We might just have to put it all down to "Chemo side effects"

Which begs the question, what does someone with bad chemo side effects do?? Do they just wait it out? Do they have programs to help people suffering??

55 minutes ago, TrueJustice said:

We might just have to put it all down to "Chemo side effects"

Which begs the question, what does someone with bad chemo side effects do?? Do they just wait it out? Do they have programs to help people suffering??

I don't think chemo could cause all this...

I could see brain fog, and maybe some hair loss...

But we have waaaaayyyy too much going on

Well waiting it out doesn't work anyway......I'm 20 years post tane so how long do you give it??

Who would know.....

Anyone with poor sleep - suggest giving either progesterone cream a go, or foods to increase progesterone production, e.g. sunflower seeds;

My sleep has been terrible since the start of the year, and guessing this has been something GABA related, but I've found progesterone cream definitely helps things - also helps that 'heartbeat in your head' that is noticeable when lying on your pillow;

Quote

High anxiety and low mood:Progesterone has both antidepressant and anxiolytic (anti-anxiety) actions, courtesy of its metabolites 5- and 5-allopregnanolone. These help to increase levels of GABA (gamma-aminobutyric acid), aneurotransmitter which has calming affects on the brain.

Insomnia:Low progesterone levels have been linked to poor sleep, especially problems in falling asleep.

Weight gain and cellulite:If youre low on progesterone, your body wont burn fat stores for energy. In addition, you lose progesterones anti-catabolic benefits, which help to protect your muscle tissue, particularly when youve had a rough week.

Your body will not burn fat. Instead, you will pull glucose into your bloodstream, which often means your body starts breaking down your muscle tissue to provide this quick source of energy. This can in turn lead to the production of cellulite.

Fluid retention:Progesterone is a natural diuretic it prevents your cells from taking up excess sodium and water, so it can help reduce fluid retention. When it drops too low women complain that they retain fluid during the day (particularly in the legs, ankles and tummy), find their rings feel too tight for their fingers, look puffy in the face and often have swollen, heavy (and often sore) breasts.

Brain fog: Brain functions benefits from progesterone. It is also is involved in the production of the myelin sheath, which protects your nerve cells. It is so important to brain health that research from Emory University indicatesbenefits from giving progesteroneto help people recover from traumatic brain injury and stroke.

https://www.hormonesbalance.com/articles/10-natural-ways-to-boost-progesterone-balance-hormones/

Interestingly cycling seeds is a suggestion for balancing hormones naturally. I've also got benefits from pumpkins seeds, but which makes sense as they reduce E2 (estradiol) which is likely high (yet increase healthy estrogen), and progesterone is likely low. Also worth pointing out blood tests for progesterone are supposed to be almost worthless, so difficult to measure levels accurately;

https://www.annmariegianni.com/the-seed-rotation-diet/

Also a number of people on PFS and PSSD forums seem to be having some signs of success with a drug called RU486 which is a a progesterone agonist (actually an abortion drug). Theory is something along the lines of it reducing progesterone temporarily so that DHT rises and counters estrogen, rather than progesterone doing that, and resulting in DHT being useless. Worth keeping an eye on;

[Edited link out]

On a side note,ran out of MSM recently and noticed stiffer joints - definitely recommend this at 1000mg daily for anyone with stiff joints, does seem effective.

It was incredible finding this forum two days ago. I thought that I was the only unlucky one during all those years. I have 24 years and 10 years of post accutane, I just can not stand it anymore. The fact that no one, not even the doctors, believe in my symptoms is sometimes more difficult than feeling them

My biggest challenge has been dry mouth, it's only half a day and I've already taken two liters of water, I'm always thirsty and that's terrible. Someone else?

My excess thirst is psychological to the doctors, although they recognize that my mouth is dry. I have recently started to feel joint pains and back pains, I hope this does not get worse, I go to the gym daily and play tennis, exercises are my only treatment against anxiety

My exams are all normal and I wonder if I could have healthy children in the future or if the accutane destroyed that possibility too

What am I missing here? quickly looking at progesterone its more involved in female hormones.
I dont see alot of credible information looking at the significance in males.
Ive also seen it can be capable of lowering testosterone.

Effects

High progesterone levels in men cause an increase in estrogen production, which can lead to a number of problems. According to MayoClinic.com, excessive estrogen is linked to heart conditions, depression and fatigue. Higher estrogen levels can lead to an enlarged prostate. Other side effects of an increase in estrogen caused by high progesterone levels include prostate inflammation, urination difficulties and erectile dysfunction.

42 minutes ago, guitarman01 said:

What am I missing here? quickly looking at progesterone its more involved in female hormones.
I dont see alot of credible information looking at the significance in males.
Ive also seen it can be capable of lowering testosterone.

Effects

High progesterone levels in men cause an increase in estrogen production, which can lead to a number of problems. According to MayoClinic.com, excessive estrogen is linked to heart conditions, depression and fatigue. Higher estrogen levels can lead to an enlarged prostate. Other side effects of an increase in estrogen caused by high progesterone levels include prostate inflammation, urination difficulties and erectile dysfunction.

Progesterone is one of the neurosteriods that was found to be lowered in the tests carried out in that Italian PFS study. It's a female hormone, but it's still required in males, and is a pre-cursor to testosterone. Obviously you don't want 'high' progesterone, you want normal, so those effects above are when you have too much

Quote

Progesterone is the precursor to many hormones, including testosterone, the sex hormone that emphasizes male characteristics, and estrogen, the sex hormone that emphasizes female characteristics. Progesterone plays an important role in regulating blood sugar, building bone mass, regulating brain activity, developing intelligence and body functions. It also contributes to the process that converts fat into energy, regulates thyroid hormone production and can help reboot libido. Aside from this, progesterone is a natural antidepressant, an aid to normalizing blood clotting, a contributor to initiating sleep and a natural diuretic along with many other vital functions.

Low Progesterone Levels

As men age, testosterone levels decline and estrogen levels start to rise. Progesterone levels in men drop sharply as estrogen levels climb, causing symptoms such as low libido, hair loss, weight gain, fatigue, depression, gynecomastia -- enlarged breasts -- erectile dysfunction, impotence, bone loss and muscle loss. Aside from this, men who have low levels of progesterone have a greater risk of developing serious illnesses such as osteoporosis, arthritis, prostatitis and prostate cancer.

http://www.livestrong.com/article/477607-the-effects-of-progesterone-estrogen-in-men/

Did you test low in progesterone? I wouldn't touch it other wise... According to noted hormone doc John Chrysler, it raises SHBG, gyno, impotence etc - all feminizing qualities.

30 minutes ago, mikez said:

Did you test low in progesterone? I wouldn't touch it other wise... According to noted hormone doc John Chrysler, it raises SHBG, gyno, impotence etc - all feminizing qualities.

Im with you on this one, I wouldn't touch it unless tested.

Its not like just trialling say a Vit B supplement for example and seeing if it works or not, taking progesterone could come with its own list of complications, ones I'm totally not prepared to deal with.

Happy to be corrected....
As a male I'd be more inclined to take a testosterone boosting supplement.

After decades of trying to figure out these long term side effects I have come to realize we are dealing with chemotherapy aftermath , just like a cancer patient.

I know those are harsh words but it's sadly reality.

3 hours ago, tanedout said:

Progesterone is one of the neurosteriods that was found to be lowered in the tests carried out in that Italian PFS study.

In all, 16 men with PFS and 25 control patients were evaluated in the study conducted at the University of Milanos Department of Pharmacological and Biomolecular Sciences by a team of 12 researchers led by Roberto Cosimo Melcangi, Ph.D. The PFS patients had discontinued finasteride for a median of 5.4 years at the time of evaluation, and had no prior history of erectile dysfunction or depression prior to finasteride use.

Key findings of the study include broad effects on plasma and cerebrospinal fluid (CSF) neuroactive steroid levels observed in 14 PFS patients, as compared to 25 controls. Statistically significant decreased levels of DHT, pregnenolone, progesterone, 17-beta estradiol and dihydroprogesterone (DHP), and increased levels of DHEA, testosterone and 3-alpha diol were observed in the CSF of PFS patients.

In plasma, statistically significant decreased levels of DHP and allopregnanolone, and increased levels of pregnenolone, DHEA and testosterone were observed.

looking at the actual study, it looks like progesterone was normal in plasma but low in CSF. I wonder what Post Fin people think about this study.
Looking at testosterone blood levels, thats been pretty variable it seems post accutane. Some have high testosterone, some low.
So maybe there are some things that dont fall in line with this study?
Im sure hormones are being affected, but is this a primary cause or secondary reaction?
What we can test in plasma, does it fall in line with this study?
Mine doesnt. But then again I dont have complete loss of sexual function.

There are also some people that have tested high in estrogen post tane.

I would like to add most derms are in denial of these latended side effects. It's their miracle go to drug it does as advertised but my question IS at what cost to the human body.

On 9/27/2017 at 7:33 AM, guitarman01 said:

In plasma, statistically significant decreased levels of DHP and allopregnanolone, and increased levels of pregnenolone, DHEA and testosterone were observed.

So we cant test the first two. The last two are false looking at test results from those with severe ED post accutane.
That just leaves pregnenolone. is this elevated post accutane? is this in common post fin?

[Edited link out]
More people are coming back with low T then anything. (On a side note I just saw some comment Dubya felt horrible on TRT. He didnt need it meaning he had normal T, tried it anyway, and felt bad for months.)

In my case, side effects didn't arise until about 3 weeks after cessation of the drug. With that in mind, it really narrows down possible mechanisms of action. Genetic transcription or immune system regulation. There is a drug on the market for dogs called Apoquel, to relieve itchy dermatitis eczema type skin/fur. Coincidentally, owners report serious side effects after discontinuation of the drug. The drug acts by turning off certain enzymes called kinases (JAK), and it really works, for a short period.

In regards to Accutane, we're dealing with a very complicated drug, and as these drugs keep getting more and more powerful, we will see more of these types of side effects in the future.

Take the new age antibiotics flouroquilones for example: Here you have toxicity of an antibiotic affecting everything from tendons to the brain. (The mechanisms of the toxicity of fluoroquinolones have been attributed to their interactions with different receptor complexes, such as blockade of the GABAa receptor complex within the central nervous system, leading to excitotoxic type effects and oxidative stress.)

It's funny most think Accutane just "drys your skin" or some "purge" effect of sebum, but no it's quite more complicated than that. It's definitely androgen based, immune system based, and when you alter things on a cellular level, of course they have the capacity to change functions throughout the body (even the brain), and you can't quantify it.

I hate to break it to you, but there are some doctors that know about all of this.

Rather than spending money on supplements, or more money on doctors that want to treat symptoms on the surface, if you really want to reverse what occurred, someone needs to purchase resources such as this book, read it, and explain to everyone what is going on. (It is a 2017 copy and chapters 1-6 cover Isotretinoin):
http://www.eurekaselect.com/153701/chapter/adverse-drug-reaction

Yeah it was great of Roche back in 1982 to market a product that they didn'tknow much about, and to this day they still can't explain the exact mechanism of how Roaccutane works.

Its not bad enough we've gotta suffer the side effects, on top of all that it's the cost of trying to get your health back, I mean what's the point in having lawyers etc when you can't get justice in life??
I really want to know - what's the point??

You can't sue for just being fucked up from tane and having depression, fatigue, dry skin etc.

Theres a little spot reserved in hell for anyone working to promote Roaccutane that's for sure!!

3 hours ago, TrueJustice said:

Yeah it was great of Roche back in 1982 to market a product that they didn'tknow much about, and to this day they still can't explain the exact mechanism of how Roaccutane works.

Its not bad enough we've gotta suffer the side effects, on top of all that it's the cost of trying to get your health back, I mean what's the point in having lawyers etc when you can't get justice in life??
I really want to know - what's the point??

You can't sue for just being fucked up from tane and having depression, fatigue, dry skin etc.

Theres a little spot reserved in hell for anyone working to promote Roaccutane that's for sure!!

It's the reality we live in, unfortunately the U.S. and E.U. are a Capitalists society. What hurts the most is the silence from them. The lack of support makes it become malicious.

After 2 weeks on fin I can tell you something in my body is def. going on. I got no big mental or sexual changes but I get big pimples on my back which I never had before, not even post accutane. I get hot flashes too just like I had them on accutane. Dont know if its good or not I will keep you updated. Forgot the weirdest effect: I think I'm losing hair on my head hahahanow who can explain this shitto me?

55 minutes ago, idontknow1993 said:

After 2 weeks on fin I can tell you something in my body is def. going on. I got no big mental or sexual changes but I get big pimples on my back which I never had before, not even post accutane. I get hot flashes too just like I had them on accutane. Dont know if its good or not I will keep you updated. Forgot the weirdest effect: I think I'm losing hair on my head hahahanow who can explain this shitto me?

Are you following the Dr Pezzi method? Small amounts for a few months? Was it you actually spoke to him?

1 hour ago, tanedout said:

Are you following the Dr Pezzi method? Small amounts for a few months? it you actually spoke to him?

Yes actually to do his method 100% you need more time because of 2 years prep phase and some stuff like that. I only take the fin without the green tea and dht because I don't really care about my penis size I just want to get my normal life back again.

Whale.to

I would recommend to stay away from allopathic inc trust me they will figure out new ways to poison us.

Hi Indy,

Have you tried probiotics yet? They are a miracle for so many problems, in my opinion and from my experience. You just need to take about 100 billion a day to see a difference. I had severe rosacea and tendonitis for 3 years. Both gone after about 6 months of use, although I did start to see results after 1 month. (I also used ZZ cream for the rosacea.) The brand of probioticsI use costs about 28 for 60 capsules of 50 billion each on amazon. It sounds like you have tried just about everything else, like I did. It is such a joyful experience when you finally find a solution:).

On 26/09/2017 at 4:31 AM, guitarman01 said:

Meaning how do you gage illness or getting better when there is no medical signs of illness?
Also taking the mental aspect out of it.
ive had a few abnormal labs that im looking into, but other then that most people find nothing.

I believe that a Fibroscan test will prove otherwise, especially to people having this condition for more than 5 years.

No more fake news.com

5 hours ago, mariovitali said:

I believe that a Fibroscan test will prove otherwise, especially to people having this condition for more than 5 years.

It wouldnt be smart to rule anything out until it can be ruled out. I have a appointment tomorrow, I'll ask about the mre liver scan I mentioned. Its suppose to be more accurate and done in a actual hospital setting would hold more merit.
The traveling fibroscan service that you mentioned over there sounds similar to the life line screening here, and its a little controversial. Testing also depends on the skill of the operator.
Looking at this though, liver health has been thought of since day one by virtually everyone with all these post drug diseases and CFS. They have done and looked at everything to try to treat liver health.
The difference here would be some actual proof.
but maybe the liver is being affected just like everything else is being affected and eventually time might catch up.
Arent some of the Propecia guys on top of this liver scan idea? anyone had it? minus older individuals with cfs.

This is severe liver disease, but it definitely affects the brain. I would love to rule this out with this scan^ if possible, trust me.
People have contemplated this for years.

The neurology of liver failure

https://academic.oup.com/qjmed/article/96/9/623/1522594/The-neurology-of-liver-failure

That there is a relationship between the brain and the liver has been known for many years,¹and patients with chronic liver disease frequently experience neurological problems. The commonest and most widely recognized is the reversible syndrome of hepatic encephalopathy

Overt hepatic encephalopathy is generally taken to refer to a syndrome of neuropsychiatric, neuropsychological and neurological disturbances that may arise as a complication of liver disease