One more thing in common with what happened to me. I just hope you will not crash as bad as I did…
But they might explain mine? I seem to have the opposite symptons to sufferers of PFS (increased libido, ridiculously oily face/scalp, acne, hugely accelerated hairloss, constant painful scalp itch/burning/tingling).
I understand this doesn’t compare to the suffering of PFS but its still valid to me and having a huge effect on my physical and mental wellbeing. Nobody on the hairloss forums will even entertain the idea, same as they won’t entertain the idea of PFS.
I’m just making this post in an attempt that hopefully someone else will have experienced this. I thought this was a forum for anyone with persistent side effects after stopping Fin, not exclusively PFS.
I’ve had several private messages from user “vincent” but I can’t reply because I don’t have private message function.
Anyway most of my hyperandrogenic symptoms like oily scalp/face/acne have been kept in check by using medicated shampoos and facewipes etc. Sex drive still remains high. Obviously these symptoms I can live with…
However the scalp pain/itching/burning remains unbearable and all the affected hairs on my head are miniaturized and falling out. It is 24/7 and I can barely sleep at night or get out of bed in the morning to go to work. I’ve already lost my girlfriend and some of my friends due to being so depressed and stressed from this for 8 months now.
I’ve been to see an endocrinologist who recommended I get a more in-depth blood test including DHEAS, SHBG, TGF-1, DHT, Androstenedione etc. I will report back with these results.
The dermatologist I saw thought I had atypical pain syndrome and prescribed me Amitryptyline for the pain and some hydrocortisone to apply to my scalp at night. Neither have worked.
I’m pretty sure I’ve permanently and massively upregulated my androgen receptors and become hypersensitive to DHT, which would explain the micro-inflammation going on in my scalp as DHT attacks the hair follicles (this is the pain/burning sensation I feel). I have no idea how to treat this, none of the derms/endos I’ve seen can explain it and don’t think Propecia could do this. Its now been 5 months since I quit Propecia so I am terrified this scalp pain will be permanent. I can’t even find anyone online who has experienced something similar - other people have experienced reflex-hyper but nothing with this severity of scalp pain.
Do you have increase muscle mass too?
You should really try very cold showers. It helped With the itching in my case
I think I probably would if I went to the gym, though I can’t really be sure, this scalp pain is so debilitating I can barely get out of bed in the morning. Like I said most of my other symptoms, with the increased libido, oiliness, I can live with. But this scalp pain is unbearable, I have trouble sleeping at night, my scalp just constantly feels like its on fire.
Its been 9 months now of chronic pain and scalp inflammation. Been to see every dermatologist/trichologist/endocronologist. Blood results are all within normal range, though I am still awaiting DHT which I think is the culprit of this.
I think the last bullet in my gun is Sulfasalazine, a powerful anti-inflammatory and mild immuno-suppressant in the hopes that if this is scalp pain/itching is caused by DHT, then this may work to relieve the symptons. Pretty heavy drug with some nasty sides, but I’m desperate now. If that doesn’t work, and it’s just purely DHT causing this, then I’m screwed because I don’t ever want to take a 5AR inhibitor like Fin again.
I went through a period like this a few years before I crashed
Yeah, me too. It was a few years of this actually. I think it started while I was still on fin… and continued for 3 years while off and then boom! CRASH. After I had been around 2.5 years OFF fin I had basic blood test done and it showed a testosterone level above the “normal” limits. After the crash I was very near to the low normal limit.
My situation has just gotten worse. Relentless scalp pain/burning/itching, it doesn’t stop not even for 5 minutes. The only escape is when I’m asleep, and it often takes me a long time to fall asleep. I was supposed to be traveling the world with my best friend in November, that’s been called off now. I’ve been to every possible doctor and they’re all useless.
One tried me in a trycyclic anti depressant, which can reduce pain/itching, which has now given me gynecomastia, even though I only took it for two weeks. So I’ve got that to deal with now. I’m losing everything, lost my girlfriend and most of my friends, my body and hair are fucked up, losing touch with reality because of how relentless this is, losing my mind because this doesn’t allow me to think or feel anything else. I don’t socialize, go out or do anything anymore, I spend half my life on the internet searching for something, anything that can treat this. Like I’m sure you guys do, every day, probably every 5 minutes, I fantasize about my life if I hadn’t taken Propecia. I didn’t even need to take it, I had a few millimeters of receded hairline. I read Merck’s studies about 2% side effects, which went away when stopping the drug, and thought I had nothing to lose by trying it. Now I know I’ll be battling this chronic pain, burning and itching for the rest of my life. This may not be the same as PFS but I know what it’s like having something so seemingl harmless take your happy life away from you.
Dench57 please contact me ASAP. I have some ideas for you. Thanks.
update?
You might hold the key to PFS. Contact the foundation!
I think you should try one or two days of fasting. so no eating at all and look how you feel those day.
Hi Dench57,
Sorry to hear you’re having a bad time of it. I did have a brief period of symptoms like yours when finasteride first left my system so I know how uncomfortable the scalp itching can be.
I strongly recommend that you speak to your GP urgently and insist on blood tests. If, heaven forbid, you have a crash at the end of this period of hyerandrogenity, you don’t want to be left guessing at how your hormones have changed like the rest of us on here.
Other members will be able to tell you what the most useful indicators are but my experience with NHS GP’s is that you’ll struggle to persuade them to do much more than testosterone, LH, FSH, cortisol and liver function. If you could persuade them to test for E2 and DHT they’d also be extremely useful.
Arm yourself with as much info as possible before speaking to them because doctors are generally sceptical/unaware of the problems finasteride can cause. If you do manage to get bloods done please do make a note of your results and post them on here as they could prove extremely useful to the rest of us too.
All the best.
Friend you hold the cure.
Please join this forum and thread. We are talking about hyperandrogenic
you need to go to the studies
they should study you because you seem to have stopped where others just passed by
I had painful scalp itching before i started finasteride. Nizoral shampoo helped, but I had to use it daily. I also used to hold ice bags on my head. Finasteride stopped the itching totally.
Did you ever get the blood testing you mentioned above? Can you share the results so we can compare it to what many of us are seeing and we can see what we share and where you may be different as that may hold the key to your recovery.
Hey guys i would like to know how is going for you?? I knoe Dench57 has declared that it was not even RH that he was experiencing but what about others? i quit propecia 2 weeks ago, but symptoms are still with me. Anyone has ever recovered from RH ? Anyone knows any post about someone recovering from it? because i have never came across
Same here … and I tried everything …
Finasteride, Dutasteride, Spironolactone, Bicalutamide, Cyproterone, Enantone … and I’m still losing my hair and have itchy scalp. Since I started anti-androgens itchy scalp is insane, I have eyes pain, pain in my joints, legs, arms, penis, pelvis, …
I stopped AA and pain was unbearable, but after 5 months pain decreased (still here 6/10 instead of 8/10). So I go back to AA (because of hair loss, and because I’m MTF …).
10 years on Dutasteride my libido was dead. I stopped for 2 years, still nothing. My testosterone was high.
When I started Spironolactone (100 then 200) my libido came back in a vengeance, same with others AA … and very agressive hair loss started too.
My theory is androgen receptors upregulate when no so much testosterone (and DHT ?) … but when you increase testosterone by a lot (supraphysiological testosterone - with supplements or tamoxifen or hcg or something else) I’m sure androgen receptors get damaged or degrade or are underexpressed (that’s why some guys have FPS). I can’t prove my theory.
Maybe some guys should try to lower their testosterone levels by taking low dose of anti-androgens (2-5-10 mg cyproterone - 50 mg Spironolactone).
Or if you want to stop hair loss or ichy scalp maybe increase testosterone level. BTW I would like to be able to do that … but because of transgender issues I cannot. I’m trying to convince myself to stop AA and take tamoxifen to increase my testosterone … it’s really hard.
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Mine did the samething I never shed before but generic fin caused my hair to fall everywhere…Then after stopping when dht returns it gets way worse, fast…What ever you do don’t take it again I made the mistake of taking propecia the secnd time hoping to stop the shedding and it did but the side effects were so bad I had to stop and then instead of getting the massive shed a few months later I got pfs and my body has gone completly haywire and my health and looks have been wrecked…