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Repairing the long-term damage from Accutane

 
MemberMember
23
(@perene)

Posted : 11/04/2019 3:03 pm

Thick blood? You need to perform a few tests.Shortness of breath is one of the symptoms from this:

*******
- Complete blood count: This test screens for the presence of red blood cells and platelets in the blood. High hemoglobin and hematocrit levels could indicate the presence of a condition like polycythemia vera.
- Activated protein C resistance: This tests for the presence of factor V Leiden.
- Prothrombin G20210A mutation testing: This determines the presence of antithrombin, protein C, or protein S abnormalities.
- Antithrombin, protein C, or protein S functional levels: This can confirm the presence of lupus anticoagulants.
****

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Also, impaired wound healing "can result from nutritional deficiencies, including protein, vitamin C and zinc deficiency. Protein-energy malnutrition can affect wound healing. Serum albumin and total lymphocyte count are valid tests of a patients protein nutrition status.Serum albumin levels less than 3.5 mg/dL and total lymphocyte counts less than 1,500/mm3 are associated with delayed wound healing.Researchers have shown that nutritional supplementation with protein dense oral supplements improves wound healing.Malnutrition with resulting zinc and vitamin C deficiency can also result in impaired wound healing. Zinc and vitamin C supplementation may aid in the wound healing process."
*******

As I said earlier don't take these vitamins as if they were harmless unless you have positive proof of a deficiency, otherwise you are gambling with your health. You need to investigate what exactly Accutane did to your body and of course correct your current diet, since most health issues reported in these forums are clearly due to bad choices of what we eat and drink these days.

As for my case, the ZMAI willtrynow will have: a) magnesium taurate (300 mg) + b) zinc picolinate, which is absorbed better(15 mg) and c) 300 mg of malic acid (all combined, and all of this in a singleday) instead of what I am currently using: 256 mg of magnesium, 7 mg of zinc (bothbisglycinate)and 1.3 mg of B-6. I will try this combo for 60 days, along with the weaker one. This new combinationwas mentioned by this link: http://spartantraveler.com/testosterone-diet-2015/ as one of the supplements tried by the guy that claims to have doubled his testosterone, the M3 from PurePharma: https://www.amazon.co.uk/Pure-Pharma-Essential-Minerals-Magnesium/dp/B00BH9OD6A

The difference is that mycompounding pharmacy will not add any of vitamin B-6 (the guy was using 10.5 mg of pyridoxine). Also note there was one user at Amazon saying in a review that it gave him insomnia, probably because of the B-6 (according to him)since he took magnesium and zinc before and never had a problem. It's possible he's right,since I found at least one source saying: "The best time of day to take a B vitamin is after waking up. Taking B vitamins on an empty stomach is supposed to help with absorption of the vitamin. Taking B vitamins also tend to increase energy, so taking them too late in the day may affect a person's ability to fall asleep"

Also, the malic acid present in the ingredients is useful precisely for that boost in energy for a new workout routine I am getting myself into, to increase testosterone.

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MemberMember
1804
(@truejustice)

Posted : 11/04/2019 5:38 pm

Thx for info, Ill look into getting some tests done soon

In relation to the slow wound healing, to me it isnt just a case of supplementing, its more a case of proper absorption post tane - of everything really!!

Our guts are so screwed that digestion and absorption dont take place like they should. Ive supplemented over the years enough to get a result if that was all it took, unfortunately theres more to it. Proper healing of gut post tane for me is near impossible

Ive worked with a kinesiologist weekly for 18 months and still cant fully heal it

 

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MemberMember
23
(@perene)

Posted : 11/05/2019 6:13 am

17 hours ago, TrueJustice said:

Thx for info, Ill look into getting some tests done soon

In relation to the slow wound healing, to me it isnt just a case of supplementing, its more a case of proper absorption post tane - of everything really!!

Our guts are so screwed that digestion and absorption dont take place like they should. Ive supplemented over the years enough to get a result if that was all it took, unfortunately theres more to it. Proper healing of gut post tane for me is near impossible

Ive worked with a kinesiologist weekly for 18 months and still cant fully heal it

 

Have you tried probiotics? I was prescribed once by my nutritionist but didnt take since I dont have a problem in that area, and it was a little expensive. I mean in form of supplement, not fermented foods and stuff like Kombucha and Kefir, which aren't exactly easy to find. Also, eatinga lot of sugar or artificial sweeteners may cause gut dysbiosis, which is an imbalance of gut microbes. Too much antibioticsand lack of exercise and proper sleep can cause some damage, too, thats why I emphasized these points.

Also try to add vitamin K2 (MK-7) as a supplement. I am adding a new stock to the D-3 (2000 UI) I already have. It would be benefitial since we are not getting enough of that from fermented foods, also: https://www.healthline.com/nutrition/vitamin-k1-vs-k2#section5

K2 will help with blood clotting, among other things. It's also detrimental to take one without the other: https://www.healthline.com/nutrition/vitamin-d-side-effects#8

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MemberMember
231
(@fchawk)

Posted : 11/06/2019 6:56 am

On 10/3/2019 at 6:32 AM, Dubya_B said:

Hmm. @fchawk, do you have any idea why your topic was closed/locked/archived?

 

It would be terrible if the mods here were going around locking topics where post-Accutane sexual dysfunction is discussed.

I hopeit was due to inactivity and not a malevelont reason. It wasn't getting much responses, and i guess I can always create a new topic pretty easily

On 11/5/2019 at 10:13 PM, Perene said:

Have you tried probiotics? I was prescribed once by my nutritionist but didnt take since I dont have a problem in that area, and it was a little expensive. I mean in form of supplement, not fermented foods and stuff like Kombucha and Kefir, which aren't exactly easy to find. Also, eatinga lot of sugar or artificial sweeteners may cause gut dysbiosis, which is an imbalance of gut microbes. Too much antibioticsand lack of exercise and proper sleep can cause some damage, too, thats why I emphasized these points.

Also try to add vitamin K2 (MK-7) as a supplement. I am adding a new stock to the D-3 (2000 UI) I already have. It would be benefitial since we are not getting enough of that from fermented foods, also: https://www.healthline.com/nutrition/vitamin-k1-vs-k2#section5

K2 will help with blood clotting, among other things. It's also detrimental to take one without the other: https://www.healthline.com/nutrition/vitamin-d-side-effects#8

+1 on the k2, whenever I take it I feel a small rebound. Been shown to improve mitochondrial dysfunction

 

Oral Consumption of Vitamin K2 for 8 Weeks Associated With Increased Maximal Cardiac Output During Exercise.

https://www.ncbi.nlm.nih.gov/pubmed/28646812

"Vitamin K1 and K2 are not typically common in a Western diet because they are found in a variety of fermented foods. Vitamin K2 in particular has been demonstrated to restore mitochondrial function and has a key role in production of mitochondrial adenosine triphosphate...."

Vitamin K2 Improves Anxiety and Depression but not Cognition in Rats with Metabolic Syndrome: a Role of Blood Glucose?

https://www.ncbi.nlm.nih.gov/pubmed/28068285

I don't think cognition would improve over night anyway, but having improved the the roots of the issue, I'm sure it can help as well..

I totally believe K2 is under-rated

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MemberMember
397
(@calcified)

Posted : 11/06/2019 9:24 am

I'm concerned K2 might increase blood clotting.

Im also worried that it may make my varicose veins worse.

Gut is an issue but if we are poor absorbers of fat soluble vitamins we wouldn't get fat either right? As the years go on it seems to get heaps easier to gain fat quickly.

It's like having fat malabsorption but still getting fatter.

I have no issues with absorbing carbs, its weird.

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MemberMember
23
(@perene)

Posted : 11/06/2019 12:46 pm

On 11/6/2019 at 11:24 AM, Calcified said:

I'm concerned K2 might increase blood clotting.

Im also worried that it may make my varicose veins worse.

Gut is an issue but if we are poor absorbers of fat soluble vitamins we wouldn't get fat either right? As the years go on it seems to get heaps easier to gain fat quickly.

It's like having fat malabsorption but still getting fatter.

I have no issues with absorbing carbs, its weird.

Malabsorption syndrome can be caused by many things... this link lists all of them, what kind of tests can be done to diagnose your specific problem (it isn't just taking your blood...) and what is recommendedto fix this:
https://www.healthline.com/health/malabsorption#risk-factors

The interesting part is that you may have end up having to take a higher dose of a vitamin to compensate for your health problem:

"Your dietitian may recommend high doses of vitamins or other nutrients to make up for those that are not being absorbed by your intestine."

Then there are the enzyme supplements, which can help your body absorb the nutrients it cant absorb on its own, among other stuff.

What I don't recommend is to try anything without medical advice.I am trying these supplements mentioned before, for a while, to see if things will improve, in future blood tests (omega 3 fish oil, D-3 2000 UI which will probably increase from 30 to 50 what I last measured (D levels),and now K-2, ZMA, maca powder at 5g a day...). One of them I already stopped, which is B-6.

About peruvian maca, used to boost libido, Imust point out that consuming thispowderdefinitely makes you want to visit thebathroom more, before I started I only went each couple of days. This weekI noticed blood in my stool, which has been reduced after the 3rd or 4th time, probably a small tear (anal fissure), which can be avoided by drinking lots of water and eating fibers (20-35 grams daily).

It happened very likely due tosaid stool being too bulky or hard to pass through the colon easily. I'll monitor to see if this will stop.

Accutane increases a lot the chances of having inflammatory bowel disease, so you may have serious vitamin deficiencies and don't even know it.

Get tested for vitamin and mineral deficiencies even if you arent showing symptoms of malnutrition. Never trust that you are healthy because if you took this drug then everything is possible and can't be ruled out.

Update: it seems my needto go to the bathroom every single day were from the B-6, not the maca powder. I am almostrecovered, no more blood in stool.

Also adding 5 mg of chelated boron, 1 cp a day. Let's see what effect this has in my T levels. Will take this with D-3 and K-2.

https://forums.phoenixrising.me/threads/do-you-take-boron-with-vitamin-d.18087/

https://vitamindwiki.com/Boron+increases+vitamin+D+in+the+blood

Update, November 21: added Tribulus Terrestris (2 pills a day, from Optimum Nutrition) to help with low libido. I'll report the results in the future. In my case Tribulusmight help with these:

Low LH:1.88
Lab range levels are between 0,57 to12,07

Low DHT:183 pg/mL
Lab range levels are between135 a 1365 pg/mL \r

Tribulus has mixed results: https://selfhacked.com/blog/tribulus-terrestris/

But I noticed some people reported libido increases.

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MemberMember
1804
(@truejustice)

Posted : 11/07/2019 3:21 am

Interesting session with kinesiologist this week.

muscle testing revealed my body still wants to detox Roaccutane....

I didnt go in asking anything. Essentially the testing revealed my brain saying talk to the kidneys, test the kidneys and they indicated talk to the gut, ask the gut and loop fed back to the brain.

So where to from here?

Practitioner wants to do deeper brain work where he thinks some of the tane still resides, however he did warn me through experience that the brain after this work can dump a lot of stuff that the body must rid - for instance not just the tane but many heavy metals too

Anyway, good thing Ive spent a good period of time ridding all the other stuff over last 18 months - breaking down biofilms and bacteria/virus and fungus.

The point is, I dont think Id be ready to embark on this brain detox if I hadnt done all this other work as a foundation

Feeling positive about this next step - its way overdue!!

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MemberMember
223
(@gladiatoro)

Posted : 11/21/2019 1:31 pm

Having acne prone skin means you live longer. Wow.

http://globalnews.ca/news/2970121/having-acne-means-living-longer-while-looking-younger-study/

 

Yet derms try to shove poisondown peoples throats.... one derm said it right its a controlled poisoning. Western culture is obsessed with clear skin we need to get over that.

Dry skin , eyes , hair loss are the long term consequences of isotretinoin. Joint pain and depression are closely linked too. Putting your personality at risk would be a better description.

https://www.huffpost.com/entry/accutane-putting-your-per_b_1314233

So at the end of the day its your decision to make , long life with acne possible reduced quality of life after isotretinoin and reduced life span. I would say unless you have severe disfiguring acne dont do it. Mild to moderate acne not worth it.

 

 

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MemberMember
6
(@mabbbs)

Posted : 11/22/2019 10:11 pm

Did you all read the MedGuides attached with the bottle? Or was that not attached?

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MemberMember
397
(@calcified)

Posted : 11/24/2019 7:13 am

On 11/7/2019 at 6:51 PM, TrueJustice said:

Interesting session with kinesiologist this week.

muscle testing revealed my body still wants to detox Roaccutane....

I didnt go in asking anything. Essentially the testing revealed my brain saying talk to the kidneys, test the kidneys and they indicated talk to the gut, ask the gut and loop fed back to the brain.

So where to from here?

Practitioner wants to do deeper brain work where he thinks some of the tane still resides, however he did warn me through experience that the brain after this work can dump a lot of stuff that the body must rid - for instance not just the tane but many heavy metals too

Anyway, good thing Ive spent a good period of time ridding all the other stuff over last 18 months - breaking down biofilms and bacteria/virus and fungus.

The point is, I dont think Id be ready to embark on this brain detox if I hadnt done all this other work as a foundation

Feeling positive about this next step - its way overdue!!

Do you have any updates regarding Tane brain removal? I find this interesting as people keep saying how it definitely changes the brain afterwards as seen in studies.

On 11/23/2019 at 1:41 PM, Mabbbs said:

Did you all read the MedGuides attached with the bottle? Or was that not attached?

I didn't it was longtime ago, sorry. Can't even remember there being one.

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MemberMember
45
(@cnb30)

Posted : 12/24/2019 9:42 pm

Why has the page gone silent all the sudden? Are things working for people?

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MemberMember
715
(@thomas76)

Posted : 12/26/2019 12:15 pm

Will update soon.

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MemberMember
715
(@thomas76)

Posted : 12/26/2019 2:19 pm

let me be the guinea pig. I will report regularly soon.

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MemberMember
19
(@anna-nim)

Posted : 12/29/2019 1:47 pm

On 12/24/2019 at 8:42 PM, cnb30 said:

Why has the page gone silent all the sudden? Are things working for people?

Nothing works. There is no medical help for permanent brain and body damage. :( 

There was an article in The Guardian regarding the 11 reported sucides in the UK from this drug this past year. I am certain the number is higher. This drug causes brain and body damage. With permission, I will repost my friend's response to the article that she posted on one of the accutane support sites. This is NO cure, but information getting out for others who may show up...With Love and Support: 

To anyone coming here because of The Guardian article: As per usual with the media, this article COMPLETELY MISSES THE POINT ABOUT THE DANGERS OF ACCUTANE!!!

To those of you saying "You're warned about the risks!" I thought I was, too.

YES, there are giant suicide warnings for accutane, all over the blackbox - just like with SSRI's and other psych drugs.

Before taking the drug, I KNEW that suicidal impulses while on the drug were a possible side effect. Anyone who reads the label knows this! As long as you're aware, the solution is really simple, right!? Don't kill yourself, get help, and stop taking the drug. Right?

WRONG.The MAIN issue regarding safety with this drug, unlike what 99% of media articles focus on (suicide while on it, or 'controversial, unproven' IBS risks) is that the permanent physical damage can start while on OR after stopping it.

THIS IS THE REAL REASON FOR SUICIDES ASSOCIATED WITH ACCUTANE!

For those severely damaged/disabled/ left stuck in an agonizingly painful body, the physical/mental suffering is so immense that life isn't worth living and they end their lives just to end the suffering. It is disrespectful and unfair to make the 'accutane suicide' discussion revolving around risks of suicidal thoughts just while on the drug. Most accutane-related suicides are unreported because they happen months/years after exposure.

With myself and SO many others, we read the label, informed of the (mostly temporary, except night vision loss & hearing issues/ sequelae of pseudotumor cerebri, which also happens with antibiotic use plus a couple other rare things) possible side effects & we thought we had informed consent.

NONE of the accutane-injured people I've spoken with felt they were adequately warned by their prescribing physician/drug label about serious permanent (& sometimes disabling) physical problems, often starting not on the drug but after the drug is stopped, including:

-progressively deteriorating joints & destruction of synovial membrane/fluid (possible joint pain/arthralgia & DISH mentioned with high doses/long term, but NEVER mentioned that this could occur AFTER discontinuation with no prior joint pain/warning while on the drug. 'Joint pain' in the insert is never classified as permanent synovial damage, but rather vaguely associated with a mostly temporary inflammatory reaction or possible DISH, which isn't anywhere as serious as synovial damage. The label is incredibly misleading as well as physicians' understanding of this issue.)

-permanent muscle damage (that occurs w/out warning such as weakness/pain after the drug is stopped - not just rhabdomyolysis, a rare condition that can be caused by many different drugs, as is mentioned in the insert! My muscles were 100% fine on the drug, I was climbing & biking extensively, 5 month after quitting they broke down and I could barely walk!)

-progressive degenerating/desiccated discs (not listed at all in insert. I & many others had perfectly fine back/discs on the drug, months/years after developed early degeneration)

-bodywide tendon/ligament/bone/muscle pain & damage (mentioned as 'rare' side effect in the insert, but NOT mentioned that this can occur after discontinuation & progressively worsen with time. My body fell apart 5 months after I quit, with little to no warning while on it)

-permanent sexual dysfunction (not listed at all in insert!)

-IBS/Crohn's (mentioned it could occur while on the drug and persist, but never mentioned it could occur months or years after exposure. This controversial effect is refuted by all but one major dermatology studies, & most derms don't even believe there's a link at all! My doctor flat out denied it, saying it was a 'myth'. The studies on IBS/Crohn's/IBD stating 'no connection to accutane' are totally fraudulent!)

-permanent serious BRAIN DAMAGE (not listed in insert! Depression, yes, brain damage no! Also can occur while on or after discontinuation)

-permanent meibomian gland dysfunction that starts AFTER stopping the drug with 0 symptoms whilst on it (happens to A LOT of people, also not listed insert and denied by most doctors despite existing research. Most dermatologists & even some ophthalmologists I speak to completely deny this as being a possible permanent issue. 5 years after stopping, I have now developed minor MGD and it doesn't run in my family...)

-visual disturbances - permanent night blindness is mentioned in insert, but development of floaters & progressive eyesight deterioration after discontinuation is not. Also, permanent visual issues are largely underestimated and listed as 'rare' when in fact they are fairly common!

-organ damage - your organs can be permanently damaged either on or months after stopping the drug, with or without abnormal lab results. Insert mentions that permanent organ damage is possible while on the drug and that 'it may not return to normal after'. Many of us thought we were being appropriately monitored only to find organ damage occurring months/years after discontinuation.

-permanent skin damage- the insert/physicians emphasize that cutaneous side effects are temporary and return back to normal within 6 months. I, and many others, find that skin becomes permanently fragile, thin, aged, dry, and overall damaged. For some, this damage occurs AFTER stopping the drug. No warning about that! Most doctors I've spoken to say it's 'antiaging' & deny that the majority of people get permanent dryness and aging! Bullshit!

-alopecia - mentioned in the insert, but NEVER mentioned that permanent hair loss can happen AFTER stopping the drug, with/without hair shedding on the drug. VERY underestimated - most docs will say they've "never heard of this and it's extremely rare, only at higher doses". Bullshit! I know SO many people who permanently lost 50% of their hair, even with low dose.

-neuropathy / paralysis - another severe damaging effect that can occur after stopping, is never mentioned in the insert

-permanent feeling of illness, chronic fatigue, malaise & general severe sense of poisoning/unwellness: so many accutane users report this post-accutane. I didn't have an ounce of malaise/fatigue on the drug but 5 months after quitting I felt incredibly ill, this feeling has only worsened with time 5 years later

-& many many others....

So bottom line: I was really disappointed with The Guardian article on accutane risks/suicide. It's the same as every single news article I've read about accutane and does NOTHING to inform us about the TRUE risks of accutane. EVERYONE KNOWS that accutane has been linked to possible suicide risk to patients who are taking it. That's not the scary part. I knew that & it didn't me from taking it... most of us were CERTAINLY not informed about everything listed above.

MANY PEOPLE KILL THEMSELVES MONTHS OR YEARS AFTER STOPPING ACCUTANE for the reasons listed above!

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MemberMember
45
(@cnb30)

Posted : 12/30/2019 2:14 am

Look its obvious that most people have these permanent side effects if they do nothing, but from personal experience, to say nothing is at least manageable, is bat-shit-crazy, but you have to WORK for it.

I have been able to periodically restore my sex-drive and mental clarity frequently for the past couple years, with my diet changes, and 3+ years of tackling the problems head on. I no longer experience stomach pain, muscle or joint pain, my brain fog is mostly gone as well. You are DELUSIONAL to claim that it is impossible to fix any of these problems.

However, YES there are still many other side effects which I am dealing with and I do not expect to ever recover 100% from (such as mental and emotional).

I understand if what you are saying is specifically directed at people from the Guardian post: of course the issues are serious and the drug company is full of blood thirsty corporatecapitalist leeches who manipulate people in order to gain a decent profit, and what has happened with Accutane has been a worst offender. We were all very much lied to, and seriously screwed over.These last 3-4 years have been Hell, and I dont expect the next 3-4 to be easy either.However, to say that nothing is reversible or manageableis a blatant lie. You justhave to go through an insane number of hoops to get there.

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19
(@anna-nim)

Posted : 12/30/2019 3:21 pm

12 hours ago, cnb30 said:

Look its obvious that most people have these permanent side effects if they do nothing, but from personal experience, to say nothing is at least manageable, is bat-shit-crazy, but you have to WORK for it.

I have been able to periodically restore my sex-drive and mental clarity frequently for the past couple years, with my diet changes, and 3+ years of tackling the problems head on. I no longer experience stomach pain, muscle or joint pain, my brain fog is mostly gone as well. You are DELUSIONAL to claim that it is impossible to fix any of these problems.

However, YES there are still many other side effects which I am dealing with and I do not expect to ever recover 100% from (such as mental and emotional).

I understand if what you are saying is specifically directed at people from the Guardian post: of course the issues are serious and the drug company is full of blood thirsty corporatecapitalist leeches who manipulate people in order to gain a decent profit, and what has happened with Accutane has been a worst offender. We were all very much lied to, and seriously screwed over.These last 3-4 years have been Hell, and I dont expect the next 3-4 to be easy either.However, to say that nothing is reversible or manageableis a blatant lie. You justhave to go through an insane number of hoops to get there.

It is not a Blatant Lie nor Delusional to say that there is nothing that can be done, but thanks for the ALL CAPS words, I guess?? The post regarding the Guardian article details a lot of the permanent issues that this drug causes that newbies or people who are considering/newly taking this drug may see in advance and not take it. Periodically and frequently improvements that then leave is not exactly great news to me. I would think that if it works, then you keep doing that thing and it stays managed or fixed. My son is supposed to be graduating high school, going into the world and here I am trying to help him so he can do it successfully. I don't see his dyslexic self pouring over these 700 long agonizing pages of heartbreak..for what, mountains of things that are tried and do not work or only work 'periodically'. He won't live with me forever and I won't be able to help him on a daily basis if he is out in the world, possibly alone and broken.

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MemberMember
10
(@fighback)

Posted : 12/30/2019 3:37 pm

On 11/6/2019 at 11:56 AM, fchawk said:

I hopeit was due to inactivity and not a malevelont reason. It wasn't getting much responses, and i guess I can always create a new topic pretty easily

+1 on the k2, whenever I take it I feel a small rebound. Been shown to improve mitochondrial dysfunction

 

Oral Consumption of Vitamin K2 for 8 Weeks Associated With Increased Maximal Cardiac Output During Exercise.

https://www.ncbi.nlm.nih.gov/pubmed/28646812

"Vitamin K1 and K2 are not typically common in a Western diet because they are found in a variety of fermented foods. Vitamin K2 in particular has been demonstrated to restore mitochondrial function and has a key role in production of mitochondrial adenosine triphosphate...."

Vitamin K2 Improves Anxiety and Depression but not Cognition in Rats with Metabolic Syndrome: a Role of Blood Glucose?

https://www.ncbi.nlm.nih.gov/pubmed/28068285

I don't think cognition would improve over night anyway, but having improved the the roots of the issue, I'm sure it can help as well..

I totally believe K2 is under-rated

fchawk - you should start another SD thread and if everyone who has concerns about the sexual sides - please comment and I can direct the regulators to that thread.

 

https://www.theguardian.com/society/2019/dec/27/suicides-linked-to-acne-drug-roaccutane-as-regulator-reopens-inquiry?fbclid=IwAR0z7R2jgK1IIWTql_

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MemberMember
10
(@fighback)

Posted : 12/30/2019 4:18 pm

https://www.theguardian.com/society/2019/dec/27/suicides-linked-to-acne-drug-roaccutane-as-regulator-reopens-inquiry?fbclid=IwAR0z7R2jgK1IIWTql_

 

Finally a review and the first where victims are able to share their experience. If you can visit London you can meet the Expert working Group(review team) face to face. A Sykpeappointment can be made and or you can just send in an email for the attention of the EWG.

Roche can;t keep killing kids and destroying the health of so many others - please speak up now - this is such an opportunity.

PM me for more details and or email MHRA directly. [email protected]

I have a personal contact but can only give in a PM.

 

PLEASE ACT NOW _ REVIEW TAKES PLACE IN A FEW WEEKS TIME!!

 

https://www.dailymail.co.uk/news/article-7830129/Ten-suicides-year-linked-powerful-acne-drug-Roaccutane-figures-show.html?ito=social-facebook

 

You can comment on this one - it all helps

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19
(@anna-nim)

Posted : 12/30/2019 5:48 pm

1 hour ago, Fighback said:

https://www.theguardian.com/society/2019/dec/27/suicides-linked-to-acne-drug-roaccutane-as-regulator-reopens-inquiry?fbclid=IwAR0z7R2jgK1IIWTql_

 

Finally a review and the first where victims are able to share their experience. If you can visit London you can meet the Expert working Group(review team) face to face. A Sykpeappointment can be made and or you can just send in an email for the attention of the EWG.

Roche can;t keep killing kids and destroying the health of so many others - please speak up now - this is such an opportunity.

PM me for more details and or email MHRA directly. [email protected]

I have a personal contact but can only give in a PM.

 

PLEASE ACT NOW _ REVIEW TAKES PLACE IN A FEW WEEKS TIME!!

 

https://www.dailymail.co.uk/news/article-7830129/Ten-suicides-year-linked-powerful-acne-drug-Roaccutane-figures-show.html?ito=social-facebook

 

You can comment on this one - it all helps

Can I suggest you make a new thread on this? All the more locations the better! Also, THANK You for saying the time frame!

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MemberMember
715
(@thomas76)

Posted : 01/03/2020 3:34 am

Anna I've been working on a protocol based on the theory from the naturecrazy guy and his 8 tips for reversing accutane damage that is on YouTube. Google search 8 tips for reversing accutane damage and his YouTube video should come up. I believe his theories of exactly what the problem is are fundamentally sound, he's simply wrong about how to go about fixing the problem. A new product comes in Saturday, which will be a third component of my latest protocol. Will report any progress next week if it occurs. Take care for now.

And a new thread is not necessary. A new thread would only create more work for people searching for a cure, not less. This is one of the central places accutane people come to. Create a new thread and a lot of people would miss it.

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715
(@thomas76)

Posted : 01/06/2020 11:24 am

Still working on protocol. Update soon.

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1804
(@truejustice)

Posted : 01/07/2020 12:25 am

Ive now got issues with DNA, exactly what that entails Im yet to find out, due to go back to kinesiologist in coming weeks and Ill take notes on exactly what they mean and how its treated

I really need some more clear cut answers from them, the practitioner himself has issues with arthritis in his hands, hesseeing a Russian doctor as kinesiology can only do so much for it apparently.He may put me onto him with this DNA issue he mentioned on last visit

He said most people are completely wiped from myissue, hes surprised how well I look he said.....Im good at keeping it all together though,he doesnt realise just how fucking tired I really am after 22 years, he has some idea I guess but it takes its toll trying to put on a brave face all the time

18 months of kinesiology work done now, Im prepared to go about 1 more year with them but I want to commence deeper work as does practitioner. If we determine kinesiology cant do any more Ill move to working with this Russian doctor. Have no idea what his methods are but they are known to use peptides etc etc

Enough is enough!!

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(@sila)

Posted : 01/08/2020 3:42 pm

Did somebody get positive bloodwork with ANA and Anti DSNA? And how to get rid of this

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(@anna-nim)

Posted : 01/09/2020 1:26 pm

On 1/3/2020 at 2:34 AM, Aaron76 said:

Anna I've been working on a protocol based on the theory from the naturecrazy guy and his 8 tips for reversing accutane damage that is on YouTube. Google search 8 tips for reversing accutane damage and his YouTube video should come up. I believe his theories of exactly what the problem is are fundamentally sound, he's simply wrong about how to go about fixing the problem. A new product comes in Saturday, which will be a third component of my latest protocol. Will report any progress next week if it occurs. Take care for now.

And a new thread is not necessary. A new thread would only create more work for people searching for a cure, not less. This is one of the central places accutane people come to. Create a new thread and a lot of people would miss it.

A new thread would help. People get burnt out trying to go thru the 700 pages of this thread.

This is the letter I sent to the UK review board. I feel that they will do the usual, "Benefits outweigh the costs" and keep this brain and body damaging poison on the market. I feel that money and denial will just perpetuate the damage to all of us. If you have not already, report your side effects to the FDA, or Yellow Card (UK).

[email protected]

MHRA,
I am writing in regards to the upcoming inquiry regarding Roaccutane/Accutane/Isotretinoin as a concerned parent. I firmly believe this is the most dangerous drug on the market today. No amount of blood work, monitoring, or expanded PIP's will make this drug safe enough for the bodies and brains of our young people.My previously entirely healthy, happy son has been damaged permanently by this drug and it should be taken off the market.
Side effects of this drug are grossly underreported. Because of this, the public believes it is not as dangerous as it is. The term "side effects" does not do justice to the horrors this drug causes. Permanent brain fog, permanent sexual issues, permanent vision issues, permanent depression and permanent joint pain, triggering of autoimmune diseases and cascading health issues from the gut/brain malabsorption are caused by this brain-damaging chemotherapy-type drug. If the public knew that the risk of PERMANENT damage was as high as it is, then few would take it. In fact, sheer disbelief and denial over how bad this drug is is what leads to its continued presence on the market. Surley, the government would not allow a drug that is this bad on the market for 35 years, right? Knowing what I know now, it is unbelievable that this is still on the market.
My beautiful, only son, my only child, took Roaccutane for about 6 months two years ago and seemed to do okay with normal side effects (dry skin, bloody nose, etc). I now realize that it stunted his growth. He is no taller than myself or his father, despite having very tall brothers and uncles on both sides of the family. He also has had and some other issues that I now realize is likely from the drug, although I did not realize it at the time. My Doctor had told us that there was a "very small risk" of growth stunting, depression, dry skin and not to get pregnant. Any paperwork would have been dismissed as, "All drugs have side effects." How wrong I was.
The real trouble started when his acne returned. I thought that a short second course would be appropriate, especially since his first round was "successful". In July 2019, he started taking 80 mg a day.Two and a half months into his course, he came to me and told me that he noticed something wrong with his penis. He stopped taking it THAT day. Now, almost four months later he still has raised testicles (unsure if they are shrunken or simply higher), Peyronie's Disease (curvature), his penis has rotated on axis, and has a possible decrease in size of penis. He previously reported excessive post-orgasim exhaustion, issues with rebound rate, decreased sensitivity and libido issues as well.
As his mother, I should not know this much about his sexual functioning. Imagine how scared he had to be to come to his mother about this! I am still awaiting the results of complete blood work checking his hormone levels. Although, I have discovered due to this drug damaging your pituitary gland, that even if he is lucky enough to have 'normal' blood work, the hormones may not be uptaked into the brain. I have personally spoke to almost a dozen other men with permanent sexual issues from this drug, some of them decades afterwards. I have also spoken to people with other permanent issues decades later.
People find it hard to believe my son has so many issues from a legal drug. It seems impossible, until you realize how common this is. There are Facebook groups with thousands of members suffering from side effects. It is an open secret.My son has ongoing joint pain, changes to the texture of his hair (because it is a chemotherapy-type drug), sleeping issues, ongoing low energy, and stomach issues. He lost weight; a lot of it. He is 1.55 meters and only 60 kg, despite my attempts to fatten him up. His stomach is bothered by almost everything he eats. My son is worried his hair is thinning, and I think he is right. Worse, he has developed light sensitivity, decreased vision issues and appears to have some sort of blind spot at night in the center of his vision. A trip to a regular opthamologist shows no issues, we will be seeing a neurologist opthamologist when I can get him in, but I have little hope doctors can do anything. They do not seem to do anything after this drug damages the body and are in denial. The dermatologist wipes their hand of you, the specialists are in denial and the patient is doomed.
My son also became very, very depressed on this drug. He and I talked about it, his doctor talked about it. I watched as he became negative, irritable and depressed-but yet, the Doctor continued to prescribe it. It was not until he had been off the medication for a few weeks that he realized just how depressed he was. We thought we were aware of the effects of this drug, we were paying attention and looking for signs, yet my son was floored at how much better he felt off of it. That is terrifying. No one realized how bad it was.
In regards to the suicide risk; suicides are not due to the oft-quoted "predisposition to depression" mindset. If so, you would think simply getting off the drug when your depression gets too much, and monitoring by concerned, loving parents and mindful doctors would stop it. But it is not the case,this drug literally changes the very way a person thinks. It induces psychosis and irrational thinking without warning.
Do not underestimate the silent epidemic of young men suffering from permanent erectile dysfunction, testicular pain, genital numbness, lack of bility to orgasim, and libido as part of the, "Isotretinoin Suicides". The effect of a young man losing their sexual functioning absolutely causes suicide. Due to the type of nerve or brain damage to the sexual organs/part of brain, doctors are little help. Many suicides from sexual or other permanent issues caused by this dangerous drug, but they occur months and years later out of sheer desperation.
Money makes the world go around, but at the cost of our young people's bodies and minds. This drug is far more dangerous than realized. While not everyone suffers permanent side effects, I feel that no one escapes unscathed. The damage is cumulative. No amount of regulation will make this safe. None. It is like asking, "How much rat poison is safe?" The answer is none.
Please take action to save other children.
Respectfully,
(name redacted)
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(@thomas76)

Posted : 01/09/2020 3:12 pm

Anna, thank you for contacting the organization. I'd be very curious to hear their response. I think your two biggest problems are 1, wasting your time and money with clueless doctors and their worthless tests, and 2, your complete lack of faith in God's natural cures. If you can overcome these two things then your son has a fighting chance. If you continue to waste time and money on doctors, and continue to ignore the healing power of God's natural creations, your situation remains hopeless. I'm trying a new combination tonight. Will post if any success. God created a cure for every health situation on the planet, including man-made diseases like accutane damage.

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