Tried to lay out in the sun today and my cheeks and forehead got really red within 20 minutes or so. Never had this before accutane.

Photosensitivity is an immune response isn't it? All of these pieces of the puzzle are starting to come together now. I really think we need more investigation on our immune systems. They're clearly going CRAZY. Can't wait to try prednisone and see if that gives any temporary relief cause then I'll know for sure I'm dealing with immune system problems.

3 hours ago, Chris16 said:

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

What kind ofiodine do you have?

I take the BioCeuticals brand.

I'm not sure on that brand. I was just told to stick with lugols iodine and I know Washer uses the same.

@ACCUiTy_drANEThanks for the copy/paste list of emails. You really couldn't have made that any easier. Thanks for contacting them also.

Here is my statement to PRAC:

Quote

Dear all,

It has recently come to my attention that the European Medicines Agencys PRAC members will be reviewing the safety profile of RoAccutane.

I must convey my deepest regret in ever taking this medication for such a benign condition as acne. The acne would have likely ended as I grew older but there appears to be no way out from RoAccutanes effects. I also plead with you to seriously consider the words of those who have lost loved ones to RoAccutane. It is a small representation of the massive amount of damage done.

An MD at a childrens clinic prescribed me Accutane (in the United States) during 1998 for a moderate case of acne. Acne was a secondary concern, which had little impact on my self-esteem and I was not warned of the potential of severe side effects. It was described as an easy cure and offered during the first visit. Within a few weeks of starting the drug, I began to experience depression (unexplained loss of enjoyment in hobbies and social activities to be specific) and noticed my sexual function was beginning to deteriorate. I had lived with acne for 6 years prior without it affecting my feeling of well-being and no association has ever been made between acne and sexual dysfunction.

My health continued to worsen throughout the first course, leading to fatigue and back and muscle pains in addition to the initial symptoms. After my first course ended, my health gradually improved during several months leading up to a brief second course at a higher dosage since the first failed to cure my acne.
Again, the same symptoms returned during the second course. I became nearly impotent at 18 years old and began thinking of suicide after a few weeks of treatment. The muscle and back pains also returned. I quit the second course short due to a suspicion of Accutane being the cause of these ailments and experienced some fluctuations in the state of my health over the next month, but finally hit rock bottom despite stopping the drug. Of note, the worst of this occurred during the same time my acne cleared.

The symptoms have remained in the 18 years since Accutane. In the beginning, I refused to believe a drug with such atrocious effects would be allowed to be sold to children. I also made the assumption that side effects subside after stopping any medication. I did not report my symptoms to my doctors as side-effects of a drug and looked for other causes for what had happened to me. Terrifying embarrassment prevented me from even mentioning impotence to a doctor until years after it began.

Every practical alternative explanation has been ruled out by dozens of medical specialists and psychiatrists. I will no longer seek treatment because every treatment has failed. I can only describe my life as a living hell being stuck in my own ruined body, and ruined mind, and understand why so many who have claimed similar problems from RoAccutane have taken their own life. Every romantic relationship has been shameful and troubled because of impotence and lack of lust, I have lost jobs and dropped out of college in the early years due to constantly feeling tired and down, and have no real motivation to continue with life without the ability to feel enjoyment from much of anything. Hanging on for hope of a resolution is beginning to seem frivolous after so much time has passed.

RoAccutane is still being prescribed as a first line of treatment against acne in many cases where it is not warranted, the potential of permanent side-effects is ignored, and the risk of sexual dysfunction is not discussed in the patient information leaflet. Perhaps worst of all, after 30+ years on the market, after hundreds of suicides reported worldwide, and after hundreds of thousands of adverse reactions reported, the systemic effects of the drug are still not understood, especially the effects on the human mind. This has provided a convenient catch-all for denying a possible causal relationship to those who are served by that purpose.

I urge you to take appropriate measures to ensure others are properly warned of the potential severity and permanence of RoAccutanes side-effects and address the drastically underreported sexual and reproductive side-effects in some way.

I can only imagine how much better my life would have been if my symptoms were recognized as an adverse reaction and treatment stopped at the first signs of a problem.

Sincerely,

xxxxxx xxxxxx

Please, anyone who really cares, do this!

On 5/14/2017 at 1:14 AM, cnb30 said:

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

I got your back man. To be honest, if I wasn't dealing with clinical depression myself after Accutane, I'd probably share my current music playlists with you (Architects' new album), movie selection, workout routine, food choices, what basically gets me through the day. It's a bit of tough love on here, but it's just how it is. It sucks. I'm hoping to make some progress Q3 and Q4 of this year, I got some tricks up my sleeve, and will share when I hit a breakthrough. But no seriously, if you decide to throw in the towel, make sure you make an impact on Roche's market shares, and while you're doing it yell "Post Hoc fallacy, Post Hoc fallacy". That would be a nice Jackson Pollock painting for sure. Truth and beauty obscured.

In other news, look at this funny article. Roche to move on to Obesity "epidemic" next. Acne frontier already conquered. Couldn't make this up if I tried.

https://seekingalpha.com/article/4072890-obesity-epidemic-roche-bristol-myers-sitting-mighty-prospect?auth_param=1dbct3:1chdg0c:947ed5525ba0d68f712be1bb882739ea&dr=1

@tryingtohelp2014 @guitarman01 @kynarr

Here is another case of someone that *may* have ended up having CFS through Accutane. I am not suggesting that this indeed happened because of Accutane and this hypothesis must be properly evaluated by Medical Professionals :

Snapshot from discussion on Phoenix Rising, a Forum for CFS/ME. Look at the lower red rectangle :

The user "@JaimeS" that i used in my post works for the Openmedicine foundation. Really looking forward for her answer (which i doubt there will ever be one but let's wait and see)

http://forums.phoenixrising.me/index.php?threads/machine-learning-assisted-research-on-cfs.51283/page-2

6 hours ago, mariovitali said:

Here is another case of someone that *may* have ended up having CFS through Accutane. I am not suggesting that this indeed happened because of Accutane and this hypothesis must be properly evaluated by Medical Professionals :

I did get that osteocalcin blood test. will see if that might reveal anything. Should only take a few days for results. I also got a ammonia blood test as well.

12 hours ago, Dubya_B said:

@ACCUiTy_drANEThanks for the copy/paste list of emails. You really couldn't have made that any easier. Thanks for contacting them also.

Here is my statement to PRAC:

Please, anyone who really cares, do this!

Thanks Dubya for all your efforts.

Let me know what you think guys.

On 5/12/2017 at 2:33 AM, guitarman01 said:

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

That's pretty interesting, my gastrointestinal tests showed my strain of beneficial e-coli is completely wiped out. I did get a load of Mutaflor which is a probiotic to re-establish that strain, but after just one capsule it just makes you completely constipated so no mileage with that.

All the discussion on bile acids is very interesting though. It's probably more than a coincidence that Mario was able to mitigate his sides with TUDCA and choline, that 8 tips on accutane video talks about someone curing their sides with TUDCA and choline (via soy lecithin), the common factor amongst 23andme results is also of issues with bile acid synthesis (thanks to mario's trend mapping).

From my personal standpoint I've had pains under my right rib since getting into this mess and had cholesterol showing in my gallbladder on an ultrasound about 5 years back. Last year I had a period where I was having gallbladder attacks, and couldn't eat fat at all without getting extremely ill - x-ray and ultrasound carried out at the end of this period showed all clear, but it was likely a bilary duct obstruction, and more recently I've been having further issues with gallbladder/liver area pains, and pains in right shoulder, tightness on the right side of my chest - all symptoms of having 'gallbladder/bilary sludge'. Seeing the doctor this week, so expect another ultrasound and bloods.

Interestingly at the end of the 10 day or so period last year when I couldn't eat fat (actually ate very little other than cold jacket potato and sauerkraut) after that (which I believe was a blocked bile duct) I was almost completely symptom free for 2 days in terms of sexual sides - the only time in 7 years post tane. Didn't last unfortunately, but may be an indication of where the issues lie.

On 5/16/2017 at 5:11 AM, tanedout said:

Seeing the doctor this week, so expect another ultrasound and bloods.

Well if you can push your doctor for this test (or similar) that Mario had mentioned, you'd maybe be the first. Not sure what labs you have available in your area, but you might be able to google your doctor's affiliated lab and be able to look through their test catalog to give him the exact test and test code if he's not familiar with it. Would maybe take some persuasion, but I would just relate it back to accutane and possible long term effects on the liver.

https://www.labcorp.com/test-menu/21086/bile-acids-fractionated-and-total-lc-ms-ms
Not sure when your going, but If any of my tests come back abnormal,amino acids,Ammonia, or osteocalcin, (which I actually doubt of course) be sure to check back before you go.

Did you have any blood tests in mind you were going to inquire about?

Thismight be worth looking into.

Acetylcholine, phospholipids, autoantibodies, and a word of caution

Acetylcholine and antiphospholipid autoantibodies are seen in various autoimmune and chronic illnesses. It is well know that with Myasthenia Gravis, patients most commonly have autoantibodies against nicotinic acetylcholine receptor (nAChR).A large number of CFS patients may have acetylcholine receptor antibodiesaccording to a studypublished in theInternational Journal of Molecular Medicine.

Dysautonomia and POTS can also be associated with autoantibodies against acetylcholine receptors. Mayo medical laboratories has a very comprehensiveAutoimmune Dysautonomia Evaluationlab test that tests for autoantibodies against acetylcholine receptors and much more.

Antiphospholipid Syndrome (or Hughes syndrome) is an autoimmune condition that can lead to hypercoagulation and blood clots. Conditions such as Lupus, Sjogrens syndrome, Chronic Fatigue Syndrome, and Fibromyalgia are often associated with antiphospholipid antibodies. Antiphospholipid antibodies can even develop in presence of chronic infections such as Hepatitis C, Syphilis, Chlamydia pneumoniae, EBV, HHV-6, Lyme disease, mycoplasma, Q Fever, and many other infections. Antiphospholipid syndrome can be tested for with[Edited link out]

At this time there is insufficient evidence to determine if supplementing lecithin would be beneficial or harmful for those with acetylcholine receptor autoantibodies or antiphospholipid syndrome. More clinical research is needed to understand how lecithin supplementation influences the various autoimmune processes that may exist in these patients.

Whether you are a health expert with experience utilizing choline rich foods or lecithin supplements to treat chronic illness, or a patient using choline to promote your own health, please share your experience below.

hypercoagulation This is why I caution vitamin K. Unless Mario has some more information atm and would like to chime in.

This is the real link. If we still find nothing down the road, this could be a very good, very comprehensive test.
This could be some sort of autoimmune reaction triggered by accutane.

[Edited link out]

Autoimmune Dysautonomia Evaluation, Serum

Useful For

Has anyone had their cortisol levels come back low? I'm going to pick up my blood work tomorrow from my last test and see if cortisol was on there. (Granted one blood test isn't a good representation of adrenal function) 

Just curious about this because once again... haven't caught a single cold in ages.. no stomach bugs... no mucus... nothin. Makes ya wonder 

1 hour ago, Colinboko said:

Has anyone had their cortisol levels come back low? I'm going to pick up my blood work tomorrow from my last test and see if cortisol was on there. (Granted one blood test isn't a good representation of adrenal function)

I had mine tested once in the morning, came back in range. Some other people might have tested low for cortisol, not sure.

This next part is just a in general post, wont let me separate it.

The Key To Vitamin A Metabolism Is Lecithin Retinol Acyltransferase
im sure people have seen this before, not sure who put this on wiki.

Hypervitaminosis A

Treatment[edit]

• Stopping high Vitamin A intake is the standard treatment. Most people fully recover.^[1]
• Phosphatidylcholine(in the form of PPC or DLPC), the substrate for Lecithin retinol acyltransferase, which converts retinol into Retinyl esters (the storage forms of vitamin A).
• Vitamin Emay alleviate hypervitaminosis A.^[32]
• Liver transplantationmay be a valid option if no improvement occurs.^[33]

If liver damage has progressed into fibrosis, synthesizing capacity is compromised and supplementation can replenish PC. However, recovery is dependent on removing the causative agent; stopping high Vitamin A intake.^{[34][35][36][37]}

LRAT is the gene. I might have some mutations at LRAT. They might both be homozygous.

going back to my previous post.

Secondary causes of autonomic neuropathy include:

• Amyloidosis (abnormal protein build-up)
• Autoimmune neuropathies (i.e., Guillain-Barre syndrome, myasthenia gravis, rheumatoid arthritis, Sjogrens syndrome, and systemic lupus erythematosus)
• Carcinomatous autonomic neuropathy (often related to small-cell lung cancer
• Deconditioning (a decrease in function due to inactivity or illness)
• Diabetes and pre-diabetes
• Human immunodeficiency virus (HIV)
• Lyme disease (a disease transmitted by ticks and causing flu-like symptoms)
• Nutritional deficiencies (i.e., vitamins B1, B3, B6, and B12)
• Paraneoplastic syndromes (disorders caused by an immune response to cancer)
• Physical trauma, surgery, pregnancy, or viral illness
• Porphyria (an enzyme disorder that mainly causes skin and/or nerve problems)
• Toxicity (i.e., alcoholism, chemotherapy drugs, and heavy metal poisoning)
• Treatment with medicines, including chemotherapy and anticholinergic drugs

1 hour ago, guitarman01 said:

I had mine tested once in the morning, came back in range. Some other people might have tested low for cortisol, not sure.

This next part is just a in general post, wont let me separate it.

The Key To Vitamin A Metabolism Is Lecithin Retinol Acyltransferase
im sure people have seen this before, not sure who put this on wiki.

Hypervitaminosis A

Treatment[edit]

• Stopping high Vitamin A intake is the standard treatment. Most people fully recover.^[1]
• Phosphatidylcholine(in the form of PPC or DLPC), the substrate for Lecithin retinol acyltransferase, which converts retinol into Retinyl esters (the storage forms of vitamin A).
• Vitamin Emay alleviate hypervitaminosis A.^[32]
• Liver transplantationmay be a valid option if no improvement occurs.^[33]

If liver damage has progressed into fibrosis, synthesizing capacity is compromised and supplementation can replenish PC. However, recovery is dependent on removing the causative agent; stopping high Vitamin A intake.^{[34][35][36][37]}

LRAT is the gene. I might have some mutations at LRAT. They might both be homozygous.

going back to my previous post.

Secondary causes of autonomic neuropathy include:

• Amyloidosis (abnormal protein build-up)
• Autoimmune neuropathies (i.e., Guillain-Barre syndrome, myasthenia gravis, rheumatoid arthritis, Sjogrens syndrome, and systemic lupus erythematosus)
• Carcinomatous autonomic neuropathy (often related to small-cell lung cancer
• Deconditioning (a decrease in function due to inactivity or illness)
• Diabetes and pre-diabetes
• Human immunodeficiency virus (HIV)
• Lyme disease (a disease transmitted by ticks and causing flu-like symptoms)
• Nutritional deficiencies (i.e., vitamins B1, B3, B6, and B12)
• Paraneoplastic syndromes (disorders caused by an immune response to cancer)
• Physical trauma, surgery, pregnancy, or viral illness
• Porphyria (an enzyme disorder that mainly causes skin and/or nerve problems)
• Toxicity (i.e., alcoholism, chemotherapy drugs, and heavy metal poisoning)
• Treatment with medicines, including chemotherapy and anticholinergic drugs

In regard to Hypervitaminosis A
other than Accutane victims who else in society has excess Vit A going on??

Unless you've been living in Antartica and had to survive eating bears or dogs, I don't know who else has an issue with excess Vit A?

A liver transplant hey......fucking mind boggling. This situation we've been put in is criminal and totally unacceptable!!!

I want to rip Roches throat out

This is what you show your doctor to get that test I just mentioned.

Isotretinoin as a Possible Environmental Trigger to Autoimmunity in Genetically Susceptible Patients.

Looking at this exact case, there is a test I missed.

Thyroid-stimulatingImmunoglobulin (TSI) Blood Test

Diagnosis of clinically suspected Graves disease (eg, extrathyroidal manifestations of Graves disease: endocrine exophthalmos, pretibial myxedema, thyroid acropachy) but normal thyroid function tests

9 hours ago, guitarman01 said:

Well if you can push your doctor for this test (or similar) that Mario had mentioned, you'd maybe be the first. Not sure what labs you have available in your area, but you might be able to google your doctor's affiliated lab and be able to look through their test catalog to give him the exact test and test code if he's not familiar with it. Would maybe take some persuasion, but I would just relate it back to accutane and possible long term effects on the liver.

https://www.labcorp.com/test-menu/21086/bile-acids-fractionated-and-total-lc-ms-ms
Not sure when your going, but If any of my tests come back abnormal,amino acids,Ammonia, or osteocalcin, (which I actually doubt of course) be sure to check back before you go.

Did you have any blood tests in mind you were going to inquire about?

Thismight be worth looking into.

Acetylcholine, phospholipids, autoantibodies, and a word of caution

Acetylcholine and antiphospholipid autoantibodies are seen in various autoimmune and chronic illnesses. It is well know that with Myasthenia Gravis, patients most commonly have autoantibodies against nicotinic acetylcholine receptor (nAChR).A large number of CFS patients may have acetylcholine receptor antibodiesaccording to a studypublished in theInternational Journal of Molecular Medicine.

Dysautonomia and POTS can also be associated with autoantibodies against acetylcholine receptors. Mayo medical laboratories has a very comprehensiveAutoimmune Dysautonomia Evaluationlab test that tests for autoantibodies against acetylcholine receptors and much more.

Antiphospholipid Syndrome (or Hughes syndrome) is an autoimmune condition that can lead to hypercoagulation and blood clots. Conditions such as Lupus, Sjogrens syndrome, Chronic Fatigue Syndrome, and Fibromyalgia are often associated with antiphospholipid antibodies. Antiphospholipid antibodies can even develop in presence of chronic infections such as Hepatitis C, Syphilis, Chlamydia pneumoniae, EBV, HHV-6, Lyme disease, mycoplasma, Q Fever, and many other infections. Antiphospholipid syndrome can be tested for withLabCorps Thrombotic Risk Profile.

At this time there is insufficient evidence to determine if supplementing lecithin would be beneficial or harmful for those with acetylcholine receptor autoantibodies or antiphospholipid syndrome. More clinical research is needed to understand how lecithin supplementation influences the various autoimmune processes that may exist in these patients.

Whether you are a health expert with experience utilizing choline rich foods or lecithin supplements to treat chronic illness, or a patient using choline to promote your own health, please share your experience below.

hypercoagulation This is why I caution vitamin K. Unless Mario has some more information atm and would like to chime in.

@guitarman01

Please note the following :

Quote

Regarding MERTK :

"It is known that MERTK/TAM deficient animals show signs of autoimmunity with features resembling certain human autoimmune pathologies including serum autoantobodies against DNA, collagen and antiphospholipid antibodies (e.g anticardiolipin antibodies) and lymphocyte activation and hyperproliferation" [1]

[1] : Vitamin K-Academic Press, Elsevier (2008) - ISBN9780123741134

Regarding hypercoagulation : Needless to say that an expert should be looking at this but since K is abundant in nature , i would expect that the human body is tolerant to it. I do not know however if this holds for people that do have coagulation problems and take warfarin. For those people i would expect that there should be a problem.

Regarding the osteocalcin test : I am not sure that the Genes i listed are all associated with Osteocalcin levels so i would take any normal osteocalcin levels with a grain -or two- of salt.

Anyone try clomid?

On 5/14/2017 at 6:35 PM, cnb30 said:

On 5/14/2017 at 0:53 PM, VanceAstro said:

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

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

That is so true. Wtf is goinng with us?

1 hour ago, mikez said:

Anyone try clomid?

Excuse my ignorance but why would we take clomid??

When googled I'm only seeing it used as a infertility drug?

pls share what you know about it!

5 hours ago, mariovitali said:

Regarding the osteocalcin test : I am not sure that the Genes i listed are all associated with Osteocalcin levels so i would take any normal osteocalcin levels with a grain -or two- of salt.

Yea this isn't really a vitamin k exclusive test, I was also curious about anything possibility abnormal going on with bone turn over as is the case with hypervitaminosis a or as a side effect of accutane.

15 hours ago, guitarman01 said:

Well if you can push your doctor for this test (or similar) that Mario had mentioned, you'd maybe be the first. Not sure what labs you have available in your area, but you might be able to google your doctor's affiliated lab and be able to look through their test catalog to give him the exact test and test code if he's not familiar with it. Would maybe take some persuasion, but I would just relate it back to accutane and possible long term effects on the liver.

https://www.labcorp.com/test-menu/21086/bile-acids-fractionated-and-total-lc-ms-ms
Not sure when your going, but If any of my tests come back abnormal,amino acids,Ammonia, or osteocalcin, (which I actually doubt of course) be sure to check back before you go.

Did you have any blood tests in mind you were going to inquire about?

Yeah did ask about tests for bile acid related stuff, but there aren't any available on the NHS. Interestingly I mentioned about my 23andme results showing some defective genes regards to bile acid synthesis and my doctor didn't even know what 23andme was which surprised me a little! I'm getting an ultrasound on liver/gallbladder and a shed load of bloods, thyroid panel, liver enzymes etc. Expect all these to come back within range, as per usual!

@mariovitaliyou mentioned my 23andme had a number of SNP's regards problems metabolising bile acids - I know one isATP8B1rs10503019, any chance you would be able to let me know the others which are common as I want to be ready with this when I see the doctor again.

Regarding cortisol that someone was mentioning could be low - mine has always come back within range, but at the high end of the range.

This could maybe be something right here, I was actually searching for intrinsic factor relating to b12 but found this instead. They are talking about coagulation.

just got my amino acid blood test back. Normal.