Calcified accutane/finestride user

Member Stories
#1

Welcome to our community. Please fill in the following template as a way of introducing yourself, and helping others to understand your background and situation.

Where are you from (country)?

How did you find this forum (Google search – if so, what search terms? Via link from a forum or website – if so, what page? Other?)

What is your current age, height, weight?
43, 6"2,280pds
What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)?
Fin and accutane
What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
ACC 80-100mg maybe more longtime ago 6 months
What condition was being treated with the drug? Acne

For how long did you take the drug (weeks/months/years)? 6 months

How old were you, and WHEN (date) did you start the drug? 16

How old were you when you quit, and WHEN (date) did you quit? 16

How did you quit (cold turkey or taper off)?
Yes
How long into your usage did you notice the onset of side effects?
After
What side effects did you experience that have yet to resolve since discontinuation?
Folliculitis, joints , arthritis, stomach, hairloss
Check the boxes that apply. You can save your post first, then interactively check/uncheck the boxes by clicking on them. If your symptoms change, please update your list.

Sexual
[ ] Loss of Libido / Sex Drive
[ ] Erectile Dysfunction
[ ] Complete Impotence
[ ] Loss of Morning Erections
[ ] Loss of Spontaneous Erections
[ ] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[ ] Reduced Ejaculate
[ ] Inability or Difficulty to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

Mental
[ ] Emotional Blunting / Emotionally Flat
[ ] Difficulty Focusing / Concentrating
[ ] Confusion
[ ] Memory Loss / Forgetfulness
[ ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[ ] Lack of Motivation / Feeling Passive / Complacency
[ X] Extreme Anxiety / Panic Attacks
[ ] Severe Depression / Melancholy
[ ] Suicidal Thoughts

Physical
[ ] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[ ] Testicular Pain
[ ] Testicular Shrinkage / Loss of Fullness
[ ] Genital numbness / sensitivity decrease
[ x] Weight Gain
[ x] Gynecomastia (male breasts)
[ x] Muscle Wastage
[ x] Muscle Weakness
[ x] Joint Pain
[ ] Dry / Dark Circles under eyes

Misc
[ ] Prostate pain
[ ] Persistent Fatigue / Exhaustion
[ x] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[ ] Vision - Acuity Decrease / Blurriness
[ ] Tinnitus (ringing or high pitched sound in ears)
[ ] Hearing loss
[ x] Increased hair loss
[ x] Frequent urination
[ x] Lowered body temperature

[ ] Other (please explain)

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?

If you have pre or post-drug blood tests, what hormonal changes have you encountered since discontinuing the drug (please post your test results in the “Blood Tests” section and link to them in your post)?

Anything not listed in the above questions you’d like to share about your experience?

Tell us your story, in your own words, about your usage and side effects experienced while on/off the drug.

Took Accutane then turn into an old man. So jumped on Finasteride.

Feel free to ask me any questions.

2 Likes
#2

Lucky enough not to get sexual and mental symptoms… Stay strong…

#3

Yeah, sexual is not too bad, mental wise a bit of anxiety and I tend to not register when people are talking to me.

#4

Just want to add my androgens are low for my age but I’m ok in that department.

1 Like
#5

How do people think they will recover, when you’ve had these issues for almost 30 years and they haven’t resolved…

#6

It seems to be a mixture of a few rare recoveries of mild cases with persistent symptoms mixed with wishful thinking that you will be one of the lucky ones.

I’m 20 years into it, tried many of the so called “recovery protocols” across PFS, PAS, and PSSD in the past 10 years, and am worse than ever. It was certainly wishful thinking that led me to do this. What a let-down.

1 Like
#7

What keeps you going? You must still have some hope of recovery, otherwise I don’t think you would be here?

1 Like
#8

I only found out over the last few years that Accutane was toxic amounts of vitamin a. Would be interesting if vitamin a had something to do with everyone’s issues.

#9

I don’t know. Hanging on to the slim chance the research will yield a treatment in the next few years, the fact I’ve lived through this hell for so long that it would be a waste to kill myself when a treatment or cure may be close. If nothing else, I want to live to see this condition validated so I can throw it in the faces of the people, including doctors, who doubted it.

3 Likes
#10

Hey man, as you’re a long time guy, does it feel to you that a cure is close now as opposed to previous years?

#11

My own take - and @Dubya_B will speak for himself - is that I’m more optimistic now than at any previous time. This site has come a long way, despite the pointless theorising from users. The projects that we have ongoing are advancing our cause, and there is a plan in place.

We have seen solid incremental gains over recent years, boosted by initiatives from this site and related groups. Quick examples:

  • Getting sexual dysfunction added to the Patient Information Leaflet for Accutane, across Europe
  • NICE review going ahead (I need to catch up on where this is up to)
  • Re-launch of this site enabling Accutaners to join, meaning we are now working together with Propecia and SSRI victims, plus others, on our shared syndrome.
  • Launch of a cross-drug symptom survey here at Propeciahelp.com
  • Launch of the 23AndMe genetic data study here
  • The new YouTube project, run by mods here, where users are going to speak out about their syndrome

… All exciting advances.

Wider research into erectile dysfunction is also advancing. There are even discoveries of a switch in the brain connected to erectile dysfunction.

#12

Don’t know if cure is close or possible, but more studies are coming out every year.
The more studies they do I think the more they will determine the implications of exposing individuals to high levels of retinoic acid and how the body tries to adapt.

Studies show Altrans Ra increases then starts dropping on isotretinoin.

Retinoic acid levels are lower in the elderly with a reduced response to isotretinoin.

How do we now, years later, respond to vitamin A after a megadose?

Accutane has been linked to treating Alzheimer’s to Cushing’s disease so i think they will keep studying it.

I took finestride when I was 22, around when it first came out for hairloss, stopped because i was still loosing hair.