In Search of a cure for Post Accutane Syndrome

Member Stories
#34

Today our contact at the university told us that it’s not possible to do the special values of the melcangi study in serum, so I was very frustrated. I contacted my doc and will do another regular blood test and also want to know his assessment of the risk about mife/prog.

I’m back at studying about 3 hours per day and also I research at least one hour for a cure.
Studying is an ongoing struggle, thinking that it’s too difficult with this condition, but for now I keep going.
I had difficulty falling asleep at night and also feeling bad with headpressure at that time, but I started doing the Wimhof Method at 10 pm and it helps with that, furthermore I try to get sunlight outside in the morning to set my circadian rhythm. I’m getting up about 2 hours earlier now.

I hope I will start a treatment after the blood test. The anhedonia and emotional bluntedness annoys me so much. Many times I have to bring myself to do sth. I also deal with some sedation bc of the antipsychotic I’m taking, which kicks in several times a day. But compared to the pas it’s nothing. I want things on my mind again.

2 Likes
#35

I think it’s very important now to discuss the possible risks and benefits of mife/prog with the doctors and scientists. Do we really have scientifically supported evidence it could help us? I wonder how PAS is different from PFS. There’re numerous reports here about muscle wastage and development of at least mild gyno among PFS-sufferers. That’s not the case with me and if I understand correctly neither with you or other PAS-guys. So we might need some different treatment.
I’ve found a curious article “Retinoic Acid and Depressive Disorders: Evidence and Possible
Neurobiological Mechanisms” that could be pertinent to our case. It’s a bit complicated and long for me to grasp, but I’m trying to understand what I can. If you’re interested, I can send it to you.

I understand your struggles, I know how hard it can be. I have to make some pauses from time to time as it feels like I get insufficient memory and go to sleep mode (like a discharged phone). Just keep going. We have to rely on ourselves.

When I can, I also try to view sunset. It’s said to imrove the light sensitivity in the evening. I’m still amazed how this simple trick with viewing sunlight actually improved my sleep quality and probably stopped the mood swings. Unfortunately it didn’t do shit to my sexual side of PAS.

I’m looking forward to your updates and wish you sooner improvement.
Take care

#36

I am a PFS guy. I have neither muscle wastage nor gyno. The same is true for many other PFS patients here. And I am pretty sure there are/were PAS patients here who had either or both.

One of the key aspects of this condition is the huge variability in symptoms. Hence, I’d be careful to conclude differences between PAS/PFS based on just a few anecdotes. Even within each patient group you will find people with widely different symptoms. It is thus not surprising that you will find differences if you compare a few patients from each group. This does not necessarily mean that the conditions are different.

We have collected standardised data of a few hundred PFS patients, over one hundred PSSD patients and a few dozens PAS patients. The aggregated profiles on initial analysis were remarkably similar. We hope to confirm this with more detailed analyses in the future.

4 Likes
#37

The forum is long-gone now, but there were quite a few PAS guys on Dr. Crisler’s “All Things Male” forum with muscle loss and gyno. Several case reports of gyno developing in relation to Accutane use show up on a relevant Google Scholar search.

As Northern mentioned, there are also very few differences among the symptoms and their severity among the PFS, PAS, and PSSD survey groups according to the data collected on this site.

#38

@Northern_Star, @Dubya_B thank you for the important clarification.
In the light of these data this condition seems to me even more puzzling than I thought. I don’t see any clear pattern in the development of the symptoms and their severity.

1 Like
#39

i’ve been curious about what would happen if i did a long water fast. i’ve been going through this for over two and a half years now. the only thing that has brought me back online was a very small amount of fecal transplant. for some reason whenever i continued taking it all of the benefits stopped. even my acne was coming back. this was a few month back, i’ve been trying to replicate it, but no luck yet. i even had permanent improvements from that experiment. i also took a small dose of accutane again to see what happened. i started to feel a tingling sensation in my balls and neck after an hour, but i’m still not sure what to think of this. i also felt a higher IQ.

it really sucks to be in this state, but i’m sure the condition is fixable just based on my experience. one of my friends who also has this condition told me about his aunt who took accutane, she developed lupus, and to treat the lupus she was put on an immune suppressant, after a while her acne came back like crazy, she had huge pimples full of puss.

i’ve also noticed this strange mechanism inside my body, i only get reactions to things if i take them in a very small dosage after a long break. i remember trying trazodone in 50mg, it had no effect on me. then a month later i took like 2.5-5mg and it had no effect like it’s supposed to, like sleepiness, but i became aroused again, my acne started coming back, i had a large amount of semen.

a few weeks after having permanent improvements from the fecal transplant, i took a single capsule, this time on an empty stomach. i immediately felt very tired, even after just sleeping 11 hours. i fell back asleep for 5 more hours, and woke up extremely thirsty. i drank a ton of water after waking up, and next thing i know i crashed hard from my previous gains. i had terrible sleep and zero libido, along with more anhedonia, and all of my acne disappearing.

sorry for the rambling, hope this makes some sense

1 Like
#40

I have appointment with my doc next week and will ask him to prescribe me mifepristone. In the following summary of scientific literature I explain why.

HPA Hyperactivity

Allopregnanolone (Allo) is important for the pregnant mother. Indeed, during pregnancy, an increase of Allo levels occurs in the maternal peripheral circulation, as well as in the maternal brain. In rats, the increased levels of this neuroactive steroid interfere with the hypothalamic-pituitary- adrenal (HPA) axis reducing, in particular during late pregnancy, the response to stress exposure of the mother.[1]A study showed that there is an apparent correlation between endogenous levels of brain allo and basal and stress-stimulated HPA axis activity.[2]

1912341512_HPAAxis.png.8e6cb428c056dd7634cde2ada2d512b0.png

This could mean high Allo surpresses the HPA axis and low Allo, as reported in PFS, leads to HPA Hyperactivity. Definetely, HPA Hyperactivity is reported after the use of isotretinoin .[3],[4] Normally there is the negative feedback loop thorugh glucocorticoids at the Glucocorticoidreceptor (GR). However after taking Iso, the Glucocorticoid Dexamethsone does not surpress the plasma concentration of the glucocorticoid Corticosterone.[5] This means that the negative feedback loop is impaired. Histological examination and western examples affirmed this showing a significant decrease of GR-IR cells and GR density. The other pathway in which Isotretinoine increases HPA activity is an increase in the CRH-expression. This is through RARalpha activation, which could upregulate CRH mRNA expression via direct action on its promoter sequence.[6]

In general HPA Hyperactivity leads to more Glucocorticoids being produced.

The Glucocorticoids intervene with the secretion of GnRH. Glucocorticoids modulate the HPG axis by directly inhibiting the release of GnRH from the hypothalamus and the synthesis

and release of gonadotropins from the pituitary.[7] GnRH has the task to stimulate FSH and LH production. If it´s inhibited less FSH and LH will be produced.

The HPA Hyperactivity with all histological changes could be normalized by Mifepristone.[3]

Safety of Mifepristone

The mifepristone studies are relatively unique in that subjects received the medication for 7 days. Summary of seven clinical trials, five of them double blind (N ranging from 5 to 433), suggests that mifepristone has efficacy in reducing psychotic symptoms.Importantly, mifepristone’s effectiveness appears to be optimized when attaining a plasma level of ~1600ng/mL, which equates to roughly 1200 mg/day orally.

Patients with high mifepristone plasma levels also showed a reduction of depressive symptoms relative to placebo. Although mifepristone is associated with some gastrointestinal side effects and headache, very few patients discontinued due to side effects.

A metaanalysis said the following: Adverse Events (AE) from all five studies ( n = 1460) were evaluated by dose group and by all doses combined.

Overall, the safety of mifepristone versus placebo was comparable, with a similar number of events noted in each group. The NNH (Number needed to harm) was calculated using the outcome of study dropouts due to AEs. For all studies combined, the NNH for mifepristone was incalculable because dropouts due to side effects were higher for placebo (1.6%) than for mifepristone (1.4%). In two studies, dropouts because of AEs were higher for mifepristone than placebo (1.0% vs. 0.9%, NNH = 1000 in study 1; 2.4% vs. 1.6%, NNH = 126 in study 3). Mifepristone appeared safe and well tolerated across all three dosage groups. The rates of treatment emergent adverse events were similar across placebo (62%), mifepristone total (67%), mifepristone HPL (69%), and mifepristone LPL (65%) groups. There was no statistically significant difference in rates of adverse events between mifepristone HPL and LPL groups.[8]

References

  1. Central Opioid Inhibition of Neuroendocrine Stress Responses in Pregnancy in the Rat Is Induced by the Neurosteroid Allopregnanolone, https://www.research.ed.ac.uk/en/publications/central-opioid-inhibition-of-neuroendocrine-stress-responses-in-p

  2. Allopregnanolone modulation of HPA axis function in the adult rat, https://pubmed.ncbi.nlm.nih.gov/24658404/

  3. All- trans retinoic acid-induced hypothalamus–pituitary–adrenal hyperactivity involves glucocorticoid receptor dysregulation, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4030330/

  4. Chronic all-trans retinoic acid administration induced hyperactivity of HPA axis and behavioral changes in young rats, https://pubmed.ncbi.nlm.nih.gov/20659790/

  5. All- trans retinoic acid-induced hypothalamus–pituitary–adrenal hyperactivity involves glucocorticoid receptor dysregulation, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4030330/

  6. Glucocorticoids and Reproduction: Traffic Control on the Road to Reproduction, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5438761/

  7. Retinoic acid and depressive disorders: Evidence and possible neurobiological mechanisms, https://www.sciencedirect.com/science/article/abs/pii/S0149763420300014

  8. Combined Analysis of Mifepristone for Psychotic Depression: Plasma Levels Associated with Clinical Response, https://www.biologicalpsychiatryjournal.com/article/S0006-3223(18)30035-0/fulltext

1 Like
#41

That’s quite interesting Thommy! I look forward for hearing news from you. I think some PAS sufferers already claimed that Mifepristone helped them in so many ways.

2 Likes
#42

It took my doc some time to decide that he will prescribe the mifepristone for me. He took second opinion but now he wants to organize it for me and we will make a treatment contract. One cannot buy it in the pharmacy so he has to order it I think at the manufacturer for off label use. I will tell you when I start taking it.

1 Like
#43

I have got the mife now and will start taking it tomorrow. I will take 700 mg for 7 days. Ronnie was cured 2 weeks after taking it, if I see results it will take some time I guess.

4 Likes
#44

any update ?

#45

First I want to say, I’m happy that I have done it and hope I’m cured in one week. I waited a long time to take something and informed myself well. Im very optimistic it will have a positive effect. About what I experienced on the drug: during taking the mife I felt dizzy and had headaches on two days. On the last evening I had chest discomfort and my blood pressure was too high. But the next morning the values normalized, so I didn’t go to the doctor. I had a check up anyway last Friday, but for now everything like troponin (heart inflammation marker) and ECG was fine. It is very likely a blockage of the spinal column in the chest area for which I’m doing some stretching exercises now. I also had chest discomfort after the covid shot, looks like I’m prone to this. I didn’t have any other changes, only my family told me my mood has gotten better. Tbh I was scared when I saw my high blood pressure, bc in the doctors information it says that mife can cause Adam Stokes Syndrome which is short term heart failure. I don’t know if high blood pressure and Adam Stokes syndrome are related though, I just saw, something is different with my heart and got scared. Anyway with the high blood pressure I could not have taken it any longer or I would have had to lower my dose accordingly. But I was finished with the 7 days so it didn’t matter and the values as I said normalized. High blood pressure is the most common cardiovascular side effect and happens in 25 % of people. So when on the drug one has to check the blood pressure and imo doing it under medical supervision so the doctor can react.
All in all being on the drug was easy besides the last evening, coming off of it, I had some insomnia which I think is bc of the spinal column blockage, now I’m waiting. Ronnie, who also had PAS, said sth like after 2-3 weeks he felt like light switches going on and after 4-6 weeks he felt cured 85 %.

5 Likes
#46

What dosage did you use? Also if you could specify your weight it would be good.

#47

I wanted to take 700 mg for 7 days and that’s how I started. The first 4 days I took 700 mg. Ronnie messaged me that he took 900 mg the first day and 600 the other days. I decided to take 900 mg on the 5th day and 600 mg on the last two days. My weight is around 70 kg.

2 Likes
#48

Thank you. I also want to ask you, did you monitor cortisol levels before / after treatment?

If yes, were there any changes?

#49

I did not, but someone else with PAS wrote me close before I took mife that his value was 145 in range 1-63. Im sure my value would have been too high as well.

1 Like
#50

It’s been two weeks after taking mife for me now. I feel different, have a better mood, but not cured. I feel like I’m improving every day a little bit since cessation. Im being cautious with saying it improved a lot but overall I’m in a better condition.
I was struggling before taking with severe dandruff, now it is better and my skin is producing some oil right now.
Will report back. The guy cured said he really felt the difference after 4-6 weeks.

Self-reporting template - ONLY USE FOR FUTURE POSTS TO REPORT ANY TRIALS OF TREATMENTS, NOT YOUR INITIAL MEMBER STORY

  1. Name of the therapy/substance: Mifepristone
    • Dosage: see above
    • How often you took it: 7 days
  2. Status
    • Still using [ ]
    • Stopped with no lasting change to initial symptoms [ ]
    • Stopped with persistent change to symptoms [x]
  3. Duration of use: Days [7] Months [ ] Years [ ]
  4. Response when you started:
    • Greatly improved [ ]
    • Slightly improved [ ]
    • Stayed the same [x]
    • Slightly worsened [ ]
    • Greatly worsened [ ]
  5. Current response (if you’re still using the therapy/substance) OR Response in the time before you stopped the treatment
    • Greatly improved [ ]
    • Slightly improved [x]
    • Stayed the same [ ]
    • Slightly worsened [ ]
    • Greatly worsened [ ]
  6. Lasting changes to initial symptoms after cessation (if you have stopped for more than 3 weeks)
    • Greatly improved [ ]
    • Slightly improved [ ]
    • Stayed the same [ ]
    • Slightly worsened [ ]
    • Greatly worsened [ ]
5 Likes
#51

Hey @Thommy280495, any update ?

#52

Hey,
my wellbeing improved, but still I have pas. I also could concentrate better. Unfortunately since the last 4 days I’m not feeling well, so I was thinking this either was placebo or now my prog is too low like it happened to Ronnie. Next week I have a blood test then I’ll know. I won’t try out any other treatment for the next 4 weeks, as I’m giving this some more time, next thing for me would be probiotics.

1 Like
#53

Focus 100 % improved. No more anxiety. Experiencing moments of joy and clarity. Able to take part in life again. Faith in broscience restored.

1 Like