New Propeciahelp Member, Another Propecia Victim

Member Stories
#1

  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?) Google Search, “Propecia Side Effects”

  3. What is your current age, height, weight? Age 25, Height 6’3", Weight 213 lbs

  4. Do you excercise regularly? If so, what type of excercise? Yes. Running, Rowing, and Free Weights (gym)

  5. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)? Meat eater (cooked meat only). Try to eat as healthy as possible, but do not shop for “organic foods”

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

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

  8. How old were you, and WHEN (date) did you start Finasteride? Started Propecia at age 24, on January 22nd, 2010

  9. How old were you when you quit, and WHEN (date) did you quit? Quit at age 24, on February 26th, 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, name brand for first week (free sample from dermatologist). Generic for last four weeks (no detectable difference between usage of name brand and usage of generic; it wasn’t “bad finasteride” that did this to me).

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

  13. How long into your use of Finasteride did you notice the onset of side effects? Within 20 minutes to an hour (brain fog, confusion; it seems to have attacked my mind first)

  14. What side effects did you experience while on the drug that have yet to resolve since discontinuation? Basically all of them. Some have improved in severity, while others haven’t improved at all - but they are all still there at some level.

Put an X beside all that apply:

Sexual
[x] Loss of Libido / Sex Drive Zero libido; I don’t even look at women anymore
[x] Erectile Dysfunction
[ ] Complete Impotence Still can obtain an erection, but it will snap back to a flaccid state if intense stimulation is not continued
[x] Loss of Morning Erections
[x] Loss of Spontaneous Erections
[x] Loss of Nocturnal Erections
[x] Watery Ejaculate
[x] Reduced Ejaculate
[??] Inability to Ejaculate / Orgasm I have decreased orgasm; not zero orgasm
[??] Reduced Sperm Count / Motility Don’t know; didn’t have it tested yet

Mental
[x] Emotional Blunting / Emotionally Flat
[x] Difficulty Focusing / Concentrating
[x] Confusion
[x] Memory Loss / Forgetfullness
[x] Stumbling over Words / Losing Train of Thought
[x] 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 I have a dent in the shalf of my penis just below the head of my penis; this wasn’t there before Propecia, but it didn’t form after starting Propecia either - it appeared about six months after quitting Propecia
[x] Testicular Pain
[x] Testicular Shrinkage / Loss of Fullness
[x] Genital numbness / sensitivity decrease
[??] Weight Gain My body weight actually decreased from 222 lbs (average for prior five years), to 210-212 lbs; but, I gained alot of body fat simultaneously (my net body weight decreased because of loss of muscle mass, especially in my upper body - probably lost 20-30 lbs of muscle mass overall)
[x] Gynecomastia (male breasts) I’m told by doctors this is actually “pseudogynecomastia”; I don’t have real breast tissue, but it appears this way because of the amount of body fat that has accumulated there
[x] Muscle Wastage Big time
[x] Muscle Weakness What’s left of my muscle mass doesn’t work as efficiently as it would have before Propecia
[x] Joint Pain I feel stiff in my leg joints and hips; I kinda walk around like an old man to a certain extent
[x] Dry / Dark Circles under eyes Yes, but with the caveat that I already had this before Propecia - I don’t think Propecia made it worse; I work in a high-stress industry for a high-stress company, and that has done more to age my face than anything else. My dark circles are basically bruising/edema from sleep loss/lack of sleep, in my opinion.

Misc
[x] Prostate pain Anal/rectal pain, testicular pain, penis pain
[x] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[??] Vision - Acuity Decrease / Blurriness Yes, but I think could more easily be a side effect of the sleep loss, depression, and anxiety, etc, than Propecia directly - though of course I realize that the sleep loss, depression, and anxiety have been caused by the Propecia. I also had floaters appear in my left eye around the time I started and quit Propecia, and they haven’t disappeared since that time - they’re all still there, and they’re in my left eye only.
[??] Increased hair loss Hair loss seems to have stabilized since quitting Propecia. After starting Propecia my rate of hair loss actually seemed to increase, but after quitting a bit of it grew back, and it stabilized at that level of hair loss. I know I was on course to get the same baldness pattern as my father, but now it seems like the hairloss has stopped halfway there - I still have thin coverage everywhere on top of my head, but no outright bald spots of bare skin. A few months after quitting I also started using Rogaine and this has helped a bit too.
[ ] Frequent urination
[x] Lowered body temperature I wore a jacket all summer long in Southern California
[x] Other (please explain) Please see my other posts; I’m including copies of the same text/documentation that I’ve been posting in other forums and also submitted to doctors with whom I’ve sought treatment.

  1. What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug? Clomid (50 mg twice a week), Cabergoline (0.5 mg twice a week), Arimidex (1 mg twice a week)

  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)? I didn’t have blood tests taken before taking Propecia, or while I was on Propecia - I was told by my doctor that I didn’t need to have blood tests. I did have several tests conducted after quitting, however, and these confirmed low testosterone (bio available, free, and total), low DHT, low LH, low FSH, and elevated prolactin. My TSH is borderline hypothyroid, but looking back at older bloodwork I had done the prior year, my TSH was already towards the higher end of the range so maybe my TSH was always like this - can’t really be sure about this one either way.

  3. Anything not listed in the above questions you’d like to share about your experience with Finasteride? Ruined my life, period. Worst mistake I’ve made in my entire life, hands down - nothing else in my life comes close.

  4. Tell us your story, in your own words, about your Finasteride usage and side effects experienced while on/off the drug. See my next post (this text/document I’ve posted on other sites, and have also submitted to doctors).

2 Likes
#2

I was a healthy and athletic 24 year old man (no chronic health problems or psychological issues whatsoever) who began taking Propecia for the treatment of hair loss early in the afternoon on January 22nd, 2010, and almost immediately began to experience the onset of symptoms that included brain fog, confusion, and depressed behavior. The next day, I woke up with a plethora of very noticeable sexual side effects, and from there, began to feel progressively weaker physically, mentally, sexually, and emotionally over the course of the next 4-5 days (the most intense drop was during the first couple of days).

After the first 4-5 days, I seemed to stabilize at this low point; but, after a couple more weeks had past, it became obvious beyond argument that my chest and shoulders were softening and descending considerably and that they were wasting away at a precipitous rate (and so were the rest of the muscles in my body). At that point, it was only a matter of time before I quit the drug because the severe declines I’d experienced grossly outweighed any benefits I would have gained even if I had entirely re-grown all of my hair. Putting all of the physical, mental, sexual, and emotional performance issues aside, just the cosmetic trade alone of the poor appearance of my body for the benefit of a full head of hair was completely unacceptable.

Despite all of these issues, I continued to take the drug anyways, partially in the hope that I would adjust to the drug and the symptoms would alleviate (per the manufacturer’s suggestion), and partially because I was curious to see if the drug would actually do something positive and grow hair on my scalp; but, after two additional weeks, the depression and anxiety and the physical, mental, and sexual performance deficiencies got to be too much to bear as the quality of my life continued to deteriorate until it finally reached the point where it was just impossible to tolerate living like that anymore. I had been pushed to the absolute limits of my psychological and emotional endurance.

Clearly, I had to stop taking the drug, which I did discontinue on February 26th, 2010, fully and excitedly expecting that all of the side effects would completely subside within a few days and that I would be back to the way I was before, but the side effects did not alleviate. Outside of a reduction in the most extreme psychological issues (brain fog and depression), and a minor (~<5%) physical performance bounce, I continued living with basically the same physical, mental, sexual, and emotional performance deficiencies that I had while I was on the drug.

Several of the side effects began within minutes to hours of beginning the drug, while the others took a bit more time to develop (from days to weeks to months) depending on the problem. The issues listed below are presently ongoing, with varying degrees of severity with respect to my condition while I was still taking Propecia, and some also with varying degrees of severity during the time period since discontinuing the drug, accounting for the severely reduced quality of life that I’ve been left with since ending the use of Propecia:

Problems that mitigated after quitting (within a few days):

• Depression (directly induced by the drug; still have a large element of depression present in my life)
• Brain fog, confusion (still have serious mental acuity issues, though not quite as severe as before)

Problems continuing after quitting on February 26th:

• Loss of libido

Essentially zero libido; complete absence of any sexual desire towards women, never “horny”
No sexual thoughts or fantasies at all; no sexual pressures, thus no drive to release any sexual pressure
Little or no response to sexual stimuli; no arousal from sexual images, or even from sexual types of contact
Apparent loss of sexual dreams during sleep; my dreaming activity is very hollow and empty
• Erectile dysfunction

Difficult to obtain erections, difficult to maintain, doesn’t get as big or hard, goes away very quickly
Loss of spontaneous erections and associated arousal (i.e. random arousal while at work, watching TV, etc)
Loss of nocturnal/morning erections; difficulty sleeping due to lack of nocturnal erections and sexual dreams
• Changes in my penis

Flaccid penis is shorter and narrower than before; erect penis is also shorter and narrower than before
Tissue changes; feels like large rubber band constricting it, and a general “stiffness” of flaccid penis
Penis is colder; reduced blood flow to the penis (head of penis now blue/white, not flush pink as before)
Loss of sensitivity, especially for pleasurable touching; rubbery feeling, head of penis is cold and clammy
Tendency of penis to retract into body; often have a “just swimming in cold water” appearance to penis
Attachment seems different, urination feels different, penis doesn’t feel like it’s entirely mine anymore
• Changes in my testicles and scrotum

Reduction in size of testicles and scrotum; loss of scrotum fullness, sensation of overall emptiness
Scrotum and testicles always feel colder than before; reduced blood flow to entire genital region
Loss of sensitivity, especially for pleasurable touching; entire package has a dead, rubbery feeling
• Overall sense of detachment from my genitals
• Reduced quality of orgasm and ejaculation

Reduced volume and quality of ejaculate (now like clear “spit”, than off-white “cream” as before)
Reduced ejaculation velocity (used to shoot out from my penis; now just runs out the end of my penis)
Reduced pleasure from orgasm experience; “just happens”, no real blast or sense of satisfaction at all
Some semen fluid begins to run out from my penis before I achieve the orgasm (like a runny nose)
Only feel able to do it once a day at most; used to be easily capable and eager to do it again within an hour
• Muscle loss & body fat increase

Massive loss of body strength and muscle mass (legs, thighs, arms, shoulders, chest, back, abdomen)
Upper body strength has been especially impacted (including abdomen and lower back)
Chest and shoulders have been noticeably reduced in mass, and have descended to a lower position
Daily gym visitation does not help; my body is not responsive to the strength training, it only makes me ache
Body fat under my nipples and across my chest; increased amount of body fat in atypical places
Accumulation of layer of body fat covering the rest of my body, but especially around my waist
Overall reduction of body density throughout entire body; softer, less lean muscles; loss of muscle tone
• Fatigue

Quickly run out of breath during aerobic exercise; cannot run, bike, swim, or row nearly as well as before
Routine aerobic exercise doesn’t improve my performance; it just makes me ache for several days afterword
Trouble finding the energy to get organized, work, have fun, be productive, and perform routine chores
Always tired, and get exhausted quickly; I simply cannot “go the distance” like I could in the past
Effective workday reduced; used to be able to work > 12 hours no problem, now get tired in under half a day
• Suspected loss of bone mass and shrinkage of my skeleton

My shoulders don’t feel as broad, and I don’t feel as tall as I used to feel; sensation of shrinkage of my body
The supporting structure for my chest and shoulders seems to have shrunk and repositioned
I feel much smaller in all regards; my skeleton feels thin, weak, and lanky in comparison to the past
• Pain

Testicular pain; aching sensations during the day, and also more sensitive to uncomfortable touching
Aching of muscles and joints and lack of mobility (including upper body, arms and shoulders)
Difficulty recovering from exercise; always sore for days, and never feel like my body has been “broken in”
• Cold intolerance; my body feels cold and I easily get a chill (I wore a jacket all summer long)
• Memory problems

Severe memory impairment, especially short term memory; have totally forgotten past lessons-learned
Constant forgetfulness, blanking out; daily schedule changes are problematic, I may forget where I should be
Often forget to attend meetings at work, and cannot recall the events and results of meetings
• Cognition impairment

Severely diminished acuity and comprehension; hard to understand and solve even simple problems
Slowed thought processes, difficulty processing information; tough to get organized and get the job done
Difficulty paying attention to conversations; inattentiveness, difficulty focusing on events and concentrating
• Speech impacted

Have a tendency to slur speech and mumble; tend to revert to grunts and other means of communicating
Impaired ability to choose words, form complicated sentences, and speak as eloquently as I could in the past
• Sleep problems

Do not sleep as well as I used to sleep; rarely dream, never have any sexual dreams, wake frequently
Poor benefit from sleep; even though in bed for sufficient time, often have trouble starting the next day
I do not have a regular sleep routine; I often oversleep > 10 hours, and also often under-sleep < 5 hours
Now sleep partially clothed (used to sleep nude); lack of nocturnal erections/cold penis wakes me at night
• Emotional changes

Emotional detachment and blunting, overall flatness to my personality, total carelessness
Basic emotions play less of a role in my life; reduced feelings of empathy, compassion, caring, etc
Frequently moody, frustrated, and irritable; I feel like I am on a hair-trigger to fight or argue
Sense of pleasure and enjoyment has been completely stripped from my life
Non-sexual activities have lost their appeal as well (playing tennis, walking on the beach, TV watching, etc)
I have completely isolated myself socially; social activities with friends are now a chore, so I don’t do them
• Drive and motivation changes

Complete loss of career motivation and personal ambition; have lost the ability and desire to thrive in life
Very subdued behavior in comparison to the past (no longer outgoing at all; now very reclusive and shy)
Intimidated by attractive women; feel inclined to hide or avoid them, instead of pursuing them like before
I feel very passive, fragile, and vulnerable (I feel like an easy target to be pushed around by other men)
Not really sure what I should now do with the rest of my life; there doesn’t seem to be a plan anymore, or any reason to pursue one; I am basically left totally sidelined in life, my life is in limbo waiting for a recovery
• Increased levels of anxiety in my day to day life; sometimes suffer from feelings of confinement and hotness
• Depression is a persistent problem; more vulnerable to feelings of sadness and hopelessness, unhappy with myself
• Overall sense of weakness; less robust, and general feeling of increased vulnerability to illnesses and getting sick

Recently appearing issues (these began in early August, 2010):

• Dent in my penis (noticed it in the shower about a week after last trying Levitra; had tried Levitra a few times beginning mid-July to help with sexual performance deficiencies)

Suspect it may have been a result of Levitra usage, but am not sure it wasn’t already there earlier
Definitely did not exist prior to Propecia; and, believe it didn’t form for months after quitting
Levitra did not help out with sexual dysfunction issues at all, didn’t address the root cause of problem
• Pains in penis

Burning sensations near the head of my penis; I tend to associate these with the appearance of the dent
“Pins and needles” sensations throughout my penis; began later than dent, don’t think these are associated
Pains in penis more prevalent and likely to occur after attempting sexual activity, erection, orgasm, etc
• Shooting testicular pain (rear of testicles, into body); intense and momentary attacks of pain
• Pain and aching sensations in the anal area of my body

Pain seems to come from inside me, varying in depth into body; feels like my anus/rectum is the source
• Periodic muscle spasms in my pelvic/bladder region; directly between belt and penis, under the skin into my body

Recently relief from some side effects (these began in early-mid September, 2010):

• Disappearance of the muscle spasms in my pelvic/bladder region; these were directly between my belt and penis
• Return of some nocturnal erections (not nearly as frequently as before, nor are they anywhere near as firm or large)
• Reduction of some of the “swimming in cold water” penis effects; penis has loosened up a little bit (no more knot)

Not associated with any appreciable return in sensitivity, fullness, or other performance improvement
• Much of the anxiety and depression has been mitigated, though I’m still very anxious to make a recovery ASAP

Adjusted somewhat to lower quality of life; have gotten over the shock of having my life destroyed, some emotional acceptance, etc
Finally making contact with doctors who may be able to treat me makes me feel hopeful for the future again

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#3

I sought treatment for these issues by doctors who are aware of persistent post-Propecia side effects and are receptive to treating me for it (as it turns out, these doctors are few and far between). I am presently under the care of Dr. Irwin Goldstein in San Diego, who examined me in his office with his diagnostic equipment and reviewed the data I’ve collected on my hormone levels since I quit Propecia (I did not get blood tests for hormone levels before starting Propecia or while on Propecia, per my general practitioners assurance that I did not need to do so - advice which I now heavily regret accepting).

Several blood tests have revalidated the fact that I have low Testosterone (free and total), low Dihydrotestosterone (DHT), low LH, low FSH, and high Prolactin. Some of my other hormone levels are within normal range, but are near the edges of these ranges (I am borderline hypothyroid, for example).

Dr. Goldstein performed thorough diagnostic testing on my genitals. The testing revealed that my penis has increased perception thresholds for hot and cold stimuli (I need hotter and colder stimuli, respectively, than an average man in order for me to be able to begin to feel it). A pharmacologic erection was induced, and testing on it revealed that I have reduced arterial blood flow to my penis; roughly half what it should be for a man my age, according to Dr. Goldstein. Dr. Goldstein rated the blood trapping mechanism of my penis as excellent, due to the difficulty encountered when trying to return my penis to a flaccid state; three shots of adrenaline were administered and these were ineffective, and so he had to resort to aspirating the blood directly from my penis with a syringe.

A few weeks ago I began the drug therapy prescribed by Dr. Goldstein (Clomid, Cabergoline, and Arimidex) to try to correct my hormonal problems. At the moment, I believe the drug treatment is beginning to help me cope with many of the ongoing Propecia side effects; but unfortunately, my improvement thus far has been very marginal, as I presently still feel much closer to “the floor” I hit after taking Propecia than I was to “the ceiling” before taking Propecia.

My plan is to first correct my libido, muscle mass, and the rest of the post-Propecia issues by dealing with the known hormonal problems before I consider any other options to improve the quality of my erections (i.e. revascularization surgery to improve blood flow to my penis). I did not have any difficulty achieving or keeping erections before starting Propecia, thus I believe (or perhaps hope, actually) that once a healthy hormonal profile is restored my erectile performance will also be restored.

I want to get my life back on track as soon as possible, but I would also like to try to avoid surgery if I can (and again, I want to reiterate that erectile difficulties are the least of my concerns at the moment with respect to my ongoing Propecia side effects).

1 Like
#4

Hello Aero, you seem to be one of the most badly effected, i share many of your problems.

Please contact Dr Irwig and take part in his study, which is still ongoing. You can also ask him some of his ideas about whats happening, viewtopic.php?f=33&t=3497 .

To answer some of your Q’s, here is a discussion on alcohol; viewtopic.php?f=5&t=3901 , or maybe just a liver problem…

You seem highly intelligent, but it looks like you need to change your focus from engineering to endocrinology and cellular biology! Also, your pains down below sound like a prostate problem.

#5

Your story is similar to mine and many others I’m sure. Its good to hear that you seem to be somewhat improving lately. I agree with your assessment of the acceptance to the lowered quality of life. I think that has lower my anxiety and depression as well. I know that this has destroyed my life and I have accepted it. What is complete hell has just become normal to me. I don’t dwell on it as much anymore.

#6

Maybe getting the prolactin down will help with the gyno. Good that your starting treatment so maybe something will take hold there. My hormones never really tanked but I have all the sides you describe. Don’t view it as ruined the rest of your life. Yes, we are going to be like this indefinately but there are a few promising treatments being developed.

#7

Sorry to hear its destroyed your life too. I’m with you on the erection problems isn’t on my important list (that would sound crazy to me before this happened).
My vision and brain fog is whats destroying me. I cant focus properly and have to really put effort into it, 2 or 3 seconds later it just fuzzes over and i must make additional effort continuously to read or pay close attention on something. This in turn gives me eye strain.
My brain isn’t sharp and now i would hardly even bother carrying out a complex task. I find i must read things several time now to grasp it.
Without our minds in tact its like our defenses are down.
The only way i can press on at the moment is to except this lower quality of like as normal.

Ive been reading a lot about stem cells lately, and have hope in a year or two it might be at a point where it can repair our damaged cells.
Fingers crossed.

Best of luck with your recovery

#8

I agree with Oscar in all respects. I have already contacted Dr. Irwig to take part in his study, submitted my responses to his questionaire, and gave a telephone interview.

Since starting my ordeal with Propecia, I actually have thought about changing my focus from engineering to endocrinology, or some other medical field. As an engineer, I do good work and provide great value to the customer, but in a sense I feel a bit disconnected from them and less motivated to perform as my career progresses because I do not get to see how our products impact the quality of life of most people. Looking back on it, perhaps it may have been wiser for me to enter a field like medicine instead, where as a doctor I would be in a position to see first hand the impacts of my decisions on people and would have that incentive to keep me motivated.

Due to my experience with Propecia, I now know that there are clearly different qualties of doctors; those that say “yes” to Propecia and those that say “no,” whereas in the past I had always assumed that (at least for general practitioners) they all just follow a standard set of guidelines and that the qualities of care from all doctors are roughly the same. And to be more cynical, if I were a doctor myself, I think by now I probably would have known enough about the business practices of pharmaceutical companies and have known enough to understand that androgen deprivation therapy is a bad idea, so perhaps I could have saved myself from this experience.

#9

I apologize to everyone for forgetting to mention this above, but I also have been treating myself with Ciprofloxacin and I have now been on it for almost six weeks. I did not start the Clomid for almost two weeks after starting the Cipro (and the Cabergoline and Arimidex later still). By the time I started the Clomid, I was sure that the Cipro wasn’t doing anything for me at all, so I forgot to mention my experience with it on this forum.

I saw another urologist locally, Dr. Jacob Rajfer at UCLA, who diagnosed prostatitis (as at least one of my maladies). He told me that I should first try Cipro to deal with it and if the Cipro was working, I should start to know within three weeks; and if so, then I should continue to take it for three more weeks (a total of six weeks) to complete my treatment for prostatitis. If after the first three weeks on Cipro I did not feel any improvement, the plan was that I should stop the Cipro, and then try an herbal product called “Prosta-Q” to try to deal with the prostatitis. The Prosta-Q cannot be taken together at the same time as the Cipro because the Cipro can interfere with the ability of the Prosta-Q to work properly.

Dr. Rajfer was not objectionable to my inquiries in regards to also treating myself with Clomid, Cabergoline, and Arimidex; these are all safe to be taken together with the Cipro and won’t interact adversely, though he did request that I wait a few weeks to start these other drugs so it would be possible to determine which treatment was working for me (presuming that any of them did help).

Obviously I should have quit the Cipro three weeks ago because it didn’t seem to be working for me, but then again I wanted to be sure that just in case it was working and that I just missed noticing the improvement, that I did kill anything in my body that might be associated with the prostatitis before I gave up on Cipro; I haven’t experienced any adverse effects from using the Cipro, so I felt that I have nothing to lose with respect to continuing to consume it. I’ll be stopping the Cipro soon since I’m coming up on the six week mark.

By now after almost six weeks I am also using the Clomid, Cabergoline, and Arimidex, and I still have anal/rear of testicles/penis pains (all of which I’m told can have prostatitis as the root cause), so I know for sure that Cipro hasn’t done the job. Very recently, I have begun to believe that I might be experiencing some relief from some of these prostate-specific symptoms, but it is too early to tell for sure, so I’ll wait a couple more weeks while on the Clomid, Cabergoline, and Arimidex before calling it either way; if I do recover at all, for sure I’ll attribute it to these three drugs and not the Cipro. I intend to continue to consume these three drugs indefinitely, or until I (or if I) achieve a full recovery from all of the Propecia side effects.

With respect to Prosta-Q, I am going to look into obtaining that as well (it can be ordered over the internet without a prescription since it is just an herbal supplement). I’ll wait until enough time passes so that I can have expected the Clomid, Cabergoline, and Arimidex to achieve their full potential in helping me out before I consider starting the Prosta-Q. I’ll have to call Dr. Goldstein to find out how long I should expect to have to wait, and to find out if he is also agreeable to me supplementing my treatment with Prosta-Q. I do not feel rushed to start the Prosta-Q, however, as I am definitely starting to experience some relief from some of the non-prostate specific side effects (namely the muscle loss, if nothing else); this fact helps me out a lot psychologically because I know I am at least making headway somewhere, so I’ll be more receptive to waiting a little longer to start new drugs/products to improve my situation yet further.

#10

Bro,

Prosta-Q contains Saw Palmetto, a 5ar inhibitor, be careful.

#11

I’d be careful with Cipro too, that seems to affect some people really badly. I think there are forums similar to this about it.

Are you regaining muscle mass, aero?

#12

The Cipro hasn’t done anything adverse as far as I can tell, and it hasn’t done anything positive either; basically, it was just a waste of time and some money for me. It hasn’t done anything for the prostate pain, which is the reason why I started to take it in the first place. After hearing the “saw palmetto” comment above from ‘mariobros’ in regards to Prosta-Q, I’ll definitely give that stuff a second thought and ask around big time before I even think about getting on it (I’ll be asking Dr. Goldstein in particular for sure). THANK YOU FOR CATCHING THAT!

On that note, has anyone had any experience with Prosta-Q?

After what I’ve gone through with Propecia I don’t know what or who to believe; trying to find good, reliable medical care and consistent advice is like trying to win a shell game…it’s impossible, and even if you think you’ve made the right decision it seems like you always end up losing. I’ve talked to about a dozen doctors to date, and no two doctors have ever told me the same thing! I sometimes feel like this whole experience is just some kind of a sick joke.

And getting back to ‘Luckfax’ (now that I’m done venting), yes I’ve definitely felt some improvement in the time since I’ve started these other drugs, Clomid, Cabergoline, and Arimidex. I stagger-started these three drugs a week apart because I knew for sure that they were going to mess with my hormones so I was really nervous; my thinking was that maybe if I had another nasty Propecia-like reaction I would know which one of them did it.

After starting the Clomid, for sure I felt like my testosterone was being raised and that I had some more “oompf” in my body (not much of an boost, but it definitely was a positive sign). After starting Cabergoline and Arimidex, I didn’t feel anything in terms of a change that I could detect outside of a steadily increasing boost (apparently from testosterone), so I don’t really know if those two drugs contributed to that, or not and that it was just the Clomid working all along. Regardless, yes, I have rebuilt some muscle, but very little and very slowly; if I had my old hormonal system somehow restored back to pre-Propecia abilities, I know I would have bounced back much faster than I have been doing so with the Clomid and other two drugs. I’ve only been on the Clomid for six weeks however, so maybe it will continue to raise my abilities with time; I don’t know how this drug works, so I really hate to speculate. Also, I should say that there seems to have been a return of a sense of “fullness” in my genitals that I lost when I got on Propecia (it hasn’t gotten back to pre-Propecia levels for sure, but it is starting to feel better); but also, so far, there is no improvement in sensitivity for pleasurable touching, no improvement in erectile ability, and no improvement in libido or anything else, and I still have that weird nerve blockage sensation that makes my genitals feel disconnected from the rest of my body.

I have a pending blood test scheduled for this Thursday, so a couple weeks from now I’ll know what these three drugs have done to my hormone levels. I’ll keep you all posted on how the situation proceeds with time; I’ll probably post again in about two weeks to specifically address my recovery status and blood test results so that you’ll all be in the loop and can hopefully benefit from the information.

#13

I stopped the Cipro this past Tuesday, and now on Saturday the pain in my left knee has completely disappeared, though I still have clicking and popping in both knees. I had discontinued running at least a couple of weeks ago, but the pain in my left knee was persisting and in fact getting even worse with time. I’m seriously starting to wonder what role Cipro may have played in influencing the trouble I’ve been having with my knees; hopefully the clicking and popping will let up with time as well.

I am still on the Clomid, Cabergoline, and Arimidex; these are the only other drugs that I’m attempting to treat myself with at the moment. I hope they will do more for me in the future than they have been up to the present time; I am totally unsatisfied with the results that I’ve experienced thus far.

I will not start any other drugs or supplements until I get results back from my first blood test post starting the drugs, which was taken just this past Thursday. Tentatively, I’ve been told that the data should be available to me before the end of December.

#14

You posted wondering about crackling joints and knee pain after taking cipro. My favorite subject. :-/

Well, I stopped taking Cipro 3 months ago and I still have clicking and popping in my joints. You would be well advised to note that the survivors group for Propecia on Facebook only has 18 members, but the one covering Cipro has 717.
facebook.com/pages/Fluoroquinolone-Antibiotic-Toxicity-Cipro-Levaquin-Avelox-Floxin/106912045999263

At 6 weeks on the drug you have passed the duration of almost all of the 10,000 9/11 postal workers who took it for anthrax… and then sued over the long term or lifelong adverse side effects, many of which are the same as Propecia: tinnitus, brain fog, anxiety attacks, insomnia, dizziness, hair loss, low testosterone), increased T4 thyroid levels, erectile dysfunction, visual acuity decreases, floaters, double vision, dark circles under eyes.
And of course it has its own characteristic symptoms: tendinitis, arthritic pain, crackling joints, and joint and muscular pain appearing in joints symmetrically across the body or at previous injury sites. Shooting nerve pain in arms or legs is another. It will be hard to tell which drug you are reacting to now if you have new symptoms.

Once you are off Cipro, you will need to start taking Probiotics with multiple bacterial strains daily to prevent Antibiotic Associated Diarrhea, which runs as high as 20% likelihood in broad spectrum antibiotics during 2-3 months after antibiotic use. (Source: clevelandclinicmeded.com/medicalpubs/diseasemanagement/gastroenterology/antibiotic-associated-diarrhea/)

I took Cipro once without having side effects, so you will very probably get lucky like most people do. But if your knees aren’t recovering in two weeks after cipro or you start developing tendinitises that are symmetric across your body or shooting nerve pains in your arms or legs, we have an active support group at:
health.groups.yahoo.com/group/fqtoxicity/

Regarding prostatitis, you should have had a urine test to look for bacteria in you urine. Did it even come back positive for bacteria? I’m told most prostatitis is not bacterial in nature.

Myself, I’m curious why Cipro and Propecia have so many of the same symptoms. I see they act on the same Cytochrome P450 liver enzymes:
medicine.iupui.edu/clinpharm/ddis/table.asp
…but how the table works is still something I don’t understand.

#15

Awesome, well I guess I just can’t get any luck. The pain in my left knee has stopped, like I said; but, I still have clicking and popping in both knees. As of last night I’ve noticed that if I do physical exercise (I did some stretching in the evening), the pain in my left knee will return to almost the same magnitude that it was at while I was on the Cipro near the time that I quit; but, the pain disappeared again overnight and now I am experiencing no knee pain again. You say that in two weeks I should know if I have a long term problem or not; as of now, I have been off the drug for five days (I quit last Tuesday), so hopefully this will let up before the two week mark comes along; I don’t want to have to join another online support group.

For me, I didn’t notice any knee pain like this until about the last two weeks that I was on the Cipro, so I didn’t make the connection; my only other prior experience with a drug reaction was with Propecia, which I knew was giving me trouble before the end of the first day that I had taken it, so that was what I was looking out for with Cipro. At the time I felt nothing change for the worst (I was specifically warned by the doctor about the possibility of tendon trouble and did not experience it), so I determined that Cipro was safe and just forgot about it; but now, I’m not so sure since it seems like having that stuff in my body may have had some sort of a cumulative adverse effect. I had even heard about “exploding tendons” in people who had taken Cipro, so I was really expecting to see a sudden or dramatic appearance of symptoms, rather than a delayed onset of pain and other trouble which is what I experienced.

I agree with what you said about possible side effects of Cipro being masked by what I was already experiencing with Propecia; I already have erectile dysfunction and it seems like just about everything else too, so there weren’t many other places where a new problem could show up that I think I would notice it. I’ll watch closely for the development of new side effects post quitting Cipro to see if I experience any of the shooting pains and other symptoms that you’re describing.

My understanding is that I’ve already been taking probiotics; I read that yogurt falls into this category, and I’ve been consuming that regularly for the past few weeks (just out of coincidence). In light of your post, I guess there is no reason to change the habit, so I’ll continue to consume the yogurt regularly for at least a while longer.

I was not complaining of trouble with urination, and no urine sample was collected and there was no urine test. I did, however, complain of anal, testicular, and penis pains, and erectile dysfunction, which sounded like prostatitis according to the urologist, who attempted to obtain a semen sample via massage of my prostate (in order to try to diagnose bacterial prostatitis); this was unsuccessful, so we agreed to try to treat it symptomatically.

The doctor said that Cipro is approximately 40% successful in treating prostatitis (apparently 40% of prostate trouble is bacteria related), and that we should start there because it has the greatest chance of being effective; given the fact that I was experiencing genital and anal pains similar to a persistent electric shock, I was very agreeable to getting started on something immediately. If the Cipro didn’t work I was in the other 60%, and so the next thing we agreed to try was an herbal product called Prosta-Q, but for other reasons that users have mentioned on this forum I think I may look into that much more closely before trying that (someone mentioned saw palmetto as an ingredient, and said that saw palmetto functions similar to finasteride).

The Cipro did not help with the prostatitis. Therefore, whatever is wrong with my prostate is apparently not related to bacteria.

Right now I’m just on Clomid, Cabergoline, and Arimidex, and will wait to see where these take me before I try anything else; so far I have experienced only good things as a result of taking these, so I will let them run their course before I think about trying something else or something additional.

Thanks for all of the great information in your post!

#16

Damn man. I feel for you. This is awful.

#17

I wrote two weeks because it sounded like you were already having an adverse reaction, but 2-3 weeks is the norm, though there is a pathology prom cipro where symptoms start 2 months after usage. Those ones don’t resolve for two years minimum.

Do you know how to distinguish patellar tendonitis from chondromalacia and joint line meniscus pain? It’s important.

Oh, a Fluoroquinolone like cipro is ofloxacin. Here is a study for you: ncbi.nlm.nih.gov/pubmed/20384798

Yogurt will have Lactobacillus bacteria, but you need Bifidobacteria too. Where you live, Mothers Market or Whole Foods will be able to help you find a supplement that has a broad variety of probiotic strains. If you want to cheap out, Align Digestive Care Probiotic supplement is something you could start with. It used to be at Target, but I don’t see it there anymore.

Probiotics are the front line defense against antibiotic associated diarrhea. It’s only become a problem in the past couple years with the rise of antibiotic resistant bacterial strains. If the probiotic fails and you get diarrhea that doesn’t go away for several days or more than 3 bowel movements a day, you’ll have to take Metronidazole or Rifaximin and then start probiotics all over again.

Antibiotics have side effects. It’s not just Propecia that has side effects. You shouldn’t keep taking them if you don’t have a culture test come back positive.

I’ve had prostatitis complete with an enlarged prostate (doctor felt my prostate with a rubber glove covered finger). It did not feel like electric pains. It was achy and I couldn’t urinate for 24 hours before I saw the doctor and got an antibiotic (don’t know which). 36 hours later, I could pee again. That was back before the era of antibiotic resistant bacteria and before I had chest hair. It still had a lower level of achy pain in the region for 5-6 more weeks even though I was peeing fine, my temperature was normal, and another doctor felt my prostate and said it was not enlarged.

#18

I don’t know how to distinguish patellar tendonitis from chondromalacia and joint line meniscus pain (or even know what they are exactly); is there an easy way to tell? What is the significance of each? I’ve been thinking about going to see an orthopedist, but I am hesitant to do so. I would rather consult with a doctor to handle something like this than to sit here worrying about it, but at the same time I’m concerned that they may be a waste of time, so I want to bounce my thoughts off of everyone here first (I saw several endocrinologists locally in LA and there were basically useless for helping me with Propecia side effects).

It sounds like the probiotics are just a food supplement of some sort so they should be pretty safe. I’ll check out what you said about finding stuff in Whole Foods, and will look around for it; I haven’t experienced any diarrheal symptoms thus far or anything else, other than the left knee pain (started after ~1 month on Cipro, and two weeks before quitting) and both knees clicking/popping, so I’m not sure if there really is a need to start taking probiotics because I do not have diarrhea. If do not experience any diarrhea, does this mean that I do not need to consume probiotics?

I agree that it was a mistake to take the Cipro; it clearly didn’t work. The best thing to do is to obtain a culture and see it test positive for bacteria before getting on that stuff, but I was unable to provide one in the doctor’s office, despite trying. My prostate was not enlarged, though I did have similar sorts of constant burning and aching sensations like you described; the electrical (shooting) pains that I described were somewhat more intermittent (several times a day for a few minutes, but were not really constant), but were a bit alarming when I did experience them. At the time I was desperate to do something as soon as possible to make this and all of my other problems stop, so I started taking the first treatment that became available to me, which was Cipro.

#19

You should take the probiotics for 2 months regardless of lacking diarrhea. By the time you get diarrhea, it will likely be too late and you will need another antibiotic: metronidazole or rifaximin.

I emailed you some doctor recommendations for several types of doctors in your area you would be likely to see based on your symptoms and who have backgrounds in side effects of medications and industrial pollutants. They might help you more than the endocrinologists you saw. My question for you is whether your endocrinologists took your claim seriously that a medication caused you health problems? You’ll find many doctors like orthopedists won’t. Only 47% of medical school programs teach pharmacology and the adverse reactions of drugs.

In the world of Cipro and Fluoroquinolone Adverse Reactions, electrical pains are caused by demyelination of nerves. Cipro damages the body in multiple ways, some which have immediate effects and some take weeks to show up. Nerve pains to the prostate, though, are pretty unheard of, and I know you had those before Cipro. For us, it’s the arms and legs that get affected. For us, our tinnitus is usually based on nerve damage to the nerves to the ears or damage to the little hairs responsible for hearing and balance. The term there is Ototoxicity.

I’ve seen someone here describe a feeling like their penis is a different person’s. We have a side effect called depersonalization where it feels like you are watching yourself from the outside. en.wikipedia.org/wiki/Depersonalization

#20

Regarding beneficial gut flora, most yoghurt has “live and active cultures” written on the packaging but most of it doesn’t because they die during treatment. There are not many yoghurts that have enough beneficial bacteria to make a difference and you’re best bet is to search for them in whole foods or another organic grocery store. You can also take the probiotics tabs. Actual Kefir is good too, there are some good ones at whole foods, just get the plain flavor because the rest are full of sugar.

Also, if you’re trying to repopulate the bacteria in your gut it’s advised to avoid foods treated in chlorine baths like the majority of supermarket meats, for example. Many veggies have this treatment too.