my symptoms, worsening 5 years after stopping propecia

Member Stories
#1

  1. Where are you from (country)? France

  2. 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?) Google (propecia problems)

  3. What is your current age, height, weight? 35 years, 1.90 m, 80 kg

  4. Do you excercise regularly? If so, what type of excercise? kind of, running

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

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

  7. For how long did you take Finasteride (weeks/months/years)? 1 year

  8. How old were you, and WHEN (date) did you start Finasteride? I was 30, it was 5 years ago

  9. How old were you when you quit, and WHEN (date) did you quit? I was 31, it was 4 years ago

  10. How did you quit (cold turkey or taper off)? Can’t remember well, guess I took one every 2 days and then stopped

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

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

  13. How long into your use of Finasteride did you notice the onset of side effects? one week

  14. 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
[ ] Loss of Morning Erections
[X ] Loss of Spontaneous Erections
[ ] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[ ] Reduced Ejaculate
[ ] Inability to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

Mental
[ ] Emotional Blunting / Emotionally Flat
[X ] 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
[ ] Depression / Melancholy

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

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

[ ] Other (please explain)

  1. What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug? Nothing

  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)?
    low DHT (2.03 nmol/L on a scale from 1.13 to 4.13) / sorry, I posted results in the blood tests section but it has to be approved, so I don’t have the link now.

  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.

I noticed changes, less excitability and weaker spontaneous erections since I started propecia for hair loss.
I didn’t panic, thought it was OK, even gave more control on that, since it was supposed to be reversible ; I almost felt happy to notice these effects, as a guarantee it would work for my hair.
Then I stopped 1 year after, don’t remember well what made me stop : maybe I had reached too much sexual insensibility, or started to think side effects might be more serious, or maybe I had read the first threats about side effects on the net.
It was OK to have sex, for the next 5 years, but I never went back to spontaneous erections like before in everyday life.

Now it’s like it has worsened on the past few months. I can have a hard on with porn and masturbation, or with a girl. But I absolutely don’t feel like it. And on my own or with people, I don’t get excited by what would have excited me before, like getting closer to a girl through some conversation becoming intimate or just reading some book or watching some movie where something would have turned me on. In those cases, I feel now my penis just cannot give any answer. Even if it does when touched, I’m now afraid I’m going further on irreversible impotency.
I have the feeling that propecia made me 30 years older and then, aging process has kept going on without any reversibility.
I think this has made me far more anxious than before : since last month, every day, I have difficulties to breathe. A pneumo told me I suffured from hyperventilation and asked if I was stressed.
The fact is every time I connect on this site to try and improve my understanding of what happens, I get anxious and stop breathing, and I have tachychardy problems I never had before. This I hope is just psychological, but the only despering thing in my life that might explain those anxiety crisis is about propecia.
Yet it seems I have no other way to do some research work by myself, like anyone else does on this site, because the doctor I saw didn’t believe about the everlasting side effects, even if she let me do the blood tests.
If anybody knows some endocrinologist in Paris that already dealt with that matter, please let me know.

Anyway, thanks for the idea and the quality of this site.

#2

Anxiety and tachycardia are common sides among the members of this forum, they are not in your head. The good news is that, unlike sexual sides, these are possible to fix. For most people, they resolve on their own; but for some people, they don’t, or, as in my (and I think your) case, they get worse.

Other males who have never taken propecia experience these sides at some point in their 20s as part of the aging process, which, in their case, is pretty bad. This hormonal problem, which is artificially induced in us by propecia (although the mechanism is unclear), may be solved by addressing cortisol and thyroid issues. The treatment, which consists in increasing the metabolism to youthful levels, will unlikely be successful in fixing sexual sides; nevertheless, it may work for anxiety, tachycardia, and insomnia.

#3

thanks for answering, m-81. Are you still on your drugs now ? (I saw some 2009 posts of yours explaining your treatment)

I’m studying the deep amount of infos around here before going to see some endocrinologist, with no idea there will be one here aware of the issue of fin.
I still have the hope that respiration/anxiety problem will keep on shrinking as I get familiar to it, like it did those days when not focusing too much on fin problems.
Sometimes I feel as if it was the new answer of my body, instead of liberating adrenalin, in everyday stress situations. So to do my job, sometimes, just trying to deal with some new matter unables me to breathe. I don’t know if breathing in a bag, like some recommand in cases of hyperventilation like this, can be of help.
Well, thanks again, good night

#4

Jro,

Anxiety & Panic Attacks are common side effects for people dealing with adrenal issues. There are also other sides that you mentioned that fit into this same thyroid/adrenal’s scenario, lack of motivation, difficulty concentrating.

I’m certainly not claiming you have an adrenal & thyriod problem for sure. You would need to complete some extensive blood tests and a saliva test for adrenals to understand if you this is one of your problem areas. Just so know, M81 & myself are just two of many guys on this site that have issues in this area thanks to the poison.

#5

Hi, thanks for the advice.
I try to get more understanding of what people talk about here before going to see an endocrinologist.

For now, I just noticed DHT was maybe low, but I didnt localise ‘normal figures’ for it until now.
http://www.propeciahelp.com/forum/viewtopic.php?f=4&t=4971

Have you huge problems for concentrating ? Mine seem light (at that time), I just feel I could do better, because I used to in the past, but it’s still OK. The most obvious link to that problem, to me, is lack of motivation.

I’ll try to find some articles on adrenalin too, here or at the book store.

Thanks again and see you guys

#6

On what basis are you claiming this??

#7

I claim that it will probably not work for sexual sides because, as many doctors theorize, we may suffer of androgen resistance. Keep in mind, though, that although we may be insensitive to androgens, we are NOT insensitive to all other hormones (why should we be?). Therefore, all side effects that are caused by low levels of cortisol and thyroid hormones can be addressed by boosting those hormones to youthful levels. These treatable side effects include all mental side effects and fatigue. The non-treatable sides are the ones that are directly dependent on androgens, such as lack of llibido, spontaneous and nocturnal erections, muscle waste, reduced capacity of repair, etc…

#8

How do you explain the “good” days?
Or how preg helped me sexually? Or that my situation worsened gradually once off fin…no crash?

Partial AR maybe but look at your sex hormones first and foremost. Preg is the grand-mother of these hormones, it can help.

#9

Hi guys,
I’m seeing an endocrinologist tomorrow, I’ll try to have him get me some more tests.

I read some have muscular losses problems, I think I start to experience them now. I seem strange to me that it starts also 5 years after quitting propecia. I have started to do tractions again for one month now, and I’m far from the results I got when I did a few years ago.

Maybe there is no special fact that has enhanced that worsened stage of my fin problem 5 years after, but it coincidates with a dentist appointment at which he insensibilisated one tooth. Should there be some interaction with the AR already weakened ?

Anyways, did some of you experienced ameliorations through practicing physical efforts ? I mean, normally, would a few push-ups increase testosterone through a positive retroaction ? In postfin situations, I wonder if it can be either be of some little help. Or even worsen things on the sexual side, if both uses of available testosterone were in competition.

I’ll tell you more about tomorrow’s appointment.

#10

Hi Jro

you say you got worst in just past few months. what did you use in the past few months?
what treatment did you recieve in the pas 5 years? any herbal med? please look what kind of supps or multivits did you use? some mulit vits are bad too. contain betasitosterols.

#11

the same situation happens to me; 5 years off finasteride; now worsening all symptoms, am having a slow crash over the years
pd : am from south america

#12

I am also one of those “slow crash over the years” guys, and I am now convinced this is due to chronic prostatitis (after much much initial skepticism towards that theory since I havent had any direct pelvic pain for years).
Please read solonjk posts, and plan to take a month off and a loan for some holidays in Greece.

#13

My theory is fin / sp/ accutan work inside the cells, and destroy cellular function. cells under go atrophy ,result is there is no conversion of Testosteron into useful products. when this happens our tissues/bones undergo deminerlization which usually happen to people who have almost zero testosterone. I have exchanged emails with steroid users and people with really very low testosterone but none of them had any thing like we have.

#14

Well, that’s a theory, for sure. I try not to think too much about it cause I get panic attacks then and that doesn’t help for the everyday survival !
I’d like to find resources about hormonal signal integration in the pituitary, since the stimulation test did show a problem for me (weak resopnse to LHRH).
I guess androgen receptors located inside might induce a negative feedback on the stimulation process which is at stake when releasing LH. But since I couldn’t find a book until now about how pituitary functions, all I can think is like superstition.

#15

Please elaborate further… what did your doctor say?

Use these tools for research:

ncbi.nlm.nih.gov/pubmed/
scholar.google.ca/schhp?hl=en&tab=ws
books.google.ca/bkshp?hl=en&tab=sp

#16

Please elaborate further… what did your doctor say?

Sorry, I hadn’t metionned it in my tests : it’s now there

viewtopic.php?f=4&t=4971

Thanks for the links !

#17

You may know that Im now a fervent proponent of the fin-induced prostatitis theory.
As for the LHRH test showing inadequate LH response from LHRH stimulation of the pituitary, it seems that it could be the explanation
Read this (very old, but relevant)
joe.endocrinology-journals.org/content/48/2/289.full.pdf
“PITUITARY LUTEINIZING HORMONE RESERVE IN ELDERLY MEN WITH PROSTATIC DISEASE”
In case you didnt know, clomid acts in some way like LHRH on the pituitary, stimulating it to produce more LH, the fact that it desensitizes the pituitary after a while shows its acts somehow like a LHRH or GnRH agonist, besides its SERM properties (nolvadex doesnt do this). So I guess you could read “clomid test” in this paper as equivalent of your “LHRH test”. Maybe they didnt have synthetic LHRH at that time (1970)

Of course I like to think that the inadequate LH responde to clomid DOES HAVE a “relationship to the pathogenesis of
prostatic disorders” rather than is a “phenomenon common to aging males”. I think that the “disturbance in a feedback receptor system” is caused by the “prostatic disorder”, remember that prostatic cells are shock full of androgen receptors and are one of the (if not the) principal place of T reduction to DHT via 5 alpha reductase II.
There must be some newer study that tells about this somewhere…

So of course I’m biased, but I think your case and these results bring further arguments to that “theory”.

Also i found this (not sure if relevant though)
ncbi.nlm.nih.gov/pubmed/9010323
“Effects of androgen on brain and pituitary androgen receptors and LH secretion of male guinea pigs.”

About the pituitary, here is a nice short synthesis on the hypothalamus-pituitary-gonadal axis
medicine.virginia.edu/basic-science/departments/pharmacology/dab_lab/lecture_notes/lecture_notes/pdf/intro.pdf

And a little diagram that is interesting for us
prostate-cancer.org/education/andeprv/hormone_diagram2.html

About GnRH (=LHRH)
en.wikipedia.org/wiki/Gonadotropin-releasing_hormone

C’est un peu bizarre d’écrire en anglais à un compatriote, mais bon, il faut que tout le monde ici puisse comprendre!

EDIT
More pituitary, LHRH, LH related educative stuff
On gonadotropins (LH and FSH)
vivo.colostate.edu/hbooks/pathphys/endocrine/hypopit/lhfsh.html
Wikipedia article on HPGA
en.wikipedia.org/wiki/Hypothalamic-pituitary-gonadal_axis
Could be interesting, a study on “Pituitary LH responsiveness to GnRH in vitro as related to GnRH receptor number.”
ncbi.nlm.nih.gov/pubmed/6093579

#18

I had low crash too. it lasted at least 5 years, read my full story if you need details
After stopping fina i was 90% maybe more, then i gradually got worst until 65% it’s difficult to say
Now the worsening seems to have stopped, i can say that i recovered some libido and some erection quality (not too much) while my fatty belly keep increasing despite my super healthy diet (e.g. i don’t remember last time i ate a cake) and my very intense sport activity

#19

Claro,

I’m in Paris as well, I’ve seen many doctors here. What endo did you see ? Feel free to PM me.

#20

thanks to your link, I found the big pituitary book and I’m heading to Kos with it to have lots of fun (at least, there will be some benefits from my stay there !)