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11 hours ago, Gunnersup said:

Just got diagnosed with Lichen Planopilaris today. Kinda depressing but atleast I have a supportive dermatologist ready to prescribe me meds


if I were you I would get a second opinion as sometimes doctors can misdiagnose and a second opinion would confirm or state otherwise.

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9 hours ago, Ronnie99 said:


if I were you I would get a second opinion as sometimes doctors can misdiagnose and a second opinion would confirm or state otherwise.

No, I've figured I had this for a few months now. She knew instantly what it was, I didn't even mention it. The number one reason she knew is due to how 20% of my hairs are super miniturizized and have a condition called "Pili Torti", in which the hair shaft twists irregularaly in a deformed like manner, which is only seen in Lichen Planopilaris. Not to mention my scalp acne and zits

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Recently I started feeling an intense pain in my left shoulder. I had to get an injection for it to go away and days later it’s still there in less intensity, and 24/7. I can’t move the arm or do things like changing a t-shirt without asking for help.

https://www.verywellhealth.com/shoulder-pain-2548793

After taking several blood tests the only abnormal results were, so far:

Aspartate transaminase (AST), alanine transaminase (ALT)

Lab range for the 1st between 13 and 39 (I measured 47 this time - previous tests 26 and 23), and the latter 86 (lab range between 7 and 52, previous tests showed 28 and 20).

And C reactive protein at 6.9 when it should be below 5 ( previous result 1.1, a year ago).

Plus eosinophil count. I measured 9% and 640 (lab range: 1 to 5% and 40 to 500).

Vitamin D levels at 50 because I am taking 4000 IU with K-2 (Mk7, 100 mcg) daily since April. Calcium is within the lab range, so no hypercalcemia. I also take a multivitamin, coq10, ZMA, fish oil... and follow a keto diet.

The only downside to my lifestyle is that I have been spending most days at home and in a chair using a PC, ever since March when I stopped going to a gym, plus recently I started sleeping late in the evening, and waking late, and also adding some carbs (and unhealthy carbs) like pizza... some people say I might have bursitis since this is my only symptom, but I find hard to believe something so debilitating could happen all of sudden under all these conditions. I’ll do an ultrasound OCT 30.

I did the accutane treatment many years ago, I believe the dosage was 20 mg, in 2011. And ever since then I never noticed anything wrong in terms of bones/muscles. However we all know this drug can cause a myriad of issues, some reported to last forever. Still, I believe this has to be some infection, at first I thought about COVID...

What do you think? What were your experiences with these sorry situations?

If this was self inflicted (my fault) then in theory it should resolve in time, and when diet/supplementation (I am adding ashwagandha, boron and collagen type II with liposomal vitamin C, plus turmeric and black pepper capsules to see if it makes a difference) are corrected... plus I was about to try intermittent fasting.

it’s just that in a million years I would never have expected this to happen. Really, you feel agonizing pain 24/7. It’s so bad that you have to get out of bed and sleep less because just lying there hurts even more.

Edited by Perene
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3 hours ago, TrueJustice said:

Does anyone know if Accutane is linked to Hydrocephalus?

Think I need a referral for a neurologist 

Im going to see a neurologist in November.

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10 hours ago, Perene said:

Recently I started feeling an intense pain in my left shoulder. I had to get an injection for it to go away and days later it’s still there in less intensity, and 24/7. I can’t move the arm or do things like changing a t-shirt without asking for help.

https://www.verywellhealth.com/shoulder-pain-2548793

After taking several blood tests the only abnormal results were, so far:

Aspartate transaminase (AST), alanine transaminase (ALT)

Lab range for the 1st between 13 and 39 (I measured 47 this time - previous tests 26 and 23), and the latter 86 (lab range between 7 and 52, previous tests showed 28 and 20).

And C reactive protein at 6.9 when it should be below 5 ( previous result 1.1, a year ago).

Plus eosinophil count. I measured 9% and 640 (lab range: 1 to 5% and 40 to 500).

Vitamin D levels at 50 because I am taking 4000 IU with K-2 (Mk7, 100 mcg) daily since April. Calcium is within the lab range, so no hypercalcemia. I also take a multivitamin, coq10, ZMA, fish oil... and follow a keto diet.

The only downside to my lifestyle is that I have been spending most days at home and in a chair using a PC, ever since March when I stopped going to a gym, plus recently I started sleeping late in the evening, and waking late, and also adding some carbs (and unhealthy carbs) like pizza... some people say I might have bursitis since this is my only symptom, but I find hard to believe something so debilitating could happen all of sudden under all these conditions. I’ll do an ultrasound OCT 30.

I did the accutane treatment many years ago, I believe the dosage was 20 mg, in 2011. And ever since then I never noticed anything wrong in terms of bones/muscles. However we all know this drug can cause a myriad of issues, some reported to last forever. Still, I believe this has to be some infection, at first I thought about COVID...

What do you think? What were your experiences with these sorry situations?

If this was self inflicted (my fault) then in theory it should resolve in time, and when diet/supplementation (I am adding ashwagandha, boron and collagen type II with liposomal vitamin C, plus turmeric and black pepper capsules to see if it makes a difference) are corrected... plus I was about to try intermittent fasting.

it’s just that in a million years I would never have expected this to happen. Really, you feel agonizing pain 24/7. It’s so bad that you have to get out of bed and sleep less because just lying there hurts even more.

My father took accutane 20+ years ago and comes across pain like this frequently. He actually had the shoulder pain just as you described a few weeks ago. He said steroid Injections treated it

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6 hours ago, Gunnersup said:

My father took accutane 20+ years ago and comes across pain like this frequently. He actually had the shoulder pain just as you described a few weeks ago. He said steroid Injections treated it

I did more blood tests today... This one:
https://www.mayoclinic.org/tests-procedures/sed-rate/about/pac-20384797
https://en.wikipedia.org/wiki/Erythrocyte_sedimentation_rate

Measured 65mm (lab range: no more than 15mm up to 50 years old). However rheumatoid factor was 5,0 UI/mL (lab range: less than 20). Still waiting for Anti-cyclic citrullinated peptide (anti-CCP) antibodies. Creatine kinase low, 42 (lab range 24 - 195). Alkaline phosphatase also OK. So far I am only seeing in the results inflammation. So this is it? All of sudden, for the first time in your life, you get this debilitating pain that lasts for several days? And if by steroid injection you mean the same thing I got, then I must say only the pain is reduced, the problem is stil there (and some say there are bad side effects with repeated use) and over time the pain comes back somehow (the effects don't last long and/or all the time).

The worst moment of the day is when I go to sleep, in there the arm bothers me no matter what. I hope with the changes I am implementing this can be resolved shortly, and the ultrasound helps me. All this time I thought this was COVID-19.

If I catch COVID now I'll certainly die, because some people recover from it, now this bursitis, arthritis or whatever it is, it's dreadful, no indication this would have happened, ever. No doubt I'll take months to recover from this.

Edited by Perene
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On 10/26/2020 at 10:26 PM, Ronnie99 said:

Im going to see a neurologist in November.

Interesting today with kinesiologist. Asked him if it’s possible I have hydrocephalus?

Not a bad question in my book given the head tension many of us suffer post tane. He thinks not but actually found something interesting today in how I’m processing Vit B2. Long story short he thinks the brain fog and tension is more lactic acid in the head, something I’d never considered before 

We did some body adjustment in the mouth and jaw and he’s very interested to see how I go with this over the next 4 weeks till next appointment 

The last thing I’d want is hydrocephalus- not easy to correct, in fact very invasive with drilling into the scull basically to relieve excess spinal fluid, he’s hoping it’s just lactic acid at play 

Edited by TrueJustice
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9 hours ago, TrueJustice said:

Interesting today with kinesiologist. Asked him if it’s possible I have hydrocephalus?

Not a bad question in my book given the head tension many of us suffer post tane. He thinks not but actually found something interesting today in how I’m processing Vit B2. Long story short he thinks the brain fog and tension is more lactic acid in the head, something I’d never considered before 

We did some body adjustment in the mouth and jaw and he’s very interested to see how I go with this over the next 4 weeks till next appointment 

The last thing I’d want is hydrocephalus- not easy to correct, in fact very invasive with drilling into the scull basically to relieve excess spinal fluid, he’s hoping it’s just lactic acid at play 


Yes I beleive the neurologist will provide tests for that to confirm. Hopefully it is lactic acid. 

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Hi everyone,

I've been reading quite a bit of this thread. Obviously I am here because Accutane damaged me. The thing is, my problems are localized entirely to my skin, while it seems most people here are having much tougher issues. I'm going to tell you what it's done to me. I have been off Accutane for 7 months and the problems seem to be increasing.

My lips are destroyed. They are constantly peeling, constantly dry, but more importantly there's massive inflammation and swelling around them at all times. I am essentially disfigured now. Sometimes even drinking water burns them. Sometimes they burn for seemingly no reason at all!

My skin is dry, but that's not all. Besides the wrinkles and prematurely aged look, I also now suddenly get dermatitis, psoriasis, and eczema. I wake up with random spots on me, and can get dermatitis even from my jacket.

I am always itchy, especially the neck and chest. My neck skin is definitely thin, and starting to sag. I am only 36.

My hair is bone dry of course as well.

When I wake up there's imprints from my sheets or pillow cases that last an hour. Even putting my hands in my pockets leaves marks on my hands for that long. If I scratch an itch the red mark lasts the same amount of time.

It's clear to me that my skin doesn't function anymore. It can't condition or protect itself. I look like I've aged a decade in 7 months.

Of course, I didn't even have acne and had a very terrible derm, but that's another story and not helpful to repeat.

My question to you guys is, has anybody been able to fix these relatively (not to me but in the scope of what could have happened) minor issues? Most of the chatter I see involves mental health and digestive issues. 

I really don't want to go around the rest of my life with fucked up lips. My self confidence is already destroyed, and now I'm basically suicidal because I know nobody is ever going to admit what happened to me, let alone actually help me. I really don't want to watch myself deteriorate anymore.

 

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11 hours ago, MideonNViscera said:

Hi everyone,

I've been reading quite a bit of this thread. Obviously I am here because Accutane damaged me. The thing is, my problems are localized entirely to my skin, while it seems most people here are having much tougher issues. I'm going to tell you what it's done to me. I have been off Accutane for 7 months and the problems seem to be increasing.

My lips are destroyed. They are constantly peeling, constantly dry, but more importantly there's massive inflammation and swelling around them at all times. I am essentially disfigured now. Sometimes even drinking water burns them. Sometimes they burn for seemingly no reason at all!

My skin is dry, but that's not all. Besides the wrinkles and prematurely aged look, I also now suddenly get dermatitis, psoriasis, and eczema. I wake up with random spots on me, and can get dermatitis even from my jacket.

I am always itchy, especially the neck and chest. My neck skin is definitely thin, and starting to sag. I am only 36.

My hair is bone dry of course as well.

When I wake up there's imprints from my sheets or pillow cases that last an hour. Even putting my hands in my pockets leaves marks on my hands for that long. If I scratch an itch the red mark lasts the same amount of time.

It's clear to me that my skin doesn't function anymore. It can't condition or protect itself. I look like I've aged a decade in 7 months.

Of course, I didn't even have acne and had a very terrible derm, but that's another story and not helpful to repeat.

My question to you guys is, has anybody been able to fix these relatively (not to me but in the scope of what could have happened) minor issues? Most of the chatter I see involves mental health and digestive issues. 

I really don't want to go around the rest of my life with fucked up lips. My self confidence is already destroyed, and now I'm basically suicidal because I know nobody is ever going to admit what happened to me, let alone actually help me. I really don't want to watch myself deteriorate anymore.

 


Did you go see a couple dermatologists to get there opinion ?

 


Has anybody got there Thyroid numbers checked, I have read that if the thyroids tests seem normal then try to test Reverse T3 and see if it is raised. My was high, meaning there could be potential hypothyroidism ?

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Well, my original derm just flat out said it's impossible to be because of Accutane because it's out of my system within "a couple weeks". 

Tuesday I see a new derm, but I don't have a lot of hope because it seems none of them are willing to talk poorly about Accutane. If they won't accept the cause, they can't really help fix it. 

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10 hours ago, MideonNViscera said:

Well, my original derm just flat out said it's impossible to be because of Accutane because it's out of my system within "a couple weeks". 

Tuesday I see a new derm, but I don't have a lot of hope because it seems none of them are willing to talk poorly about Accutane. If they won't accept the cause, they can't really help fix it. 

Ask them if it’s out of my system why don’t I get acne anymore. That pretty much stumps them

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It could be argued it has indeed left the system long ago

That the reason we don’t get acne any more is that it has dried out the sebaceous glands hence less oil.

Would have been good though if this was all worked out 40 years ago before it was ever put on the market - unfortunately we’ve all just been guinea pigs really 

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I talked to a dermatologist about my skin issues post isotretinoin and she just dismissed the isotretinoin part and acted like it was all a coincidence. I'm thinking about getting on TRT or something to get back sebum production. Any thoughts on that? 

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I found this week what caused my issue (severe left shoulder pain): supplementing with 4000 IU (twice the max daily intake recommended by the European Food Safety Authority, check this PDF) vitamin D-3 (was also taking 100 Mcg K-2 MK-7) causes hypercalcemia especially if you are taking dairy often and also some crap almond milk with enriched calcium, which was my case, tricalcium phosphate was the name of the poison in the list of ingredients.

My problem was described in the ultrasound test as "calcific tendinitis of the subscapularis tendon. Supraspinatus tendinopathy". Since this is a veeeeeeeeeery long explanation I'll just leave this link here with my full comment on that, posted in another forum.

Now that I have stopped with the D-3 for good (not K-2, I'll take this one and double the current dose to 200 Mcg, also with 10 mg lutein and 2 mg zeaxanthin, good for the eyes) and cut dairy and nut-milk, and added a few stuff more like type II collagen, boron, vitamin C and looking to increase magnesium consumption, things will resolve in a while. So far 70-80% of the pain/discomfort is gone. 3 months from today I'll do more blood tests and if possible another ultrasound to check things again. When I stopped taking D-3 for a year my levels plummeted to 30's (note: my first test measured 26, before I started taking for the 1st time).

Ideal levels, however, are achieved with 2000 IU and within a few months, I remember I once took and 90 days later D levels were in the 40's. With an increase in testosterone, which always happens due to D-3 increased levels in the blood.

Back in March, 1 month before I started taking 4000, it was already higher than ever the total T, but free T I always feel it's still low, 8.9 within a lab range that goes to 24. SHBG is always high, too, within the lab range. LH within lab range, yet low, and prolactin always high (20's, for a man it should be below 13). Estradiol it should be less than 33, yet numbers like 10, 13, are low for me (note: low estrogen means low libido, too).

It looks like a lot of stuff needs to be tried and changed to continue checking if Accutane hasn't killed sex drive and messed with hormones forever. Permanent sexual dysfunction seems to be the case according to a few reports. I also measured low DHT.

Edited by Perene
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On 11/2/2020 at 2:37 AM, MideonNViscera said:

Well my question is fairly simple. Has anybody ever figured out how to improve the skin related permanent side effects?


Have you checked your thyroid levels, your TSH maybe within range but its important to check the Revers T3 numbers ?

Has anybody properly checked there thyroid levels, most would go to the doctor and check TSH and if within range they would say your thyroid is functioning properly. They main component to test is the reverse T3 and see if it is high, people with Hypothyrodism have hight Reverse T3 levels but have normal TSH levels which can indicate we have very similar symtpoms with Hypothyroidism ?

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On 11/1/2020 at 3:37 PM, MideonNViscera said:

Well my question is fairly simple. Has anybody ever figured out how to improve the skin related permanent side effects?

Copper bisglycinate 2mg per day seemed to greatly help skin thinning issues for me (mental ones too).. certainly had a headache with that a few years ago. Gelatin could be helpful too by providing aminos needed for collagen (also contains a bit of copper). Also IIRC vitamin C plays a role there too.

Had recurrent angular cheilitis(corners of mouth disintegrating) although onset was a few years post tane, I only managed to clear up by applying bioactive yoghurt to the areas and leaving it for a while, perhaps overnight for a couple of days.. would reoccur once a year or so and get progressively worse till treated, I believe it stopped coming back after the 4th occurrence/treatment. Don't know if that would be helpful for your situ.. but just in case.

When I was on a vitamin A depletion diet I wanted to try speed up the process of elimination and decided to experiment with high dose taurine due to the high possibility that it binds to retinol for excretion. I decided to do this after experimenting with high dose taurine and glycine for some other purpose (easy to add bulk powder to coffee) I found that my lips became sore and were peeling in the way they would whilst on accutane.. this continued for a few days and then lips returned to normal. I had used both plenty prior to this but at lower doses. I believe the effect was initially achieved with around 6g taurine and 10g glycine(I'm sure I did this more than once per day but caution as there is an upper limit to the amount of glycine that can be taken safely without causing toxicity issues and I believe after some experimentation I found the high dose taurine to be the key factor). Have taken taurine 5g 3 times a day upon occasion(at a later date) trying to achieve other goals(reversing fibrosis/lowering ammonia) and consider that a safe dose for the short term.

Digestion/gut issues can play a role with skin issues too (mal-absorbtion of nutrients needed for skin health, sibo), small things like a good multi-b might help to sure up any deficiency there..

Just some ideas, hope something is helpful and you manage to get a handle on it quickly.

Edited by Warrah
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On 11/2/2020 at 9:33 AM, MideonNViscera said:

I don't have any thought on that, but I will let you know what they say at my appointment tomorrow. Hopefully they at least listen.

Sorry Pido, I don't have anything else to add. This dermatologist didn't even let me speak.

12 hours ago, Warrah said:

Copper bisglycinate 2mg per day seemed to greatly help skin thinning issues for me (mental ones too).. certainly had a headache with that a few years ago. Gelatin could be helpful too by providing aminos needed for collagen (also contains a bit of copper). Also IIRC vitamin C plays a role there too.

Had recurrent angular cheilitis(corners of mouth disintegrating) although onset was a few years post tane, I only managed to clear up by applying bioactive yoghurt to the areas and leaving it for a while, perhaps overnight for a couple of days.. would reoccur once a year or so and get progressively worse till treated, I believe it stopped coming back after the 4th occurrence/treatment. Don't know if that would be helpful for your situ.. but just in case.

When I was on a vitamin A depletion diet I wanted to try speed up the process of elimination and decided to experiment with high dose taurine due to the high possibility that it binds to retinol for excretion. I decided to do this after experimenting with high dose taurine and glycine for some other purpose (easy to add bulk powder to coffee) I found that my lips became sore and were peeling in the way they would whilst on accutane.. this continued for a few days and then lips returned to normal. I had used both plenty prior to this but at lower doses. I believe the effect was initially achieved with around 6g taurine and 10g glycine(I'm sure I did this more than once per day but caution as there is an upper limit to the amount of glycine that can be taken safely without causing toxicity issues and I believe after some experimentation I found the high dose taurine to be the key factor). Have taken taurine 5g 3 times a day upon occasion(at a later date) trying to achieve other goals(reversing fibrosis/lowering ammonia) and consider that a safe dose for the short term.

Digestion/gut issues can play a role with skin issues too (mal-absorbtion of nutrients needed for skin health, sibo), small things like a good multi-b might help to sure up any deficiency there..

Just some ideas, hope something is helpful and you manage to get a handle on it quickly.

Thanks a lot for all of that. You're the most helpful person I have found.

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On 11/4/2020 at 5:31 AM, Warrah said:

When I was on a vitamin A depletion diet I wanted to try speed up the process of elimination and decided to experiment with high dose taurine due to the high possibility that it binds to retinol for excretion. I decided to do this after experimenting with high dose taurine and glycine for some other purpose

Hey @Warrah  How long did you make on the low VA diet?

2 years tomorrow for me, and still seeing positive progress.  Depleting stored VA from liver and fat tissues takes a long time.    Supplements I continue to experiment with(part of VA excretion pathways): Alli-B1, Vit K, Taurine, and Molybdenum.

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I guess no one wants to follow the activation path with supplementing?

You can take all the B vitamins or any vitamin you want, doesn’t mean it’ll necessarily be working correctly all the time, sometimes it will, other times it won’t. I recently found an issue with Vit B2 in particular and had to have some corrections and adjustments done anatomically to help activate it. B2 plays a major role in stomach acid production amongst other things. 

I can’t be the only one surely who has to factor this in post tane....just saying 

See a good kinesiologist who knows how to connect all the dots!!

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