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Lupron treatment during 12 years for precocious puberty

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Posted 10/8/2013 11:09 AM (GMT 0)
Hi everybody !

I'm 27 years old man, and for 12 years I received a monthly treatment of Decapeptyl through muscular injections, to treat a precocious puberty. I was 7 when the treatment started, and it ended at 19. I also had a corticosteroids treatment, for a congenital adrenal hyperplasia, that was stopped a few years ago. Since then, I visited two times an endocrinologist, and all blood reports were fine.

If I understand well, Decapeptyl has numerous names through the world, and would be best known in US as Lupron.

For years I've been suffering muscle pains and ligament weakness, leading to several wounds on the knees and the ankles. But I always thought it was just bad luck, and that nothing could be done against that. But since last year I've been experiencing a lot of sexual problems, as a loss of libido and inability to keep an erection. Again, I thought it was bad luck, and it would no keep going that way.

A year later, always the same problems, and I just feel stupid and crazy : I'm 27 years old and my body hurts like an old man, and I can't give pleasure to my beloved girlfriend (darn, I'm so lucky she has so much patience). My previous doctor didn't give a crap to my problems, so it led me to think that all was in my head, even though I'm feeling pretty sane and acting normaly.

Today, I made some research about my old Decapeptyl treatement, and I started reading a lot of bad stuff about Lupron, and it scared me a lot. But it could maybe explain the problems I have with my body. Next visit to my new doctor, I'm gonna talk about that, hoping that she will be more receptive to my complains that the previous one.

In the meanwhile, well... Nothing much to do but wait... I just hope I'm not crazy.

PS : sorry for my bad english, I live in France but I can't find a lot of information about that drug
Posted 10/8/2013 11:51 AM (GMT 0)
Hello Thre, and welcome to the CP forum at Healing Well. We are always glad to see new folks but I'm sure sorry to see the trouble your having.

Your welcome here in CP of course and David's a member who posts here and in the prostrate cancer forum but I really think it would be to your benefit to visit that forum with your questions. Those fellows are the go-to guys when it comes to effects of hormone therapy and much better relate to your problems.

There are some very welcoming people there and will help you any way they can. As I said David's from that forum as well and will see your post here buts likely to invite you there as I have so you can get more knowledgeable replies then we can offer you here.

As for your pain issues we certainly understand that and will help you in whatever ways we can.

Thanks for joining us and again welcome!
Posted 10/8/2013 12:02 PM (GMT 0)
Thanks for the answer !

The main problem is that in no way I had a treatment for prostrate cancer, so I didn't want to pollute this forum. Though I already read a lot of posts in that forum, because it has a lot of occurence for Lupron and I read some interesting stuff of course.

But I wonder if it is really the same between a few month treatment for a cancer, and a really long treatment during years for precocious puberty. I'm specificaly interested in long term side effects that could remain persistent or appear years after stopping the treatment. And I can't find a lot of information about that, unfortunately.

Anyway thanks again, I will wait for David and will do wathever is asked to me :) Feel free to move my post to the forum you feel is the most relevant !

Have a nice day !
Posted 10/8/2013 12:22 PM (GMT 0)
No need to move it. David has been around a long time and may know if one of the guys has used it long term that was my reason for suggesting him.

Im glad you've been reading there but I'm sure they wouldn't view your posting as a pollution by any means! They get a variety of questions about a variety of subjects.

In the meantime you never know who may have experience with long-term use of Lupron.

Good luck in your search for answers!
Posted 10/8/2013 1:36 PM (GMT 0)
Hi David, I'm a woman but I have been on lupron for years. I haven't noticed any other side effects other than hot flashes, weight gain and other typical "menopausal" type of side effects. I also haven't been on it as long as you have. I've been on it for almost six years. I haven't noticed overall body pain, just my chronic pain that I've had before my lupron shots. I hope you feel better soon and I hope others chime in that mirror your situation a bit more. Perhaps I need to stop my lupron injections?
Posted 10/8/2013 1:58 PM (GMT 0)
Bonjoir, Threkin

As far as I can see, you would be welcomed at both forums. You have pain issues, and you were on Lupron long term. Glad to see you have been at least reading some of the men's experience with Lupron and HT in general.

However, there's more than meets the eye. Yes, some men are put on it for just a few months. This is often done to shrink the size of the prostate in order to meet the criteria of certain primary treatments, such as surgery. It's also done in conjunction with radiation sometimes, some experts feel that radiation and HT can work well together. Yet, many other experts disagree with this approach.

What you are not seeing, is that some men are on HT, including Lupron, for many, many years. For some, its what is keeping their cancer from progressing faster. But there are serious health risks associated with using it, and definitely serious quality of life issues too. For starters, there is weight gain issues, which can add to potential heart issues. There are the hot flashes (sure many women here know all too well about that part, lol), and for most men, the worse part is it takes your "t" level to near zero, and there goes your sexual interest (libido).

So while you were on it for nothing to do with prostate cancer, there's no doubt in my mind that you are having the same negative effects that even the prostate cancer men go through.

If I did your age correct, you have been off the Lupron for about 8 years now? If so, the direct results of Lupron should have long worn off by now. Most men, when they quit it, return sexually to the point where they were at prior, within a few months to a year. As their "T" level returns and climbs, usually their sexual interest and ability returns.

They even have a special group, within HW Prostate Cancer, believe it's called "Frank Talk", or something like that, where you can get into the nitty-gritty about the sexual problem side. Of course, there are many meds out there for the ED portion, and many men there with ED issues use injections, and many are happy with the results.

Yes, by all means, have a long, frank talk with your doctor. Write these concerns down on paper, and go over all of them. Don't let your young age and pride get in the way. You are too young to have to live with issues like these, and there are answers and solutions out there for you.

Good luck, hope you feel better. We are all here to help you anytime.

David
Posted 10/8/2013 2:02 PM (GMT 0)
P.S.

Before I forget. Since you were put on something as powerful as Lupron at an early age (7) during those all important formative ages, its possible it did long term damage to you, or at least "stunted" you in those affected areas. More of a reason to talk this through with a good doctor.

David
Posted 10/8/2013 2:27 PM (GMT 0)
Hi David, an thanks for your big answer !

Just to be clear, it's really not a matter of pride. The way previous doctors handled my problems just made me very uncomfortable with that : "Nothing wrong in your results, good bye". They made me feel like a crazy person, as if I invented everything. So it's very difficult to have the guts to talk about that again.

Anyway, even though it's not easy to talk about that in real life in front of almost a stranger, I must try again and talk to this new doctor about this. But before that, 2 weeks of vacations in USA, I can't wait :)

I just hope I won't have to take another chemical to resolve my sexual problems, I feel a bit too young for that already :/
Posted 10/8/2013 2:44 PM (GMT 0)
You are not crazy, I assure you. Though the men on Lupron usually have moderate to severe emotional issues being on it. After all, its not nature for men to be on female hormones, but it can be effective in slowing down prostate cancer progression.

You have to be your own "best advocate", so you need to openly talk to your doctor, or a new doctor, and spell out all your issues in an open and frank manner. No one is going to speak better for you, than yourself.

You may need medicinal help on the sexual side, at least short term, until your body is responding again in the natural way. Its possible it may be a long term issue, but there are solutions out there, and for many men, they really work.

Don't give up hope, take that next first step, and see if you can start getting some answers and solutions. You have your entire life ahead of you.

Glad you have an understanding girlfriend, so that you don't have to feel alone. Plus all of us are here for you.

I would suggest you post at the prostate cancer group, and tell them these issues, there are so many men experienced with Lupron, you will be surprised at the response and quality of answers. For the record, I have never been on Lupron or any other form of HT.

David
Posted 10/8/2013 2:59 PM (GMT 0)
Thanks again, I just create a small topic in the prostate cancer group referring to this one.

I'll have to wait after my vacations to see again the doctor, and before that I have to make a scanner of my lower back due to redudant pain, that almost prevented me to walk this last week-end. My body is so broken everywhere...

Maybe I'm a sort of Benjamin Button, and I'll become younger and feel less pain one day !
Posted 10/8/2013 3:21 PM (GMT 0)
Hello Thre and welcome to the chronic pain forum.

My first thoughts are is it possible to get an appt & go back & see the dr that put you on Lupron? Seems to me that would be the dr that would know of any possible long term effects of being on the Lupron.

Do not let any dr tell you this is all in your head or that you are crazy. Remember when you go see a dr you are paying him for a service and he works for you, you are hiring him for his services. If you don't get an answer with one dr, seek out the services of another, there has to be someone that can help you.

I use a web site called www.Drugs.com to look up all medications.They give a wide variety of info on drugs so you may want to look up Lupron there.

Anyway welcome aboard. Take care...Susie
Posted 10/8/2013 3:32 PM (GMT 0)
Hi Susie !

The main problem is that at that time I lived in Belgium, and wow, it's been 20 years now that this endocrinologist put me on Decapeptyl. I don't even know if he works anymore, he was already of a respectable age at that time. And well, I live in France now, so I can't go there easily now.

I just met a new doctor yesterday, because of the previous one I was not able to talk about this for a year, I felt realy stupid because of my last experience. But now I have a good feeling about the new one, she looks very comprehensive, and I really hope she will be able to help me.

Post Edited (threkin) : 10/8/2013 9:49:52 AM (GMT-6)

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