes all), of the accutane side effects are autoimmune related? That is my current theory based on how accutane triggered major hairloss in me which later got diagnosed as Lichen Planopilaris. I've also noticed how the skin rashes, stomach problems, and so forth that other tane survivors have are usually autoimmune.
Anyways, I just wanted to report that I am having success treating my specific accutane side effect using immuno suppressor medicaiton.
I will add that if I had ED from accutane, which luckily I do not, I would most definitely try immuno suppressor medicaitons in a attempt to see if autoimmunity is playing a factor. Just wanted to throw that out there. Some medications that I would hypothetically try would be Tofacitinib, Apremilast, Actos, or hydroxycholchine. Once again, I don't have ED from accutane, but that would be my first protocol to try out if I did.
Back to my issue- My accutane induced lichen planopilaris is getting better through the use of Apremilast at 45mg. It's been only 1 week on it but my scalp is no longer itchy. I still have to wait and see if the shed decreases, but I have hopes.
~Gunnersup
This loosely held together community seems split on either adrenal problems, or widespread autoimmunity.
What worked for me was immuno-suppressants, but I'm sure everyone is different. There's really no one-size fits all for this, people have to evaluate their side effects, talk to others with the same problems, read research, gather a plan, and go through with it. After 5 months of careful planning on my end I am seeing the light at the end of the tunnel with my own personal side effects
Good answer, I can respect that
my lingering problems in no particular order are brain fog, acid reflux and fatigue.
Ive done some good work with kinesiologist but Im thinking Ill see a neurologist, I think they can help with brain fog these days. It could be a result from depression or hypothyroidism for example but I cant be sure
I wouldnt know though if my issues are anything to do with autoimmune- for me I wouldnt go chucking drugs at it randomly not knowing the cause, personally just couldnt do that.
Glad youre getting better!
On 11/28/2020 at 4:08 PM, Anna Nim said:I have seen dosage recommendations in various places. I am not quite sure what the 'legal' amounts are. You height is irrelevant. Regardless of dose, this is TOXIC and UNSAFE at anydose. ANYdose is dangerous. Here a 40 page bookletfromthe FDA's own website. https://www.accessdata.fda.gov/drugsatfda_docs/label/2008/018662s059lbl.pdf
(Anyone reading this, please ensure you fill out the MHRA survey regarding sexual side effects and suicide, regardless if you even took it they want to hear from the people)
DOSAGE AND ADMINISTRATION Accutane should be administered with a meal (see PRECAUTIONS: Information for Patients). The recommended dosage range for Accutane is 0.5 to 1.0 mg/kg/day given in two divided doses with food for 15 to 20 weeks. In studies comparing 0.1, 0.5, and 1.0 mg/kg/day,8 it was found that all dosages provided initial clearing of disease, but there was a greater need for retreatment with the lower dosages. During treatment, the dose may be adjusted according to response of the disease and/or the appearance of clinical side effects some of which may be dose related. Adult patients whose disease is very severe with scarring or is primarily manifested on the trunk may require dose adjustments up to 2.0 mg/kg/day, as tolerated. Failure to take Accutane with food will significantly decrease absorption. Before upward dose adjustments are made, the patients should be questioned about their compliance with food instructions. (p. 30).
It also has a chart for weight/dosing (would not copy right). My son was simply given too much, but ANY is too much IMHO...
Anna Nim
Hello Anna, I spent some time reading through your post history. Sorry about your son, I am his same age and also going through this life obstacle.
I found something similar to my story while reading through your posts, in that you said he has hairloss along with scalp itch. The itching is especially alarming for me to hear, as I have the same side effect from accutane. Well it turns out this side effect, in my case, was Lichen Planopilaris. Essentially it is an autoimmune disease in which your hair permanentatly diffusely scars over, subsequently not allowing regrowth. I got a proper diagnosisis from a dermatologist.
I have been having some success treating it with a medication called Otezla. Just wanted to tell you, but I realize he has other more important side effects that require care for. However, if he does have Lichen Planopilaris, which I'm nearly positive he has (as I have spoken to many others whom had Lichen Planopilaris from accutane), I wouldn't doubt his other symptoms could *also* be autoimmune related. Just a thought worth sharing.
On 11/30/2020 at 2:58 AM, Gunnersup said:Hello Anna, I spent some time reading through your post history. Sorry about your son, I am his same age and also going through this life obstacle.
I found something similar to my story while reading through your posts, in that you said he has hairloss along with scalp itch. The itching is especially alarming for me to hear, as I have the same side effect from accutane. Well it turns out this side effect, in my case, was Lichen Planopilaris. Essentially it is an autoimmune disease in which your hair permanentatly diffusely scars over, subsequently not allowing regrowth. I got a proper diagnosisis from a dermatologist.
I have been having some success treating it with a medication called Otezla. Just wanted to tell you, but I realize he has other more important side effects that require care for. However, if he does have Lichen Planopilaris, which I'm nearly positive he has (as I have spoken to many others whom had Lichen Planopilaris from accutane), I wouldn't doubt his other symptoms could *also* be autoimmune related. Just a thought worth sharing.
Hey, have you filled out the MHRA survey? Has EVERYONE who are reading my words filled it out?? They choose to believe that Sexual Sides and Sucides are rare since they do not hear from us. Fill it out today!
That being said, perhaps I will take him to a (shutter) dermatologist..they SHOULD be able to diagnose that, at least...
In your experience with this, does this sound like Lichen?He does not appear to have missing hair at this time. He was losing it when he got sick, but that has stopped. He does still report that itchy hot spot at the center of his crown (basically where the 'whorl" is. He scratches it a lot. A few weeks ago, he got a chiropractic adjustment and after icing his neck, that spot on the top of his scalp was icy. I have never seen any spots or anything on his scalp in that spot, except from scratching (I guess it was in that order).
What kind of blood tests are done to determine an auto-immune issue? Does this medication treat other things or just that, although I admit I would be VERY hesitant to take a damn thing. How does the derm diagnose the issue? Do some people take it for a time, then stop. (He also has "Male pattern hair loss" that I also am certain was triggered by ISO,. I am pretending not to notice).
I want to take him to Drs to AT LEAST get diagnoses. FFS, that should be easy! The Uro said it was in his head, refused to do ANYTHING since his T was "WNL" at a mere 523. He has eye issues going on as well, although IDK if it is ISO or the mild concussion he got two months after. I always think ISO. Fukers..
On 12/2/2020 at 5:10 PM, Anna Nim said:Hey, have you filled out the MHRA survey? Has EVERYONE who are reading my words filled it out?? They choose to believe that Sexual Sides and Sucides are rare since they do not hear from us. Fill it out today!
That being said, perhaps I will take him to a (shutter) dermatologist..they SHOULD be able to diagnose that, at least...
In your experience with this, does this sound like Lichen?He does not appear to have missing hair at this time. He was losing it when he got sick, but that has stopped. He does still report that itchy hot spot at the center of his crown (basically where the 'whorl" is. He scratches it a lot. A few weeks ago, he got a chiropractic adjustment and after icing his neck, that spot on the top of his scalp was icy. I have never seen any spots or anything on his scalp in that spot, except from scratching (I guess it was in that order).
What kind of blood tests are done to determine an auto-immune issue? Does this medication treat other things or just that, although I admit I would be VERY hesitant to take a damn thing. How does the derm diagnose the issue? Do some people take it for a time, then stop. (He also has "Male pattern hair loss" that I also am certain was triggered by ISO,. I am pretending not to notice).
I want to take him to Drs to AT LEAST get diagnoses. FFS, that should be easy! The Uro said it was in his head, refused to do ANYTHING since his T was "WNL" at a mere 523. He has eye issues going on as well, although IDK if it is ISO or the mild concussion he got two months after. I always think ISO. Fukers..
There is a possibility it is Lichen Planopilaris, a dermatologist will be able to tell. Otezla if working for my Lichen, but it's the only side effect from accutane I have. So I don't know if it would work for other accutane side effects. I bet it would, though
On 11/30/2020 at 4:58 PM, TrueJustice said:Good answer, I can respect that
my lingering problems in no particular order are brain fog, acid reflux and fatigue.
Ive done some good work with kinesiologist but Im thinking Ill see a neurologist, I think they can help with brain fog these days. It could be a result from depression or hypothyroidism for example but I cant be sure
I wouldnt know though if my issues are anything to do with autoimmune- for me I wouldnt go chucking drugs at it randomly not knowing the cause, personally just couldnt do that.
Glad youre getting better!
have you done a extensive thyroid test ? Even though your TSH is still within range which most doctors do, you could still have secondary hypothyroidism.
1 hour ago, Ronnie99 said:have you done a extensive thyroid test ? Even though your TSH is still within range which most doctors do, you could still have secondary hypothyroidism.
Let me respond by saying this
Why would anyone look into hypothyroidism right now??
Right now Gunnersup has clearly identified an autoimmune issue which he is working on. Not to say we all have the same condition but at least hes identified an autoimmune issue, to my knowledge theres nothing for him to consider with thyroid
I ask this question with all sincerity, the thing that pisses me off the most post tane is not knowing which path to investigate, liver, thyroid, autoimmune, fucking avoiding Vit A, water fast, you name it - you can spend a lifetime going down any one of these paths, and some must be fruitless and a waste of time
So unless theres some success story with treating hypothyroidism thats been clearly diagnosed post tane, I cant think of why anyone should investigate that area right now?
Happy to hear some stories if there are any!!
Dont get me wrong, I appreciate the question but show me some success stories please
On 11/26/2020 at 8:28 AM, TrueJustice said:Survey done!!!
I dunno, all these surveys just to combat a chronic Candida problem....
Tell the fuckers to report the findings this time unlike the previous 5 surveys over the last 20 years pls - who would know the outcome from those?
thanks
What other surveys? This is the first time ever Accutane victims have had the chance to be heard. Your australian regulators are doing nothing and although I don't have much faith in the MHRA they are at lest rolling this survey out to victims across the world.
Devastatingly there are thousands ofyoung Accutane victims who will never again get the chance to be heard because they are dead. Anyone who has ever been hurt by this evil drug please speak up on behalf of all the loved ones we have lost and for all of those who will go on to take their own lives because of thiswicked drug.
22 Accutane deaths have been reported in the UK since theMHRAfist agreed to reconvened anEWGand 54 in the US. We all know that many Accutane suicides will not have been reported and there is no way to know the real numbers of lives lost to this evil drug.
Everyone, please take the time to fill out the survey and if you want to say more you can email the expert working group directly: isotretinoin @mhra.gov.uk
On 12/5/2020 at 8:15 PM, TrueJustice said:Let me respond by saying this
Why would anyone look into hypothyroidism right now??
Right now Gunnersup has clearly identified an autoimmune issue which he is working on. Not to say we all have the same condition but at least hes identified an autoimmune issue, to my knowledge theres nothing for him to consider with thyroid
I ask this question with all sincerity, the thing that pisses me off the most post tane is not knowing which path to investigate, liver, thyroid, autoimmune, fucking avoiding Vit A, water fast, you name it - you can spend a lifetime going down any one of these paths, and some must be fruitless and a waste of time
So unless theres some success story with treating hypothyroidism thats been clearly diagnosed post tane, I cant think of why anyone should investigate that area right now?
Happy to hear some stories if there are any!!
Dont get me wrong, I appreciate the question but show me some success stories please
Well mate you wrote regarding brain fog it could be Hypothyroidism so I was trying to give you a pointer.
I went to see a neurologist last week, he gave me the option to do two tests, a PET Scan and an MRI, im thinking of doing both, possibly the PET scan could somehow show reduced blood flow to certain areas of the brain, I think I read in a study Accutane reduced blood flow metabolism to the orbitofrontal cortex, it will be interesting to compare the scan to normal/controls.
10 hours ago, Ronnie99 said:Well mate you wrote regarding brain fog it could be Hypothyroidism so I was trying to give you a pointer.
I went to see a neurologist last week, he gave me the option to do two tests, a PET Scan and an MRI, im thinking of doing both, possibly the PET scan could somehow show reduced blood flow to certain areas of the brain, I think I read in a study Accutane reduced blood flow metabolism to the orbitofrontal cortex, it will be interesting to compare the scan to normal/controls.
I did, but is there anyone whos had their thyroid fixed and made a recovery?
Who has a thyroid story to share on here pls??
I appreciate you going to see a neurologist and seeking answers. To jump ahead a few steps though, how would they treat reduced blood flow? What would they put you on
FYI - kinesiologist can identify thyroid issues as a starting point, tricky area though, theres even books on it why do I still have thyroid symptoms? When my lab tests are normal. The book title says it all
So its not easy to fix. Also kinesiologist cant detect autoimmune issues, for that youd have to get blood tests
On 12/7/2020 at 4:30 AM, timetoban said:Let's hope all victims will have a conscience. I know it is too late for us but more will die if we do not actnow.
Please complete the survey and more if you feel strongly. email the MHRA to voice your concerns and call forsupport and compensation for all victims.
I love how people just go on and on about their issues after a call for MHRA information. I would love to read what others are posting to the MHRA. I want to know what you are sharing with them.
This is crap that they are giving us, but it has been YEARS, YEARS in the making and we only have till the end of January to get our story out there.
Are you thinking the banning of it will lead to also knowing how to repair the damage??
Be great to see it finally banned, doubt though itll necessarilylead to knowing how to repair anything...
Keen to hear how you feel about that as we go back to going on and on about issues and trying to find a solution in this part of forum about repairing tane issues
4 hours ago, TrueJustice said:Are you thinking the banning of it will lead to also knowing how to repair the damage??
Be great to see it finally banned, doubt though itll necessarilylead to knowing how to repair anything...
Keen to hear how you feel about that as we go back to going on and on about issues and trying to find a solution in this part of forum about repairing tane issues
I am glad to know the answers of these 'coz these questions are also onthe tip of my tongue.
The amount of time, energy and effort is about the same down either path Id say, trying to heal or trying to get it banned - youll nodoubt be very frustrated either way you go!!
Wont even go into the money spent but Ive seen many a specialist, many a doctor, many alternative therapists over the last 20 years - couldnt even count.
Here we still are, talking supplements and failed paths taken but Ive given it my best shot and I hoped to pass on any knowledge gathered along the way to try and help others - thats been my intention
Others have put their time and energy in to trying to get this shit drug banned - hats off to them, I appreciate their efforts in that regard
Im too fucken jaded to ask more than once to have this drug banned.Call me naive but my assumption is that drug companies have the best of intentions, they want to help and have tested their drug rigorously before distributing it - if thats not the case than dont release it - thats how it should be!!
Weve all sat there in the face of ignorant fucks who think this drug is fine within the medical community....its extremely hard to continue to do that year after year!!
Sorry to say but the drug companies do NOT have the best intentions in mind. Their sole interest is money. Nothing more. They do not care how many lives they destroy. They only think about one thing. Money. The mhra and fda are in business to protect the drug companies, not the people.
Not making any promises, but after everything I've learned about accutane, I believe the solution is a lot simpler than most people would think. A daily smoothie consisting of organic 2% dha milk combined with 2-4 raw eggs. Cheap non vegan eggs. Do this every day of the week for atleast a month and I believe the issues will finally resolve.
I'm starting this program today. I believe the drug is trapped in the body, and requires massive amounts of whole food lecithin to pull it out. Eggs are rich in lecithin. I also believe were severely deficient in real vitamin A and omega 3 fatty acids. Eggs and milk have vitamin A, and the milk has omega 3 dha.This two part smoothie solves all of these nutritional issues I believe we all have. Will keep the board posted in the coming days or weeks. Godspeed.
14 hours ago, milkysweet said:I am glad to know the answers of these 'coz these questions are also onthe tip of my tongue.
19 hours ago, TrueJustice said:Are you thinking the banning of it will lead to also knowing how to repair the damage??
Be great to see it finally banned, doubt though itll necessarilylead to knowing how to repair anything...
Keen to hear how you feel about that as we go back to going on and on about issues and trying to find a solution in this part of forum about repairing tane issues
There is something to be said for trying to help others.When I first came here, I was like, "Hey, my son is damaged, he just got off the drug, what do I do? Help! Thenext handful of responses was everyone responding to their own prior posts. ONEperson did pop in. Finally. Thankfully.
Sadly, there is a large collection of damaged men here.Imagine if every. single. one. took the time to fill out a 4 question survey and a email to not only the MHRA, but the FDA as well. Many have disappeared from this forum over the years. Everyone here talks and talks about what they are trying, andit seems you will be here for decades more-why not spend 10% of that same time trying to have LESS join us here. This has been years in the making,go back to status quo after filling out the MHRA survey!
FYI, Banning in not on the tableand NO ONE is looking for a cure, I think there is not one anyway. This drugwill be around forever, just like the damage. But, better labeling WILL help. What is done in the UK, maybe be done in the rest of the EU, then perhaps the USA one day. MYgoal is to try to find a way for the USA to have labeling regarding the sexual sides, and if the UK increases their warnings, then it will be easier to have it in the USA. If I had known about that side effect, I would have never let my son take it. Knowledge is Power.
Fill out the survey AND send them a letter. Part of their excuse is that they don't know about us-well, here is your chance, flawed though it may be.
In your letter even tell them, "Look, I am burnt out, I just want to fix myself as I have no faith in your and your BS. I know you won't do a damn thing..but here is my story anyway.."
Supplements
Kyolic original
Organic beetroot
Organic 2% dha milk + 2-4 cheap non vegan raw chicken eggs daily smoothie
Diet
Omnivore
Organic when possible
Coffee
Organic instant decaf
Frozen entrees
Lean cuisine
Healthy choice
Amy's organics
Fruit
Canned or raw, organic if possible
Glucose source
Organic dates
Juice
Dole pineapple juice
Meats
Bk
Mcd
Ballpark beef franks
Up north beef sticks
Jack link's beef jerky
Tyson chicken nuggets
Chicken or turkey sausage
Milk
Organic 2% + dha
Low pufa nut butter
Nutella
Orac staple
Simply smoothie orchard berry
Probiotics
Raw kombucha
Seafood
BK
McD
Subway tuna
Pouched albacore (Amazon, walmart)
Precooked frozen shrimp & sweet baby ray's bbq sauce
Soup
Campbell's chunky
Soy free deli
Meijer baked beans
Panera Mac n cheese
Soy free, low pufa snacks
Combos
Veggies
Canned, never raw, organic if possible
Avoid soy based deli
Cole slaw
Tuna salad
Potato salad
Macaroni salad
Avoid all caffeine
Avoid all swine products except ham
Deodorant
None
Water treatment
Ecopure chlorine filter/water softener
The fda and mhra are two of the most corrupt organizations on the planet. Their offices are FILLED with pharma industry reps. They will always do whatever they can do to protect the drug companies. Drugwatch.com actually cares about people. As long as ppl have faith in demonic orgs like the fda and mhra they will continue to live with a feeling of defeat. When you learn to let go of evil entities and create new hubs of information on your own, you can create real change. Join drugwatch.com and help them expand their sphere of influence globally.
21 hours ago, TrueJustice said:Are you thinking the banning of it will lead to also knowing how to repair the damage??
Be great to see it finally banned, doubt though itll necessarilylead to knowing how to repair anything...
Keen to hear how you feel about that as we go back to going on and on about issues and trying to find a solution in this part of forum about repairing tane issues
Why don't you email the review team and ask them to find a cure, financially support all victims and give compensations for the thousands of destroyed lives and gotonly knows how many lost lives.
You must have realised by now that you not going to get the answers here.
What have you done to stop other patients from being injured and murdered?
[email protected] for the attention of the expert working group
47 minutes ago, Aaron76 said:The fda and mhra are two of the most corrupt organizations on the planet. Their offices are FILLED with pharma industry reps. They will always do whatever they can do to protect the drug companies. Drugwatch.com actually cares about people. As long as ppl have faith in demonic orgs like the fda and mhra they will continue to live with a feeling of defeat. When you learn to let go of evil entities and create new hubs of information on your own, you can create real change. Join drugwatch.com and help them expand their sphere of influence globally.
I agree that that the FDA and the MHRA are corrupt and uncaring; murderings b****** even - it is not a matter of having faith!
Being heard is important and staying silent allows Roche, MHRA and the FDA to continue with their eviliness.
Why don't you encourage people to report as we have nothing to lose and everything to gain?
please provide contact details so that victims can also contact Drugwatch.com.
What exactly are they doing towarn patients about the dangers of Isotretinoin because I haven;t seen anything that would inform patients?
2 hours ago, Anna Nim said:
There is something to be said for trying to help others.When I first came here, I was like, "Hey, my son is damaged, he just got off the drug, what do I do? Help! Thenext handful of responses was everyone responding to their own prior posts. ONEperson did pop in. Finally. Thankfully.
Sadly, there is a large collection of damaged men here.Imagine if every. single. one. took the time to fill out a 4 question survey and a email to not only the MHRA, but the FDA as well. Many have disappeared from this forum over the years. Everyone here talks and talks about what they are trying, andit seems you will be here for decades more-why not spend 10% of that same time trying to have LESS join us here. This has been years in the making,go back to status quo after filling out the MHRA survey!
FYI, Banning in not on the tableand NO ONE is looking for a cure, I think there is not one anyway. This drugwill be around forever, just like the damage. But, better labeling WILL help. What is done in the UK, maybe be done in the rest of the EU, then perhaps the USA one day. MYgoal is to try to find a way for the USA to have labeling regarding the sexual sides, and if the UK increases their warnings, then it will be easier to have it in the USA. If I had known about that side effect, I would have never let my son take it. Knowledge is Power.
Fill out the survey AND send them a letter. Part of their excuse is that they don't know about us-well, here is your chance, flawed though it may be.
In your letter even tell them, "Look, I am burnt out, I just want to fix myself as I have no faith in your and your BS. I know you won't do a damn thing..but here is my story anyway.."
13 hours ago, TrueJustice said:The amount of time, energy and effort is about the same down either path Id say, trying to heal or trying to get it banned - youll nodoubt be very frustrated either way you go!!
Wont even go into the money spent but Ive seen many a specialist, many a doctor, many alternative therapists over the last 20 years - couldnt even count.
Here we still are, talking supplements and failed paths taken but Ive given it my best shot and I hoped to pass on any knowledge gathered along the way to try and help others - thats been my intention
Others have put their time and energy in to trying to get this shit drug banned - hats off to them, I appreciate their efforts in that regard
Im too fucken jaded to ask more than once to have this drug banned.Call me naive but my assumption is that drug companies have the best of intentions, they want to help and have tested their drug rigorously before distributing it - if thats not the case than dont release it - thats how it should be!!
Weve all sat there in the face of ignorant fucks who think this drug is fine within the medical community....its extremely hard to continue to do that year after year!!
Very selfish attitude. Tell me how many teenagers committed isotretinoin induced suicide this year in the US and the UK?
Better still, tell me how many Australians botherer to report any side effects at all?
It will be years before victims get another chance to be heard so please speak up now.
speak up for all the kids who lost their lives
for all the males whocan't have sex and will never father a child.
for all the females who are not able to enjoy sex.
for all the foetuses who were spontaneously aborted
for all those who have diminished painful lives
for all those grieving for the loss of their former lives
for all those who no longer have a future worth living
Direct email [email protected]