1 month off. Help

Member Stories
#1

  1. How did you find this forum?
    Google

  2. What is your current age, height, weight?
    34, 6’1", 180

  3. Do you excercise regularly? If so, what type of excercise?
    Occasionally… racquetball, gym, etc

  4. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)?
    Meat eater. fairly healthy

  5. Why did you take Finasteride (hair loss, BPH, other)?
    hair loss

  6. For how long did you take Finasteride (weeks/months/years)?
    4 months

  7. How old were you when you started Finasteride?
    34

  8. How old were you when you quit?
    34

  9. How did you quit (cold turkey or taper off)?
    cold turkey

  10. What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic?
    Propecia

  11. What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
    1 mg/day

  12. How long into your use of Finasteride did you notice the onset of side effects?
    At first everything was fine… a few months in depression/headfog. didnt put the two together. once i did i stopped immediately

  13. What side effects did you experience while on the drug that have yet to resolve since discontinuation?
    Put an X beside all that apply:

Sexual
[X] Loss of Libido / Sex Drive
[ ] Erectile Dysfunction
[ ] Complete Impotence
[X] Loss of Morning Erections (COMING BACK SLOWLY)
[X] Loss of Spontaneous Erections
[ ] Loss of Nocturnal Erections
[X] Watery Ejaculate
[ ] Reduced Ejaculate
[ ] Inability to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

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

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

Misc
[ ] Prostate pain
[X] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[ ] Vision - Acuity Decrease / Blurriness
[ ] Increased hair loss
[ ] Frequent urination
[ ] Lowered body temperature

[X] Other (please explain)
PAIN BEHIND MY EYES. IS THAT RELATED TO HEAD FOG?

  1. What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
    Gone to my GP. He said give it time i will be fine.

  2. 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)?

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

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

Started Taking propecia in May because of hair Loss. I did a little researched online, but was told by my doctor and most info i could find that a very small percentage of men experience loss of libido or sex drive, and that stopping the drug would stop the side effects. Seemed like a good bet for me at the time.

At first, things seemed fine… hair loss slowed. all was great. I was able to perform in bed, and masturbated regularly. Semen was a bit more watery, but i could still perform, and have a solid erection. so i didnt worry.

About a month or two in, i started feeling very depressed, and the head fog set in.and my libido started to plummet. pain in testicles, and in the shaft and tip of my penis. penis felt disconnected, etc. I too, like many others here, thought it was just stress in my life, family issues back home, etc. and that the depression was induced by my life at the time, not the drug… and i had recently (before taking propecia) been checked out for Testicular cancer, epididymitis, so i thought the pain was still part of that? Only when i found this forum (after many visits to my dr., a therapist, noticing change in penis tissue, pain, etc) did i realize that it was all being caused by the propecia. I stopped cold turkey on sept 30th. Things started to get better, depression was gone… libido started to return. pains went away, etc… yet i knew from this forum that i wasnt out of the woods yet.

Then yesterday i think i had my first crash? all the symptoms came back. pain, brain fog, lack of everything (energy, sex drive, joy)…

needless to say, i am worried. my question is, ive been off for 28 days… is it too soon for me to worry. when do i go get blood work done? after a month? 2? 5? i know you guys say the majority of men recover without lasting side effects…

am i freaking out to soon? thanks

#2

I would be proactive about it. You should have got the bloodtests immediately so you could have kept track of your hormone profile as you came off and forward. You might not be experiencing a legitimate crash. If you crash, you’ll see rapid muscle loss, rapid genital shrinkage, genital demormities, extreme anxiety and beyond. Did you masturbate a lot or have an episode of drinking prior to the crash? A lot of us have induced a crash during the immediate recovery period by doing this.

At this point you should be eating extremely healthy (sounds trivial but its not), very light exercise only to keep blood flowing and releasing endorphins. Stay as far away from alcohol as possible, not even one drop. No masturbation. Your body is walking a fine line. If you do anything to alter any hormones it could be detrimental.

Stay away from this site. It will cause more stress and anxiety. Wait 8-10 weeks and see where your at. Then come back.

#3

thanks for info. will have blood work done next week, will post results. have been trying to eat healthier. Started doing the boiled broccoli drink in AM and evening.

my “crash” was return of head fog, genital numbness (on and off), extreme limpness (is how i would describe it) comes and goes, pain in genitals, depression/stress (maybe because im stressing out from reading everything here, will stay away for a bit) . my penis is definitely different than it was… more wrinkles, etc. hopefully this goes away with time?

i did have sex over the weekend. though i definitely wasnt feeling 100%, i was able to perform and ejaculate, and had a vigorous cardio workout at the gym the day after that (1 day before everything returned)… maybe that has something to do with the downturn?

#4

Getting blood work done thursday morning. we’ll see whats going on.

question. Does hair falling out mean things could be heading back to normal? Feeling slightly better over the past few days and have noticed more hair falling out in the sink. maybe a good sign? thanks for any answers!

#5

I would think hair falling out is a good sign, yes.

#6

Still waiting on blood results. should get them today. will post when i have… but im pretty sure i know what it will be…

just an update on me. its not good.

-hair is stil falling out more then when on fin. a bunch in sink in AM gives me hope…
-as of thursday i quit smoking (had been cutting down over the past few weeks), quit drinking (i have a very social job, so this will be difficult) and have been on a raw diet/veggie diet for 3 weeks now. quit drinking coffee… occasionally have green tea…

-taking supplements - vitamin d, c, green tea extract, fish oil, multi, zinc, recently started horny goat weed (may stop, as i i didnt take it yet today and the pressure in my balls hasnt been back)… not sure if its a good pressure or bad? but was definitely doing something…
-melatonin… should i keep taking, thought maybe it was making the head fog worse?

-for the first time in my life i wasnt able to get an erection at all on sunday. penis was cold, shrunken (or drained of all life) and floppy. i almost lost it… tried to masturbate… couldnt get hard… havent been able to since (2.5 days)
-last week was morning erections… followed by more the full/normal penis in AM… then gradually it would get worse as the day goes on… that time of full/normal penis now seems to be getting shorter and shorter.
-the numb/dull ache in my penis near the base of the shaft has been ongoing for many many days now…
-head fog was slightly better yesterday, but back today.
-morning erections have disappeared.
-past two nights, i have been having night sweats and waking up in the middle of the night for no reason… confused. strange dreams… nothing is right… maybe this is now nicotine withdraw?

my question is, as what point do i admit that i am in the same boat. and start seriously looking for answers? does every guy with persisting side effects have them forever? has anyone gotten better after several months off? ive been off for 5 1/2 weeks… thanks for your help guys…

also, my best friend/business partners father runs a hormone therapy lab and knows all of the top Endos in the country… seems like a place to start?

#7

Your sides sound almost identical to mine.

Take at least 5000 IU’s vit D3 daily. I’m gonna bet you’re like everyone else here you have slightly low to very low out of range vit d.

Start researching those Endos ASAP. Anyone with backround in androgen deprevation treatment or has actually seen PFS patients? See what you can turn up. Please and thank you.

gl

#8

Ya, your symptoms are pretty close to mine. I’d say you are in the long term side effects camp. Usually they say eight weeks, but you are a full blown crash so I wouldn’t get your hopes up. I waited around like most people to see if I could beat the odds and recover naturally. That never happened of course. I’d go to the recommended doctors on this site pronto. They may be able to get you drugs i.e. clomid to get you going before your system down-regulates.

#9

so there is a window of time where clomid or other treatment may work?

#10

Nothing is proven. However, there have been a few cases where people have taken clomid early on and been able to recover to some degree. If you wait and it gets outside of six months like in my case, things just start shutting down and your body sets up its own profile. If I had to do it all over again, I would have set up appointments with the pfs doctors immediately and started fighting it just to see if I could beat it instead of letting it take control of me. I was blind though, I didn’t understand what any of this stuff was. It took me months of studying this board etc. to figure out the disease.

#11

Got to agree with proscarred here. Nothing is fully understood about this disease but it seems those who try something quite soon might have a better chance of responding. Getting on clomid or similar is a good idea early on. I know I only developed sides like weight gain and joint pain after I’d been off for more than a few months and my body had likely downregualted to the new hormonal levels. That guy labrea took clomid quickly under an endo’s supervision with bad symptoms and t levels in the gutter and improved across all areas.

Problem is most of us arrive here with only the basic knowledge of hormones, it takes time to digest all the experiences and theories on the board and we are reluctant to attempt modifying hormones again 'cos we’ve been ‘burnt already’. It’s like the complete opposite of bb’ers who will undertake a PCT quickly after a cycle without a second’s thought.

#12

If that’s a full blown crash then I was in a bad, bad way for a very long time.

I think the advice being given out here is a bit crazy to be honest. If there is a good doctor that will treat hormones nearby definitely go to him, but don’t go paying fortunes to travel a ‘PFS’ doctor. There isn’t a single recovery from those guys.

#13

Well. I am the first one to complain about the lack of documented recoveries from the PFS docs. I am a huge skeptic. However, if I knew from the start how deep this disease can cut, I would have no problems paying five hundo and wasting a day or two of my time for a chance at shocking my body back into a better state and living a normal life. I went the endo route from two weeks on after my crash. I met with one of the top endos at Mayo clinic, THEY CAN’T HELP YOU. I ended up wasting more money in deductables etc. than I would have had I just went the PFS doctor route.

#14

i woke up just about every hour on the hour last night. ive always been a great sleeper.

getting very dizzy when standing up. passed out once yesterday. had to sit down/blacked out. did that happen to anyone else?

no change anywhere else. this is hell. i cant believe this is happening.

thanks for the advice… just called my gps office, and apparently the blood results have been sitting on his desk since monday, but he has to give me them when hes not too busy. meanwhile i am losing it here.

money isnt really an issue… i have good insurance, and own my own business, so i can travel easily. i also have family in PA. so maybe i’ll start with Dr. Shippen.

thanks for your advice all.

#15

my GP just said im having symptoms that have gone from my head to my groin… wtf do i do.

#16

would i need to see Dr Shippen or Jacobs in person, or could they just look at my blood test results and do a phone consultation for them to prescribe Clomid?

im sure you’ve read this, but doesnt sound like clomid could hurt?

Male users generally find that a daily intake of 50-100 mg (1-2 tablets) over a four to six week period will bring testosterone production back to an acceptable level. A very common regime of dosing is; 300 md/day 1, 100 mg/day for days 2-11, and 50 mg/day for days 12-21. This raise in testosterone should occur slowly but evenly throughout the period of intake. Since an immediate boost in testosterone is often desirable, many prefer to combine Clomid with HCG (Human Chorionic Gonadotropin) for the first week or two after the steroids have been removed. The kick-start from HCG also helps to restore the normal ability for the testes to respond to endogenous LH, which may be hindered for some time after the cycle is ended due to a prolonged state of inactivity. Once the HCG is stopped, the user continues treatment with Clomid alone. HCG should not be used for longer than two or three weeks though, as the resulting increased testosterone and estrogen levels may again initiate negative feedback inhibition at the hypothalamus.

#17

sorry for all the questions. im starting to freak out a bit…

no changes today… severe head fog… genital numbness. limp, cold and rubbery (except slightly more full in AM), lack of libido. lack of joy at all for anything. and now as of last night insomnia…

is this all severe because im having a crash… or is it always like this? does it get better? it has to, right? as of now 1-10 i feel like 1… couldnt imagine life being worse…

how much of healing is positive thoight and hope to get better, and how much is action? i find it difficult to believe that in time our bodies just wont fix themselves…

anyone with any insight? thanks again for your advice.

#18

Call them and find out. I think they have phone consultation options. If they recommend a protocol like the one you mentioned here in the thread, it would be good to do it now rather than wait. Your receptors may still be sensitive to the testosterone. If you wait, they may become de-sensitized and then the increase in testosterone may not make a difference.

#19

I had dizziness standing up early days too. This points to adrenal problems, as does the bad sleep. It cleared up but I’m pretty sure I have adrenal fatigue, waiting on a saliva test. Also had blurry vision sometimes in the early days.

Thinking again about trying clomid straight away; I lost a lot of scrotal hair quite quickly after I crashed. This is very much a post-fin phenomenon not really to do with low T, more conversion of T to DHT or something, so it probaly wouldn’t have helped me much.

#20

Its not written in stone that you’ll be like some of us here so keep an open mind at least. Probably the first few months of this are the worst with sides and trying to come to terms with what has happened.

As proscarred said the sooner to a doc the better. I’m a patient of both Shippen and Jacobs and both said they need a in person visit to get started. Shippen will have you send him your info about a month before your appointment and he’ll mail you a lab order. So, at the time of your visit he has the labs and your medical history. You have to see Jacobs in person, then he gives you the lab order. Shippen has alot of experience, maybe the most, in treating PFS. Jacobs just started treating this about a year ago but is pretty much at the top of his field.
The only doc I’m aware of that does a phone consult is Crisler.

gl