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Livetoregret

Member Since 22 Oct 2012
Offline Last Active Sep 09 2013 06:30 PM

#3360559 Repairing the long-term damage from Accutane

Posted by Livetoregret on 22 June 2013 - 10:45 PM

Well sorry if being able to take a shit and contribute to the economy  isnt enough for me to feel content with my health or deal with my own personal nightmare day to day.

Fact is some of us will never feel improvement as these effects do not subside for some and nothing we put into or put our bodies through is going to bring us back to baseline.


#3360494 Repairing the long-term damage from Accutane

Posted by Livetoregret on 22 June 2013 - 08:03 PM

I don't want to walk on the moon I just want my hair to grow like a normal human  and my skin to function like skin should but that's not gonna happen because the truth is once the damage is done that's it.
Once you pour milk in your coffee try extracting it tell me how that goes for you.


#3343125 Repairing the long-term damage from Accutane

Posted by Livetoregret on 24 April 2013 - 07:42 PM

I'd pile you all in a clown car with Joseph as the driver now that would be entertaining haha

@Steph your not even willing to post pictures c'mon give it up show us the damage lets be honest and open here

Also people- can we stop requoting people's long winded quotes in response just tag themthem, they will see it were here all the freaking time reading every post it's not like your gonna miss it were addressing using user names it's so irritating........


#3342672 Repairing the long-term damage from Accutane

Posted by Livetoregret on 23 April 2013 - 08:01 AM

You guys are seriously great fun.
Life really does suck in so many ways now, but at least we can still have a laugh.
Hey, in a normal world we might even have a round of drinks imagine that?!


#3342073 Repairing the long-term damage from Accutane

Posted by Livetoregret on 20 April 2013 - 10:09 PM

Joseph do you want to elaborate on what your deprived diet has helped with exactly?

Augeriesofinnocence-I have tinnitus as well. It sounds like the day after standing next to the pa at a queens of the stonage show except its all the time. It gets worse at night. For me it started about 6 months ago.
Your hair looks still healthy it doesn't look dry, again you should rejoice you only took it for one month.

I think of course the damage from  side effects are relative to the dose ingested, but that's not to say that ppl don't suffer after taking a small amount because hey,we know this drug is poison full stop.

On a side note I was watching intervention the other day and I though to myself, Everything is a poison to humans and its only that dose that makes it so, but I could have taken heroin for a year and be in better shape than I  now.
I see ppl after years of hard drug abuse have Healthy hair and skin, do you think they do half of the things we do for our bodies?


#3335750 Repairing the long-term damage from Accutane

Posted by Livetoregret on 24 March 2013 - 12:13 AM

Sounds ideal- Except one thing, it doesn't work.




Hi people,
 
I found this blog and seems very helpful and very informative about the long term side effects of accutane. I thought I would share the wonderful find with you guys.I am still trying to finish reading it. Maybe, you more knowledgeable people can grab something from this and help us solve our long term side effects. Also if you found it informative and interesting, please save it some how in case the url goes down.
 
http://www.aquatic-a...up-of-accutane/
 
Here are some excerpts from it:
 
Accutane induces a severe form of vitamin A toxicity, which is how it reduces acne, reduces cell division
and severely dries out the entire body by effectively slamming shut all of the sebaceous (oil)
glands in the skin and degrading the glycosaminoglycan water-holding protein molecules
collagen, hyaluronic acid, elastin, and chondroitin sulfate in connective tissue everywhere,
leaving the person in a chronically dehydrated hung-over state because the terrain throughout
their whole body has been literally turned into a desert, they are unable to retain moisture
between their cells.
 
 Depending on the severity of Accutanes original
assault on the persons DNA protein transcription mechanisms, some people recover from their
side effects with time, others arent so lucky. And from what I can tell, theres no way of
knowing in advance which group somebody will fall into.
 
This drug permanently shrinks the oil glands everywhere
and damages the ability to regenerate water-holding molecules, like the glycosaminoglycan
hyaluronan AKA hyaluronic acid, which holds water hundreds of times its own weight in the
skin and other areas of connective tissue.
 

Investigative health journalist Bill Sardi published a compelling and insightful report on
Accutane and its long-term side effects titled Accutane: a modern horror story. This report came
out five years ago, so some of the statistics might be outdated, but it is very thorough and well
referenced. One important topic he covers is how oral hyaluronic acid supplementation might
improve the extreme dryness of tissues caused by Accutane. Former Accutane users suffering
the chronic latent effects of severe systemic dryness of their skin, eyes, lips, mouth, and nasal
passage should consider taking oral hyaluronic acid supplements. Hyaluronic acid is the
scaffolding that holds the human body together. It cushions joints and nerves, dilutes toxins and
serves as a barrier against the spread of disease.
 
Oral hyaluronic acid (HA) supplements are relatively new. They offer hope for restoration of
tissues adversely affected by Accutane. Just 1000 milligrams can hold or gel 6 liters of water in
the body. Oral hyaluronic acid supplements have been reported to lessen or eradicate joint pain
in cases of osteoarthritis, eliminate back pain caused by swollen vertebral discs, refill skin tissues
to the point of reduction of wrinkles, cause floaters in the eyes to disappear, and improve
thickness and luster of hair. The production of hyaluronic acid may be impaired in Accutane
users. Supplementation may be beneficial.




#3334974 Repairing the long-term damage from Accutane

Posted by Livetoregret on 20 March 2013 - 08:32 PM

I want more info on the intense long term/permanant dryness situation for post users. This is my largest problem and I believing causing the hair loss as well.

 

Anyone?




#3334509 Repairing the long-term damage from Accutane

Posted by Livetoregret on 19 March 2013 - 12:37 AM

Let us know when it's up! Maybe we can have individual topics for the things we're trying.

 

Yes perhaps; but, maybe we should recognize that no one with real life threatening and debilitating side effects is going to Iherb their way out of this, despite protestations to the contrary by self-confessed Google experts. I mean, it’s only been 30 years with essentially no real inroads made; and, no, liver flushes and colonic irrigations aren’t inroads into anything tangible except your midsection. The best docs who have had the decency to concede their precious meds can ruin peoples’ lives (only a handful) have essentially no idea what has transpired. It may be time to accept that we can’t dog paddle our way to shore. Perhaps we need a foundation with donations so that real research can begin. At the very least, donations could be used to bolster those amassed by the Propecia group; I understand there was some interest by that group.    

I do agree. Were all pretty screwed. I know Im stuck in my own personal hell between losing my hair and my prematurely aged skin etc etc etc

 

My hope is that the combination of mustering up enough support between all of us, my work with the change organisation assisting with media exposure as well as a comprehensive website will bring enough attention to our suffering. Research will only be initiated if there is money to be made - which there clearly is not.

I have the Stem cell Foundation also attempting to help us,

 

Hopefully we wont have to suffer the rest of our lives guys. Strength in numbers. xx




#3334203 Repairing the long-term damage from Accutane

Posted by Livetoregret on 18 March 2013 - 02:56 AM

Navigating this site really sucks. I'm going to start a website.
What do you say?
Once the site once it's up and running we should move all content over and it can be solely focused on accutane. There is not functional website currently and this place has become pointless since everything been moved around.


#3332696 Repairing the long-term damage from Accutane

Posted by Livetoregret on 11 March 2013 - 07:55 PM

 

 

 

Live to regret when you are describing your symptoms it sound exactly as what has happened to me. Every single symptom you are describing is what I am struggling with every day. I used to do little bit of modelling too. I lost 70% of my hair and it falls out every day, it also changed its texture and colour. My skin is fucked. The worst thing is I still have acne which is bizarre as my skin is so dry where is it coming from. It scars so easily and my whole back is covered in spots top to bottom. I never even had back acne before accutane.

Joseph I don't think dry skin and hair loss is caused by an autoimmune response. Accutane affects hair follicles and sebaceous glands. I closes it up, that's it. I don't want to be horrible but i don't think that's reversible. That thought is killing me every day.

I think your right and thats what really fucking scares me....

Many Accutane suffers have been found to have autoimmune conditions in which many autoimmune conditons symptoms are dry skin & hair loss....Such as Autoimmune thyroid, diabetes, celiac, etc....That's not saying that some Accutane suffers just have permanant dry skin or hair loss b/c that has happened also.

Jen we know about the auto immune effect, what about somthing harder to detect like pituitary dysfunction, that's what Im exploring now. 

Well thyroid is one that is part of pituitary and hypothalumus. There is hypopituitarism, which could included failure of the pituitary. Usually either, thyroid disruption, tumor, adenoma, Diabetes Insipidus (diffrent from regular diabetes)  It can effect growth hormone, female hormones, acth etc... Usually lab work and a scan of the pituitary gland if it is not thyroid related. I forgot did what were your iron levels high or low????

 

I really believe with you have a high RA factor and some thyroid off that this is your main problem, the thing is you have stupid doctors there! Look up RA and you will see that it causes KP and other skin disorders not just pain. If I could I'd fly 24hrs there and bring you back to the U.S. for treatment.

Yes I now have a doctor that looking into pituitary function as well as hormonal imbalance/thyroid (again)/RA/ etc etc - never ending merry go round of nothingness..being sent for bone scan and an MRI.




#3331289 Repairing the long-term damage from Accutane

Posted by Livetoregret on 05 March 2013 - 08:37 PM

Oh - For those who say they dont see anything - if you care to make a comparison, heres a link to my old modelling page:

 

http://www.modelmayhem.com/395191




#3331286 Repairing the long-term damage from Accutane

Posted by Livetoregret on 05 March 2013 - 08:05 PM

Its Ok guys, the truth is in my heart -  And I know both my skin & hair are fucked~

That's why Im here - otherwise I would be getting on with my life just like i did while I was on this poison..Anyway - I have kept a diary of symptoms as they developed over time this is all accumulative -  just like this toxic poison of a drug. Shit just keeps building & building...

 

To those who say they cannot see the difference - wtf is wrong with your eyes? I assure you that you are either blind or the photos are not high res enough. I forgive you because you have not seen me in real ife and did see my beautiful hair & skin before.

 But - You dont go from having snow white skin healthy,soft hydrated skin and thick, shiny healthy hair to skin depleted of hydration,collagen & elasticity and rapid loss/drying/ rapid greying of hair over a 2 year period for no reason?!

 

AND -  Im not going to debate the before & after -  I know and I see and feel these effects every waking second of my miserable life - This has been verified by various dermatologists and skin and hair specialists/therapists, So your personal opinions have no value here. Were all taking each others complaints at 'face value'.

 

Current effects of the dried out wood like skin has lead to open pores all over my entire face,deep wrinkles under my eyes that you only see in an elderly person,  this has spread all over my body and my thinned skin is red and blotchy. I look aged and haggard.

I have always looked much younger than my age until this shit.

My gums are also receding from dry mouth, my eyes lashes and brow hair is brittle and falling out. My eyebrows are patchy and fucked. My nails are yellow & brittle and so thin they are transparent.The skin around the cuticles is cracked and peeling.

 

My skin is so fucking dried out that if I rub under my eyes or on my eyelids it drags like its going to tear my entire skin texture has changed and as I sit here typing my eyes are in agony as if I could just pluck my eyeballs out of my head. I cannot believe what I am seeing. My eyelids have dropped,

My lips are so permanantley dried out nothing I put on them has any effect - exact same as my skin. even my neck is painfully dry and is getting deep creases as well as my wrists and shoulders.The skin all over my body burns and has changed to a yellow mottled colour, and I get covered in chicken skin ALL OVER my body. My back, my butt, my legs & arms,neck are covered in acne that does not heal and everything leaves a scar.  I stretch my knuckles and the skin tares its so thin. I had acupuncture and a week later you can still see all the 

My nose, mouth,eyes etc are painfully dry. I feel AND LOOK like the walking dead.

I cannot let the sun touch me for even the 15 min drive home from work, it burns instantly.

 

Supplements Ive tried to date in an effort to undo the damage to my dry and/ shedding hair & bone dry skin (thats done sweet FA): 

mega boosted nutrition including fruit, veg protein. Purified water. Elimination of shit foods,sugar,dairy etc.

A vast array of supplements over the last 1.5 yrs -  ie. Vit C, Vit E, Folic Acid,iron,Vit D, Milk thistle, hyaluronic acid,flax seeds, EPO, liquid silica,collagen powder, hair skin & nails liquid formula,biotin,coconut oil, rosehip oil, about 20 different moisturizers, manuka honey, avocado masks, every possible hydrating mist/mask/treatment you could imagine.

 

Water fasting is fucking useless. Last thing our stressed out systems need, but I did it anyway now Im sick as hell but I haven't had an appetite in 2 years anyway.

 

So hear I am, spent another 280 on Sothy's products over the weekend sure they'll end up on the shelf along with everything else. Spent 130 on acupuncture does nothing 'wellbeing' my ass, um I wish I could leave this body behind, every night I pray I dont wake up tmrw but at 4am bang Im awake. 

 

All my joints pop,crack and burn these days so I guess I also have arthritis to look forward to at a nice young age now.

Fucking awesome. 

 

Supplements will not help, Ive tried everything. Diet nope, I work and I rest thats all I do and my body cannot heal.

To those who say 'dont stress'  - my life has been ripped away and I cannot function to be a wife and employee, a normal fucking human being - and your telling me not to stress? 

 

Im angry, angry & fucking tired and Ive had enough.




#3328082 Repairing the long-term damage from Accutane

Posted by Livetoregret on 19 February 2013 - 10:11 PM

Ok New labs in  and things are looking even more confusing and depressing- 

 

So went again demanded my GP do fresh labs - last done in August...Included with a letter of my results was a letter saying she no longer wants to treat me....

 

Anyway...

 

High Bilirubin (20*) range is 15 or less

still have a low TSH of 0.33 ( normal range is 0.5-4.5) - but normal T3 & T4

Heres a new one - early iron overload has been detected?? Very high Iron (46* normal range is 10-30)but its the trans ferretin saturation of 76* ( normal range 12-45) 

Rheumatoid Factor is a whopping 41* ( normal is less than 14) and my CCP antibodies were negative.

 

..And so my GP throws me on my ass because she's tired of me demanding an answer to what the fuck is happening to me.

Im so angry and so over this shit




#3327294 Repairing the long-term damage from Accutane

Posted by Livetoregret on 16 February 2013 - 06:16 PM

Okay mr Roche advocate- you've been a member of acne.org since 2004 but you don't have acne?  You are touting that you are self medicating with accutane and suggesting others do the same? You come on a thread for accutane side effects sufferers taking the piss out of the petition I am spreading word about -oh and then in a separate thread your disputing factual evidence in relation to the impact it has on the bodies ability to heal.
How dumb do you think people are?
It's well known Roche pay people to track and discount others stories over the Internet and I put it to you that you are an affiliate of Roche trolling this website trying to garner good publicity for this toxic poison.

Get off our forum you have no reason to be here. Also- As I told you before I will take on you or any other roche damage control bots like LoiLoi from medicenet.

I'm coming for you Roche pharmaceuticals.


The petition has less than 400 signature thus far and yet in the text it claims that over 14 million people worldwide have taken Accutane. If the side effects were truly as bad as they're claiming, you'd think they'd be able to acquire a few more signatures. 




#3326901 Severe Side Effects Have Left Me Suicidal

Posted by Livetoregret on 15 February 2013 - 12:06 AM

Im going to make a video about my skin, hair and other side effects and I will post it or link it on here .

I have decided that I am pursuing legal action against both the prescribing dermatologist for negligence and Roche as well.

 

Im a fighter and I will not let this ruin me even if it does become my life story.

 

Thank you for your support. 

 

S.