Jump to content
Acne.org
Search In
Find results that contain...
Find results in...

Recommended Posts

Posted

Hey, 

i haven’t visited this forum in a while because I found it extremely unhelpful, but I thought I’d give my advice to those suffering from my symptoms. 

After Accutane, I was diagnosed with:

Fibromyalgia 
Sebhorric Dermatitis 
Chronic Migraines
IBS
Major Depressive Disorder 

if you have any of the above symptoms, this is what has helped the most:

Fibro: Cymbalta (SNRI), Accupuncture, CBD extract applied to sore muscles 

Sebhorric Sernatitis: Ketoconazole Shampoo and Tea Tree oil, olive oil on the scalp too. 

IBS: Peppermint Oil capsules

Depression: Therapy, Pain management therapy, meditation

Above everything else, healthy diet and excercise. Seriously, everything else just controls the symptoms but healthy eating and excercise is the only thing that can reverse its effects. 

Lots of root vegetables, fruits, water, etc. 

the only thing I will potentially try is Lyrica and LDN in the future, but so far my symptoms are manageable now with what I am doing. 

Oh, and cannabis is truly a wonder drug that helps with a lot of symptoms. 

Share this post


Link to post
Share on other sites
Posted
20 minutes ago, Jorcruz24 said:

Hey, 

i haven’t visited this forum in a while because I found it extremely unhelpful, but I thought I’d give my advice to those suffering from my symptoms. 

After Accutane, I was diagnosed with:

Fibromyalgia 
Sebhorric Dermatitis 
Chronic Migraines
IBS
Major Depressive Disorder 

if you have any of the above symptoms, this is what has helped the most:

Fibro: Cymbalta (SNRI), Accupuncture, CBD extract applied to sore muscles 

Sebhorric Sernatitis: Ketoconazole Shampoo and Tea Tree oil, olive oil on the scalp too. 

IBS: Peppermint Oil capsules

Depression: Therapy, Pain management therapy, meditation

Above everything else, healthy diet and excercise. Seriously, everything else just controls the symptoms but healthy eating and excercise is the only thing that can reverse its effects. 

Lots of root vegetables, fruits, water, etc. 

the only thing I will potentially try is Lyrica and LDN in the future, but so far my symptoms are manageable now with what I am doing. 

Oh, and cannabis is truly a wonder drug that helps with a lot of symptoms. 


Thx for info.

can you please elaborate on the therapy for depression- what does that involve?
hopefully more than just talking to someone?

Also what brand of CBD oil? Something easily obtainable or the backyard stuff??

Share this post


Link to post
Share on other sites
Posted (edited)

That’s what I use. It’s sold at most dispensaries in Oregon. I apply it to a sore muscle and within 5 min the pain is gone. I’m sure any other CBD oil will do the trick. 

I  did a ton of therapy. I have a pain management therapist and mental therapist. 

The two big concepts of therapy that helped the most were Radical Acceptance and Mindfulness. Radical acceptance is accepting your current situation for what it is. This was the hardest one for me. I had so much anger so much frustration so much regret but once you radically accept your situation for what it is you finally begin to heal and move forward. The other one was mindfulness. My flare ups come and go throughout the day, but now my reaction to the pain is much more different than it was before. before, when I would feel the pain I would tense up and completely shut down. Now, I’m mindful of the pain but I don’t let it consume me. I just go about my day normally. 

Its really the difference between  night  and day. 

But not sure, I’m only trying to help those with my side effects, not sure how to help those with depression still after 10 years or ED. I’m sure if you’re still depressed after this long it’s because you haven’t radically accepted your situation for what it is and your still in the denial- bargaining phase 

C17DF912-FF5A-4DA9-B1DA-5474BDBBD9E8.jpeg

Edited by Jorcruz24

Share this post


Link to post
Share on other sites
Posted

Thx Jorcruz

I don’t know if I’m depressed or just jaded beyond belief after 20 years.

Im very tired and that could in itself lead to depression. I mean I agree with the acceptance approach but I don’t accept being this way forever, are you saying you’ve accepted you’ll never be the same again?

I work and function and do all that’s in my power, I feel optimistic enough to think there’s still time to change this condition.

 

Share this post


Link to post
Share on other sites
Posted (edited)
18 hours ago, tanedout said:

Anyone had an amino acid panel done??

Yes I have. It was normal. I can show you the results if you like.
Also that heartbeat you say you feel in your head. That isn't normal. That literally sounds like some kind of blood vessel inflammation. Thats why its throbbing. Funny I was just watching ELF the other day and it reminded me of this. He had his finger pricked at the doctor's office and he was like " I can feel my heartbeat in my finger"
I think alot of people can attest to having some type of vascular effect going on at times. Some might not even be aware  some of their symptoms could be vascular in nature. Some experts presume this can be hormone driven as well. Edited by guitarman01

Share this post


Link to post
Share on other sites
Posted
52 minutes ago, guitarman01 said:
Yes I have. It was normal. I can show you the results if you like.
Also that heartbeat you say you feel in your head. That isn't normal. That literally sounds like some kind of blood vessel inflammation. Thats why its throbbing. Funny I was just watching ELF the other day and it reminded me of this. He had his finger pricked at the doctor's office and he was like " I can feel my heartbeat in my finger"
I think alot of people can attest to having some type of vascular effect going on at times. Some might not even be aware  some of their symptoms could be vascular in nature. Some experts presume this can be hormone driven as well.

homocysteine not elevated? Histidine and cysteine also normal?

Share this post


Link to post
Share on other sites
Posted
2 hours ago, guitarman01 said:
Yes I have. It was normal. I can show you the results if you like.
Also that heartbeat you say you feel in your head. That isn't normal. That literally sounds like some kind of blood vessel inflammation. Thats why its throbbing. Funny I was just watching ELF the other day and it reminded me of this. He had his finger pricked at the doctor's office and he was like " I can feel my heartbeat in my finger"
I think alot of people can attest to having some type of vascular effect going on at times. Some might not even be aware  some of their symptoms could be vascular in nature. Some experts presume this can be hormone driven as well.
I read low testosterone and even other hormones can cause circulation problems! When I do yoga and I have to put my feet up in the air, they lose blood flow so quickly and start throbbing I have to bring them back down. My yoga instructor was like wtf? Lol

Share this post


Link to post
Share on other sites
Posted

For those of you with long term joint issues, did you take supplements like fish oil, glucosamine, chondroitin, calcium WHILE on Accutane or only after? Sorry if this is redundant as I haven’t read farther back than 10 pages

Share this post


Link to post
Share on other sites
Posted (edited)
2 hours ago, 808toms said:

For those of you with long term joint issues, did you take supplements like fish oil, glucosamine, chondroitin, calcium WHILE on Accutane or only after? Sorry if this is redundant as I haven’t read farther back than 10 pages


I’m going to say don’t bother wasting money on any of those supplements, you are going to have to try something much stronger like CBD oil - everyone has only positive things to say about it!!

Getting into Yoga is also highly advisable regardless of your ability- you will get results over time  Edited by TrueJustice

Share this post


Link to post
Share on other sites
Posted
6 hours ago, TrueJustice said:

I’m going to say don’t bother wasting money on any of those supplements, you are going to have to try something much stronger like CBD oil - everyone has only positive things to say about it!!

Getting into Yoga is also highly advisable regardless of your ability- you will get results over time 
Actually my dad has some CBD oil, I’ll look into that. Also I do yoga currently about twice a week but I should probably get into a morning routine!

I’m only on day 4 and I already am having lots of joint popping - no pain but quite a bit of noise - and SUPER mild lower back pain (honestly could be just in my head). Just want to take all the precautions possible

Share this post


Link to post
Share on other sites
Posted
@tryingtohelp2014
This might seem out of the blue, but did you have any luck on the Wahl protocol/diet?

Share this post


Link to post
Share on other sites
Posted
20 hours ago, TrueJustice said:

I’m going to say don’t bother wasting money on any of those supplements, you are going to have to try something much stronger like CBD oil - everyone has only positive things to say about it!!

I've been through loads of the stuff and noticed nothing from it. It might be beneficial for overall health on paper, but I don't think it'll do anything for persistent accutane side effects like loss of libido, ED, brain fog, depression, persistent dry eyes/skin etc

Share this post


Link to post
Share on other sites
Posted (edited)
@guitarman01 @tanedout

New case from Finasteride, just in. Told him to perform several tests, including Total Bile Acids. 


The results are as follows :

Screen Shot 2017-12-18 at 07.26.08.png


TBAs are 3.5 times more than normal. Yet one more with Cholestasis which leads to Liver Injury.


  Edited by mariovitali

Share this post


Link to post
Share on other sites
Posted

Whats the rationale for taking finasteride to resensitize the receptors and not Isotretinoin?

Share this post


Link to post
Share on other sites
Posted (edited)
1 hour ago, mariovitali said:
@guitarman01 @tanedout

New case from Finasteride, just in. Told him to perform several tests, including Total Bile Acids. 


The results are as follows :

Screen Shot 2017-12-18 at 07.26.08.png


TBAs are 3.5 times more than normal. Yet one more with Cholestasis which leads to Liver Injury.


 

Do you know if they had normal AST, ALT and bilirubin? 

All my liver enzymes always come back normal, usually right in the middle of the range. Ultrasounds fine, PET/CT scan was fine. The pains I get in my liver/GB area are totally resolved by taking TUDCA or UDCA though, so I'm supplementing with that. So far no impact on other sides though. 

 
38 minutes ago, draci said:

Whats the rationale for taking finasteride to resensitize the receptors and not Isotretinoin?


It's just down to Dr Pezzi (a doctor who took accutane and got hit with permanent side effects - loss of libido, ED etc) choosing to use that. PFS guys who've been hit with the same sides as us from fin have taken it again though, and got nothing from it. Might be something to do with the mechanism being slightly different. Both drugs act like progestins and inhibit DHT, but fin doesn't inhibit DHT directly, I'm not sure about accutane. Edited by tanedout

Share this post


Link to post
Share on other sites
Posted

Does anyone know why some people have chosen Clomid over Finasteride in treating Accutane issues?

Both would come with their own list of side effects I would say.

Share this post


Link to post
Share on other sites
Posted
4 hours ago, mariovitali said:

TBAs are 3.5 times more than normal. Yet one more with Cholestasis which leads to Liver Injury.

What am I missing here? The reference range is 0-10 for total bile acids.
His is 3
or 3.52 to be exact.
 

Share this post


Link to post
Share on other sites
Posted

This is what Accutane is good for. This I get. This is why it should still be on the market. I think most of us can attest though that our acne was never this severe or even cystic. Thats where the line needs to be drawn, for severe persistent cystic acne only.  The problem is if you keep going back to the dermatologist even with mild to moderate acne, they will probably eventually mention Accutane as a option. 
https://www.yahoo.com/lifestyle/id-just-sit-cry-womans-acne-photos-show-painful-journey-173209365.html

Share this post


Link to post
Share on other sites
Posted

I want to begin this by saying that i was in your position. I had bad acne. I'm writing this to provide some insight to what it's been like the last 3 years after my course of accutane (some information that i would have eaten right up before i started treatment).

Let me start off by saying - this drug works. For most, if not all of middle/high school, I had very bad acne that was resistant to doxycycline, minocycline, proactiv, Murad products, benzoyl peroxide, sailicylic acid, and all the wipes i could get my hands on. You more than likely will be free from acne at least for a few years after treatment, and it's absolutely wonderful! Being able to walk around without having to check mirrors for a new red/white bump on your face is as great as you think it would be. Looking back it seems like i was a completely different person.

You're probably thinking: if it works so well, why the lackluster rating then?!

This drug works wonders but there is absolutely a reason as to why they're so serious about prescribing it. They are very cautious because this stuff is freaking legit - it alters your body in a permanent way. Once you've finished your course there is no going back. In fact, at the time of writing they still do not understand exactly how it works - but it affects acne. This was originally made to be a drug for cancer patients (yeah, people that had nothing left to lose and were willing to try something that could potentially debilitate them if it meant surviving! crazy right?)

So I went on the medication and throughout the course felt nothing but the normal side effects of dry lips, skin, nosebleeds, dry eyes and easily scarring (just a scratch on accutane can turn into a permanent scar hah, i have a few reminders). Things went through without a hitch and i was acne free! I would notice people staring at me, and if i could guess what they were thinking it would be "How in the hell did that pizza face get porcelain clear skin?!"

Strangely, the side effects of this medication slowly ease their way into your life after treatment (the effects are permanent after all). Expect something along the lines of joint pain, gastrointestinal issues, and mental health dips. These tend to be the most serious. When people get these issues they disregard it as natural, how in the world could they be associated with something they took 3, 5, even 10 years ago? Long story short in convincing you this are legit, the original manufacturers of accutane (Roche) went out of business due to lawsuits and had huge payouts of millions upon millions of dollars to peoples lives they had negatively changed (mostly focusing on permanent gastrointestinal issues).

I could talk about this for hours but to avoid making it THAT lengthy, here's the summary:

I can't stress enough how EXTREMELY important it is for you to consider these potentially permanent side effects. When i took it i couldn't care less about side effects, all i wanted was my acne to be gone! But there are people who used to play sports, ran, and workout - now experience severe pain by simply walking due to joint issues (and it's seemingly permanent unfortunately). If your acne isn't really that bad, or could go away within a couple of years normally, it is up to YOU to consider taking this drug. There are dermatologists out there who will prescribe this to people with just a few pimples, which is unecessary given how serious the side effects could be. Read up on peoples experiences years after their treatment and make an informed decision!!! God bless :)



I read this today and it's probably the most accurate description of isotretinoin  I have ever read . 

Share this post


Link to post
Share on other sites
Posted (edited)

There's no true rationale for taking low dose Fin imo.

Edited by mikez

Share this post


Link to post
Share on other sites
Posted
1 hour ago, mikez said:

There's no true rationale for taking low dose Fin imo.

There’s no true rationale to any “cure” on this forum in my opinion. Everyone is affected differently. If someone wants to try a protocol and think it may work for their individual self then by all means that person should do so. It could also help us break down into groups once we find out which people feel better on what and see if their tests results show similarities as well. Too many people on here thinking we’re all identical. Been saying that forever now

Share this post


Link to post
Share on other sites
Posted

I’m not sure I’m a good candidate for taking Finasteride anyway, luckily sexual side effects aren’t an issue for me and from what I can gather those who are taking it have some sexual issue they are addressing after tane....am I wrong?

My biggest issue is the chronic fatigue and brain fog so is fin that good for me? Prob not I would say.

What are the latest ideas around chronic fatigue? I don’t know, supplements will give some relief but clearly aren’t going to give anyone a clear recovery.

The jury is still out in what to do with our livers post tane, do we still need to cleanse and repair it? No one knows - ultrasounds aren’t conclusive, nor is any blood work.....we just don’t know.

Share this post


Link to post
Share on other sites
Posted (edited)
1 hour ago, Colinboko said:
3 hours ago, mikez said:

There's no true rationale for taking low dose Fin imo.

There’s no true rationale to any “cure” on this forum in my opinion. Everyone is affected differently. If someone wants to try a protocol and think it may work for their individual self then by all means that person should do so. It could also help us break down into groups once we find out which people feel better on what and see if their tests results show similarities as well. Too many people on here thinking we’re all identical. Been saying that forever now


Good point , but taking a drug known to cause semi /permanent side effects is risky Edited by mikez

Share this post


Link to post
Share on other sites
Posted
10 hours ago, mikez said:


Good point , but taking a drug known to cause semi /permanent side effects is risky
Isotretinoin is bad enough let’s not add injury to insult. 

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a New Account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Personalized Advice Quiz - All of Acne.org in just a few minutes

×