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I agree with guitarman about prednisone and the dosage he recommends, I feel the same after having read anecdotal experiences with prednisone . People that suffers from eczema use it a lot, but it only seems to be a temporary solution and the issue returns when they stop. It doesn't mean this would necessarily be the same for us, if it can offers some long term slight improvement I would take it directly . I'm willing to try other things before jumping on it and if I ever do, it would be one week of 10mg or something like this, to begin with.
Ehohel was taking prednisone and was feeling extremely better ( 100% if my memory serves me well) but I don't know if it returns to its initial state when he stopped ( if he did? )
Sprinterguy, Nystatin is on my " things to try list" from the day I've read a similar PFS recovery story a few months ago. To add a little weigh to this theory, two guys recovered using metronidazole, an antibiotic . Here's the link to: [Edited link out]
Truejustice, regarding to your head pressure, and overall accutane side effects, have you ever tried Rick Simpson oil?
This definitely WASN'T the cure I hoped it would be but again, this is one of the very few things I felt improvement after ingesting it . chronic fatigue gone, digestive issue hugely improved, and this " ringing " or " buzz-like " sounds located around my ears I would say I was gettingmany times throughout the day , gone . I dont know if it is the same thing you describe as " head pressure " but it sounds so . It did nothing for hair loss, dry skin, libdo, ED, anhedonia yeah, but I improved while on it and it remains after I stopped .
As for me, if it interested some, I'm currently taking NSI-189 for three days now. I received it on Monday
Obviously too early to say anything, but I noticed a drastic increase in appetite . too drastic it can not be the placebo effect. This is an effect other users have reported too. And it feels good to be able to eat like I was pre-accutane . Update oncoming
Im also cycling Lions Mane, Ashwagandha, ginseng, eleutheroccoqus, L-glutamine, taking lot of coconut oil and eating sugar/dietary/gluten-free diet, with meat, fish, lot of vegetables, nuts and some berries . Nothing listed on the above would be the cure, I use it to help me get things done throughout the day, and because I know, to some extent, it is making my body more prone to positive changes .
9 hours ago, TrueJustice said:I'm just so pissed off at the moment, why didn't my gastroenterologist offer any of this info?? Like I say, just because nothing really sinister is found doesn't mean ones gut is in good health!!
I recently went on 10 days of "intestaclear" followed by Mutaflor - did nothing!! If the more natural path of zapping candida etc was going to work, this surely would have done it....
Surely the ultimate gut restorer would be a "Poo transplant"!!??
I think if that didn't work you'd either conclude permanent damage is at play or our problems just aren't gut related!!?
That's interesting, I didn't know anyone else had tried Mutaflor. I tried that in response to my gastrointestinal tests showing no growth of beneficial e-coli, but got no benefit.
I've tried all sorts on the gut healthy approach before over the years. Specific probiotics like Mutaflor, Prescript Assist, VSL3, etc etc - milk, water and coconut kefir for months, sauerkraut, kombucha, along with pre-biotics like green banana flower and l-glutamine. Wheat free, dairy free, gluten free etc etc. Also done extensive periods taking various things like 'now candida cleanse', blackwalnut hulls, etc.
The only benefit I really noticed was milk kefir definitely helped with mental clarify, maybe down to folate and b-vitamins. I've continued with eating sauerkraut, but I don't think any sort of gut protocol is going to resolve this issue - same with PFS guys, clearly gut health is affected, but it's not the root cause. It's been covered many times on this thread.
I think it's still important to eat healthy, take probiotics etc, as part of a wider protocol though.
On 7/20/2017 at 6:42 PM, Sprinterguy98 said:ATTENTION:
Now I know what I am about to say has probably been discussed on this forum many times, but I recently just started putting some things together, and I believe I have a valid hypothesis, at least in my case. So bare with me.Now, in my personal experience with the "post-tane" side effects, I have realized that when they are at their worst, my tongue is extremely yellow, aka the presence of Candida. But when I go through brief remissions, my tongue is basically spotless, in fact totally clean. This has only lead to me to assume that the problem we are all facing lies in the liver, as the gut is where Candida thrive.
So is Candida the problem? Well, probably not, but it is a good indicator, at least in my case, that the liver isn't functioning right when in the presence of Candida. I then began to do some research, which is where i came across this PFS recoverer:
http://www.remedyspot.com/content/topic/2708049-re-nystatin-full-sexual-recovery-from-pfs/
Essentially, he took the "bad liver and gut" approach by using anti fungal medications, specifically Nystatin and Dilfucan. Overtime, his symptoms got better (NOTE; he did take extremely high amounts, but you get the point with anti-fungals). And i know this is only one case, but it adds some validity to my hypothesis.
To elaborate even more, the gut has more neurons than the spinal cord, believe it or not. So, if the gut is flooded by Candida overgrowth, it will not function properly, thus leading to a host a neurological issues (hopefully the accutane side effects, because it is clear that accutane has some neurological effect of some sort).
So do you get what I'm saying here? Candida overgrowth = weak gut = impacted nuerons = host of problems.
So essentially, if any of you experience Candida with your side effects, why not try some prescription anti-fungals to cleanse the gut? Candida is very "natural treatment" resistant, so that is why liver flushes and nutrition don't seem to be helping people, in my opinion. They need prescription meds to be totally wiped out. Another interesting piece of information:
"It's estimated thatthereare between 400 and 600 millionneuronsin yourgut that's up to three times as manyneuronsthan in the brain of a rat. You're not conscious of yourgutthinking, but the system produces about 95% of the serotonin and 50% of the dopamine found in your body."Feb 13, 2015
https://theconnection.tv/second-brain-gut/So see? An under functioning gut can have a profound impact on brain functioning. And eliminating Candida in our systems just might be the answer. I am very optimistic about this theory, as I will test it myself.
What does everyone think?
Has anyone tried supplementing with betain HCL? It is recommended for candida, and it aids in digestion. I figured I had low stomach acid (HCL) because my stools were usually soft, and I have chronic acid reflux disease. Food just isnt digesting well. That might explain a lot of other issues relating to poor vitamin intake. I do feel better when I supplement with Betaine HCL, but am worried that my stomach lining will be stressed by it (skin tissue altered by accutane). For now its great. Might be the added nutrition gained...and if it will kill some candida, I 'll be stoked! Anyhow, for anyone interested I am still taking LDN (six months staying at 1.5 mg per day), and I feel like 600% better overall.Many of my physical problems have disappeared like my fibromyalgia muscle pain, chronic sore throats, seasonal allergies virtually disappeared, increased energy and libido,far less anxiety and depression. Not a cure all but really the most helpful treatment I have tried. Still have some lack of motivation, but overall things are pretty good.
I think just because we haven't been able to reverse things, doesn't necessarily mean the problem didnt originate from the gut.
Looking at Fecal transplants for example, look at what they screen their donors for.
http://www.gidoctor.net/fecal-microbiota-transplantation-fmt.php
Donors are not allowed to have gastrointestinal diseases, autoimmune diseases, or the metabolic syndrome that might allow the patient to acquire a disorder caused by an interaction of the bacteria and the patients cells.
Risks of developing autoimmune diseases may be reduced when your donor is a relative.
Hey guys,
Quick update onmy vocal problem journey.
I've been diagnosed with a "bamboo nodule"... the only cause of these are autoimmune diseases. Haven't been put on prednisone just yet but I'm going back to my voice institute tomorrow for further information. Will keep y'all updated! Keep fighting!
Has anyone here been on immunosuppressive drugs longterm ?
http://propeciahelp.com/forum/viewtopic.php?f=1&t=3310
Guys please read this and give me your opinion!
16 hours ago, idontknow1993 said:Has anyone here been on immunosuppressive drugs longterm ?
http://propeciahelp.com/forum/viewtopic.php?f=1&t=3310
Guys please read this and give me your opinion!
That I'm aware of only a couple have tried the immunosuppressive drugs short term, but sounds like it results in 100% reduction in symptoms (at least as regards to usingPrednisone).
Regards Propeciabelp, there are other drugs which are also 5-alpha reductase inhibitors like Accutane, including Propecia, Finasteride etc, as well as the herbs Saw Palmetto and Fenugreek. All have broadly the same potential sides with loss of libido, ED, brain fog, dry skin etc. Propeciabelp is a pretty negative forum - you're better off looking at solvepfs, swole source, raypeat or the allthingsmale finasteride/accutane section (although it's pretty dead now). Unfortunately none have the answers.
Tanedout, plenty on the forums you mentioned have recovered and shared their story.
I don't think it is accurate to say " none have the answers " but since we are all affected differently, there is not an universal answer . You have to find yours, weither it is based on other's recovery, your own experiment, some individual tests.. it doesn't matter providing it works for you
I just had an appointment with my neurologist. Since nothing was found in my CT Scan or lumbar puncture, then the doctor prescribed me prednisone (corticosteroid)60 mg daily for 3 days and amitriptyline (antidepressant)10 mg daily for 3 months. He thinks I'm just having migraines.
I told the doctor that this is one of many issues, but I'm seeing w rheumatologist for my muscle/joint pain and weakness and a gastrointerologist for my digestive issues.
i just feel so drained through this whole process because all the doctors just prescribe you a pill without holistically trying to discover what the underlying cause is or if the disease is autoimmune in nature triggered by Accutane.
What im trying to get at is that this whole thing started with Accutane. I went to my dermatologist with acne and instead of my doctor trying to help me or see what the underlying cause was? ( maybe just fucking stress!) she just gave me a pill that's fucked me up for life. The same thing that all these other doctors are doing.
Have any of you guys tried the medication above with any long term benefits ? Just trying to be cautious since I don't just want temporary relief but long term benefits without the long term side effects.
Im sure I'm getting to the point where I'm sure a lot of you are too with this:There is no cure. The doctors can't seem to find anything, so they can't help me. Modern science has only gone so far and all of our symptoms causes are "unknown " yet somehow triggered by accutane whose affects are also not well understood.
I figured thethe sooner I accept this as a chronic condition, the better I can get to just moving on with my life and managing it. The only thingthat has helped so far is the cannabis. At least it's not toxic like all these medications the doctors keep throwingat meand at least it makes life somewhat tolerable. I figured I'll just do this for the rest of my life.
31 minutes ago, Vice-accutane said:Tanedout, plenty on the forums you mentioned have recovered and shared their story.
I don't think it is accurate to say " none have the answers " but since we are all affected differently, there is not an universal answer . You have to find yours, weither it is based on other's recovery, your own experiment, some individual tests.. it doesn't matter providing it works for you
I totally agree! Everyone is affected in a slightly different way, and what I'm getting at is there isn't a 'one size fits' all 'cure' as often seems to be alluded to on this thread. It's likely going to involve a combination of things based on the individual.
There are a few recoveries on this thread using RSO (Rick Simpson oil), one full recovery, another pretty much full recovery and the 3rd recovered his sexual sides but still has brain fog. Numerous others have tried this, including myself, with no success however.
There's also various recoveries on PFS forums with the CDnuts method (cycling testosterone boosting herbs, prohormone cycles all proceeded with some fasting), some have recovered with tribulus alone, some with progesterone cream, some natural recoveries and some via strict diet.
I'm not trying to come across pessimistic, but with this being one long thread it tends to go around in circles as obviously new members are unlikely to read all the old posts in full.
Although its not possible to search this thread on acne.org, you can just use google to search it, e.g.;
Enter the search phrase in google to search the thread for PFS being mentioned;
"Repairing the long-term damage from Accutane" PFS
1 hour ago, Jorcruz24 said:I just had an appointment with my neurologist. Since nothing was found in my CT Scan or lumbar puncture, then the doctor prescribed me prednisone (corticosteroid)60 mg daily for 3 days and amitriptyline (antidepressant)10 mg daily for 3 months. He thinks I'm just having migraines.
I told the doctor that this is one of many issues, but I'm seeing w rheumatologist for my muscle/joint pain and weakness and a gastrointerologist for my digestive issues.
i just feel so drained through this whole process because all the doctors just prescribe you a pill without holistically trying to discover what the underlying cause is or if the disease is autoimmune in nature triggered by Accutane.
What im trying to get at is that this whole thing started with Accutane. I went to my dermatologist with acne and instead of my doctor trying to help me or see what the underlying cause was? ( maybe just fucking stress!) she just gave me a pill that's fucked me up for life. The same thing that all these other doctors are doing.
Have any of you guys tried the medication above with any long term benefits ? Just trying to be cautious since I don't just want temporary relief but long term benefits without the long term side effects.
Im sure I'm getting to the point where I'm sure a lot of you are too with this:There is no cure. The doctors can't seem to find anything, so they can't help me. Modern science has only gone so far and all of our symptoms causes are "unknown " yet somehow triggered by accutane whose affects are also not well understood.
I figured thethe sooner I accept this as a chronic condition, the better I can get to just moving on with my life and managing it. The only thingthat has helped so far is the cannabis. At least it's not toxic like all these medications the doctors keep throwingat meand at least it makes life somewhat tolerable. I figured I'll just do this for the rest of my life.
That's exactly how I see it now. If this is a chronic illness then people need to start treating it like one...
aka managing the symptoms however possible. Millions of people have these conditions and treat them every day. If that's what needs to happen then so be it!
Does anyone still recommend supplementing taurine?
There used to be a theory that post-accutane the body has problems storing it or producing (don't remember well) and thus some people supplemented it. I'm in the middle of ordering a stack for myself after long time so wanted to ask just in case.
Or If anyone has something to suggest that he considers a must for improving his condition, I'll be vary thankful : )
2 hours ago, AccuNate said:Does anyone still recommend supplementing taurine?
There used to be a theory that post-accutane the body has problems storing it or producing (don't remember well) and thus some people supplemented it. I'm in the middle of ordering a stack for myself after long time so wanted to ask just in case.Or If anyone has something to suggest that he considers a must for improving his condition, I'll be vary thankful : )
As mentioned by several people over last few pages, supplements are ok helping you along the way but beyond that they won't cure you!!
Like most of us now, you need to look at prescription drugs depending on your condition- this is my advice after 20 years. Continue to get tests as there are still things to find out with us post Accutane, that has been proven by several people on this forum!
A cure will not come through supplementing - I'll stand by that as a fact.
Delve into autoimmune issues if nothing else.
16 hours ago, tanedout said:That I'm aware of only a couple have tried the immunosuppressive drugs short term, but sounds like it results in 100% reduction in symptoms (at least as regards to usingPrednisone).Regards Propeciabelp, there are other drugs which are also 5-alpha reductase inhibitors like Accutane, including Propecia, Finasteride etc, as well as the herbs Saw Palmetto and Fenugreek. All have broadly the same potential sides with loss of libido, ED, brain fog, dry skin etc. Propeciabelp is a pretty negative forum - you're better off looking at solvepfs, swole source, raypeat or the allthingsmale finasteride/accutane section (although it's pretty dead now). Unfortunately none have the answers.
Ok thats very interesting.
Have you read all 3 pages ? Dr kevin pezzi treats people damaged from accutane with finasterid to resentizizse them and said in his book it is working.
That is unbelieveble do you have heard about something like that?
7 hours ago, idontknow1993 said:Ok thats very interesting.
Have you read all 3 pages ? Dr kevin pezzi treats people damaged from accutane with finasterid to resentizizse them and said in his book it is working.
That is unbelieveble do you have heard about something like that?
The Dr Pezzi 'cure' using Finasteride was discussed again recently, and one of the members of this forum got in touch with the guy. He actually said he would read some of this thread and respond. Sounds like although he did recover his sexual sides using Fnasteride, he went on to get additional sides that he believes were from that.
Actually who was it who get a response from Dr Pezzi? Assuming you never heard back from him?
Edit: Here we are, it was Feb this year, page 461
http://www.acne.org/messageboard/topic/295030-repairing-the-long-term-damage-from-accutane/?page=461
QuoteYes, I did, and the effects were amazing for a while, but in retrospect, considering the years of negative effects secondary to finasteride (Propecia), I wouldn't do it again because there are other ways to restore sensation (they do nothing for size, but there are other ways to address that).
Kevin
@Walden Rev- Did you ever hear anything more back from Dr Pezzi?
2 hours ago, tanedout said:The Dr Pezzi 'cure' using Finasteride was discussed again recently, and one of the members of this forum got in touch with the guy. He actually said he would read some of this thread and respond. Sounds like although he did recover his sexual sides using Fnasteride, he went on to get additional sides that he believes were from that.Actually who was it who get a response from Dr Pezzi? Assuming you never heard back from him?
Edit: Here we are, it was Feb this year, page 461
http://www.acne.org/messageboard/topic/295030-repairing-the-long-term-damage-from-accutane/?page=461
@Walden Rev- Did you ever hear anything more back from Dr Pezzi?
Wow I'm pretty shoked right now . I've just send him an e-mail. Do anyone tried this without succes ? I have hope for the first time since 5 years.
Can we please not be vague!!
The Dr Pezzi scenario I'm assuming is all about fixing sexual side effects after Accutane correct??
This has nothing to do with fixing headaches or fatigue or light sensitivity or the myriad of other side effects from tane - can we be clear on that so no one gets confused pls!!
17 hours ago, MoreTwine said:Conducting Accutane Survey
Of course Roche knows. They also know their drug Tamiflu, which was designed for H1N1, is not much better than placebo, brings with it a whole host of side effects, and yet will continue to sell it to millions of people for symptoms relating to the common flu and the government will let them. No one can, will, or wants to do anything.
I have been on forums like these for almost a decade. I have talked directly to hundreds and have read thousands of Accutane side effect profiles from people all over the world (pakistan, australia, canada).
Their meager estimated <1% side effect profile is more like 3-6% ... 30million have taken this drug and I'd say a million or more have some form of debilitating negative side effect.
Almost all of their drugs, actually. They are a pretty malicious company.
For most of you, when did the side effects generally stop? Especially those of you living 10+20+ years post accutane. I'm on month 7 and up until month 5 all I had was the head pressure, now in the past couple of months I got extreme tiredness and joint pain, digestive issues and Sebhoric dermatitis on my scalp and moustache. Within the past week, I've had severe episodes of depression so I don't know if that's a new symptom or maybe just the stress from having to deal with this or maybe because I just got started taking RSO and this might be a side effect of that.
I feel like once new side effects stop I can focus on managing the existing ones.
7 hours ago, Jorcruz24 said:For most of you, when did the side effects generally stop? Especially those of you living 10+20+ years post accutane. I'm on month 7 and up until month 5 all I had was the head pressure, now in the past couple of months I got extreme tiredness and joint pain, digestive issues and Sebhoric dermatitis on my scalp and moustache. Within the past week, I've had severe episodes of depression so I don't know if that's a new symptom or maybe just the stress from having to deal with this or maybe because I just got started taking RSO and this might be a side effect of that.
I feel like once new side effects stop I can focus on managing the existing ones.
Try MSM for joint pain. I've found ashwaganda helps a bit stress too, and it's supposed to help balance hormones.
My sides effects have changed over time, 7 years post tane, but obviously have never gone away - the last 6 months have had terrible sleep and digestive issues for example, whereas previously I didn't get these issues. Main things like ED, loss of libido, complete loss of night vision, brain fog haven't changed substantially. I did used to get head pressure like a lot of people talk about however, and that went, but I don't know in response to what.
Good luck with the RSO! Check out accutaneispoison and taneabomination's recovery stories on this thread if you haven't already. Took both of them some time to feel the full benefits. I think AIP first noticed his night vision was coming back.
14 hours ago, macleod said:Of course Roche knows.
Yeah they'll know exactly what the score is with the side effects from their poison, but it's all about the money for them. Just deny responsibility, cover-up, rinse and repeat. No concern for helping those whose lives they've ruined.
14 hours ago, TrueJustice said:Can we please not be vague!!
The Dr Pezzi scenario I'm assuming is all about fixing sexual side effects after Accutane correct??
This has nothing to do with fixing headaches or fatigue or light sensitivity or the myriad of other side effects from tane - can we be clear on that so no one gets confused pls!!
But these physical and mental side effects can also caused by hormonal dysfunction. I'm sure if you fix the sexual sides all the others will disappear with time.