IndigoRush

Repairing the long-term damage from Accutane

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I'm on UDCA now, which I believe messes with the results of liver tests?

Otherwise, I'd be happy to get the usual liver tests. If UDCA doesn't work for me, I'll get them done at some point anyway smile.png

Sasquire, that is the reason why you should get your liver checked now. Even if you do have cholestasis (blockage) , doctor guidance is a must.

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"Fret not fellas. I've got a 145 IQ, zen pain tolerance, the resilience of a cockroach, the survival instincts of a rat. I'll win; it's what I do. And then I'll help all of you, forgetting no one; I swear."

"I did get some fatigue and minor cramps from taste testing spicy food I was cooking. Even though I didn't swallow and rinsed, the residue got me. This hypersensitivity is annoying."

Thus spoke Joseph Buchignani.


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I'm on UDCA now, which I believe messes with the results of liver tests?

Otherwise, I'd be happy to get the usual liver tests. If UDCA doesn't work for me, I'll get them done at some point anyway smile.png

Sasquire, that is the reason why you should get your liver checked now. Even if you do have cholestasis (blockage) , doctor guidance is a must.

From experience, doctors tend to make the same fault as most people, they try and manage the symptoms, and not cure them. However, despite my distrust, it can't hurt to have an opinion other then my own :) We know a doctor more willing to listen to different things so it is something I'll take up.

Who knows... I might get a prescription for UDCA then, and not have to empty my bank account every-time I order it :D

Got a nasty head cold going around at the mo which is disabling my ability to know if any of these news tablets are doing anything XD.

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Again, how much are you paying for UDCA? Is there somehow a difference in price between whether it's prescribed or not?

I cannot recommend Dr. Ohhira's probiotic for those with sensitive stomachs. I had a short and somewhat sharp reaction centered around the pill.

Supposedly this will resolve in a couple of days, but if it doesn't, I'll have lost nearly a week. Screw that. I'll just toss it and try a less gastrically challenging probiotic.

I've taken one more pill this morning, which I expect to resolve itself by 7am tomorrow. If the reaction severity drops, I might consider continuing.

This supports my theory that the improvement in my condition is merely the result of a more correct and rigorously adhered-to coping regimen, rather than any permanent damage reversal. Which is interesting in itself.


Accutane - Brief low-dose course ~2004 for ~4 months. Liver monitored, no sides.

10 years of IBD debilitation followed.  Symptoms: Fatigue, severe IBS-D, gradually shrinking diet, insomnia, depression.  No indication of anything medically wrong.  Took up smoking handrolled tobacco to improve focus at work.  Tried tons of IBS remedies and strategies, to no avail.

A fecal calprotectin test finally revealed the problem - I scored off the scale.  I researched that angle, found LDN, took it for a month or two, and abruptly recovered in March-April 2016.  

I went from being able to eat almost nothing (3 ingredient elimination diet) to being able to eat most things.  Gained back my lost weight (~30 lbs below healthy).  Was able to quit smoking thanks to cessation of chronic pain and fatigue.  

You can get LDN from LDNconsult.com for $2-300 in 1-3 weeks total.  Titrate the dose upwards gradually for at least a month and don't expect results until full strength.  The main side effect is disrupted sleep from too-rapid titration.  It's super safe and should be OTC.  It deepens REM sleep (vivid dreams) and reduces inflammation.  See http://www.lowdosenaltrexone.org/

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I'm in Aussieland which means prescription drugs are much cheaper.

At the mo, I've been ordering my TUDCA/UDCA from America, averaging around $50-$60 per bottle (60 tablets, 250mg). So, yeah. Expensive as hell, especially when I have to try 1g to 2g a day :) However, if any of it works, it's worth it.

Only thing that's good is I'm confident it's legit as I understand many stores aren't with their UDCA.

Currently using Premium Powders TUDCA and also have some Aegis in the mail to try that also. Worth trying a few brands I'm sure to see which is most potent.

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I am currently heavily researching new avenues to speed up the progress. To me one of the critical words to understand in the process of regaining our health is in my eyes the word "methylation". Check out the following link/article. It seems like I am for example an under-methylator, I say this because my reactions to the supplements mentioned in the article are very positive. Many of the supplements in the article/link have been talked about on here as being able to improve our health: zinc, TMG, MSM, Epsom, B6 (which is really critical to me for sleep and recovery, I don't supplement it but get it from my food). Some people don't experience the same benefits from these supplements maybe these people are over-methylators. Check the link to find out more.

http://www.enzymestuff.com/methylation.htm

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I am very sorry to hear about your health problems. I know it must be awful. You feel like no one believes you and no one cares. I have been there before. Not because of Accutane but other health conditions. I really hope you start feeling better.

I did wonder something though. It seems like people will literally blame every health problem they face on Accutane. Even if they took it 20 years ago. As we age we will all start to suffer from health problems even if we took Accutane or not. Don't you think maybe it's just part of life and not specifically the fault of Accutane?

I am not saying that Accutane isn't the cause of some of your problems but all? I think people just jump to conclusions.

I know that all sounds really mean but I just didn't know how else to put it. Years before I started taking the drug I had a constant migraine that I thought was going to be the death of me. Six months I laid in bed while doctors tried to figure out what was wrong with me. They never did. It just went away one day.

I guarantee you that if I had taken Accutane before that happened I would have blamed it on the drug no doubt.

Edited by chaseap01

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For me, I only focus on the symptoms that occurred during or immediately after I was taking accutane.

And even then, I only focus on the ones that bother me the most... I almost completely ignore my dry skin and psoriasis. ;)

I want my brain back. And to do that, I need to be able to digest nutrients again that my body at this time can't. So I'm working on the liver and digestion.

From accutane users, there's usually a general consensus on the damage as we've all got similar symptoms. And a good way of looking at it... some of the symtpons may not be accutane. Say my psoriasis may be another problem. But the damage done by accutane disables my bodies ability to deal with this problem, even though they are unrelated.

Accutane suffers struggle to heal in specific areas. Regardless if the original source.

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I take Biotics iodine, 3 drops morning, afternoon, and night. The RDA is 150mcg, which is disgustingly low, so I up it to where my body feels good. I would start very low though with the RDA of 150mcg, and see how your body feels...I do not recommend it if you have apparent autoimmune thyroid and are already on some type of thyroid meds. I'm going based off of ME, someone who was found to have an alright thyroid...yet as soon as I started taking the iodine my eyes had moisture, my spine and legs felt free and loose, and my skin started glowing and ceased itching. Been the same for 3 weeks now. I'm loving it. Not a cure, but definitely makes life enjoyable for me again. HUGE improvement. that and lithium orotate have been setting me on the right track. Good mood, and good body. Gluten free helps digestion as well, but this girl SUCKS at maintaining it.

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Been using some Kelp Iodine (not sure if it's of equal effectiveness) but my dose has been too low. Will up it and see the effects. Thanks :)

Just started taking Lithium Orotate myself, 25mg a day. Same dosage as yourself?

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.

Edited by MovingOn
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Update on Ohhira's - like clockwork, round 2 came 24 hours after ingestion of second pill. No lessening of intensity - I wish. Never had trouble with a probiotic before, but this one is organic, fermented from vegetable matter, that's why it's a problem for me - I can't eat vegetables. Stupid in hindsight, but I was hoping it would make a big difference where other probiotics hadn't seemed to. Oh well.
$60 for 60 250mg tablets
1-2g / d =
4-8 tabs per day
$4-8 per day
I'm paying less than a quarter of that, without insurance.
I agree Believe, MTHFR gene or whatever runs in my family, methylation might be a common denominator here.
test iodine drops and lithium orotate supplementation
lithium legit for mood, but big sides caution, cuz powerful brain supp
take for a week.
either does nothing or stabilizes/improves mood. reasonably safe, since it doesn't build up in blood like prescription lithium.
methylation supps:
taurine, GABA [both precursors to methyl activity in the brain], folic acid, B12, B6, DMG, TMG (and SAMe)
avoid niacin:?
"Actually excess niacin (B3) is metabolized by methylation and thus uses up methyl groups." So if you are an over-methylator, meaning you have extra, then B3 is good because it uses them up, but if you are an under-methylator, meaning deficient, then giving extra B3 is bad because it drains an already poor supply.
read up here for how to target methylation with supps:
" The other references say that under-methylation results in depression.
The next sentence from Pfeiffer says:
"Typical symptoms include chemical and food sensitivities, underachievement, upper body pain, and an adverse reaction to serotonin-enhancing substances such as Prozac, Paxil, Zoloft, St. John's Wort, and SAMe.""
bottom line, best to test each ingredient one at a time. contradictory info.
oil of oreganol good for congestion and colds, doesn't seem useful for much else. no evidence of morphine claim.
EDIT: Huh, ok, Sdro says it does work for pain. Nice.
Edited by JosephBuchignani
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Accutane - Brief low-dose course ~2004 for ~4 months. Liver monitored, no sides.

10 years of IBD debilitation followed.  Symptoms: Fatigue, severe IBS-D, gradually shrinking diet, insomnia, depression.  No indication of anything medically wrong.  Took up smoking handrolled tobacco to improve focus at work.  Tried tons of IBS remedies and strategies, to no avail.

A fecal calprotectin test finally revealed the problem - I scored off the scale.  I researched that angle, found LDN, took it for a month or two, and abruptly recovered in March-April 2016.  

I went from being able to eat almost nothing (3 ingredient elimination diet) to being able to eat most things.  Gained back my lost weight (~30 lbs below healthy).  Was able to quit smoking thanks to cessation of chronic pain and fatigue.  

You can get LDN from LDNconsult.com for $2-300 in 1-3 weeks total.  Titrate the dose upwards gradually for at least a month and don't expect results until full strength.  The main side effect is disrupted sleep from too-rapid titration.  It's super safe and should be OTC.  It deepens REM sleep (vivid dreams) and reduces inflammation.  See http://www.lowdosenaltrexone.org/

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btw all of your feedback has been so helpful to me. It's interesting to see what everyone is trying and what has worked and what hasn't. Let's keep the focus positive and solution-focused. If it doesn't work for you, don't bash it if it works for someone else. I will get "street" on you if this happens and I will attack your character. I don't play nice, especially when attacked. With that said, I appreciate your feedback hahaha

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Actually, it wasn't such a stupid test. The result is quite unexpected. Taking a vegetable based probiotic was a small risk, granted. But I increased my fat intake without a problem, and that had seemed an hard constraint prior to sufficient UDCA intake.
It's counterintuitive to expect that taking a single vegetable pill, completely fermented to innocuouize, designed for those with gastric difficulties, and with an additional digestive enzyme pill, would cause such an extreme reaction, ruining a 3-5 hour chunk of my day. Yet that is exactly what happened. It seems that Accutane has permanently destroyed my ability to digest all insoluble and/or irritating vegetable matter.
Even the dubious decision to take it two days straight, rather than one day and then waiting to see results, helps confirm that the reaction shows no decrease in severity over time, contrary to advertisement.
Therefore this can't just be a liver problem; it has to be liver plus bowel lining.
Oho, sounds like Sdro has some testosterone of her own. I'm the Eminem of ad hominem; Make RozzyM change her name again.

Accutane - Brief low-dose course ~2004 for ~4 months. Liver monitored, no sides.

10 years of IBD debilitation followed.  Symptoms: Fatigue, severe IBS-D, gradually shrinking diet, insomnia, depression.  No indication of anything medically wrong.  Took up smoking handrolled tobacco to improve focus at work.  Tried tons of IBS remedies and strategies, to no avail.

A fecal calprotectin test finally revealed the problem - I scored off the scale.  I researched that angle, found LDN, took it for a month or two, and abruptly recovered in March-April 2016.  

I went from being able to eat almost nothing (3 ingredient elimination diet) to being able to eat most things.  Gained back my lost weight (~30 lbs below healthy).  Was able to quit smoking thanks to cessation of chronic pain and fatigue.  

You can get LDN from LDNconsult.com for $2-300 in 1-3 weeks total.  Titrate the dose upwards gradually for at least a month and don't expect results until full strength.  The main side effect is disrupted sleep from too-rapid titration.  It's super safe and should be OTC.  It deepens REM sleep (vivid dreams) and reduces inflammation.  See http://www.lowdosenaltrexone.org/

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New side effects reporting website:

http://wp.rxisk.org/about/

Seems as if it a legitimate organization. They were reaching out to some people who had persistent side effects from SSRI medications.


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Hey guys! First of all I'm very sorry to hear Accutane had terrible side effects on all of you. Wish none of you had to go through any of this!
I'm here for an advice, because I'm at the point where Accutane is the last option and nothing really helps my persistent cyctic acne.
Though somehow I feel I would be the one to suffer the consequences from this medication and I'm terrified to take it. Do you think it's possible to foresee if it's gonna happen to me? Maybe some of you, who had been damaged, would recognize these characteristics:
- My skin is dry - the whole body, especially face, back and legs
- I was taking vitamin A supplements and I highly suspect it significantly increased my scarring;
- Hair is falling out massively every time the season changes, very weak and dry as well;
- I need to use lip balsam 24/7 cause my lips get chapped instantly without it;
- Week nerve system.

Did some of you had similar characteristics, took Accutane and had side effects? Do you think they would be even worse if I'm on Accutane?


Diagnosed with PCOS

Occasional acne + rolling scars

Meds:


- Yasmin birth control
- Spironolactone 37,5mg going 25mg
- Inositol powder 2 times/day before meal

Skincare:

- Hemp oil




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short answer, yes. I had dryer skin to begin with. very thin skin. accutane made all of these things worse 10 fold. My advice would be to NOT take that drug. there are other ways to control acne.



honestly it's getting quite frustrating people coming onto this forum and asking this question. read the title.

Edited by MovingOn
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Sorry, I see i made a mistake coming here and asking... thanks for the answer though... Others can ignore my post.


Diagnosed with PCOS

Occasional acne + rolling scars

Meds:


- Yasmin birth control
- Spironolactone 37,5mg going 25mg
- Inositol powder 2 times/day before meal

Skincare:

- Hemp oil




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Hey guys! First of all I'm very sorry to hear Accutane had terrible side effects on all of you. Wish none of you had to go through any of this!

I'm here for an advice, because I'm at the point where Accutane is the last option and nothing really helps my persistent cyctic acne.

Though somehow I feel I would be the one to suffer the consequences from this medication and I'm terrified to take it. Do you think it's possible to foresee if it's gonna happen to me? Maybe some of you, who had been damaged, would recognize these characteristics:

- My skin is dry - the whole body, especially face, back and legs

- I was taking vitamin A supplements and I highly suspect it significantly increased my scarring;

- Hair is falling out massively every time the season changes, very weak and dry as well;

- I need to use lip balsam 24/7 cause my lips get chapped instantly without it;

- Week nerve system.

Did some of you had similar characteristics, took Accutane and had side effects? Do you think they would be even worse if I'm on Accutane?

No I had no similar characteristics before I took Accutane or any of the issues I live with since Accutane. Was a very healthy 32yr old! Yes Accutane will make your existing issue worse! It would NOT be wise in anyway that you ingest Accutane!

Have you had hormones checked? How about your thyroid? You say you have cystic acne are they cyst the color of your skin like sebaceous cysts??? What have you tried for your acne?

Many of the issues you list are things that people who never had these issues suffer with due to Accutane!


The secret of health for both mind & body

is not to mourn for the past, not to worry about the future, or not anticipate troubles, but to live the present moment wisely and earnestly.

The Buddha


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Great site, which is also delivering solid hands on info with regards to supplementation (NAC, milk thistle etc.) which is backed up by research. This guy took accutane as well.

http://www.acneeinstein.com/

Edited by Believe
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Alright, I am glad to see that things have calmed down a bit on this thread! If you want to debate or attack each other then do it here!

The link was designed for debates and attacks between pro Accutane users and suffers. Hard to believe I am suggesting it for suffers!

Indigo didn't create this thread for us to attack each other, New suffers are going to be scared off and not even bother! Don't like what someone says use your block feature or report button!


The secret of health for both mind & body

is not to mourn for the past, not to worry about the future, or not anticipate troubles, but to live the present moment wisely and earnestly.

The Buddha


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Hey guys! First of all I'm very sorry to hear Accutane had terrible side effects on all of you. Wish none of you had to go through any of this!

I'm here for an advice, because I'm at the point where Accutane is the last option and nothing really helps my persistent cyctic acne.

Though somehow I feel I would be the one to suffer the consequences from this medication and I'm terrified to take it. Do you think it's possible to foresee if it's gonna happen to me? Maybe some of you, who had been damaged, would recognize these characteristics:

- My skin is dry - the whole body, especially face, back and legs

- I was taking vitamin A supplements and I highly suspect it significantly increased my scarring;

- Hair is falling out massively every time the season changes, very weak and dry as well;

- I need to use lip balsam 24/7 cause my lips get chapped instantly without it;

- Week nerve system.

Did some of you had similar characteristics, took Accutane and had side effects? Do you think they would be even worse if I'm on Accutane?

No I had no similar characteristics before I took Accutane or any of the issues I live with since Accutane. Was a very healthy 32yr old! Yes Accutane will make your existing issue worse! It would NOT be wise in anyway that you ingest Accutane!

Have you had hormones checked? How about your thyroid? You say you have cystic acne are they cyst the color of your skin like sebaceous cysts??? What have you tried for your acne?

Many of the issues you list are things that people who never had these issues suffer with due to Accutane!

Thanks a lot for your answer, oli girl! <3

Yup, when I read through this thread and the side effects people get, it feels like I'm already on Accutane! That's so weird...

My thyroid is relatively ok, it was processing too little hormones at some time, but my doctor said it's not enough to put me on any medication. I have PCOS and were taking Diane35 + Androcur for a while now, but recently started feeling some pain in my legs (both mom and granny have vein thrombosis on their legs, so I guess I'll have to terminate my treatment... Which is a pity, because 4 months weren't enough to show any improvement on my skin).

Other than that, I went through 3 minocycline courses (which messed my digestion up), serious topicals like Skinoren, Duac and retinoids. I'm thinking to start the acne.org regimen, but my skin is so terribly dry the thought of applying BP on it makes me ache.

On the top of that, I tried to experiment with diets, but basically I'm not sensitive to neither gluten nor dairy.

The cysts are red and painful, recently started leaving deep scars. That's why I'm considering Accutane. My skin was never scarring that badly as it does now, so I need to somehow prevent new cysts...

It's terrible that it had such an effect on you who didn't have issues with dry skin before Accutane! I can only imagine what it would do to me... I would probably have open bleeding wounds from it...

Edited by Pianina

Diagnosed with PCOS

Occasional acne + rolling scars

Meds:


- Yasmin birth control
- Spironolactone 37,5mg going 25mg
- Inositol powder 2 times/day before meal

Skincare:

- Hemp oil




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Hey guys! First of all I'm very sorry to hear Accutane had terrible side effects on all of you. Wish none of you had to go through any of this!

I'm here for an advice, because I'm at the point where Accutane is the last option and nothing really helps my persistent cyctic acne.

Though somehow I feel I would be the one to suffer the consequences from this medication and I'm terrified to take it. Do you think it's possible to foresee if it's gonna happen to me? Maybe some of you, who had been damaged, would recognize these characteristics:

- My skin is dry - the whole body, especially face, back and legs

- I was taking vitamin A supplements and I highly suspect it significantly increased my scarring;

- Hair is falling out massively every time the season changes, very weak and dry as well;

- I need to use lip balsam 24/7 cause my lips get chapped instantly without it;

- Week nerve system.

Did some of you had similar characteristics, took Accutane and had side effects? Do you think they would be even worse if I'm on Accutane?

No I had no similar characteristics before I took Accutane or any of the issues I live with since Accutane. Was a very healthy 32yr old! Yes Accutane will make your existing issue worse! It would NOT be wise in anyway that you ingest Accutane!

Have you had hormones checked? How about your thyroid? You say you have cystic acne are they cyst the color of your skin like sebaceous cysts??? What have you tried for your acne?

Many of the issues you list are things that people who never had these issues suffer with due to Accutane!

Thanks a lot for your answer, oli girl! <3

Yup, when I read through this thread and the side effects people get, it feels like I'm already on Accutane! That's so weird...

My thyroid is relatively ok, it was processing too little hormones at some time, but my doctor said it's not enough to put me on any medication. I have PCOS and were taking Diane35 + Androcur for a while now, but recently started feeling some pain in my legs (both mom and granny have vein thrombosis on their legs, so I guess I'll have to terminate my treatment... Which is a pity, because 4 months weren't enough to show any improvement on my skin).

Other than that, I went through 3 minocycline courses (which messed my digestion up), serious topicals like Skinoren, Duac and retinoids. I'm thinking to start the acne.org regimen, but my skin is so terribly dry the thought of applying BP on it makes me ache.

On the top of that, I tried to experiment with diets, but basically I'm not sensitive to neither gluten nor dairy.

The cysts are red and painful, recently started leaving deep scars. That's why I'm considering Accutane. My skin was never scarring that badly as it does now, so I need to somehow prevent new cysts...

It's terrible that it had such an effect on you who didn't have issues with dry skin before Accutane! I can only imagine what it would do to me... I would probably have open bleeding wounds from it...

If you already went on a couple of minocyline cycles I would not recommend you to try Tane. Check the following link

http://www.acneeinstein.com/minocycline-hyperpigmentation/

Your system is already out of wack from the minocyclin, if your body was not able to recover properly from mimo, tane will add to that and it is not going to be pretty long term, trust me. I had a friend who took both and he is a wreck.

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