Acne.org Products
And we probably shouldn't get to fighting too much. We might all have differing ideas and opinions but with the nature of our condition and how little information we have about it, maybe that's how its going to be. Best to just present findings/arguments in as transparent a way as we can
Not for me, I was hammered by tane during treatment, got bad depression and stopped taking it.
Yes, post treatment Ive had other things start to occur - thats prob due to its ageing effects which take hold.
The mental issues and fatigue are the worst though, I mean I could live with tane giving you a sore arm or something but to smash ones cognitive function just plain sucks!!
Accuitys post about it causing a stoke in some people, that was never mentioned as a side effect was it? I sure hope those individuals got to sue the fuck out of Roche
I feel like suing them just for eye floaters - I certainly never signed up for any of this shitthats for sure.
Has anyone ever had a HIDA (hepatobiliary)scan to determine what state their liver, gallbladder and bile ducts are in?
From searching the forums I can only see @tanedoutmention this, however it seems he never posted the results.
https://www.mayoclinic.org/tests-procedures/hida-scan/about/pac-20384701
12 hours ago, Frage said:Isn't the biggest mystery to this condition the POST nature of it? I was fine my first course of tane, did not notice any symptoms at all. After I discontinued it I had signs of PAS but they were minor and I was unaware. I had another course and during this course my symptoms resolved until I stopped the treatment. This is when my symptoms returned with friends and with a vengeance. This is the same for PFS people, some fin users were on it for a decade or more without incident. It was only upon discontinuation that symptoms arose. And many PAS and PFS patients report symptom relief upon using 5ari's again (another one is aromatase inhibitors) even if it is temporary and often with eventual worsening of symptoms. Whatever theories you guys have for the root of this condition have to explain these phenomenon. Long term damage from exposure to these states might be another topic. But does chemo type effects or brain damage effects explain these phenomenon? Maybe you guys have already thought of this and I just can't see it and I'm just being some captain obvious but I thought I would point these out nonetheless.And we probably shouldn't get to fighting too much. We might all have differing ideas and opinions but with the nature of our condition and how little information we have about it, maybe that's how its going to be. Best to just present findings/arguments in as transparent a way as we can
I got my symptoms while ON the drug.
18 hours ago, TrueJustice said:I feel like suing them just for eye floaters - I certainly never signed up for any of this shitthats for sure.
Those eye floaters could be a sign.
retinal vascular disease, or damage to the retina caused by abnormal blood flow.
Now lets take this a step further.
Retinal vascular fractals and microvascular and macrovascular complications
The association of D(f) with proliferative retinopathy, nephropathy, neuropathy, and macrovascular disease (coronary heart disease, stroke, peripheral artery disease) was examined.
CONCLUSIONS:
This study adds to the evidence that D(f) may have some role as a global measure of retinal vasculature and its association with systemic disease.
Now lets take this even further.
Retinal Vascular Fractals Correlate With Early Neurodegeneration
Cerebral microvascular disease is associated with dementia. Differences in the topography of theretinal vascularnetwork may be a marker for cerebrovascular disease. ... We measuredretinal vascular fractaldimension (Df) as a potential marker of cerebral microvascular disease.Mar 27, 2015
Obviously its alot more then our eyes bothering us.
I have eye floaters. I have neurodegeneration.
As far as fatigue, Im thinking Cardiac Output.
I have a small sag in my heart.
Truejustice said if we ever have our day in court...
Someones going to really need to have their shit together.
If I get more than a hint of some things I can do, I am definitely going after this.
Guitarman- who does one see about these Vascular issues??
Ive seen a Vascular Surgeon about my varicose leg veins but he only knows how to operate and strip them, he knows fuck all about Accutane and fatigue and all that stuff when I quizzed him on it.....to be honest I didnt expect him to.
So who do we see, who knows how to look at degeneration and offer up some lifestyle changes?? Which specialist.....
1 hour ago, TrueJustice said:Guitarman- who does one see about these Vascular issues??
Ive seen a Vascular Surgeon about my varicose leg veins but he only knows how to operate and strip them, he knows fuck all about Accutane and fatigue and all that stuff when I quizzed him on it.....to be honest I didnt expect him to.
So who do we see, who knows how to look at degeneration and offer up some lifestyle changes?? Which specialist.....
Lol you quizzed a vascular surgeon on Accutane ? Thats your first problem!
1 hour ago, TrueJustice said:Guitarman- who does one see about these Vascular issues??
There is a newer device out. The only one of its kind so far.
It measures or calculates Aortic Pulse Wave Velocity.
It measures Aortic Stiffness and the rate of blood flow.
The Aorta is the main artery of the body, supplying oxygenated blood to the circulatory system.
Its not cheap at 150 bucks.
I should be getting it soon. I will let you know.
What is Pulse Wave Velocity?
Imagine a single health metric able to identify people in their 20s at increased risk for development of Heart Disease, Stroke and Dementia. What if this health indicator could estimate how long you will live?
- Increased Arterial Stiffness is Superior to Blood Pressure in Predicting Cognitive Decline in Healthy Adultsread
- Signs Of Cognitive Decline And Alzheimers Can Be Detected In Younger Adults - A new study found a link between increased aortic stiffness and early signs of brain injury, which can potentially lead to Alzheimers disease, in healthy, middle-aged adults.read
- Stiffening of the arteries detected in multi-ethnic study of young adultsread
- Aortic Pulse Wave Velocity: An Independent Marker of Cardiovascular Riskread
- Diabetes mellitus, aortic stiffness, and cardiovascular mortality in end-stage renal disease.read
- Arterial Stiffness is a Cause of Cognitive Decline and Dementiaread
- Aortic pulse wave velocity and reflecting distance estimation from peripheral waveforms in humans: detection of age- and exercise training-related differencesread
- Short-Term Aerobic Exercise Reduces Arterial Stiffness in Older Adults With Type 2 Diabetes, Hypertension, and Hypercholesterolemiaread
- Prognostic Value of Aortic Pulse Wave Velocity as Index of Arterial Stiffness in the General Populationread
- Arterial stiffness: a new surrogate end point for cardiovascular disease?read
- Wave reflection and arterial stiffness in the prediction of 15-year all-cause and cardiovascular mortalities: a community-based studyread
- Reflection Magnitude as a Predictor of Mortalityread
- Vascular Stiffness: Its Measurement and Significance for Epidemiologic and Outcome Studiesread
- Aortic Pulse Wave Velocity as a Marker of Cardiovascular Risk in Hypertensive Patientsread
- Prediction of cardiovascular events and all-cause mortality with central haemodynamics: a systematic review and meta-analysisread
- The effects of dietary and nutrient interventions on arterial stiffness: a systematic reviewread
- People who eat high protein foods have lower blood pressure and arterial stiffnessread
- Protective effect of chronic garlic intake on elastic properties of aorta in the elderlyread
- Chronic coffee consumption has a detrimental effect on aortic stiffness and wave reflectionsread
- Postprandial effect of dietary fat quantity and quality on arterial stiffness and wave reflection: a randomised controlled trialread
- Vitamin D Status Is Associated With Arterial Stiffness and Vascular Dysfunction in Healthy Humansread
I think we have enough information to start repairing some of the damage caused by Accutane. The problem i see is this 1 pill/1 cure approach that never works.
The damaged caused was multi-systemic so improvements will be seen by using a multi-systemic approach.
For starters, I think there is truth in the methylation angle. How accutane upregulated that enzyme (forget name) and our bodies use up folate/b12 faster. I've used methylfolate and b12 on/off for years and saw no improvement. that is, until I started Testosterone replacement therapy. Now I'm getting an almost anabolic effect from folate. Muscle hardness is back, strength is improved, constipation is better- all this probably from restarting methylation. But I'm only noticing these effects after being on TRT for 6 months.
Now, when I finally convinced a doc to put me on TRT, I was expecting miraculous results. Better fat loss, more muscles, more energy and a sharper mind. I didn't see any of that. That's because TRT only addressed one problem. I added folate at 5 mg a day and noticed a little energy but nothing more. I dropped the dose to 400 mcg (the RDA) because I don't have an MTHFR mutation and holy cow, the effect was obvious. The first dose gave me palpilations and dehydrated me. Probably because my body was building new cells and it was using up electrolytes fast. I addressed that and now I'm getting more energy, a better working mind and my muscles feel harder and fuller.
What else do we know about what Accutane does to body? All these angles need to be targeted at the same time.
Sorry for the long post, just want to share my findings. Curious to know what you guys think.
I had a TIA (transient ischemic attack) about 1.5 months after discontinuation. Then the wave of various side effects started to pop up day by day. So, I am in the POST group. While on the drug all I had was dry lips, lower back pain, vivid dreams. I feel as if that is a big clue to the puzzle (at least in my case) and I would like to pose that question to a professional, however I feel as if a standard MD would have no idea. A scientist would have a better inkling.
What really grinds my gears: The red tape between Scientist and Patient is far too great. Even if you had a day in court, all you would see is a lawyer representing a pharmaceutical company, and maybe a paid for "medical expert". They do this purposely. These investors and executives are able to affect people that they never once have to see, ever.
http://saidsupport.org/autoinflammatory-vs-autoimmune-what-is-the-difference/
interesting concept here ^
could explain why we dont necessarily test positive on autoimmune tests/inflammation marker tests
10 hours ago, MonsterDiesel said:I think we have enough information to start repairing some of the damage caused by Accutane. The problem i see is this 1 pill/1 cure approach that never works.
The damaged caused was multi-systemic so improvements will be seen by using a multi-systemic approach.
For starters, I think there is truth in the methylation angle. How accutane upregulated that enzyme (forget name) and our bodies use up folate/b12 faster. I've used methylfolate and b12 on/off for years and saw no improvement. that is, until I started Testosterone replacement therapy. Now I'm getting an almost anabolic effect from folate. Muscle hardness is back, strength is improved, constipation is better- all this probably from restarting methylation. But I'm only noticing these effects after being on TRT for 6 months.
Now, when I finally convinced a doc to put me on TRT, I was expecting miraculous results. Better fat loss, more muscles, more energy and a sharper mind. I didn't see any of that. That's because TRT only addressed one problem. I added folate at 5 mg a day and noticed a little energy but nothing more. I dropped the dose to 400 mcg (the RDA) because I don't have an MTHFR mutation and holy cow, the effect was obvious. The first dose gave me palpilations and dehydrated me. Probably because my body was building new cells and it was using up electrolytes fast. I addressed that and now I'm getting more energy, a better working mind and my muscles feel harder and fuller.
What else do we know about what Accutane does to body? All these angles need to be targeted at the same time.
Sorry for the long post, just want to share my findings. Curious to know what you guys think.
Sorry if Ive missed it but Im not seeing us not adopt the multifaceted approach?!!
At any given time were looking into all areas, gut, liver, hormones, depression and now into blood flow etc with supplements to combat each area.
Many protocols and supplements cross over anyway, say if youre on Vit B to help with the fatigue it would also help possibly with depression.
Are you on TRT for life? Im sure this comes with its own list of side effects yeah?
I know there's a wealth of info in this thread. And I hope it never gets removed but we should start to try and structure our posts into individual threads. The organisation that comes with that will allow for individual ideas to be worked towards and for results to be actually followed up. This thread is pretty messy.
We should all try to post here now. Respect to the guy/girl that set this up!
[removed]
16 hours ago, MonsterDiesel said:I think we have enough information to start repairing some of the damage caused by Accutane. The problem i see is this 1 pill/1 cure approach that never works.
The damaged caused was multi-systemic so improvements will be seen by using a multi-systemic approach.
For starters, I think there is truth in the methylation angle. How accutane upregulated that enzyme (forget name) and our bodies use up folate/b12 faster. I've used methylfolate and b12 on/off for years and saw no improvement. that is, until I started Testosterone replacement therapy. Now I'm getting an almost anabolic effect from folate. Muscle hardness is back, strength is improved, constipation is better- all this probably from restarting methylation. But I'm only noticing these effects after being on TRT for 6 months.
Now, when I finally convinced a doc to put me on TRT, I was expecting miraculous results. Better fat loss, more muscles, more energy and a sharper mind. I didn't see any of that. That's because TRT only addressed one problem. I added folate at 5 mg a day and noticed a little energy but nothing more. I dropped the dose to 400 mcg (the RDA) because I don't have an MTHFR mutation and holy cow, the effect was obvious. The first dose gave me palpilations and dehydrated me. Probably because my body was building new cells and it was using up electrolytes fast. I addressed that and now I'm getting more energy, a better working mind and my muscles feel harder and fuller.
What else do we know about what Accutane does to body? All these angles need to be targeted at the same time.
Sorry for the long post, just want to share my findings. Curious to know what you guys think.
Interesting...can I ask what your total T and free T were at before starting TRT?
8 hours ago, TrueJustice said:Are you on TRT for life? Im sure this comes with its own list of side effects yeah?
Quite possibly i'll be on TRT for life. I spent 10+ years trying to raise my testosterone naturally. Tried everything; every supplement, diet, strategy- nothing worked. Even on Trt, I admit I cant seem to get my levels up to where they should be even using the highest dose. As if my body is metabolizing it faster. But im getting no sides. Still, i see improvements so it helps. Funny thing is, i can now tolerate a lot of supplements I wasnt able to before.
trt is just one step. Methylation another. Biotin is next. Just got tested for biotinidaze enzymes to see if theres a problem there.
What else does research shows that accutane messes with?
2 hours ago, mikez said:Interesting...can I ask what your total T and free T were at before starting TRT?
I-ve tested a lot over the years. Total was in upper 200+/low 300+. Free was always below lower range.
8 hours ago, MonsterDiesel said:Quite possibly i'll be on TRT for life. I spent 10+ years trying to raise my testosterone naturally. Tried everything; every supplement, diet, strategy- nothing worked. Even on Trt, I admit I cant seem to get my levels up to where they should be even using the highest dose. As if my body is metabolizing it faster. But im getting no sides. Still, i see improvements so it helps. Funny thing is, i can now tolerate a lot of supplements I wasnt able to before.trt is just one step. Methylation another. Biotin is next. Just got tested for biotinidaze enzymes to see if theres a problem there.
What else does research shows that accutane messes with?
I-ve tested a lot over the years. Total was in upper 200+/low 300+. Free was always below lower range.
Let us know what your biotin test comes back as please that will be interesting
what do you think
https://www.ncbi.nlm.nih.gov/pubmed/15863802 ?
2 hours ago, Neezar said:what do you think
https://www.ncbi.nlm.nih.gov/pubmed/15863802 ?
I know Accutane passes the blood-brain barrier and that Accutane causes side effects in the entire body. Our brain is a delicate organ which is protected by our skull and the blood-brain barrier, which is designed to keep dangerous stuff out. Well, too bad Accutane passes that barrier... There are no large enough randomised, placebo controlled studies to proove the obvious so the medical world doesn't care.
19 hours ago, Trapp said:Im experiencing 0 sexual effects however only 2 weeks in on 40MG I have terrible brain fog and feel spaced out all the time and depressed sometimes during the day will this finish and Ill feel normal once I finish in 3 months??
It is unlikely you will get sexual effects after just 2 weeks, it may take a few months or you may never get them. Be very careful and monitor your symptoms closely. How bad is your acne? Honestly, if you're getting mental side effects like this after just 2 weeks. Seriously consider stopping treatment. Believe me, I speak on behalf of everybody who has long term side effects from this drug. If you are unlucky, you will be dealing with some of those mental side effects, for potentially the rest of your life. If you think clear skin is worth that risk, then go ahead. But don't naively believe doctors/drug labelling when they say all side effects will stop once you finish treatment. Trust me, this isn't always the case.
My thinking, only use Accutane if you have very, very severe acne. Do not risk it for moderate cases. Also make sure you exhaust all other options first. Also, it depends on your age. For most people, acne goes away after puberty. Enduring a few years with acne is really not that bad, and is likely helps you build character. As you have to deal with hardship or something that makes you feel insecure for a few years.
I have been away for a few years and am very happy to see this thread still going. After 3 courses in my teen years for mild/moderate acne I can tell you all that 13 years after my last treatment, things are not going to get better for us. Does anyone have legal knowledge as to what we can do to have a day in court against these crooks? We all need to be compensated to help cover the costs of the health problems you will endure later in life from this poison. Now at 33 I'm having problems with every organ in my body, the newest being ibd, severe GERD, throat problems, and a bulging vein in my neck that doctors cant seem to figure out. Not to mention muscle loss, extreme dry nose, skin, eyes, joints, plus allergies and sinus issues I never had. I have wrinkles and signs of greatly accelerated aging. I literally feel like I will be dead in less than 10 years with how fast Istarted having serious problems over the last 24 months.
Doctors do not listen, will call you a hypochondriac, and sadly, there is way more knowledge on here than from any doctor I've spoken to on the subject. I do not have a family history of any of these problems and information from the internet was not available during my courses like it is today. This is all from the lasting effects of this chemo drug. It's not my intention to damper the progress you all have made on here, and the veteran users of this drug greatly appreciate all the work you are doing to try and find answers and possible solutions. But it's time to hold those accountable who did not disclose the dangers of this drug to mainly kids who just wanted to have clear skin. Keep up the good work and if anyone knows what it would take to have our day in court, I will be the first in line.
Welp @guitarman01today I officially got tested for the AcHr Ganglionic by my kick ass neurologist that wont give up until I feel better. Good doctors are KEY to chronic illness guys.
Thats good. Here is some more info.
There dosent seem to be any false positives, but there can be false negatives. Unfortunately at a rate of 50 percent.
Testing for Autoimmune Disorders
Dysautonomia and Gastrointestinal Dysmotility
https://www.mayomedicallaboratories.com/articles/features/autoimmune/
Mayo Clinic offers autoantibody evaluations that are tailored to detect all currently recognized IgG markers of autoimmune dysautonomia and gastrointestinal (GI) dysmotility. The ganglionic (alpha 3) acetylcholine receptor (AChR) autoantibody is the most commonly detected marker of autoimmune dysautonomia and is sometimes encountered with isolated GI dysmotility. This is the only autoantibody proven to cause dysautonomia, including GI dysmotility. Importantly, cancer is detected in up to 30% of patients with the alpha-3 AChR autoantibody.
Because no more than 50% of patients with idiopathic dysautonomia are seropositive for the ganglionic AChR antibody, even when the dysautonomia is severe and generalized,
Autoimmune GI dysmotility: A new direction
https://www.mayoclinic.org/medical-professionals/clinical-updates/neurosciences/autoimmune-gi-dysmotility-a-new-direction
Although autonomic disease is typically associated with syncope, neuropathy and sweating problems, chronic gastrointestinal (GI) dysmotility also may be a component. Autoimmune GI dysmotility (AGID) is a newly described clinical entity that is a limited manifestation of autoimmune dysautonomia, and can occur as an idiopathic phenomenon. Signs and symptoms include early satiety, nausea, vomiting, bloating, diarrhea, constipation and involuntary weight loss. The onset may be subacute, and neurological manifestations may or may not be an accompaniment.
On 4/10/2018 at 7:13 PM, guitarman01 said:Thats good. Here is some more info.
There dosent seem to be any false positives, but there can be false negatives. Unfortunately at a rate of 50 percent.Testing for Autoimmune Disorders
Dysautonomia and Gastrointestinal Dysmotility
https://www.mayomedicallaboratories.com/articles/features/autoimmune/
Mayo Clinic offers autoantibody evaluations that are tailored to detect all currently recognized IgG markers of autoimmune dysautonomia and gastrointestinal (GI) dysmotility. The ganglionic (alpha 3) acetylcholine receptor (AChR) autoantibody is the most commonly detected marker of autoimmune dysautonomia and is sometimes encountered with isolated GI dysmotility. This is the only autoantibody proven to cause dysautonomia, including GI dysmotility. Importantly, cancer is detected in up to 30% of patients with the alpha-3 AChR autoantibody.
Because no more than 50% of patients with idiopathic dysautonomia are seropositive for the ganglionic AChR antibody, even when the dysautonomia is severe and generalized,
Autoimmune GI dysmotility: A new direction
https://www.mayoclinic.org/medical-professionals/clinical-updates/neurosciences/autoimmune-gi-dysmotility-a-new-direction
Although autonomic disease is typically associated with syncope, neuropathy and sweating problems, chronic gastrointestinal (GI) dysmotility also may be a component. Autoimmune GI dysmotility (AGID) is a newly described clinical entity that is a limited manifestation of autoimmune dysautonomia, and can occur as an idiopathic phenomenon. Signs and symptoms include early satiety, nausea, vomiting, bloating, diarrhea, constipation and involuntary weight loss. The onset may be subacute, and neurological manifestations may or may not be an accompaniment.
Yep! Filled my neurologist in on it. She sat. She listened. (Shes honestly been the greatest) and told me that even if it comes back negative this time that she would test me again at a later date just to put my mind at ease. Hoping something surfaces though.
Also @TrueJusticethe excessive hair growth thing could be pinned to excess protein amounts ... I have high proteins which could be in tandem with high antibodies