My Husband's Story

Member Stories
#1

I’m posting for my husband who can’t stand reading this site because there seems to be no cure or program for relief right now. He’s in bad shape. He was a healthy guy. Never needed to go to a Doctor. I’ve been with him for 18 years so I knew the Pre-Procecia guy and have witnessed the horrible changes over the years. He was on Propecia for 13 YEARS!!! Longer than any other man I could find on this site. He lost vision for a few minutes in his right eye in September 2010. He immediately stopped the Propecia (which was the only thing he ever took). After loosing vision he went to his Dr. and a series of tests revealed: high red blood cells, extremely high cortisol (153), heart enlargement, central sleep apnea and high blood pressure and an endocrine/hormone crash, including testosterone, FSH and LH within weeks of stopping the Propecia. he still suffers from blurry vision on occasion, has debilitating waves of anxiety and can not properly function any more. He fears going to sleep at night because strange things happen. They put him on Clonipan for sleep, so he takes a quarter to half of a pill at night. 16 months later, his testosterone is 244. Still not on the range scale. He’s really suffering and feels hopeless. Not sure what to do or where to go. I would do anything to help him at this point.

I answered all the questions below based on his medical stats.

  1. Where are you from (country)? USA

  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?) Symptom Searches

  3. What is your current age, height, weight? 40yrs, 5’ 9 1/2", 190lbs

  4. Do you excercise regularly? If so, what type of excercise? Yes - Cardo and weigh training

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

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

  7. For how long did you take Finasteride (weeks/months/years)? 13 Years (1997-2010)

  8. How old were you, and WHEN (date) did you start Finasteride? 26years - 1997

  9. How old were you when you quit, and WHEN (date) did you quit? 39years - 9/10/2010

  10. How did you quit (cold turkey or taper off)? Cold Turkey

  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.)? 1mg/day

  13. How long into your use of Finasteride did you notice the onset of side effects? Felt symptoms creeping up for a few years.

  14. What side effects did you experience while on the drug that have yet to resolve since discontinuation? No morning erection, anxious, low libido.

Put an X beside all that apply:

Sexual
[x ] Loss of Libido / Sex Drive
[ ] Erectile Dysfunction
[ ] Complete Impotence
[x ] Loss of Morning Erections
[x ] Loss of Spontaneous Erections
[x ] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[x ] Reduced Ejaculate
[ ] 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
[ ] Slurring of Speech
[x ] Lack of Motivation / Feeling Passive / Complacency
[x ] Extreme Anxiety / Panic Attacks
[x ] Depression / Melancholy

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

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

[x ] Other (please explain)
endocrine system crash
Central Sleep apnea
limb twitching
high blood pressure
heart enlargement
periouds of extrememly high cortisol
High red blood cell count

  1. What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug? Numerous doctors and at least 50 tests.

  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.

#2

It sounds as though finasteride has really done some damage to your husband - it shows just how destructive this stuff is. At least he has some diagnosis, which is more than many on this forum can get. I too dread going to sleep at night because i always wake up and very strange things happen to me.

Best wishes to you and your husband

#3

go immediately to an ophtalmologist

[Size=4]Finasteride-associated cataract and intraoperative floppy-iris syndrome.[/size]

A 47-year-old man who had been using finasteride for male pattern alopecia for 4 years complained of progressive bilateral blurring of vision. His general health had been good, and he was not on any other long-term medication. Examination showed bilateral anterior subcapsular cataracts. Phacoemulsification and insertion of intraocular lenses were performed, and both eyes showed features of intraoperative floppy-iris syndrome (IFIS), including undulation and billowing of the iris, iris prolapse, and pupil constriction. We believe the use of finasteride can be associated with cataract formation and IFIS. Ophthalmologists and physicians prescribing finasteride should be aware of this possible association

ncbi.nlm.nih.gov/pubmed/21555201

[Size=4]Intraoperative floppy-iris syndrome and finasteride intake.[/size]
Issa SA, Dagres E.
Department of Ophthalmology, James Cook University Hospital, Middlesbrough, Cleveland TS4 3BW, United Kingdom.
Abstract
We report 2 male patients who had bilateral cataract surgery. Both patients had features of the intraoperative floppy-iris syndrome (IFIS) in both eyes, and both were taking oral finasteride for the management of benign prostatic hyperplasia (BPH). We conclude that finasteride can be associated with IFIS, so it is important to take detailed medical histories of patients having cataract surgery, paying attention to a history of BPH and its treatment.
ncbi.nlm.nih.gov/pubmed/18053919

[Size=4]Propecia-associated bilateral cataract.
[/size]Chou SY, Kao SC, Hsu WM.
Abstract
A 43-year-old man presented suffering from decreasing vision in both eyes for 3 months. The patient’s visual acuity was 6/20 (non-corrected) in the right eye and 6/10 (-1.75/-1.00 x 91) in the left. Ocular examination of both eyes revealed anterior subcapsular opacities of both lenses with the right eye being more severe than the left. He had been taking finasteride (Propecia; Merck, Sharp and Dohme) at 1 mg/day for 3 years to treat early stage of androgenic alopecia. It was highly suspected that finasteride was associated with the anterior subcapsular opacity on the lens, and the patient therefore discontinued use of finasteride. He underwent uneventful cataract extraction surgery and intraocular lens implantation of the right eye. One month after cataract surgery in the right eye, the best-corrected visual acuity was right 6/6 (-1.25) and left 6/10 (-2.00/-0.50 x 100). To the best of the authors’ knowledge, this is the first reported case of Propecia-associated cataract.
ncbi.nlm.nih.gov/pubmed/14746605

#4

I also took the drug for that amount of time. Some people have only taken a few pills and are in the same boat. This pill sucks. I am in a lawsuit right now but I know no money will effect these companies, I just want the money to fund my recovery.

#5

Your post says your from New Jersey. Go see Dr. Eugen Shippen in Shillington PA. He is understanding and probably can provide him with some relief. Just hearing from a sympathic doctor will help him mentally a great deal. He follows the PFS syndrome among us and will prescribe some meds that will help. IF you call make sure you tell them its about PFS or else they won’t take on new patients.

#6

Thanks everyone for responding! What a nightmare this is! I’m glad to have found the support. I once looked for a site for spouses of men who were going through this and clearly, I came up empty handed. Maybe I should start one. It’s absolutely horrific for my husband to be going through this and it has also taken a significant toll on me as well. At least here I feel like there’s a ton of support and I feel like I’m doing something for him by educating myself and connecting with people who are trying to work through this. So thank you all!

Bluecloud87 – He has no diagnosis. Everything the different doctors have uncovered so far (i.e., enlarged heart, high red blood cells, sleep apnea, hypertension, severe reflux, hormonal issues, etc.) are said to be secondary to ‘something else’. We’ve been searching for the primary issue for 16 months and have come up empty handed. He’s been scanned, prodded, analyzed, etc. every which way and the Primary cause is still not diagnosed. I would love to know what kind of strange things you experience at night to compare notes to my husband’s. He has sensations that JOLT him awake (separate from the apnea) that makes him feel like he must be dying or close to it. He has shaking in his body sometimes at night. Sometimes intense pressure in his head. Sometimes he just stays up all night either sweating or shivering… he fears going to sleep. It Sux!

Prop – thanks for the info. He’s been to two ophthalmologists and so far, all is well. Our sister-in-law is an ophthalmologist so I will send her this info and make sure she keeps an eye on this stuff when she examines him next.

Gazzaa – I can’t believe you were on it as long as my husband. Are your symptoms similar? How long have you been off it?

Fina13 – Thanks for the nod for Dr. Shippen. He’s on my list to call this week. Just wanted to do some more research on him before we drive 2.5 hours away to a doctor.

Youngbuck21 – My husband never took Viagra or any other pharmaceutical (aside from the occasional Z-Pak). It looks like the Sleep apnea he experienced was caused by ‘silent reflux’ which developed after stopping the Propecia. He’s been on Nexium and as of his last Sleep study 2 months ago, his apnea is significantly improved which is good. But where the reflux came from, who the hell knows. Interesting about the Clonopin.

#7

Also,
Anyone have problems with the palms of their hands? My husband has reddish/bluish/purpleish palms all the time. The veins in his hands are quite prominent and the skin on his Palms is thin and translucent. His dr said that his palms are thin skinned and veiny like a woman’s hand.

What is this? Anyone else with this symptom?

Thanks!

#8

weak hands, feet etc are probably because of low androgen. Many share this condition, usually after stopping the drug.

#9

I have this issue as well – palms are constantly red.

Also have this, as well as on top of hands – thin bony fingers, thin skin and can easily see tendons showing through (especially when pulling fingers back).

Considering the other feminine body changes I’ve experienced while on/since drug (gynecomastia, feminine body fat redistribution to buttocks & thighs, loss of muscle in forearms /wrists/legs) it doesn’t surprise me. Drug is known to elevate estrogen levels in men (feminizing effects) and disrupt the androgen/estrogen ratio to be in favor of estrogen.

Did your husband get tested for Estradiol (ultrasensitive test), Estriol, Estrone & Total Estrogens, as well as Prolactin and TSH? If not, he should.

#10

I also have the thin skin on the hands, no red palms but sometimes I can see the veins there too. This happened very quickly post crash for me, I even remember a girl remarking on my hands’ thin skin just a few weeks after I stopped. I have very low but within range T which as sps says is the likely cause, or rather my body’s unrespsonsiveness to any level of testosterone.

I also seem to have very poor circulation in my hands and feet, which are both now very dry and pale. I suspected anemia, as did my doctor, although I have no other anemic symptoms. Nonetheless, anemia is a symptom associated with androgen deprivation (viewtopic.php?f=1&t=5292) so it wouldn’t be surprising.

#11

If you really want to help your dear husband then create awareness.

Write to news papers, tv etc
contact LAbs and university hospitals and bring to their notice, mention propeciahelp.com for more detail.
Untill a lab or research hospital conducts research chances are very slim for our treatment or cure.
this site is good to know the cause of the problem but no help for cure or treatment.

#12

I was reading about red palms yesterday (I don’t have this) when looking up liver problems. It’s strongly connected to liver disease.

#13

which liver disease? cirrhosis?
So far not a single confirmed report for liver damage here.

#14

Just google red palms liver, plenty on there.

#15

Thank you for sharing your story. There are NOT ANY on this site who have used the drog long-term (10+ years) with the exception of a couple.
I am one of them - I too like your husband was on it for 13 years since it was released. So that leads us to another BIG important question: Since almost ALL the men on this site seem to have gotten this syndrome early on (or they at least had side-effects almost immediately when they began the medicine - hardly any that I have read did well on the drug and then ONLY years later had problems), what happened to guys like me and your husband who used it for so long without any side-effects. Again, almost all those with this condition had side-effects from the beginning (thus - probably why they were not on the drug for such a long time).
Did YOUR husband have side-effects early on (the years he was taking the drug) or only after he quit? Or was he COMPLETELY side-effect free until the icident where this syndrom struck him? Any sexual side-effects AT ALL through the years?

These are VERY severe side-effects that struck him - losing vision!! heart problems!!! Do the doctors think this could have anything to do with the propecia? I ask because I just wonder with these effects (which don’t seem to correspond with the typical post finasteride syndrom) maybe there was another underlying medical condition that suddenly reared up?

I do have to say that I have had blurry vision, only since stopping the drug!! Very bizarre because my vision was perfect the 13 years I took it.

You are brave for coming on here and tell your husband he is not alone - and show him much patience and love through this (which it sounds like you are already doing) :slight_smile:

#16

Let your husband know he’s not alone… I started in '98 and stopped last July. I had side effects but was conned by my M.D.'s they were just aging and to pop some viagra… starting at 40. I’ve been in a fog, alone most of the past 10 years.

#17

When did your husband start having bad side effects??

#18

Hi,
I posted back in February with my husband’s story. http://www.propeciahelp.com/forum/viewtopic.php?f=3&t=6024
This was the basics:
"I’m posting for my husband who can’t stand reading this site because there seems to be no cure or program for relief right now. He’s in bad shape. He was a healthy guy. Never needed to go to a Doctor. I’ve been with him for 18 years so I knew the Pre-Procecia guy and have witnessed the horrible changes over the years. He was on Propecia for 13 YEARS!!! Longer than any other man I could find on this site. He lost vision for a few minutes in his right eye in September 2010. He immediately stopped the Propecia (which was the only thing he ever took). After loosing vision he went to his Dr. and a series of tests revealed: high red blood cells, extremely high cortisol (153), heart enlargement, central sleep apnea and high blood pressure and an endocrine/hormone crash, including testosterone, FSH and LH within weeks of stopping the Propecia. he still suffers from blurry vision on occasion, has debilitating waves of anxiety and can not properly function any more. He fears going to sleep at night because strange things happen. They put him on Clonipan for sleep, so he takes a quarter to half of a pill at night. 16 months later, his testosterone is 244. Still not on the range scale. He’s really suffering and feels hopeless. Not sure what to do or where to go. I would do anything to help him at this point. "

Since that post, he discontinued the Klonipan. We also found out that the hear enlargement was most likely due to a coxackie infection that he caught from our child. So I’m not longer worried about that as an issue related to Propecia - but I believe in my heart that most of his other issues are, in fact, related to the drug.

So, it’s now been 22 months since stopping the Propecia. His biggest issues now are gastrointestinal (silent reflux/LPR - which is a condition where the stomach acid backs up to his mouth and burns the mouth and throat), apnea (suffocates and shakes in his sleep), and muscle weakness/ache (he feels like he could rip his muscles from the bone). The apnea and the gastro stuff are probably related. He often has the sensation of acid flooding and then burning his throat. DOES ANYONE HAVE SEVERE GASTRO OR APNEA ISSUES? He has the brain fog/forgetfullness frequently.
I want to know if I am on the right track with Propecia. He’s had weeks where he hasn’t suffered terribly (partial recovery periods), but then all of a sudden, it comes back with a vengeance. (And when one happens, the other things happen).

Also, he’s been to several gastro Drs. He’s on Nexium and Zantac. Medications are no longer helping.

He hasn’t had his hormones tested in about 6 months so I have no idea where they are right now. Last we knew, his testosterone was still so low, it was not even on the chart.

Thanks for any help, advice, thoughts!

#19

This is a prime area for treatment if the case. Many of his issues may be related to hormonal problems, and here you have a clear diagnosis of hypogonadal Testosterone levels which can be treated. I would investigate this area first and foremost.

On another note some men have reported digestive issues and sleep problems while on/after quitting the drug, so there may be a connection there. Considering the fact the drug messes with Nitric Oxide production and GABA-A receptors in the brain, both of which are implicated in sleep/wakefulness and REM sleep, it is not implausible. Many find their sleep issues tend to start improving after 2-3 years off drug so hopefully he will find same. If it’s still a problem, suggest he go for a sleep study to be evaluated further.

#20

I also have digestive issues and sleep issues now over two years off the medication.

May I ask if you concieved your child while he was taking Finasteride and if the child is male if all appears normal? There have been cases where male offspring of Fin uses have reported smaller genitles.

There are some research projects underway as you may know and there is hope for getting some answers. I’ve heard of serveral cases of long term relationships and marriages ending due to PFS. Sticking with him and helping him search for answers speaks volumes about your character.

Best of luck.