NEW MEMBERS, PLEASE FILL IN THE FOLLOWING TEMPLATE. This is so that we can more easily track symptoms and hopefully find patterns in our syndrome. This will also help others understand your background and situation.
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Where are you from (Ireland)?
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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?) General symthom searching
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What is your current age, height, weight? 20 years old, 5 foot 6", 168 pounds or 12 stone
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Do you excercise regularly? If so, what type of excercise? No
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What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)? A bit of everything, not great, needs changing
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Why did you take Finasteride (hair loss, BPH, other)? Isotretinoin (Accutane)
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For how long did you take Finasteride (weeks/months/years)? 5 month’s
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How old were you, and WHEN (date) did you start Finasteride? 19 years old, May 2017
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How old were you when you quit, and WHEN (date) did you quit? 19 years old, September 2017
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How did you quit (cold turkey or taper off)? Cold turkey
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What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic? RoAccutane
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What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)? Can’t specifically remember the dose per each month but maximum was 60MG for 2 months and a mix between 20mg and 40mg for the rest
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How long into your use of Finasteride did you notice the onset of side effects? Looking back i think i noticed them about month 2
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What side effects did you experience while on the drug that have yet to resolve since discontinuation?
None that I’m aware of
Put an X beside all that apply:
Sexual
[X] Loss of Libido / Sex Drive
[X] Erectile Dysfunction
[ ] Complete Impotence
[X] Loss of Morning Erections
[X] Loss of Spontaneous Erections
[X] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[X] Reduced Ejaculate
[X] Inability to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility
Mental
[X] Emotional Blunting / Emotionally Flat
[X] Difficulty Focusing / Concentrating
[X] Confusion
[X] Memory Loss / Forgetfullness
[X] Stumbling over Words / Losing Train of Thought
[X] Slurring of Speech
[X] Lack of Motivation / Feeling Passive / Complacency
[X] Extreme Anxiety / Panic Attacks
[X] Severe Depression / Melancholy
[X] Suicidal Thoughts
Physical
[X] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[X] Penis curvature / rotation on axis
[ ] Testicular Pain
[ ] Testicular Shrinkage / Loss of Fullness
[X] Genital numbness / sensitivity decrease
[X] Weight Gain
[ ] Gynecomastia (male breasts)
[X] Muscle Wastage
[X] Muscle Weakness
[X] Joint Pain
[ ] Dry / Dark Circles under eyes
Misc
[ ] Prostate pain
[X] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[X] Vision - Acuity Decrease / Blurriness
[X] Increased hair loss
[ ] Frequent urination
[ ] Lowered body temperature
[X] Other (please explain)
-Reduced Healing
-Skin Strechyness
-Skin Fragility, softness
-Visual snow syndrome
-Skin numbing
-Sensory impairment
-Fat tissue lumpyness/broken down
-Thinner skin
What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug? So far I’ve just tried inistol, magnesium, B,C,E & D vitamins
If you have pre or post-Finasteride bloodtests, what hormonal changes have you encountered since discontinuing the drug (pls 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 with Finasteride?
Tell us your story, in your own words, about your Finasteride usage and side effects experienced while on/off the drug.
Hello everyone, I’m new to the whole forum thing and have only recently joined a few in the past two weeks or so, I recently heard about propeciahelp now welcoming accutane sufferers as it’s under new management and I’m very appreciative about that as I feel like this is a very strong and pleasant community, I feel that my symthoms are almost identical to PFS sufferers and I’ve actually found more people on this forum with my symthoms than people who actually used accutane, so im hoping there’s some similarities between the two drugs in how they affect all of us and am hopefull the research over at the PFS foundation will help people on both ends.
Here is my story:
What i noticed during Accutane but didn’t make the connection to the drug.
-Muscle weakness (went to the gym amd couldn’t lift 5KG with my left arm, I thought I was unfit as I’m usually a strong guy)
-Skin not healing (red marks and weren’t fading and scarring occurred, never scarred previously and skin healed very quickly)
-Blurred vision(One day had to go a few feet from my TV, couldn’t see it and also noticed I couldn’t recognise peoples faces while outside untill very close, also had night vision issue’s)
-Eye floaters
-Increased Tinitus (had very light ringing previously which I now suspect from previous SSRI use, but it was not noticeable unless i tried to hear it, on accutane it gradually got louder)
-Ghosting vision
-Slight decrease in libido (women just didn’t interest me as much, didn’t feel the fire in my stomach, the excitement)
-Skin (odd feeling or sensitive to touch on chest, kind of sore)
-hair growth on upper cheek’s almost reaching eye (not sure if this was related to accutane or not, hard to tell)
-Flakey scalp, hair not as thick (I had very good hair before that people commented on, no signs of hair loss and had to get it cut every week or two because it grew so fast)
-Peeling skin
-Memory issues
Post Accutane:
Mostly all the above apply but are either worse or have adapted into something else.
Hair (Dry, Flakey, shedding, receded slightly, can see through it with light and overall just doesn’t look like it was pre tane, scalp also sore, sometimes itchy and has no sign of slowing down)
Genital anesthesia (one day my whole penis decreased in sensitivity, then it came back, then it went again and never came back yet, pressure in anus sometimes, testicles reduced sensation even if hit.)
-Libido (none existent, naked women do nothing for me mentally but sometimes I get an erection, I feel a distant feeling in my body that I know I used to like it, but I can’t access the feelings. If anyone ever saw the movie Get Out, you’ll understand)
-Penis ( erections are a struggle to get and aren’t as rigid if I get one at all, morning erections almost non existent, ejaculation force basically gone, ejaculation pleasure is mostly gone with no dopamine rush, reduced semen volume and force, penis was curved previously but not to this extent now, i feel the reduced healing has made my penis rotate on its axis slightly from laying on it while sleeping, never happened before, it also is a lot more veiny as the skin is thinner and stretchier, its hard to tell if i have an erection, i usually have to look as i don’t feel that throbbing sensation anymore)
-Anhedonia (gaming, music and art, the things I loved all my life now do nothing for me, no emotional connection, no excitement to play a new game or hear my favourite song. I used to get an adrenaline rush from these things. This affects everything I do not just those three)
Skin (red easily, burns if scratched, indents easily, very strechy like elastic and very fragile, can see some veins under it where I compared pre Accutane and was fine, I also have weird broken down fat under my skin now which is painful sometimes and now if i get a new spot, stays red for weeks. I did put on some weight im 12 stone now where as before i was quite slim so a little overweight for my height but not that bad, my skin became looser and more elastic all around, i got a load of stretch marks on my biceps, i think near the same time i lost a lot of sensitivity in places too, i got like broken lumpy subcutanous fat under my skin which i thought was cellulite bit I’m not sure if its even that now, i thought the skins stretchyness was due to fat but i gained weight and hadn’t lost it. My skin also peels around my hands sometimes where it went hard on accutane treatment.
I have have no idea what’s happening and if its even remotely reversible. This looks like ehlors danlos to me but I never had it before and the only way you get it is through gene mutations, but I’ve never heard of anyone suddenly developing this. Five month’s my skin took to go from tight to more elastic but luckily i have read and seen pictures of people in the same situation in regards to skin with PFS, so it could be that the gene expression of collagen has reduced, and then when it goes back to normal, skin tightens again, I’m not sure but I’m hoping it does, but please understand, this was nothing like this before accutane, 4 month’s before the treatment i got a big tattoo, absolutely no issues with skin, nothing.)
-Eyes (Visual snow 24/7, blue field entoptic phenomenon, after images, shimmering vision, eyeballs twitch when focusing and weirdly when trying to imagine something in my head, eyes seem to not be aligning correctly and sometimes I see my left eyes image slowly merge with the rights, almost like latency, if i stare at something i can usually see through object due to me being able to see my left eye and my right eyes view point, the two images sometimes aren’t combining in my brain i think. ghosting vision [first symthom that appeared], light sensitivity which makes me stay indoors all day. Eyes adapt to light like a camera almost as if its trying to change its exposure, if i look at a bright spot on a cloud i can see the sky dimming and brightening like you would with trying to focus a camera. Multiple string’s and dots that come down over my vision which are floaters. Struggle to see in the dark, when i focus on something it usually blacks or disappears and I get random flashes of pink light in my peripheral vision sometimes, I no longer see the little details. I love computers and have a very good gaming setup, its a 2K monitor and before accutane i could pick out dead pixels, look for backlight bleed etc, but now if i try to focus on a lighter colour say a backlight or light grey text on white text, it’ll just fade away like my eyes are absorbing the light, Its hard to describe but if i stay still and look at something, it just doesn’t look right, my peripheral vision seems blurred so i only see exactly what i focus on, i can only read one or two words and the rest are out of focus or shimmering. I can’t just look at something and appreciate its beauty anymore, I have to strain my eyes to focus even with glasses, I can’t appreciate a 4K TV or beautiful scenery, it just doesn’t look right, like something is stopping me from seeing it propperly, I don’t drive or work yet because of these Vision issues, they make me feel dizzy and i feel like im not there in the moment, i will add i was born prematurely and my left eyes optic nerve didn’t develop so that eye was always blurry but my right eye allowed my vision to be very sharp, its hard to test all this stuff because its been almost a year since my vision was good and its hard to remember exactly what things where and weren’t normal, but i know most, if not all this stuff is not normal for me as i was very picky about details and appreciated everything i saw. One of the first things I noticed was lights seemed bright to me at night and almost blinded me, colour seems different now too, i find it hard to comprehend colours in my brain and I’ve gone colour blind with certain things. I’ll also add if i look outside the light blinds me and takes a while to adjust, then when i look inside everything is dark, if something is facing the light, it’ll look dark, like a camera would. Sorry about this one being all over the place, I have so much stuff to say and am probably missing a lot but here is a link with many of my symthoms if interested.
-Hearing (ears ring very high pitched and feel a sense of fullness sometimes, I can’t ignore it and my hearing feels weird, some days I find thing’s to be louder and sometimes lower, I struggle to hear certain speech, i ask my friends to repeat a lot of stuff as any background noise lowers thier voice, i did a hearing test online and can only hear 12k hz but im not sure if this is because I was premature or if it was caused by accutane, all i know is i got a hearing teat which only measures 8K hz and he said i shouldn’t have any issues hearing and that i have good hearing. Before accutane I know i was very sensitive to loud music, it’d hurt my ears if it was too loud, now i can max out the volume and it won’t hurt, it doesn’t seem like i can sense volume changes as much, 70% sounds like 100% so it’s more than likely neurological than physical, before accutane i never misheard anyone, i could hear my parents talk downstairs and hear the wind outside very easily, i was highly alert, not so much now, just feels like something is very off if that makes sense.
-Numbing/muted body parts (this is the weirdest one I find, certain parts of my body are now muted or feel like when i touch them they aren’t mine or I’m feeling them through some kind of material, My bicep skin, my hands, my chest and my feet feel muted along with my lips which i get no pleasure from if i kiss someone. if I put a piece of ice on my chest it doesn’t feel right, like it’s not that cold or doesn’t give me that “Get it off!” response, other parts are muted to pain, i got cut when i was working and it wasn’t sore, i didn’t even know i was cut till I looked, also my bladded just became muted recently as i call it, when my bladders full normally I’d of got a slight pain to notify me i need to urinate, now I don’t really feel the urge to go but I know I have to if that makes sense?)
-Joint/Bone/tendon pain ( certain joints pop and crack and feel sore, my shoulders hurt if i move them around and crack along with my wrists and fingers which sound like a cement mixer, if i lift stuff my tendons hurt in my arms along with my shoulders, previously my muscle’s would be the weak point if something was too heavy, but now it feels like I can’t even utilize my muscle’s properly)
-Fatigue/weakness (some days i feel like acid has been injected into my muscle’s, they all burn. I feel weak most of the time and even find raising my arms tiring, my grip strength feels weak along with my other muscle’s, sometimes I get an electric shock when i stretch my arms out.)
-Smell/Taste (Food is bland now, i have about 20% smell at best and none at my worst, I don’t know what’s wrong, i never heard of accutane causing this unless it damaged my nerves, this makes life bland and eating is just something I do to live, along with Anhedonia this makes me feel kind of robotic, almost like im not human, just something that can’t sense the world properly, i never knew how much I’d miss the smell of fresh air and plants, just a sad one this in all fairness)
-Twitching (My fingers twitch Slightly if im still and i can feel the vibration in my forearm thats causing it, its a really weird feeling)
-Stimulants (Not even sure how this one makes any sense but alcohol doesn’t really do anything for me anymore, I used to be a lightweight, took about 3 cans to feel drunk pre Accutane, but now I don’t feel anything, I gave up drink while on it and to be honest I don’t really drink much as it is but recently I drank a fair bit of vodka and all it did was give me a headache, no feeling beyond that i didn’t feel drunk or tipsy just felt the same, then the same went for cider a different day and other types of alcohol, it just doesn’t do anything as far as i can tell but im not 100% sure on this one as I’ve only heard this one with antidepressants not accutane, coffee also doesn’t give me a buzz anymore)
I don’t really think or feel anything, im just in this very moment, i find it hard to recall anything and typing all this stuff is a challenge for me so I apologize if its a bit messy and if i missed stuff, I’ll add onto it if i remember anything else, I’m very spaced out doing anything like im veiwing my own body doing stuff and not completely in the control seat and the top of my brain usually has some sort of a headache if i try think of something, I don’t recognize myself in the mirror and my mind is very distant from me along with my body and I have this annoying left ear pressure which pops sometimes, im only 20 and im house bound due to my eyesight and other issues the past 10 month’s, my mind keeps having odd memories of my childhood but the middle of my life is distant, sometimes I think what would i be if I didn’t take accutane, I have no joy or interest or motivation with life.
I found a post on Reddit which basically sums up my mind right now and will paste it in.
Reddit Post
¨ I have no desire to go on vacation, and if I do, I can’t enjoy it.
¨ I don’t care what I eat.
¨ I get no enjoyment from flowers, art, sunsets, or other things of beauty.
¨ I feel completely flat during special occasions or touching moments such as weddings, the birth of a child, birthdays and other celebrations.
¨ I still have negative feelings such as anger, sadness and frustration, but sometimes they seem less intense than before.
¨ I have no desire for, and get no pleasure from sexual activities.
¨ I feel utter despair at times in having to live in this awful state, and yet I also don’t care at the same time. ¨ I try to explain what is happening but people don’t understand.
¨ I “fake” feeling positive emotions around others. I pretend to care when I don’t and smile when I feel totally flat.
¨ I “think” my way through relationships, doing what I know I should be doing, like hugging and kissing people at the right times.
¨ [Only for those who have lost someone close] I cannot grieve the loss of someone I cared about who died.
¨ My life doesn’t make sense anymore because there is nothing I can enjoy. It all feels pointless.
Other
• Difficulty remembering things, learning, concentrating, or focusing.
• Finding things funny, but not like before. It’s a different sense of humor, and doesn’t feel as good.
• It was a sudden change when it happened. One day there was feeling and then it was gone.
• Difficulty remembering dreams, or not dreaming vividly anymore.
• Having a “blank” mind a lot. Not thinking about much or staring off.
• Headaches when it first came on. Possibly due to sudden drop in dopamine
Thanks eveyone for reading, i know it’s a lot of different stuff but if anyone needs a better explanation of anything, just ask, its hard to explain everything perfectly and accurately when you have so much different stuff to cover, but i tried my best.
I’ll also add some images of my skin and hair for reference, i know many of you will probably say my hair ain’t bad but it just isn’t the same or as thick as it was just before accutane.
Kind regards,
Devolution.
Photos:
-Stretchiness
-Fragility/thinner
-Hair
EDIT: Images removed at request of author (30/Dec/18).
. The only tests I have had done were the standard hormonal/blood tests and also a nuclear/centromere antibody test to test for an auto-immune connective tissue disease due to my subcutaneous fat loss which came back very weak positive (this is inconclusive as despite being associated with a range of auto-immune diseases, is also found in some healthy people). I might add that this was instigated by my seeing a dermatologist privately. Nothing else has been actively pursued on my behalf by the medical profession. This dermatologist said that the subcutaneous fat loss may have been a one off reaction to coming off the drug, rather than something progressively degenerative, which has proven to be the case, although I have lost a significant amount of subcutaneous fat to my face, from quite a full cheeked face to my cheeks being flat and very little cushioning between skin and bone where you can easily feel the skull. All that’s been acknowledged is that my face is asymmetrical (which is probably as a result of the fat loss) and an acknowledgement by a plastic surgeon is that I have a criss cross scattering of lines and wrinkles on my face (another private consultation when I was 39, but probably through a lack of assertion on my own part he got his £!00+ from observing me across his desk rather than a proper examination). He offered laser resurfacing which I never pursued. There was never any intimation that what I was experiencing was out of the ordinary despite my belief that skin doesn’t ordinarily age like this in your thirties for one who isn’t a sun worshipper, and also the rapid subcutaneous fat loss over a period of a few months after stopping the drug. Despite the psychological impact, I have been turned down for any NHS plastic surgery to help with this because they consider it cosmetic. It’s hard to tell you how to approach your dermatologist, but maybe if you focus on the areas which are under his domain and that you are not alone in experiencing this. This is one reason why I ended up taking photos of the damage to my face. For people who didn’t know what I looked like before the damage doesn’t scream out. It’s good to show people literally what you see and then they can make their own judgement. It’s sad that when it comes to visiting doctors we have to be prepared for them to not immediately buy into what has happened, and it can also take some resolve to successfully present our case in the face of some potential disbelief. It’s therefore important for when you go to a doctor to do a bit of prep, without unnecessarily overwhelming them as this can be misconstrued as a purely mental health issue. I think what I’m trying to say is sadly not all doctors will get it as it can appear completely left field to them and then they turn to the only tools that they have, although I would hope that a dermatologist would be a bit more aware. Is your dermatologist the one who prescribed propecia to you? If that is the case then it would feel more legitimate to present them with any issues of concern. Best of luck.