In Search of a cure for Post Accutane Syndrome

any update ?

First I want to say, Iā€™m happy that I have done it and hope Iā€™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 didnā€™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 Iā€™m doing some stretching exercises now. I also had chest discomfort after the covid shot, looks like Iā€™m prone to this. I didnā€™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 donā€™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 didnā€™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 Iā€™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

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

I wanted to take 700 mg for 7 days and thatā€™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

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

If yes, were there any changes?

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

Itā€™s been two weeks after taking mife for me now. I feel different, have a better mood, but not cured. I feel like Iā€™m improving every day a little bit since cessation. Im being cautious with saying it improved a lot but overall Iā€™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 youā€™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

Hey @Thommy280495, any update ?

Hey,
my wellbeing improved, but still I have pas. I also could concentrate better. Unfortunately since the last 4 days Iā€™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 Iā€™ll know. I wonā€™t try out any other treatment for the next 4 weeks, as Iā€™m giving this some more time, next thing for me would be probiotics.

1 Like

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

That sounds great, Iā€™m really happy to hear that.

you missed the MOST important part. libido and ED ?

Get the hell out of my thread you little shill.

Everything improved including sexual symptoms. Iā€™m doing nofap and staying at my parents house right now, naturally I cannot say it in detail. But my libido is back online, that I noticed when I was in the city, girls noticing me more. Well I better say my libido was online bc I drank Kefir to cure the last part which was not cured which is my gut. Drank it this morning and woke up 20 minutes ago suddenly getting this weird feeling in my head and then a shift. I pray to God that it resolves by itself.

So for those of you who havenā€™t understood, ask questions down below. And please, I highly truly advice you guys to read my thread. I actually spend a lot of time, answering all the points how mife works, there is a fat ass essay up there. Bc I know a lot of you guys will be wondering if mife really is the cure, allthough I literally stated it in this post. But ey, it is what it is. Read the thread, read the essay. And as always stay reluctant.

Hi Thommy, thanks very much for all of your effort. I must admit, the science of an overactive HPA which - in turn - leads to a suppression of GnRH sound very plausible. I hope youā€™re still doing well and that your PAS- symptoms will continue to improve.

Iā€™m wondering did you work with a speclialized doctor when taking Mifepristone?

Hi Thommy, still doing well? Could you give us an update?

Hi frizzle47144,

Thank you. On my last blood test post mife my FSH and LH did not change, they were in the normal range. I will do another blood test in a month and check if they change, also looking at progesterone, bc it multiplied 3fold and is now slightly above the upper range.
IĀ“m in the recovery phase of the crash I had. As a therapy I took mife again 100 mg for two days last week. I also thought the crash could stem from the antipsychotic I took and changed drugs. Its hard for me to focus right now for a longer time frame and I feel restless. IĀ“m sure I will feel better the coming weeks. I have a good support system and friends who are there for me.

I worked with a general practitioner who has a research background and is also a pharmacologist.

1 Like

Thanks for the update Thommy. I hope you recover, stay strong. Staying positive no matter what is I think managing 50% of our problem. I would like to chat with you some other time, Iā€™m located nearby (The Netherlands).

2 Likes

Hey,

thank you, Iā€™m doing a lot better. I shoot you a pm, so we can chat.

The restlessness I told you guys about is not coming from PAS, it is due to a medication combination I took end of last year, which caused serotonin syndrome. My psychiatrist is thinking about giving me a serotonin antagonist.

I guess this has been discussed already, but since this will be my last post for quite some time I thought I write it here. In serotonin syndrome because of serotonin receptor agonists there is too much serotonin available. And the cure for this syndrome is an opposite medication, a serotonin antagonist, which gets rid of the excess serotonin. So I thought in our case, we took a 5 alpha reductase inhibitor and the opposite to it would be a 5 alpha reductase promoter medication. So this is just a theory but perhaps a cure would be to develop a 5 alpha reductase promoter medication, which is not available on the market right now.

Mifepristone helped me a lot, before I was struggling with studying, where I was even listening to online lectures in bed, bc I felt so tired. Now I understand more and have never heard a lecture in bed since taking it. I also started to write 5 hour long papers again. Before Mife I could have come here every second of the day and cry about how bad I feel, which is not the case anymore too. This is what I meant when I have written it improved my focus 100 % and such. It is not the be all end all cure, I correct my statement. I think the benefits I described can only be achieved by PAS cases, as a friend of mine who took dutasteride took it and didnā€™t get any benefits.

Thanks to the admins for providing this forum and I wish everyone to continue staying strong and that one day a cure will be found.

2 Likes

What is the benefit of taking abortion pills for studying?

Hi,

I want to give a little update and share helpful things.
Im doing great. Im studying currently online in one on one lessons, where Im making progress in my law studies. Im also working 3 hours a week as a tennis coach for children. I definetely had Serotonin syndrome by taking an antidepressant with which I wanted to cure PAS, but I took the antidote which is a drug called cyproheptadine and my health improved a lot.

I had a setback in around april where I had a food crash, it was either by Cacao or instant food with lots of chmeicals. So Im avoiding these two things. I would say it deminished the effects I had through the mifepristone a little, where my concentration got worse.

I made a list with foods that people with PAS should avoid in case anybody is interested, especially carrots make me feel bad every time:
Pumpkin seeds, cacao, coconot oil/water, carrots, asian instant food, avocado and white tea.

On Monday I ate an avocado, I never eat them, I also had a minor food crash from which im recovernig now. You might think avocado, that cant be, but other people on the forum reported it as well.

I want to share things which are helpful in coping with the disease:

  • having a sleep hygiene (research this), getting to bed regularly and getting enough sleep (enough sleep is key)
  • having a balance through sport (I do mild exercise every day at 5 pm)
  • having friends who you trust and talk to on a regular basis, its like psychotherapy
  • having an actual psychotherapist and talking with him about pas can also help
  • just having good schedule:
    for example when you study/work try out pomodoro method, with these due times you get the drive to get the work done, take enough breaks (I walk my dog and eat snacks), having a hobby (I study spanish in my free time)
  • doing something spiritual (Im member of an ashram where i can watch one teaching every week)

Another aid I want to share is Niacin. As I mentioned in my member story I suffer from schizophrenia because I water fasted too long when I tried to cure pas. Niacin is an alternative therapy for schizophrenia. I read on the forum if other pas patients already took it too see if there would be any complications and there was a really good feedback on the forum so I tried it out:

I can think faster, my life experience is more intense (e.g. im listening to same songs since one year and now im aware of more facetts of the music), general wellbeing has improved; this may not seem much but there is a huge difference in my way of doing things, like i dont feel the negativity as before and can sit more calmly when studying and can just do things where i was once procrastinating and it has no side effects. You just get a flush 30 minutes after taking it which means blood flow to your skin increases which goes away after another 30 minutes. I recommend everyone to try it out for himself. Taking 100 mg on an empty stomach in the evening every other day is fully enough to have the benefits and it is safe. I will increase my dose in the future since im taking it because of another reason. You have to take niacin with flushing effect otherwise it wont work.

Best regards

1 Like