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Repairing the long-term damage from Accutane

 
MemberMember
7
(@girlie)

Posted : 10/01/2012 9:38 am

IndigoRush

 

You're so cute!!

 

and you got a great personality too!

 

and your teeth r sooo white!

 

Great info and thanks for sharing.

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2
(@jamie10)

Posted : 10/01/2012 11:03 am

Hi everyone,

 

I have posted here before about problems I suffer with post tane. I saw a great GP the other day and he thinks there could be some neuropathic problems which explain my symptoms (see below information about them). He prescribed me gabapentin which helps block out sensations. I will be trying them to see how I get on and to see if it is indeed neuropathy. I could then perhaps see a specialist to determine more long term solutions but he said gabapentin would help determine the cause.

 

I just thought I would point this out to some!

 

Has anyone tried cannabis oil? I heard that is good stuff for neuropathic pain, but I can't find any anywhere online? Anyone know where I can get some?

 

Thanks

 

_______

 

Almost every day, maybe once or twice, I get weird sensations in my face, lips, eyes and what feels like my scalp or just inside the skull...

My eyes actually get a bit blood shot so I think it is flushing, but my face does not seem to get red so not sure. I can't figure it out, it is not dryness because it comes for about an hour or a few hours and then fades away and I feel 'normal' (my version of normal feeling after accutane anyway) again.

Anyone know what may be causing this? What do you guys do to deal with any such symptoms? I am thinking it could be some form of allergy...

Cheers

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2
(@suffering12345)

Posted : 10/01/2012 3:13 pm

Ok guys this is an update i have new symptons and i want to know if you know what the problem is

 

Weak erections and loss of sensation. also no morning erections

A bit of body numbness everywhere especially scalp , face , hands , feet , penis skin - really numb skin

Hair thinning all over my body including pubes

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MemberMember
8
(@dthtodrmtlgsts)

Posted : 10/02/2012 5:32 am

Ok guys this is an update i have new symptons and i want to know if you know what the problem is

 

Weak erections and loss of sensation. also no morning erections

A bit of body numbness everywhere especially scalp , face , hands , feet , penis skin - really numb skin

Hair thinning all over my body including pubes

 

 

What did the doc tell you today? How long was it since you quit? the first months after accutane was the worst for me. Other than that it sounds like how i felt when the asshole docs had me on valium.

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MemberMember
2
(@suffering12345)

Posted : 10/02/2012 8:54 am

been to the docs and i told him everything and he still thinks that its all in my head because when i went last time i told him i think it was accutane and he said there has been literature research and theres no proof that it has cause sexual problems. I have a cbt thing with my council and i guess il give that a shot and tell them what i think and all that then il see wat they do. atm it sucks. i quit accutane 6 month course on july 20th

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5
(@bosnic)

Posted : 10/02/2012 10:16 am

Vitamin D supplementation helps tremendously with joint pain. Interestingly Vitamin A works to remove minerals from the bones, and vitamin D acts to bind them to bones. It's this balance that optimizes bone regeneration, restructuring, and overall bone health.

Vitamin A info:

http://www.westonapr...trial#dprotects

http://jn.nutrition..../7/929.full.pdf

Accutane info (Do Ctrl-F and search for "Accutane"):

[Edited link out]

I encourage everyone to read these. There is an interaction with Vitamin A/Retionoic Acid and Vitamin D in terms of gene signalling. I've been supplementing with 10,000 IU of Vitamin D3 daily (in liquid drop form, because the oil increases bioavailability), and have been feeling much better.

I'm still very sensitive to Vitamin A. I strongly believe it's a problem with gene signalling. And now I'm researching possible ways to reverse it. One thing I thought of (although not backed by any science) would be to supplement strongly with ALL fat-soluble vitamins, EXCEPT vitamin A. This includes Vitamin D, E, K (Vit. D3, Vit E. must be mixed tocopherols, and Vit. K2). Along with this, getting plenty of sunlight because only this offers the full spectrum of vitamin D metabolites. The more I research the more I see that there is a relationship between many of these vitamins, interms of absorption and gene signalling.

girlie liked
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MemberMember
148
(@oli-girl)

Posted : 10/02/2012 4:18 pm

been to the docs and i told him everything and he still thinks that its all in my head because when i went last time i told him i think it was accutane and he said there has been literature research and theres no proof that it has cause sexual problems. I have a cbt thing with my council and i guess il give that a shot and tell them what i think and all that then il see wat they do. atm it sucks. i quit accutane 6 month course on july 20th

 

 

Get a new Doc! I agree don't talk about Accutane! I think due to the sexual dysfunction that it may be hormonal. Nueropathy type issues and numbness can be found in some hormonal/endocrine issues. I am no doc though. There is a thread on here I will have to try and look that may help you find an answer to what you might be suffering from. Give me a day or so and I will try and find it, yet it soo hard with this new board to search and find things.

 

 

Hi everyone,

 

I have posted here before about problems I suffer with post tane. I saw a great GP the other day and he thinks there could be some neuropathic problems which explain my symptoms (see below information about them). He prescribed me gabapentin which helps block out sensations. I will be trying them to see how I get on and to see if it is indeed neuropathy. I could then perhaps see a specialist to determine more long term solutions but he said gabapentin would help determine the cause.

 

I just thought I would point this out to some!

 

Has anyone tried cannabis oil? I heard that is good stuff for neuropathic pain, but I can't find any anywhere online? Anyone know where I can get some?

 

Thanks

 

_______

 

Almost every day, maybe once or twice, I get weird sensations in my face, lips, eyes and what feels like my scalp or just inside the skull...

My eyes actually get a bit blood shot so I think it is flushing, but my face does not seem to get red so not sure. I can't figure it out, it is not dryness because it comes for about an hour or a few hours and then fades away and I feel 'normal' (my version of normal feeling after accutane anyway) again.

Anyone know what may be causing this? What do you guys do to deal with any such symptoms? I am thinking it could be some form of allergy...

Cheers

 

 

Had the same thing for about a yr or a little more, found out I was severly iron defcient and B12, taking theese helped with the wierd sensations! Let us know how the Gabapentin works!

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MemberMember
7
(@girlie)

Posted : 10/02/2012 10:52 pm

On 10/2/2012 at 11:16 PM, Bosnic said:

Vitamin D supplementation helps tremendously with joint pain. Interestingly Vitamin A works to remove minerals from the bones, and vitamin D acts to bind them to bones. It's this balance that optimizes bone regeneration, restructuring, and overall bone health.

Vitamin A info:

http://www.westonapr...trial#dprotects

http://jn.nutrition..../7/929.full.pdf

Accutane info (Do Ctrl-F and search for "Accutane"):

[Edited link out]

I encourage everyone to read these. There is an interaction with Vitamin A/Retionoic Acid and Vitamin D in terms of gene signalling. I've been supplementing with 10,000 IU of Vitamin D3 daily (in liquid drop form, because the oil increases bioavailability), and have been feeling much better.

I'm still very sensitive to Vitamin A. I strongly believe it's a problem with gene signalling. And now I'm researching possible ways to reverse it. One thing I thought of (although not backed by any science) would be to supplement strongly with ALL fat-soluble vitamins, EXCEPT vitamin A. This includes Vitamin D, E, K (Vit. D3, Vit E. must be mixed tocopherols, and Vit. K2). Along with this, getting plenty of sunlight because only this offers the full spectrum of vitamin D metabolites. The more I research the more I see that there is a relationship between many of these vitamins, interms of absorption and gene signalling.

Hi there bosnic

I agree!

I have been taking vit d supplements 2,000 per day and feel great!

My SD is almost non existent now !!

energy is great, skin better, mood better

altho chico had mentioned to be careful with vit d cos its not removed from the body, but accumulates, just like what accutane did.

but that doesnt sit right with me. altho chico is talking about the vit d supps, not the sun.

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MemberMember
8
(@dthtodrmtlgsts)

Posted : 10/03/2012 3:09 am

On 10/2/2012 at 11:16 PM, Bosnic said:

Vitamin D supplementation helps tremendously with joint pain. Interestingly Vitamin A works to remove minerals from the bones, and vitamin D acts to bind them to bones. It's this balance that optimizes bone regeneration, restructuring, and overall bone health.

Vitamin A info:

http://www.westonapr...trial#dprotects

http://jn.nutrition..../7/929.full.pdf

Accutane info (Do Ctrl-F and search for "Accutane"):

[Edited link out]

I encourage everyone to read these. There is an interaction with Vitamin A/Retionoic Acid and Vitamin D in terms of gene signalling. I've been supplementing with 10,000 IU of Vitamin D3 daily (in liquid drop form, because the oil increases bioavailability), and have been feeling much better.

I'm still very sensitive to Vitamin A. I strongly believe it's a problem with gene signalling. And now I'm researching possible ways to reverse it. One thing I thought of (although not backed by any science) would be to supplement strongly with ALL fat-soluble vitamins, EXCEPT vitamin A. This includes Vitamin D, E, K (Vit. D3, Vit E. must be mixed tocopherols, and Vit. K2). Along with this, getting plenty of sunlight because only this offers the full spectrum of vitamin D metabolites. The more I research the more I see that there is a relationship between many of these vitamins, interms of absorption and gene signalling.

On 10/2/2012 at 11:16 PM, Bosnic said:

Vitamin D supplementation helps tremendously with joint pain. Interestingly Vitamin A works to remove minerals from the bones, and vitamin D acts to bind them to bones. It's this balance that optimizes bone regeneration, restructuring, and overall bone health.

Vitamin A info:

http://www.westonapr...trial#dprotects

http://jn.nutrition..../7/929.full.pdf

Accutane info (Do Ctrl-F and search for "Accutane"):

[Edited link out]

I encourage everyone to read these. There is an interaction with Vitamin A/Retionoic Acid and Vitamin D in terms of gene signalling. I've been supplementing with 10,000 IU of Vitamin D3 daily (in liquid drop form, because the oil increases bioavailability), and have been feeling much better.

I'm still very sensitive to Vitamin A. I strongly believe it's a problem with gene signalling. And now I'm researching possible ways to reverse it. One thing I thought of (although not backed by any science) would be to supplement strongly with ALL fat-soluble vitamins, EXCEPT vitamin A. This includes Vitamin D, E, K (Vit. D3, Vit E. must be mixed tocopherols, and Vit. K2). Along with this, getting plenty of sunlight because only this offers the full spectrum of vitamin D metabolites. The more I research the more I see that there is a relationship between many of these vitamins, interms of absorption and gene signalling.

I also have been feeling much greater after supplementing liquid vitamin d3. But my advancements stopped and i actually started feeling funny(not in the good way anymore) when i took more. On testing my bloodleves now were in the upper field of the range. 127 or something.

BUT the articles you link to are very interesting, especially the last one state that Accutane is NOT vitamin A, and that we infact should take vitamin A. And that there actually is a doctor who have prescribed vitamin A with good results after accutane!. THAT is very interesting, a "physician" that does not deny everything and actually has some theories on this!!, even the balls to do something out of the doctors ordinary bullshit routine!! I have not dared supplementing vitamin A, my eyesight sure has become slow to adjust and blurry, my nightvision also horrible.

Accutane is not vitamin A. The body handles it differently from natural vitamin A (see Figure 4) and there are a number of lines of evidence showing that it acts as an anti-vitamin A compound that can aggravate vitamin A deficiency. In newborn mice treated with dexamethasone, a drug that induces emphysema-like changes to lung tissue, natural vitamin A helps treat the disorder while the active ingredient of Accutane has no effect and may even make it worse.30 Accutane caused night blindness, a traditional sign of vitamin A deficiency, in a child with cystic fibrosis, whereas vitamin A supplementation resolved the night blindness.31 In rats, the active ingredient of this drug accumulates in the eyes and interferes with vitamin A recycling; rats taking it at high doses took fifty times longer to recover from exposure to intense light than rats that did not take the drug at all.32

A physician published a letter earlier this year reporting that two patients developed depression on Accutane; when the physician took them off the drug and supplemented them with 10-12,000 IU of vitamin A for seven to ten days, the depression resolved and they were able to go back on the drug without it recurring.33 The totality of the evidence strongly suggests that vitamin A deficiency contributes to depression and that Accutane is associated with this mental illness because it interferes with vitamin A metabolism.

edit: I think ill try me some vitamin A. about 10 000 IU a day for a week, or was it 10 000 total for the week?

My problem is not depression though. But some sleep sure would be nice after 2 years of insomnia.

edit: again, it must be daily as 10 000 is not that mutch.

random google result:

Carrots are excellent cooked or as a snack. 100 grams of raw carrots provides 16706IU (334% DV) for vitamin A. That is 10191IU (204% DV) for a medium sized carrot, and 2069IU (41% DV) for a single baby carrot.

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157
(@chico-esposito)

Posted : 10/03/2012 10:53 am

Your right @dthtodrmtigsts retinoic acid is not the same as vitamin A.

 

"Vitamin A deprived rats can be kept in good general health with supplementation of retinoic acid. This reverses the growth-stunting effects of vitamin A deficiency, as well as early stages of xerophthalmia. However, such rats show infertility (in both male and females) and continued degeneration of the retina, showing that these functions require retinal or retinol, which are intraconvertable but which cannot be recovered from the oxidized retinoic acid. The requirement of retinol to rescue reproduction in vitamin A deficient rats is now known to be due to a requirement for local synthesis of retinoic acid from retinol in testis and embryos."

 

Retinoic acid if given to vitamin A deficient people can cause blindness.....it's not the same chemical, it doesn't function the same way. Retinoic acid is more about DNA transcription and skin cell proliferation. Vitamin A (retinol) is used for eye health and loads of other stuff that retinoic acid doesn't have anything to do with.

 

But then you get people with really bad eye sensitivity after accutane, were they are very sensitive to light and have very dry eyes and mucous membranes. Thats all retinoic acid being used in the receptors instead of healthy Vitamin A. Personally i see no benefit from high Beta carotene foods i don't think the body converts it into active vitamin A., as the retinoic acid is in the receptor so it tricks the body into thinking it doesn't need any more.

 

 

The problem with accutane sufferers is they have loads of retinoic acid, no retinol and no retinal....because of their aversion to eating vitamin A in food. It's deficiency coupled with toxicity....

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2
(@suffering12345)

Posted : 10/03/2012 11:27 am

oli girl or anyone else. my skin is beggening to become more numb. i dont know if i have full on erectyle dysfunction as my skin has lost sensation everywhere. my foreskin is completly numb. could this be diabetes or thyroid issues? also i think i have a bit of loss balance.

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91
(@josephbuchignani)

Posted : 10/03/2012 2:00 pm

Interesting theory about vit A deficiency!

 

I'd say the best way to get it is to eat grass-fed beef liver. Thanks for this.

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5
(@bosnic)

Posted : 10/03/2012 3:34 pm

@dthtodrmtlgsts

@Chico Esposito

 

It's interesting that a docotor used vitamin A to treat depression caused by Accutane. It's just that when I eat foods containing vitamin A (retinol) my symptoms get worse. How do you guys react to vitamin A?

 

But I'm wondering if it's that Accutane is actually still in our bodies, or if it just changed gene signalling and then was eventually excreted. If it's in our bodies, Glucuronic acid binds to retinoids, so supplementation may help. But I actually think it has more to do with gene signalling, in which case the process of reversing it is more complex.

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MemberMember
148
(@oli-girl)

Posted : 10/03/2012 6:57 pm

oli girl or anyone else. my skin is beggening to become more numb. i dont know if i have full on erectyle dysfunction as my skin has lost sensation everywhere. my foreskin is completly numb. could this be diabetes or thyroid issues? also i think i have a bit of loss balance.

 

 

Dude you have to get to a physican and yes it could be caused by anything! Go to the Emergancy room if you have too I did 5 times when shit 1st hit the fan I got some help and sometimes not! Go Please hypothyroid can cause comma, Diabetes can cause kidney failure and comma, iron deficency can cause death, certian other neuro issues also can be serious and yes Accutane can cause all of it.

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148
(@oli-girl)

Posted : 10/03/2012 8:20 pm

Retnoid = Cousin of Vit A....Accutane = 13-cis-retnoic acid which = a isomer of retnoic acid ( aka trenitoin ) which is used in treatment of a certian type of Leukemia!

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0
(@lindseym)

Posted : 10/04/2012 9:35 am

My personal trainer suggested a liver cleanse at the end and to try eating a lot of omega 3 :)

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5
(@accux)

Posted : 10/04/2012 4:20 pm

Hi All,

 

Has anyone tried liver friendly supplements like artichoke extract or max milk thistle?

Would be great to hear your experiences.

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91
(@josephbuchignani)

Posted : 10/05/2012 8:13 am

Yes I used three different highly regarded liver supplements and none of them did anything much. Together they represented pretty much everything non-prescription you can take for "liver support".

 

I had an initial battery of tests and liver levels are not elevated. Thyroid (TSH) shows a problem. That (probably) doesn't explain my digestion problems though.

 

Anyway with the digestive enzymes I'm able to eat fats, and don't get the devastating gut cramps no matter what I do. I still get a fatigue reaction if I eat too far away from paleo. And I seem to do best on a low-irritant paleo diet. But basically I have my life back.

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27
(@sbowlchica)

Posted : 10/05/2012 12:28 pm

I'm taking an artichoke/milk thistle supplement (currently just to use it up). The only thing it did was make me pee more, especially at night. Didn't notice much of a change.

 

Taurine, however, is magic. It's usually used as a liver supplement because it helps the liver to detox and produce bile. Other benefits include anti-inflammatory and antihistamineactivity. Mainly, the sulfur in taurine made me stop losing hair and cleared up all the acne I had. (Keep in mind, it took months to kick in... changes are gradual.) Other sulfur-containing supplements may also help in this area, like MSM and cysteine. I also try to eat a lot of sulfur-containing foods (cruciferous vegetables, cabbage, fish, legumes...) and avoid sugars, alcohol, starches, and dairy.

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0
(@hitman87)

Posted : 10/07/2012 4:26 pm

On 9/27/2012 at 9:17 PM, dthtodrmtlgsts said:
On 9/24/2012 at 1:49 AM, hitman87 said:

Any tips on (social) anxiety here? Been suffering greatly the last few weeks of a sore throat, headaches and general stress things. Can't seem to figure out how to only search this thread instead of the whole forums. I've had this issue throughout my 8 years of accutane use, but ever since I stopped it seems to come up more random and for more drastic with no obvious reason.

Tried magnesium and rhodiola, but those two seem to power my anxiety even more... [Edited image out]

Ugh, wrote a long answer but accidentally removed everything.

If u have been taking the drug for 8 years i strongly believe you are folate and b12 deficient, and that it could help you to supplement these. B-complex probably also contains beneficial things although not researched jet. Atleast i havent found anything. Posted some good documentation on b12 and folate though, further back in this thread. Of the b12 you should preferrably take the methylcobalamin kind. I feel better on the cyano form also, but its much lower qulity.

Liquid vit d3 helped me, and had lasting effect, but not fixing everything. Just feel better. Overdoing this does not make me feel any better ,my levels became high and i stopped, still having lasting good effect.

I stopped eating bread, it gives me heart palpitations. Have not tested positive for celiac, but staying of bread for about a month+ clears my thoughts and no heart palpitations after eating! I used to eat A LOT of bread with no problems at all, so it was hard for me to change my diet so drastically, but being persistant has payed of.

ALSO!, your sore throat, have you been checked for a hiatial hernia? I ruptured my diphragm and got a hiatial hernia while lifting heavy things on accutane. Got sore throat and voice change for a while, some stomach pain, but not that bad compaired to my other problems i thought. Doc did not detect it untill i had erosions and bleeding after the acid, long time after. I elevated my bed 6 inches at head end for this and had huge relief!. I have more home remedies also for this, ask if anyone else here also gets this. Get an gastroscopy to check it.

Are you sure you really have social anxiety, or is it your doctor that is telling you this? Oftentimes one drinks and eats when socialising, could be a reaction to food, or even many things going on around you... I could not concentrate on anything for a long while after accutane, even looking at a computer screen trying to play a game severly stressed me out if several things happened at the same time. It did not have anything to do with the people. Totally cured of the "things going on around me" thing now, but still struggling if i concentrate really hard.

For the chromosome thing, i dont think any drug can add or remove a chromosome. It could possibly create the same sideeffects though..

Thanks for the reply dthtodrmtlgsts. Thats some very interesting info! :) I will look into B12 and folic acid. I've tried vitamin d3, but it makes my acne come back (and all the omega-3 stuff too :( ). The thing with my throat is called "globus sensation/globus pharyngis". It's a pretty common stress thing I'm afraid. When I don't have anything to do for a while, the globus sensation disappears.

The Rhodiola effect is also changing in a good way. Altough I'm still struggling with the stress/anxiety it's getting less. I feel more confident and energetic. :)

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MemberMember
85
(@and1)

Posted : 10/08/2012 6:58 am

I am about to place another order at iherb, any recommendations of what to try?

 

Going to post the list of items I will try.

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MemberMember
143
(@indigorush)

Posted : 10/09/2012 5:29 am

Glutamine Powder: http://www.iherb.com/Country-Life-Gluten-Free-Iron-Tek-Glutamine-Powder-17-6-oz-500-g/1695

Adrenal Glandular: http://www.iherb.com/Natural-Sources-Raw-Adrenal-60-Capsules/5867

Thyroid Glandular: http://www.iherb.com/Natural-Sources-Raw-Thyroid-90-Capsules/6016

Himalayan sea salt: http://www.iherb.com/HimalaSalt-Primordial-Himalayan-Sea-Salt-6-oz-170-g/33394

 

I think that's pretty much my list.

I already have the glutamine powder.

 

I'd like to try this: http://www.iherb.com/Vibrant-Health-Green-Vibrance-Version-10-3-25-4-oz-720-g/4981

But it's too expensive.

 

I think I'm done ordering from iHerb.

Every time I end up having to pay a customs fee of about 20.

And again, no supplement has ever worked.

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26
(@maynerd)

Posted : 10/09/2012 4:06 pm

Prolatis 2 eradicates my sexual problems (minus the under responsive testicles) for the day that I take it.

 

Interestingly, my cousin, who also took tane but has had milder side effects said he went through a period of time awhile ago where his hair was thinning and he took L-Arginine and eventually it got better. He has thick hair now. This is totally anecdotal evidence but Arginine might be a good idea anyhow. It's in the prolatis, coincidentally.

 

Prolatis also has maca in it which I have mentioned before.

 

I'm going to be ordering the following standard process supplements soon:

 

 

Palmettoplex (Glutamic Acid)

Ligaplex II

Oculotrophin

Protefood (Contains Glutamic Acid and methionine)

dermatrophin

Collagen C

 

 

my probiotic has artichoke in it and it does help my bowels be more regular.

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91
(@josephbuchignani)

Posted : 10/09/2012 4:41 pm

I doubled the dose of the digestive enzymes and am now able to eat veggies and even cheat foods like potato chips without having a fatigue/inflammation reaction. Sweet! Seems like it was a gall bladder problem, probably.

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85
(@and1)

Posted : 10/10/2012 6:33 am

I expect to finally get my hands on some UDCA sometime this month, can't wait.

 

Have not placed my order yet, but I am definitely going to get some more peppermint oil and artichoke extract.Taurine is on my list as well since I have two credible sources who say it is their favorite supplement and it is supposed to support the gallbladder.

 

I still have this big jar of MSM at home. Has anyone used Msm longterm?

 

Glutamine is great I would recommend everybody to try it but unfortunately it does not work for me. Gives me horrible breakouts.

 

Enzymes are great too, but I like to focus on getting heavy metals out of the body and replenish those minerals that are essential for enzymatic function like zinc, magnesium, manganese etc.

 

Enzymes are too expensive for me and once I get off of them I do not see any lasting effect. If I had money I would still take them.

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