Accutane (isotretinoin) cured something in my body

Other conditions
1

Im a 27 year old male from Sweden who have been sick for perhaps all my life, or since i was very young.

I have been going to the doctors for almost 10 years and im still undiagnosed, pretty much all of my tests have been normal.

I recently found this forum and decided to share my situation.

I divide my symptoms into 3 sections:

Appearance - I look ill, pale and sick. My skin colour changes very easily depending on what type of lighting there is. If i for example go outside an autumn/winter day my face is very grayish/white or in the subway im very yellow pale.

My eyes are tired/staring looking with eyelids hanging and dark underneath.

I have never seen anyone else that looks like this, drug addicts are the closest to comparison.

Brain - It feels like my brain and thinking is blocked. I have hard time learning new things because information doesn't stay, in conversations i often forget what im going to say, concentration problems, nervousness, easily irritated

Body/The Rest - I have a bad body odor and my hair is dry and lifeless.

Fatigue, no matter how much i sleep i feel tired. Its not that i have to sleep but always tired and no energy.

I don't however have any pain whatsoever and i can move perfectly.

Now to the part of my story that is very remarkable and the reason why i post on this forum:

In 2004 i took accutane against my accne. I took a regular cure for 7 months and then stopped.

A few months after i stopped i noticed that i looked much MUCH better then i have ever done before, skin color, eyes, hair and even body odor, everything changed to normal for me.

Then i noticed that i could read articles, watch movies and understand pretty much everything. When i talked to people it was like i saw the words in front of me so i knew what i was going to say all the time. My brain started to work normally!

And i also felt healthy in my body for perhaps the first & only time in my life, the feeling was unreal, the fatigue and tiredness went away.

I now realized that accutane cured something in my body i didn't realize i even had. Sure i had my suspicion that something could be wrong but i was so young and i didn't take my health seriously.

This healthy condition lasted for about 6 months and then when i noticed that i again looked pale i realized that i was going to be sick again.

For every week i felt worse & worse, the symptoms slowly came back again.

I have no idea what accutane cured in my body but i know that i have a disease that is treatable.

I have never seen/heard about anyone being cured or feeling better by taking accutane, its always about the side effects and how it destroyed their life afterwards. Its SO weird that i got cured from a medicine that is only known for its side effects.

I have done so many tests during the years and i have checked lyme disease, thyroid & so on

The only thing i have had low levels of since my first blood test is cortisol, but i have had an endocrine investigation and they didn't find anything.

It feels really hopeless, i have never been able to live a normal life and nothing in my situation tells that i will find this disease..

If anyone have any ideas what accutane cured in my body or recognize the symptoms i would really(!) appreciate your comments & thoughts!

I suspect that it may be some sort of autoimmune disease because i got cured by an anti-inflammatory drug.

Bad body odor, urine and other body fluids may tell something else, im not sure, i just cant puzzle this thing together..

2

Hi Trance ~

I'm only familiar with accutane as my daughter was on it.  It's toxic stuff for sure so I'm not surprised that it 'cured' you of what you believe to be something else.  I am going to see the doctor on Monday and will ask if he knows what other areas this drug can cure.  If he has anything of worth to share, I'll write and let you know.  Meanwhile, don't stop looking.  It's on the internet somewhere!  Good luck

Frustrated

3

Thanks for your quick answer.

I have had my medical investigation going on for nearly 9 years and i have kinda lost hope on ever finding this disease. It feels really depressing and hard..

I have spent 1000 of hours online trying to puzzle everything together but i cant seem to find any disease that has all of my symptoms.

And i seem to be the only person who has been cured by accutane, i cant find anyone else which probably means i have a very rare disease.

I appreaciate your help!

4

Hello again ~

I'm sure you've read that accutane (isotretinoin)has been used to treat certain types of cancer but if you haven't, it has been and it's also under review with other types of cancer.  I can believe it's worth as it's so drying for what my daughter used it for that i can see where it could also "dry" kinds of cancers.  I mean, I use methotrexate for sarcoidosis and that is also a drug used as chemo.  Just with different moderations.

Anyway, will write if I find out anything new with regards to the dr appt on monday.

Frustrated

5

I was wondering about Vitamin D levels and have found an article that might prove interesting.  On the first page, you can opt for Swedish.

https://www.stralsakerhetsmyndigheten.se/In-English/About-the-Swedish-Radiation-Safety-Authority1/Enjoy-the-sun-safely/The-sun-and-vitamin-D/

6

I took Vitamin D last week and i had low levels of it, but i have read about those who has had even lower levels and its a very common defiency to have so it doesnt really tell much. I will take Vitamin A next week as well

7

It is interesting, I saw my Ophthalmologist yesterday and amongst other things, he gave me a new ocular lubricant, called Vit!-POS.  It is a lubricating gel, with added vitamin A, which he thought I needed.  Perhaps you could mention this to your Ophthalmologist.

8

It is called VitA-POS, not quite certian what happened above!!

9

Hello again,

I have had an idea for a long time but i don't really know how to go forward with it.

Whatever this disease is that i have, my brain, skin and body odor is affected (among other areas). Whoever also have this disease, im sure those people also have these areas affected because they are very noticeable.

I want to know about every disease, deficiency or whatever, that affects the skin, brain and body odor, all 3 areas together. How can i do this?

I know about these "symptom checkers" sites but on those sites i have to choose specific symptoms.

I don't know if i for example have brain fog or mental fatigue, or if my skin is "paleness" or "discolored skin".

The only way i can get a complete list of causes is to choose these 3 areas and not specific symptoms that have different names.

I think body odor is not so usual so the list of causes wont be 100 pages long.

Sorry if this is confusing, its late here in Sweden and my English is not the best. But i hope you understand what i need help with.

10

Sarcoidosis.

11

Hello, i never saw your post until now.

Accutane was only a temporary cure for me but its still very weird that i cant find anyone with a similar experience, or there is no info whatsoever that accutane can cure something else besides acne and some forms of cancer.

I have never heard about anyone with cancer saying that they used it as a cure themselves tho..

Accutane is used all over the world, how rare must this unknown disease be as i seem to be the only one who has experienced it as a cure for something?

I saw you mention sarcoidosis, how did you found out that you had that?

It seems rare to have it before the age of 20 and not having any problems with breathing, but i will definetly mention this to the doctor next time i see him.

//Daniel