Dr. Shippen and Dr. Crisler both claim decent rates of success. I think Dr. Crisler claims 80%. Dr. Shippen I forget, but I think it’s in the neighborhood of 50 to 75 percent. Of course, “success” could simply mean improvement of symptoms and not a cure, i.e. not getting back to 100%.
I’ve never heard of anyone with these problems from Saw Palmetto. Where is the evidence for this claim?
PSE
There are a few people on this site suffering horrible sides from SP. It only makes sense as the mechanism of action is the same as fin. I also remember thinking back to before I took propecia and I was also being affected by SP in a negative way. Just didn’t know at the time what it was. Hindsite’s always 20/20
I wish some of these near-legendary guys that Crisler and Shippen have had success with would come here and tell their story. I guess every single one of them must be too busy, because there’s no way Shippen or Crisler would mislead us.
PropeciaSideEffects, it’s been a while since you checked in: how are you doing these days? Are you symptoms mainly ED and libido, or are there others?
I need to update the post above to reflect some new developments, including the discovery of low Adiol-G in every post-finasteride man who has had it tested.
I’ve been doing pretty poorly. LOTS of health problems, to the point where my sexual problems (which are terrible) are pretty low on my list of priorities. I have been feeling a little better recently. I stopped CG recently but continue taking Arimidex. I’m also taking Bupropion, L-Tyrosine, and DL-Phenylalanine. All of a sudden, I have self-control and motivation again!! Something’s working, at least to an extent. Hence, my reappearance on this site. For most of the last few years, I’ve been too tired, stressed out, unmotivated, in physical pain, etc. to participate. It’s nice to feel somewhat human again.
I’ll try to post from time to time when possible. I have pretty severe tendinosis so I have trouble typing. I need to look into voice dictation software.
I’m still seeing Dr. Shippen. I plan on seeing Dr. Crisler soon as well. I’m also planning on seeing Dr. Braverman (author of The Edge Effect), finances permitting.
Thanks for coming back. I have a few more questions, hope that is OK.
If you don’t mind me asking, what kind of health problems have you had? It’s just that you answer might help people like me - I’ve been off now for one year - prepare for the health problems that we might face down the road.
How long have you been on Bupropion, etc? Do you ascribe the return of motivation to those medicines? I’m considering something similar.
How long were you taking hCG for? And why did you stop? Have you ever tried TRT?
You’re still seeing Shippen: where are these guys he is supposed to have cured, or even helped? Do you know any?
Finally, you mention that your sexual problems are still bad. Sorry to hear that. Shd we take that to mean that you can’t get a usable erection?
Thanks.
My other health problems are not directly related to Propecia usage, IMO. Here are some of them:
urinary problems: Possible infection. Another possibility is that it’s stress-related. Was very severe in 2003/2004. Calmed down after taking Levaquin for 6 straight weeks.
pelvic pain: This is from an injury, exacerbated perhaps by pelvic tension from the urinary problems. I didn’t take care of it very well due to severe depression. Got to the point where it was literally crippling. Has largely been in remission since late 2006, thank God.
acid reflux disease: Probably stress-related.
tendinosis: Once again, probably stress-related. Also due in part, I imagine, to a repetitive stress injury (typing mainly).
This is in addition to depression, lethargy, difficulty concentrating, racing thoughts, sexual problems, very poor self-control, no motivation. The list goes on. Some which were present before Propecia but have gotten worse.
I wouldn’t look at my situation and extrapolate anything on the basis of that. From having read other people’s stories, I believe I’m an extreme case. Depression and hopelessness have led to a lot of poor decisions on my part. Combine this with a fair dose of crappy luck, and I’m at where I am today.
If anyone wants my advice from having dealt with this for 7 years: always maintain an optimistic attitude and push yourself hard (but not unrealistically so). Being that I decided to go on living despite all the setbacks, I’m committed to creating the best life for myself that I can. I don’t care if I recover fully or not. I just want to improve my situation as best as I can. I’ll take what I can get and be glad for any progress.
It’s hard to say what’s working and what’s not. If I were to make an educated guess, I’d say it’s Arimidex and/or Bupropion and the aminos I’m taking that have improved my situation recently. Like I said, I’m more disciplined, have more self-control, feel more motivated, can focus better, etc. But who knows? Time to get more tests done. All I know is, once I stopped CG (but stuck with the other meds and supplements), I noticed the difference. I hope it lasts!
I’ve been on CG since January '09. Stopped because the pharmacy had trouble reordering it from the supplier. Once I started feeling better, I decided not to go back on it, at least for now. I think I’ll see Dr. Shippen first and relate my experiences to him.
I’ve never tried TRT.
If anyone is going to take CG or go on TRT, make sure you have an aromatase inhibitor on hand.
I have no idea. Probably out living their lives. I don’t even know if they have recovered fully or not. I suspect many of the men Dr. Shippen says he has helped are not fully recovered; rather, I tend to think that Dr. Shippen has only succeeded in improving their situation but without getting them back to 100%. That’s obviously much better than nothing but still disappointing to many here I’d imagine.
I was able to have sex with my ex-gf. It wasn’t very good. Even when it was, which was rare, I’d be too worried about losing the erection to enjoy myself. There’s no way I’d have sex again without seeing significant improvement.
I hope this helps.
One of these days, I’ll start a thread to keep people updated. I won’t be able to post for a few days because of the pain from typing. Sorry about that.
I’m hoping I can stay the course this time and be a productive member of this forum. I set up the original Yahoo group along with three or four others back in 2003. I wish I had never left, but I’ve taken quite a beating over the last few years and have often been overwhelmed by depression, apathy, and hopelessness.
I phoned up Shippen’s office and his assistant said ‘it is a very difficult problem to treat and only 50% of men get better’. Note get better not recover.
The only real recovery I ever read was this guy Ownage, TE you might remember him, who claimed to get back to 90% from a low level through hcg and anti-e herbs. He did seem to have the classic post-fin labs of very low t and high e, and mentioned having peyronies, but also was physically in good condition.
Crisler has treated many men for this but we only have reports from one or two. Ditto Shippen, only Voice has been.
What I don’t get about hormones is that some guys have both below range t and freet yet no problems with erections while others are near the top of the range and have plenty.
We need a lawsuit to get attention and funds for investigation.
Stories such as PropeciaSideEffect’s make a good case for the idea that suicide is the only answer.
A few of the original guys from the Yahoo group have come back here recently. All of them are still screwed up, and report that the intervening seven years have been hell. It seems there really is no beating this thing.
I wish it was easy to get hold of a gun in the UK. If I lived in the USA I would have shot myself in the head months ago.
You can’t recover if you’re dead, guys set thrown into solitary for 30 years and survive. There are things out there that can make a difference to quality of life it’s just a matter of us finding out together how to do it.
I want my $$$$$$$$ for this shit too…this will be exposed one day and destroy Merck, especially after Vioxx and probably in unison with Gardasil.
ScaredMale30,
I can understand how horrible and devastating these side effects can be, because I was practically an invalid, but my story makes a case for how suicide is NOT the only answer. Have you been taking into consideration anything that I have been having great success with? I don’t understand? What about the success that I’ve had? Why do you take PropeciaSideEffect’s case as the only answer and don’t even consider my success?
I’m just trying to understand where your head is at and possibly saving someone else from ending their life needlessly. I mean come on, really. I can guarantee that none of those guys have done what I have. You would really rather blow your brains out then take a route that eases and in some cases, completely removes certain symptoms? I just don’t get it. Don’t take this post as an attack, because it’s not. I’m just trying to understand where you’re coming from. Would you really rather kill yourself then try the things that I’ve done?
Well, I do live in the US and I DO have ALOT of guns. If what I did didn’t work, I would have used them too. Believe me, the thought crossed my mind plenty of times. That’s how I knew I’d better try something and stick to it no matter how fucking horrible it was.
The first time I fasted, I didn’t care if I ever came home. I thought I was just going to starve myself to death. I didn’t care. Then a funny thing happened. I STARTED GETTING BETTER.
Suicide is not the only answer. It is an answer, but not the right one. I can’t wrap my head around the fact that you would rather kill yourself then try something I’ve proved works.
Where is your head at? If you wouldn’t mind, please explain it to me. Sincerely…
I’m sorry my post depressed you. That wasn’t my intention.
I wouldn’t lose hope just yet. Do your research, go see reputable doctors, try different protocols. As hard as it is, stay optimistic and live as healthy as you can. Reevaluate your situation several years down the line.
My situation degenerated so badly due to bad luck and poor decisions. If anyone can learn anything from me, it’s that if you keep hope and don’t give up, you’ll avoid much of the mess that I’m in now. Letting yourself sink into depression won’t help you and could very well make things much worse.
Remember that in time, your body might heal itself or you might find something that works well for you.
Still have the horrible side effects. I’ve thought about suicide myself. I would say my story is relatively similiar towards TE…about making bad decisions, falling into depression, becoming a desperate fool.
However, that is all about to change…We will get better…We will…
Mew, thanks for having this site, and thanks for putting so much effort into this community. Without you, and this community, proper awareness would not be there.
TE, as crazy as this sounds, I believe this has to do with our nerves, hence this is why some people feel better after taking dopamine enhancers, and have more energy.
I wonder if any of you has used HCG and clomid, if yes? then what was the duration and end result? I am suffering from Saw palmetto (I think worse than fin, since mine numbers are still going down after 9 months) I let alone errection I fighting to keep my self heatlhy. low energy, toe and jonint pain. bad digetion ,poor eye sight etc.
Cdnuts you once said ball zinger is great. are you still using it?
thanx
I take it off to shower, that’s about it. Once you size it right you can’t even tell it’s on.
ScaredMale, We’ve already lost people to suicide and don’t want to lose more. I know this situation can be very depressing, but you are not alone and a cure could very well be around the corner. If you need someone to talk to, you can PM me and I’ll give you my skype screen name. Sometimes it helps to know you aren’t alone in this struggle and there are many out there with the exact same symptoms that are fighting the same battle.
How many people on this forum are known or suspected to have committed suicide?
I don’t recall this happening at all on the Yahoo forum, although we did unfortunately lose touch with a number of people over time.
The only one i have heard about is someone who was known here as “paximperia”.
Although I have only been on this board for about 9 months, one thing I noticed is that fin seems to have a mroe pronouced effect on the younger men who take it, especially in terms of tissue changes, brain fog, complete ED and the like.
Those who react negatively to it in their 30s and 40s are more likely to have anorgasmia, frequent ED, adrenal fatigue type issues.
Interesting. I was thinking about the exact same thing recently. Any theories as to why this is?
PSE
In keeping with J89’s discussion on JN’s recovery site to keep it simple, here is my simple list of our issues:
Fin somehow damaged/altered our pituitary such that it now thinks that a low level of T is normal. Hence many experience low T after quiting.
Even if we increase T back to normal with TRT or Clomid our sex drives do not return to normal.
A common theme is low 3-adiol-g levels. This indicates that even if T is returned to normal the 5-Alpha reductase conversion of T to DHT is not happening properly. DHT replacement seems to confirm this as JN and several others have had temporary success with this.
Therefore we have two problems, the pituitary and 5-Alpha reductase levels.
(The reason for this post) Wiki states that “the 5-Alpha reductase enzyme is produced only in specific tissues of the male human body, namely the skin, seminal vesicles, prostate and epididymis.” I’m sure this has been discussed before (I did try to find this before posting) but how is this enzyme synthesized in the body? Is there a normal level of it that we can get tested for? I know it has been stated that heroin and some forms of choline increase 5ARII activity, but do they increase the levels of the enzyme?