Notifications
Clear all

Repairing the long-term damage from Accutane

 
MemberMember
184
(@monsterdiesel)

Posted : 12/07/2016 12:13 am

3 hours ago, MovingOnMusicGal said:

I LOVED Pilocarpine when I took it. Got it for dry mouth from my dentist, and let me tell. It's nice to produce saliva and have a libido back! Never thought of the eye drops!

If you have intracranial pressure try daily head massages. I do one massage every day sitting in the shower. I've actually grown accustomed to liking it. It seems to release hormones from the scalp. I know this sounds strange, but my skin is smoother and more palpable after I do it. I also notice less pain overall after head massages. Taking it a step further, I add CBD oil to warm carrier oil for scalp pain (more infrequently, but still shows strong effects). Works wonders. Also, Iodine obliterates brain fog and overall pressure when I take it.

How much Iodine do you use?

On another note,Funny all this talk about Muscarinic agonists. I've been trying to get my hands on bethanechol, which works like pilocarpine but doesn't cross the BBB. I took a muscle relaxant, baclofen and it had some strong anticholinergic effect. 2 months after stopping and my libido is still flat dead and my bowels aren't moving. Hoping the bethanechol will reset my system again.

Quote
MemberMember
1753
(@truejustice)

Posted : 12/07/2016 12:20 am

2 hours ago, brandon0717 said:

I'm glad someone else has had a positive experience with pilocarpine. I've done more research about it. It's an M3 muscirinic acetylcholine agonist. The positive effects could be from the boost in acetylcholine. I also read it agonizes another hormone that regulates vasodilation and vasoconstriction which I think plays a huge role in my vision improvement and cognition improvement. I'll post some links about the HPT axis and how the M3 muscirinic agonist's mechanism of action has restored my sex drive.

It looks interesting, I know it's been discussed before but has anyone been diagnosed with Sjogren's syndrome?? I know our issues mimic this condition but I want to know if anyone actually has been fully diagnosed as having it?

Taking pilocarpine comes with potential side effects so unless I have sjogrens syndrome for sure I would rather not take it.

Quote
MemberMember
0
(@abi72)

Posted : 12/07/2016 2:42 am

11 hours ago, brandon0717 said:

I've made 2 breakthroughs and in my recovery from accutane side effects. Pilocarpine eye drops and oral hydrocortisone tablets. I discovered hydrocortisone tablets 10mg work amazingly! They miracously alleviated most of my symptoms except for my vision issues, sex drive and they improved my cognition but not fully to pre accutane. The pilocarpine drops help absolutely every symptom but you can't over do them. The pilocarpine was kind of a coincidence because I received from an ophthalmologist who prescribed them because I had elevated intraocular pressure, which was probably partially causing my vision issues, but they gave me my natural energy back fully, my cognition and memory are amazing again, I'm tutoring math and science again ! And my sex drive is ridiculous again lol both of these medications seem to be affecting my adrenal glands. The pilocarpine is a muscirinic acetylcholine agonist as well and may target nerves that send signals to the adrenal glands.

This is really interesting. We suspect that accutane may have an effect of many glands so both the meds you mention are worth further consideration. Can you tell us more about why your dotor prescribed them. I wondering if you started getting acne again, I am sure this would be a good sign. Where are you from?

Quote
MemberMember
50
(@ehohel)

Posted : 12/07/2016 8:03 am

5 hours ago, hatetane said:
16 hours ago, brandon0717 said:

I've made 2 breakthroughs and in my recovery from accutane side effects. Pilocarpine eye drops and oral hydrocortisone tablets. I discovered hydrocortisone tablets 10mg work amazingly! They miracously alleviated most of my symptoms except for my vision issues, sex drive and they improved my cognition but not fully to pre accutane. The pilocarpine drops help absolutely every symptom but you can't over do them. The pilocarpine was kind of a coincidence because I received from an ophthalmologist who prescribed them because I had elevated intraocular pressure, which was probably partially causing my vision issues, but they gave me my natural energy back fully, my cognition and memory are amazing again, I'm tutoring math and science again ! And my sex drive is ridiculous again lol both of these medications seem to be affecting my adrenal glands. The pilocarpine is a muscirinic acetylcholine agonist as well and may target nerves that send signals to the adrenal glands.

This is really interesting. We suspect that accutane may have an effect of many glands so both the meds you mention are worth further consideration. Can you tell us more about why your dotor prescribed them. I wondering if you started getting acne again, I am sure this would be a good sign. Where are you from?

Unless you intend on taking cortisol steroids for life, then don't start.

Quote
sacha_n, sacha_n and sacha_n reacted
MemberMember
223
(@gladiatoro)

Posted : 12/07/2016 11:01 am

15 hours ago, macleod said:

Based onencouraging resultsin two early-stage studies, Roche (OTCQX:RHHBY) initiates two Phase 3 clinical trials assessing the combination ofTECENTRIQ(atezolizumab),Cotellic(cobimetinib) andZelboraf(vemurafenib) in patients with metastatic melanoma (MM).

Results from a Phase 1b study in 30 patients with BRAF-positive MM who were treated with the combination showed an 83% (n=24/29) response rate including three complete responders. Grade 3 or 4 adverse events were observed in 40% of the patients but all resolved after intervention.

Results from another Phase 1b that assess the combination of TECENTRIQ with Cotellic in 22 patients with metastatic melanoma who had received a median of one prior line of therapy but not a PD-1/PD-L1 inhibitor showed an overall response rate of 45% (n=10/22) (50% in BRAF wild-type patients and 40% in BRAF-mutant patients). Median progression-free survival was 12 months in non-ocular melanoma patients (15.7 months in BRAF wild-type and 11.9 months in BRAF-mutant). Grade 3 or 4 adverse events were reported in 59% (n=13/22) of subjects but all were manageable.

so, techcentriq is their new blockbuster. they are relying heavily on it for the future as they are under attack by other pharma companies developing "bio similars" aka generics. they will do literally ANYTHING to make techcentriq succeed at this point.

Just for reference this is the definition of grade 3 and 4 side effects, btw the scale only goes to 5, which is of course death.

Grade 3 Severe Adverse Events
Grade 4 Life-threatening or disabling Adverse Events

https://ctep.cancer.gov/protocoldevelopment/electronic_applications/docs/ctcaev3.pdf

If tecentriq fails, they probably lose big time and back to price gouging and vitamin spiking to get back in the black the next year

Wow that company is a giant $lut. A synthetic $lut lol.

Quote
MemberMember
9
(@brandon0717)

Posted : 12/07/2016 11:35 am

I know there's concerns about hydrocortisone. Here's the weird thing... since taking the pilocarpine over 2 months ago I haven't needed the hydrocortisone. My energy has been great again, I almost don't remember exactly how my "normal energy" felt pre-accutane but I have a ton now. And it was so up and down even with the cortisone and so was my sleep pattern, but now its so natural. I'm going back to my endocrinologist soon. I know this is a very subjective statement, but I haven't felt this happy in a long time, all my emotions are more intense like they used to be. Even some of my social anxiety is returning, not horrible but to a more natural intensity. My acne will slightly flare up again from time to time but it's very very minimal. The hydrocortisone helped my constipation tremendously but the relief was also dose dependent. After the pilocarpine it's very regular and healthy. Here's the odd thing, I'm hoping this is a good thing... after taking the pilocarpine everyday for the first week, I only had to take one dose per week after that and I maintained the symptom improvement. I haven't taken them for over 2 weeks now and I still feel great in regards to all symptoms. I'm trying to make sense of it, the half-life of pilocarpine is short and I'm starting to wonder if these improvements could actually be permanent.

Quote
MemberMember
50
(@ehohel)

Posted : 12/07/2016 12:00 pm

25 minutes ago, brandon0717 said:

I know there's concerns about hydrocortisone. Here's the weird thing... since taking the pilocarpine over 2 months ago I haven't needed the hydrocortisone. My energy has been great again, I almost don't remember exactly how my "normal energy" felt pre-accutane but I have a ton now. And it was so up and down even with the cortisone and so was my sleep pattern, but now its so natural. I'm going back to my endocrinologist soon. I know this is a very subjective statement, but I haven't felt this happy in a long time, all my emotions are more intense like they used to be. Even some of my social anxiety is returning, not horrible but to a more natural intensity. My acne will slightly flare up again from time to time but it's very very minimal. The hydrocortisone helped my constipation tremendously but the relief was also dose dependent. After the pilocarpine it's very regular and healthy. Here's the odd thing, I'm hoping this is a good thing... after taking the pilocarpine everyday for the first week, I only had to take one dose per week after that and I maintained the symptom improvement. I haven't taken them for over 2 weeks now and I still feel great in regards to all symptoms. I'm trying to make sense of it, the half-life of pilocarpine is short and I'm starting to wonder if these improvements could actually be permanent.

Well best of luck to you. Unfortunetly I did not reap the same lasting benefits from my cortisol experience.

Quote
MemberMember
223
(@gladiatoro)

Posted : 12/07/2016 1:06 pm

12 hours ago, TrueJustice said:
It looks interesting, I know it's been discussed before but has anyone been diagnosed with Sjogren's syndrome?? I know our issues mimic this condition but I want to know if anyone actually has been fully diagnosed as having it?

Taking pilocarpine comes with potential side effects so unless I have sjogrens syndrome for sure I would rather not take it.

Chronic cellular dehydration painfully and prematurely kills , sadly correct.

Quote
MemberMember
9
(@brandon0717)

Posted : 12/07/2016 2:02 pm

16 hours ago, MovingOnMusicGal said:

I LOVED Pilocarpine when I took it. Got it for dry mouth from my dentist, and let me tell. It's nice to produce saliva and have a libido back! Never thought of the eye drops!

If you have intracranial pressure try daily head massages. I do one massage every day sitting in the shower. I've actually grown accustomed to liking it. It seems to release hormones from the scalp. I know this sounds strange, but my skin is smoother and more palpable after I do it. I also notice less pain overall after head massages. Taking it a step further, I add CBD oil to warm carrier oil for scalp pain (more infrequently, but still shows strong effects). Works wonders. Also, Iodine obliterates brain fog and overall pressure when I take it.

 

19 hours ago, Gladiatoro said:
19 hours ago, TrueJustice said:
Can you elaborate some more please. Do you suffer from intracranial pressure too??

Did the Ophthalmologist conclude that this eye pressure isindeed from Accutane? He may of prescribed pilocarpine for other tane victims Im thinking!!??

Im just trying to connect the dots because I still suffer from the intracranial pressure, light sensitivity 20 years post tane. This systemic inflammation many of us have must all be related....

100% related.

 

1 hour ago, ehohel said:
Well best of luck to you. Unfortunetly I did not reap the same lasting benefits from my cortisol experience.

I forgot to mention, since shortly after taking the pilocarpine I haven't taken any hydrocortisone. It's been almost 2 months. I believe the pilocarpine is key, I'm sure there are more affective M3 muscarinic agonist available. I can even binge drink again and I feel fine the next day, except the occasional hangover hah. The intracranial pressure is also gone. Referring to the iodine, I tried it before but I didn't notice any relief. I can't believe how great my memory and vision are again. There's something too it.

My Ophthalmologist prescribed the pilocarpine because my intraocular pressure tested high.

Quote
MemberMember
33
(@ihateaccutane)

Posted : 12/07/2016 3:53 pm

On 5 Aralik 2016 at 7:03 PM, Gladiatoro said:
Wow penile shrinkage how old are you?

I was 33 when all this shit started.
2 months 40mg per day

Quote
MemberMember
50
(@ehohel)

Posted : 12/07/2016 3:57 pm

1 hour ago, brandon0717 said:

 

 

I forgot to mention, since shortly after taking the pilocarpine I haven't taken any hydrocortisone. It's been almost 2 months. I believe the pilocarpine is key, I'm sure there are more affective M3 muscarinic agonist available. I can even binge drink again and I feel fine the next day, except the occasional hangover hah. The intracranial pressure is also gone. Referring to the iodine, I tried it before but I didn't notice any relief. I can't believe how great my memory and vision are again. There's something too it.

My Ophthalmologist prescribed the pilocarpine because my intraocular pressure tested high.

Interesting info, I'll note your experience. Next trial for me is anastrozole, I'm having high hopes for this one.

Quote
MemberMember
223
(@gladiatoro)

Posted : 12/07/2016 7:13 pm

3 hours ago, MrErdem said:
I was 33 when all this shit started.
2 months 40mg per day

Wow.

Quote
MemberMember
5
(@helpmeoutbuddies11)

Posted : 12/07/2016 9:34 pm

I have been having many symptoms of hypo and hyperthyroidism but got tests and levels are completely normal. Even my doctor, who sucks, thinks it's extremely unusual as he thought I had both hypo and hyper when he saw symptoms. These symptoms started right at the end of my accutane course. Anyone have experience with accutane and thyroid? How can we locate this systemic inflammation we have? I feel like there should be a way to go in and find out where it's coming from. Accutane produces so much crap but somehow hides all of it. I'm about done.

Quote
macleod, macleod and macleod reacted
MemberMember
1753
(@truejustice)

Posted : 12/07/2016 10:56 pm

2 hours ago, helpmeoutbuddies11 said:

I have been having many symptoms of hypo and hyperthyroidism but got tests and levels are completely normal. Even my doctor, who sucks, thinks it's extremely unusual as he thought I had both hypo and hyper when he saw symptoms. These symptoms started right at the end of my accutane course. Anyone have experience with accutane and thyroid? How can we locate this systemic inflammation we have? I feel like there should be a way to go in and find out where it's coming from. Accutane produces so much crap but somehow hides all of it. I'm about done.

Unfortunately given that most tests are inconclusive post Accutane we are left with either the choice of ignoring our problems ( there are times over last 20 years where I've done this ) or our other option is to experiment with whatever gets discussed on forums like this one i.e supplements or new drugs etc.

Dont expect time to heal you though - after 20 years it only gets worse!!

You start to question God and why any of this shit should be happening......if you get an answer I'm all ears cause I'm spiritually bankrupt.

Quote
john86, macleod, john86 and 3 people reacted
MemberMember
39
(@mikez)

Posted : 12/08/2016 1:21 am

What dose ofpilocarpine are you taking? just checked the pharmacy here and the only form they have are eyedrops ...

Quote
john86, john86 and john86 reacted
MemberMember
1753
(@truejustice)

Posted : 12/08/2016 3:31 am

Just got back from seeing Gastroenterologist, given the antibiotics I've been on have had no impact on my energy/fatigue issues he's made the call that my problems aren't gut related. The poo transplant is not going to happen and in a way I'm relieved he said that. He believes I need to go back and see an endocrinologist - light sensitivity and pressure in head he believes is hormone related, absolutely has nothing to do with gut. One good thing though from seeing this specialist was that he's helped me with my acid reflux issues - for that I'm very grateful for his help!!

This Pilocarpine sounds very interesting.......

The experimenting continues I guess....

Quote
MemberMember
39
(@mikez)

Posted : 12/08/2016 5:41 am

Probably a good thing like you said... I've never heard of a 'poo transplant' before, and honestly, if I never hear of it again, it will be too soon.

Quote
john86, john86 and john86 reacted
MemberMember
22
(@quietsoldier)

Posted : 12/08/2016 12:30 pm

8 hours ago, TrueJustice said:

Just got back from seeing Gastroenterologist, given the antibiotics I've been on have had no impact on my energy/fatigue issues he's made the call that my problems aren't gut related. The poo transplant is not going to happen and in a way I'm relieved he said that. He believes I need to go back and see an endocrinologist - light sensitivity and pressure in head he believes is hormone related, absolutely has nothing to do with gut. One good thing though from seeing this specialist was that he's helped me with my acid reflux issues - for that I'm very grateful for his help!!

This Pilocarpine sounds very interesting.......

The experimenting continues I guess....

Have you tried taking biotin?

Quote
MemberMember
20
(@john86)

Posted : 12/08/2016 1:28 pm

15 hours ago, TrueJustice said:

Dont expect time to heal you though - after 20 years it only gets worse!!

You start to question God and why any of this shit should be happening......if you get an answer I'm all ears cause I'm spiritually bankrupt. Edited 13 hours ago by TrueJustice

Ain't that the truth....I've also been at the point these last few months where I no longer can even pretend to believe my body will ever fix itself, or that I'll ever find a successful treatment. I'll continue to do everything that I can, but this is honestly why I'm also going look into things like self-administered euthanasia (as a "plan b" at least). I'm not suicidal or anything, and will try to not consider this for at least a couple years, but I think I'll derive some sense of peace from having such a contingency plan. I don't advocate this at all; in my case I honestly can't stand the thought of a lifetime, or even more than a few years, of these mental and personality effects I've been left with.

On 12/6/2016 at 5:30 PM, ehohel said:

Just got my 23andme results and looking at the data on Promethease makes me sad :(

Out of curiosity, did you find anything unusual or that you think might be relevant? I've also done the same thing, although as far as I can tell, I don't have anything that might immediately jump out as relevant to all this.

Quote
MemberMember
50
(@ehohel)

Posted : 12/08/2016 4:20 pm

2 hours ago, john86 said:
Ain't that the truth....I've also been at the point these last few months where I no longer can even pretend to believe my body will ever fix itself, or that I'll ever find a successful treatment. I'll continue to do everything that I can, but this is honestly why I'm also going look into things like self-administered euthanasia (as a "plan b" at least). I'm not suicidal or anything, and will try to not consider this for at least a couple years, but I think I'll derive some sense of peace from having such a contingency plan. I don't advocate this at all; in my case I honestly can't stand the thought of a lifetime, or even more than a few years, of these mental and personality effects I've been left with. Out of curiosity, did you find anything unusual or that you think might be relevant? I've also done the same thing, although as far as I can tell, I don't have anything that might immediately jump out as relevant to all this.

I don't think accutane can alter your DNA. But I do have higher risks for certain diseases which are possible sides from accutane.
Crohns, Alzheimer's, Type 2 Diabetes, Hair loss.

I don't think I can really connect the DNA data to accutane though, I just did the test out of curiosity.

Quote
MemberMember
20
(@john86)

Posted : 12/08/2016 5:33 pm

I don't think it can alter your DNA either. It was a poorly worded question, but I meant, for example, it would be interesting if everyone with Accutane side effects had some odd mutation or gene variant. There must be something that makes us susceptible when compared to the multitude of people who are fine after taking it. Not that 23andMe's test would likely by useful for this, in any case. I notice I have some methylation issues, according to Protease, but apparently so does like 20% of the population.

Quote
MemberMember
1753
(@truejustice)

Posted : 12/08/2016 6:14 pm

1 hour ago, ehohel said:
I don't think accutane can alter your DNA. But I do have higher risks for certain diseases which are possible sides from accutane.
Crohns, Alzheimer's, Type 2 Diabetes, Hair loss.

I don't think I can really connect the DNA data to accutane though, I just did the test out of curiosity.

Put your hand up if you think Accutane dried you all up!! I mean is there anything else that can dry you out the same way as tane?

So we go and get all these tests done to see what the hell is wrong with us and rarely do we find anything conclusive but who's to know what effect systemic dryness has on our body's, all our organs, even our DNA??
cant be fucking good....

So in many ways we mimic sjogens syndrome as far as I can tell. Baxyl doesn't work, yet to try sea buckthorn as a supplement.

Pilocarpine maybe??.....

Quote
MemberMember
50
(@ehohel)

Posted : 12/08/2016 7:02 pm

42 minutes ago, TrueJustice said:
Put your hand up if you think Accutane dried you all up!! I mean is there anything else that can dry you out the same way as tane?

So we go and get all these tests done to see what the hell is wrong with us and rarely do we find anything conclusive but who's to know what effect systemic dryness has on our body's, all our organs, even our DNA??
cant be fucking good....

So in many ways we mimic sjogens syndrome as far as I can tell. Baxyl doesn't work, yet to try sea buckthorn as a supplement.

Pilocarpine maybe??.....

Accutane is like a nuclear bomb for fighting acne. Trying supplements for accutane sides would be like fighting a forest fire with a spray bottle. I don't think that will get us anywhere, and unfortunately I believe that's what the majority of the pages on this thread are, supplement trials. I'm going to start tinkering with hormones, first up I'm looking to do low risk tinkering, so in the coming weeks I will be stacking MK-677 with Anastrozole. MK-677 will stimulate growth hormone release. And anastrozole may be a way to reverse 5AR inhibition. I'm having high hopes for this one, worst case scenario the low risk stuff doesn't work and I'll just start juicing testosterone, fuck it.

1 hour ago, john86 said:

I don't think it can alter your DNA either. It was a poorly worded question, but I meant, for example, it would be interesting if everyone with Accutane side effects had some odd mutation or gene variant. There must be something that makes us susceptible when compared to the multitude of people who are fine after taking it. Not that 23andMe's test would likely by useful for this, in any case. I notice I have some methylation issues, according to Protease, but apparently so does like 20% of the population.

I understand what you're saying, but I'm sure finding a unique mutation that we all have which is the cause of us being accutane sufferers would be impossible by ourselves, and we would need a giant sample size of participants, which we certainly don't have. 23andme did ask me during my questionnaire if I've ever taken accutane, so perhaps they have note of everyone who has and their computers might find a link in the future. I know that 23andme already made tons of research/links to finding cures to some diseases.

Quote
MemberMember
223
(@gladiatoro)

Posted : 12/08/2016 7:54 pm

50 minutes ago, ehohel said:
Accutane is like a nuclear bomb for fighting acne. Trying supplements for accutane sides would be like fighting a forest fire with a spray bottle. I don't think that will get us anywhere, and unfortunately I believe that's what the majority of the pages on this thread are, supplement trials. I'm going to start tinkering with hormones, first up I'm looking to do low risk tinkering, so in the coming weeks I will be stacking MK-677 with Anastrozole. MK-677 will stimulate growth hormone release. And anastrozole may be a way to reverse 5AR inhibition. I'm having high hopes for this one, worst case scenario the low risk stuff doesn't work and I'll just start juicing testosterone, fuck it. I understand what you're saying, but I'm sure finding a unique mutation that we all have which is the cause of us being accutane sufferers would be impossible by ourselves, and we would need a giant sample size of participants, which we certainly don't have. 23andme did ask me during my questionnaire if I've ever taken accutane, so perhaps they have note of everyone who has and their computers might find a link in the future. I know that 23andme already made tons of research/links to finding cures to some diseases.

It's not a genetic mutation fool we got poisoned.

Quote
MemberMember
50
(@ehohel)

Posted : 12/08/2016 8:10 pm

16 minutes ago, Gladiatoro said:
1 hour ago, ehohel said:
Accutane is like a nuclear bomb for fighting acne. Trying supplements for accutane sides would be like fighting a forest fire with a spray bottle. I don't think that will get us anywhere, and unfortunately I believe that's what the majority of the pages on this thread are, supplement trials. I'm going to start tinkering with hormones, first up I'm looking to do low risk tinkering, so in the coming weeks I will be stacking MK-677 with Anastrozole. MK-677 will stimulate growth hormone release. And anastrozole may be a way to reverse 5AR inhibition. I'm having high hopes for this one, worst case scenario the low risk stuff doesn't work and I'll just start juicing testosterone, fuck it. I understand what you're saying, but I'm sure finding a unique mutation that we all have which is the cause of us being accutane sufferers would be impossible by ourselves, and we would need a giant sample size of participants, which we certainly don't have. 23andme did ask me during my questionnaire if I've ever taken accutane, so perhaps they have note of everyone who has and their computers might find a link in the future. I know that 23andme already made tons of research/links to finding cures to some diseases.

It's not a genetic mutation fool we got poisoned.

Then why are like 90%> of accutane users just fine, if you know so much about this, then please enlighten me with the cure. Muchas gracias

Quote