JG's story and recovery attempts

Member Stories
#1

1) How did you find this forum?

I found this forum through other websites dealing with finasteride sides.

2) What is your current age, height, weight?

I’m 22, 6"2, 70 kilo

3) Do you excercise regularly? If so, what type of excercise?
.
I don’t but I used to exercise years ago.

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

meat eater, fast-food, but i try to make it healthier

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

Hairloss

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

I took it 5 months from Jan07 to May07 in a very irregular way. I stopped then got back on it for one month and a half in Sept07 and Oct07 with progressively growing dosages (0.1 mg then 0.25 then 0.5 then 1mg)

7) How old were you when you started Finasteride?

21

8) How old were you when you quit?

22

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?

finpecia

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

I actually took at low dosages (0.25mg, 0.5mg, and 1mg at most)

12) How long into your use of Finasteride did you notice the onset of side effects?

I only noticed a strange pain in the right leg the first period I took it. It was a kind of light sciatica. I could not understand what was the link but I decided to stop to see if it would go away but it did not. After a few times at kinesiotherapy it went away.
So I thought it had no link and i got back on finpecia by the middle of september. A few days after i felt closing of the throat and pain in the chest after have smoked just one cigarette (2 weeks before i was able to smoke 1 packet a day without any problem). I went to emergency but they did not find anything so said to me it was bronchite.
I thought it had no link so i kept on taking finpecia.
The pain seemed to go away a little and the difficulties of breathing as well.
It went back very deeply when i was taking 1mg for a few days (my goal was to begin with low dosages and attempt 1mg when i feel ready), and smoked the day before.
I then got off finpecia for ever.
But then i began to feel pain in my all my genital area. Everywhere.
It’s been two weeks now and it has not stopped.

13) What side effects did you experience while on the drug that have yet to resolve since discontinuation?

None.

Put an X beside all that apply:

Sexual
[ ] Loss of Libido / Sex Drive
[X] Erectile Dysfunction
[ ] Complete Impotence
[ ] Loss of Morning Erections
[ ] 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
[ ] Difficulty Focusing / Concentrating
[ ] Confusion
[ ] Memory Loss / Forgetfullness
[ ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[ ] Lack of Motivation / Feeling Passive / Complacency
[ ] Extreme Anxiety / Panic Attacks
[ ] Depression / Melancholy

Physical
[ ] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[X] 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
[X] Prostate pain
[ ] 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)

Closing of the throat, pain in the chest, pain in the right leg

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

Not that much. I try zinc as from tomorrow.

15) 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)?

I made a test for prostate, but only 3 or 4 things were checked. It was normal.

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

/

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

OK. I’ve been off the drug for 2 weeks now.

First problem : I feel pain in my glans, in my penis, in my testiculars. It’s very annoying. And it does not seem to go away. I made an echography and the doctor found a varicocele. But the urologist said the pain was not due to that, he said it’s supposed to be rather nervous. So the doctor gave me 4 grams of doliprane to take as long as i feel the pain.

I think i still have my libido. I have every night erections. Not as strong as before I guess, but I do not know. At least I have those almost every night.

But when I try to masturbate to check if its ok, it’s so painful that i can’t concentrate on sex. I can get an erection, but it seems to be harder than before. I think pain doesnt help it.

It’s very painful, I dont know if the prostate is concerned because I dont know where it is. But it hurts me everywhere down there and in the pelvic area too. I can’t feel there the same as I used to feel.

I decided with the agreement of my doctor to try zinc treatment. My doctor says he’s not worried and that everything will be ok. For the pain he gave me doliprane 4mg/day.

Second problem : Closing of the throat, Pain in the chest. I saw a pneumologist for this issue. He gave me medication (solupred, becotide, xyzall) that helped me to feel better, but i still feel opressed. I see a specialist tomorrow, and if needed, i will get a camera in my throat to see what’s going on there.

Third problem : the sciatica, it came back. I went twice to the kine but the pain has not yet gone away. I’m a bit worried because the first time it went away very fast after 3 seances, but after 2 seances this time, the pain seems to be still there.

I’m worried about this stuff. But i’m not depressed. I knew there was risks before taking finpecia. I’m a man, and i will cope with the damage done, even if was far away from thinkink about such a thing.
I’m prepared to wait months before recovering.

But if it can come faster, it’s also ok :smiling_imp:

What would you advise me to do ?

I will be off my country for 4 weeks now, I think when I come back it will be time to see how it is. Maybe it will be time when I am back to make some deeper blood tests as recommended on this forum.
I have this zinc treatment, which I hope will be helpful.

Thanks for answers, if any.

#2

You need bloodtests as outlined on this site (Hormones section). You may find you have low T/DHT, or high Estrogens, or other imbalances which are causing you these issues post-Fin.

Pain in your penis could be a sign of fibrosis to the tissues due to lack of androgens (DHT) from Finasteride. Look through the studies in the Finasteride Studies (particularly androgen deprivation in the rat model)and also Sexual Side Effects sections for more info. Could also potentially be due to issues related to Prostatitis.

You may want to consider a doppler ultrasound of your penis to check bloodflow, as well as your testes. You should also try and rule out Peyronie’s Disease (fibrous plaques). Get your prostate checked out and check for Prostatitis, since Finasteride’s main mechanism of action is to reduce DHT and shrink the prostate… some guys have had issues with Prostatitis as a result.

#3

Also, try a short course of antibiotics just to make sure you dont come down with prostatitis, even if the doctor doesn’t think so and doesn’t get a positive test with a urine sample. Prostatitis sucks, and you dont want a chronic case of it (the pain, burning, discomfort, and urinary symptoms). Good luck man! Eat healthy, and LOTS of apples! And try to keep active, and your mind off of this, this is the best thing you can do, and hopefully you will return to normal within a few months like most people do.

#4

thank you very much for answers ! it is very important not to feel alone against these problems!

i’m off my country for the 4 following weeks. I will take zinc and try the brocoli treatment during this period (it cannot harms).

If everything stays the same after this period, i will do the whole blood tests that the site mentions, and really look forward to prostatis.

The others problems (difficulties of breathing, right leg pain) are annoying too, i dont know what to do, especially with breathing (i went to a few doctors but they told me everything was ok). Well, hope it will improve slowly but surely !

thank you again

#5

I’ve been off the drug for 23 days now.

I will have all the blood tests done when I come back to my country in about 4 weeks.

I have got the impression that everything stays the same now. I mean : day by day, no improvement, nothing worse.

I’ve got a few questions :

  • My pain in the balls, pelvic area and so on could be related to prostatitis. I already had an echography before but my prostate was ok. I got a urinary test, which was ok too. And at last my PSA was checked. Does that mean that i don’t have prostatitis? Or are those tests not enough?

The thing that I do not understand is that I have night erections almost every night. That is a good point. But I have difficulties to get hard as quick as before, even if i manage to get hard. Maybe because it hurts and this is psychological. I must add that I have no real ejaculation pleasure when I ejaculate, and the semence seems to be very little.

  • About my breathing problems. Could it be thyroid ? I absolutely do not understand this. I think I am the first one on this forum to have this problem. For me it is clear it is related to finasteride. It happened to me first 2 days after going back on fin.
    I’ve got the feeling of being oppressed and i have got intercostal pain.
    I went to a specialist of ear nose and throat who said me everything was ok. The lungs specialist said me everything was ok.
    I do not understand.

I also have the feeling it’s hard to concentrate and strange feeling in the vision, but not that annoying.

I think everything will get brighter when I get my blood tests done.
At least I hope, I’m tired of listening to doctors telling me “do not worry, everything is ok !”.

So, Mew, boston, or any specialist of the forum ? Could you help me on these two matters?

I really appreciate your support !

Last thing, I try to have healthy life. But on the other side, if I want to keep this out of my mind, I need to go out with my friends, and then drink.
Some said they recovered by having a healthy way of living.
Others said they recovered when they gave up all the regimen and so on.
This is confusing !

Debate?

#6

Dude, well I’ve gone back and forth about what i should do, sometimes I try to BE as healthy as possible, other times I slip up and drink coffee, and ice cream, and go out for drinking!

But as of now it keeps becoming more and more obvious to me. Every time I go out and party, or eat like shit or abuse my body, IT SETS ME BACK!

So, as of Thanksgiving weekend (last weekend) I have vowed to quit drinking, until I am completely better. And if that is a year from now, so be it. My sister is 26, and very successful and famous, yet she quit drinking about two years ago because she felt like she had a drinking problem, but she is very sociable and popular.

So this is what I’VE decided. I am going to try to become HEALTH DUDE. Maybe even get into yoga. I have been eating healthy for the last six months at least, but at least now I am not feeling bad about it any longer. I am 31 years old now and i dont need to be going out getting drunk every weekend anymore.

As for the prostate problems… Doctors cant really tell you for sure what up with your prostate. Its man/doctors biggest mystery, the prostate. If youy are having “prostatitis symptoms” you might as well take “a course” of antibiotics. Most tests for prostatitis come up negative, even when you have it. Unless its the short, very severe, Acute prostatitis form, which then shows up in a urine analysis, but not the chronic, slow onset, aching, burning, discomfort type.

Good luck man!!

#7

Little update on my case.

I finally went back to my country. I saw the doctor this morning.
As I feared, he did not believe me at all, and said finasteride had absolutely nothing to do with it.

He laughed at me when I asked for full hormonal tests, talked about prostatitis (he told me if I had it, I would wake up in the night to have a piss). I kept calm, because I expected it. Anyway, let us forget this “doctor”, I will certainly meet others like him

BUT,

I got from him to check those things :

  • Cholesterol
  • Triglycerides
  • Glycemie
  • TSH
  • FT4
  • Testosterone

I will move to Paris next Monday. I need to find a doctor to begin everything from zero. I guess I will have to deal with 4-5 (or maybe more) doctors who will tell me it is all in my head before finding one willing to help me.
Do you know means to find a good doctor/endo in Paris ? I know most of you are living in USA/Canda, but in case u know one… ? Any advice to convince a doctor to make full blood tests (otherwise I pay everything and I am still a student) ?

I would have liked to try Cipro to see if it improves prostate/groin/penis/pelvien pain, but sounds like it will be later.

I make the tests tomorrow, I will keep you updated !

#8

There is a Doctors section on this board, login and scroll down to access it. Here is an Endo search website, choose France from country list:

endo-society.org/apps/FindAnEndo2/

Also, Dr Minhas or Dr. Gould (both based in UK) may be someone to contact:
propeciahelp.com/forum/viewtopic.php?t=770
propeciahelp.com/forum/viewtopic.php?t=768

Dr. Thierry Hertoghe
antiageingconference.com/aac … rtoghe.htm

Don’t know if these guys have dealt with Finasteride patients before (I believe Minhas has) but may be worth a shot.

#9

Hi there,

As I’ve been off for more than 6 months now and still suffering from chest pain …

My blood work showed elevated estradiol & prolactin. But when I told my doctor that it could be linked with my chest pain, he answered me “I dont think estradiol nor prolactin can cause this”.

Is there any material that asserts it ? I searched on the site but did not find anything dealing with chest pain and its hormonal causes.

It’s very frustrating for me because I think it is obvious it is due to this (I also have slight gyno), but I’m waiting just because of stubborned doctors…

#10

You either need to:

a. find a new doctor that recognizes that elevated E2 and Prolactin can cause gynecomastia in men, or

b. print out the studies from this site regarding Fin causing gynecomastia due to altering the androgen/estrogen ratio in men, to bolster your case, to try and get them to prescribe something like Arimidex or Tamoxifen to lower E2, or a Dopamine agonist to bring down Prolactin.

Here is a post I made to another user in the same boat as you:
propeciahelp.com/forum/viewt … =3949#3949

More medical literature to backup your claims:

propeciahelp.com/forum/viewtopic.php?t=185
propeciahelp.com/forum/viewtopic.php?t=511 (2nd article)
propeciahelp.com/forum/viewtopic.php?t=200

eje-online.org/cgi/reprint/147/4/467.pdf
(this is in women but the MECHANISM OF ACTION IS WHAT’s IMPORTANT)

Comparison of high-dose finasteride (5 mg/day) versus low-dose finasteride (2.5 mg/day) in the treatment of hirsutism
European Journal of Endocrinology (2002) 147 467–471

“… The administration of finasteride is associated with a decrease in DHT and DHEAS levels and an increase in total testosterone levels (9, 11, 22, 24). In our previous study (10), we have shown that serum E2 and SHBG levels were increased and DHEAS levels were decreased significantly at 12 months.”

"… Inhibition of 5a-reductase by finasteride leads to an accumulation of testosterone which is converted to E2 by aromatase (27). It may account for higher levels of E2 after high-dose finasteride therapy."

#11

Thanks, Mew, these articles are intersting.

But actually my doctor does admit that I have gyno.

But what he does not admit is that elevated estradiol&prolactin can cause PAIN.

I was looking for material that asserts that elevated estradiol&prolactin can cause PAIN IN THE CHEST. Do you know scientific literature that say this ?

Thanks for helping me.

#12

Regarding pain, Merck’s own medical literature on Finasteride says this!

Print this out and highlight:

From their own PDF:
propecia.com/propecia/shared … nts/pi.pdf

PAGE 7
“Physicians should instruct their patients to promptly report any changes in their breasts such as lumps, pain or nipple discharge. Breast changes including breast enlargement, tenderness and neoplasm have been reported (see ADVERSE REACTIONS) .”

Website:
propecia.com/finasteride/pro … safety.jsp

"In postmarketing experience, the following adverse events have been reported: breast tenderness and enlargement; hypersensitivity reactions including rash, pruritus, urticaria, and swelling of the lips and face; and testicular pain."

Print this one out and shove it in his face.

Tamoxifen for flutamide/finasteride-induced gynecomastia
ncbi.nlm.nih.gov/sites/entre … d_RVDocSum

Staiman VR, Lowe FC.
Department of Urology, St. Luke’s-Roosevelt Hospital Center, New York, NY 10019, USA.

OBJECTIVES: Current therapies for advanced prostate carcinoma lead to a marked decrease in serum testosterone levels, which renders patients impotent. In preliminary studies, combination therapy with flutamide and finasteride has been used as an alternative therapy for the treatment of prostate carcinoma because potency can be preserved. Both of these agents can cause gynecomastia and breast/nipple tenderness.

METHODS: Six men being treated for advanced prostate carcinoma with flutamide/finasteride combination therapy developed painful gynecomastia, which was treated with tamoxifen 10 to 30 mg/day for 1 month. Clinical follow-up included breast measurements and determination of prostate-specific antigen (PSA), testosterone, and estradiol levels.

RESULTS: While on this combination therapy for prostate carcinoma, 4 of 6 patients experienced a decrease in PSA level to less than 0.5 ng/mL. All patients remained potent. Serum testosterone increased in each patient who had a baseline level drawn.

Estradiol levels were noted to be elevated in 4 of 6 patients at the time of evaluation for gynecomastia. After treatment with tamoxifen, circulating estradiol levels increased in 3 patients from 1.3 to 2.2 times the baseline level.

Five patients experienced complete resolution of breast and nipple pain on tamoxifen 10 mg/day within the first month. The other patient had to be treated with 30 mg/day for 1 additional month, which subsequently resulted in pain resolution.

CONCLUSIONS: These preliminary results suggest that low-dose tamoxifen is useful in treating painful gynecomastia for those patients on flutamide/finasteride combination therapy for advanced prostate carcinoma.

Tamoxifen Therapy for Painful Idiopathic Gynecomastia.
smajournalonline.com/pt/re/s … 29!8091!-1

Southern Medical Journal. 83(11):1283-1285, November 1990.
McDERMOTT, MICHAEL T. MD; HOFELDT, FRED D. MD; KIDD, GERALD S. MD

Abstract:

We have evaluated the efficacy of the antiestrogen tamoxifen in six men with painful idiopathic gynecomastia. Subjects were given either tamoxifen or placebo for 2 to 4 months and then were given the other agent for an identical period. Breast size was considered to have been reduced only if it had decreased by one or more Marshall-Tanner stages during the treatment period.

Pain reduction with tamoxifen therapy was statistically significant for the group, occurring in five of six subjects during tamoxifen treatment and in only one of six during the placebo period. Size reduction with tamoxifen was only marginally significant for the entire group, but occurred in all three subjects who were initially in Marshall-Tanner stage III and in none of the three subjects who were initially in stage V.

During tamoxifen treatment, there was a significant increase in the serum levels of luteinizing hormone and total estradiol and a marginally significant increment in the total testosterone level.

© 1990 Southern Medical Association

Arimidex:

Safety and Efficacy of Anastrozole for the Treatment of Pubertal Gynecomastia: A Randomized, Double-Blind, Placebo-Controlled Trial
jcem.endojournals.org/cgi/content/full/89/9/4428

"…Pubertal gynecomastia can interfere with normal daily activities and be associated with marked breast pain or tenderness that may necessitate pharmacological or surgical treatment. "

“…However, in two randomized, placebo-controlled, cross-over trials of adults with gynecomastia, treatment with the selective estrogen receptor modulator tamoxifen (10 mg twice daily) reduced breast pain and breast tissue size compared with placebo treatment without adverse effects”

"…The number of patients reporting breast pain (tenderness) decreased from 11 at baseline to one after 6 months of treatment with anastrozole (1 mg) and from nine at baseline to zero after 6 months of treatment with placebo. "

"…Furthermore, the number of patients with breast pain (tenderness) at 6 months was markedly reduced for both treatment groups. The difference between the two treatment groups in the median percent change in the T/E ratio reflected the pharmacodynamic activity of anastrozole (1 mg). "

"…In a randomized, placebo-controlled study, treatment with tamoxifen (20 mg daily) or anastrozole (1 mg daily) was evaluated for the prevention of bicalutamide-induced gynecomastia/breast pain, as assessed by physical examination, in 93 men with prostate cancer (43). Patients receiving tamoxifen had a significantly reduced risk of gynecomastia/breast pain after 3 months of treatment compared with those receiving placebo (relative risk, 0.35; 95% CI, 0.13–0.83; P < 0.0001), whereas the risk of gynecomastia/breast pain for patients receiving anastrozole was not significantly different from that of placebo-treated patients. These results together with the results of the present study and studies of tamoxifen therapy in patients with gynecomastia (14, 15, 17, 18, 19, 21) suggest that selective estrogen receptor modulators may be the pharmacological treatment of choice for most patients with gynecomastia. "

I’ll leave it to you to do some more googling on Google Scholar if you want.

scholar.google.ca

keywords = gynecomastia pain

#13

Thanks Mew…

If he does not contemplate the fact that my pain may be due to elevated estrogen, I never go back to his office.

#14

The meeting with my doc was just great.

I printed the links of Mew and showed it to him. He is willing to try tamoxifen in a near future and he believes me entirely, even if he finds the whole thing strange.

But as he said, nature is not an exact science, so everything can happen.
He also gave me an appointment with a good endo of Paris, who is supposed to be very open minded like him, and will maybe tell me more about this.

Anyway, I’m glad to have found this doc. I feel no longer alone about this fin-mess. I have to finish the 1-month cycle of Rivotril (an drug that make me get better sleep) and if no improvements, i think i will try tamoxifen. At least it should reduce my chest pain.

By the way, as I had both elevated estradiol & prolactin : is tamoxifen engough or do I need tamoxigen & dostinex ? If anybody has an idea…

#15

Great news, hopefully the endo will be willing to help investigate things further.

Tamoxifen may have an effect on Prolactin… but if not, you’d probably need a Dopamine agonist like Bromocriptine or Cabergoline.

content.karger.com/ProdukteDB/pr … 123324.pdf

blackwell-synergy.com/doi/ab … .tb10467.x

joe.endocrinology-journals.org/c … t/86/1/109

Keep us posted.

#16

I’m no doctor, but I would try tamoxifen only at least first.

#17

I’m not a native speaker, but I dont get the sense of that sentence.

If you mean that tamoxifen is dangerous and should be taken at last resort, well I know… but what other options do I have?

#18

I think he meant:

Try the Tamoxifen first. If no change in Prolactin, try Dopamine agonist after Tamox treatment is completed.

#19

That was what I meant.

#20

Little update.

Problem with my appointment with this endo : the appointment is end of september. So long to wait…

However, my GP agrees to try tamoxifen before if I feel very bad. And I feel very frustrated to wait so long… in september it will be 1 YEAR since all this has begun, with no real improvements…

So I think I will try to convince him to try tamoxifen.

What dose ?

I read on some posts that a common treatment is to begin with big amounts and quit while reducing the dose.

I think he would like to try 10 mg / day first. And this treatment seems to have worked already. (see this link given by Mew : ncbi.nlm.nih.gov/sites/en…ubmed_RVDocSum )

I wonder if high estradiol can be linked with pelvic pain… I would be very happy if tamoxifen could solve my chest pain and pelvic pain along together.

See this link ( propeciahelp.com/forum/viewtopic.php?t=1476 ) where I found two sites talking about this. But maybe it’s not the reason, how can I know…

I’ve taken DIM for 10 days and the first 4 or 5 days I felt for the first time GREAT : no itchy nipples, no chest pain… but sadly, the pain came back after…
Well at least it makes me belive there is really a estradiol problem.

I hope it wont make the same with tamoxifen. (I mean : first it would work and then the good effects disappear)

Last thing : when I’m cold, my nipples come back to normal size and are not swollend anymore. Does it mean that I can hope to have my nipples back to normal without surgery ?

Well it was just an update. I hope one day all this will finish cause its a nightmare…

If anybody can help me on these points :

  1. what treatment with tamoxifen ?
  2. prostatitis and high estradiol
  3. the fact that DIM worked a while and now not.
  4. nipples back to normal when I am cold : what to think?

Thanks, I will keep you updated.