Lupron and Libido - How long does it take to get into your system?

It took 6 months to get where sexual activity was not happening. A year for the libido to become nonexistent. the loss of the libido made the loss of the sexual activity easy to handle. I have gained an understanding of women:))

Others have good info above on this. Technically LHRH (Lupron) takes about 14 days to down regulate and start thereafter a downwardness in 'T' levels and later psa levels, during this 14 days you are subjected to PCa flare as 'T' level surges first during this 14 days or so, it is how it works. Dr. Strum says no patient at all should be subjected to 'flare' and uro-docs make this error all the time (must be their schooling). It took about 90 days to reach my lowest psa level (and dumb uro-doc did not mention casodex prior-so I got flare added that I didn't need), then later got to radiations, I got psa's done monthly and first month not that much drop...but I had higher end stats and volume of PCa. One should be given casodex prior for like 12-14 days or other flutamides that would stop the flare issue, as he states in his book p.140 (patient with bad luck on flare died within days, complications related...read it for reality check).

Degarelix,  new drug similar but not  an LHRH (Gnrh?), has no flare associated with it and drops T levels in like 24-48 hrs. (fast). FDA approved this earlier this year, just getting out into the docs hands, some might not even know they can get it. Looks like it could become a better mouse trap, choice (maybe).

It is rare that Lupron is ineffective right from the get go, but if such scenario happens one is likely dealing with highly aggressive, refractive PCa, one example is the variant "small cell PCa" it is one of the worst, it is rare in patients is the good news. Hope nobody herein is found with such.

Woodysgirl:

I don't know what my testosterone level was prior to the first Lupron shot, but I was pretty sexually active.

After three weeks I noticed my libido was starting downhill and after six weeks I not only was not interested in sex, but the erections were getting few and far between.

I was on Lupron for 10 months and am now 6 weeks into a "vacation". Just barely seeing a slow rise in libido. I guess it will take some time for the testosterone level to regain normal levels.

PS. While on Lupron my testosterone level was 20. Considered a castrate level.

Don K.

As far as I know and have not read contrary. Because the drug is given at overlapping intervals commonly 3-4 months versions are most used, your 'T' level would be way down by then and the next injection overlapps the effects from the prior one, so basically does not happen. Now if someone took a one year holiday (intermittent) and 'T' level was high enough therein, then it should be a possible issue and casodex should maybe be done prior. The worst is for high stats patients to be subjected to this on the intial useage, it could actually influence them in many ways.

Someone else might mention counter effects-drugs or useful ideas on how to better tolerate being on Lupron for 1-2 yrs., it is not necessarily a walk in the park. Be prepared for some nasty hot flashes, heavy sweating, weight gain, muscle atrophy, possible muscle aches, mood swings (may be totally new for a male to experience, may include the crying game), bone density loss and possible memory loss.....otherwise the drug works well at controlling psa levels atleast for a decent duration. You are going to have to understand his symptoms will effect your relationship at some point, maybe not now but 6 months or more you may notice. He will need a supportive pal or loved one, it is not all easy street. Best to you going forward, you asked some good questions, that I didn't know way back then either.

OH ------by the way years ago a batch of bogus  (phony) Lupron got into the hands of some docs(unknown how) and they unknowningly injected a placebo or ineffective whatever it was....some of the cases were figured out, because T level didn't drop and new injection with different batch numbers and/or switch to Zoladex or other, found they did work thereafter.  LAND of the bizzare, so if someone has no change in T level, consider this possibility it happened before. There are some stories out there that are not fiction.

I have been on Lupron for almost one full year, with first injection mid-August of 2009. Loss of libido occurred before the end of the first month on the drug, and impotence (inability to have an erection) followed about a month after that. Other side effects I have observed are :

Hot flashes – Mild hot flashes that result in temporary sweating. No pattern to when they come, may be at day when reading or at night when sleeping. Fairly mild irritant.

Increased bone and joint pain – My bones and joints are much stiffer and hurt more than before I went on Lupron. But I am 66 and a year older and not sure how much of this can be attributed to age and how much is Lupron.

Discomfort at point of injection – The injection results in a deep ache at the point and significant body aches all over for up to a week after the injection.

Blood test abnormalities – I became mildly anemic, for the first time in my life. This has been corrected with Vitamin B12 and iron supplements.

Weakness or general loss of strength – Very noticeable. A ten mile bike ride now is very tiring, not so smuch during the exercise but afterwards. Immediately before I started on Lupron I was cycling 70-100 miles a week with no fatigue.

Weight gain – I have managed to avoid weight gain, but only by careful control of diet and making myself exercise in spite of weakness.

Swelling of the breast – Minor swelling of the breast.

Depression – Occasional depression, but not severe. But is depression not a normal response for a 66 year old man in good physical condition and sexually active to have all of that taken away by PCa?

Overall the symptoms I have experienced are very much in line with what my radiation oncologist advised me I would experience.

Sancarlos

Sancarlos,

Thats a very long list of side effects, sounds like you have been getting all the major ones. I wish you well.

Ask about casodex and proscar or avodart combo (ADT2), probably little lesser in side effects, many people say casodex is much more tolerable overall and proscar or avodart you may feel no differences(you can ask about side effects). I took proscar separately for a short time and could not detect anything using it in my case. (no profits made on these for the docs office) Ask about should you be using D3, fosamax or is zometa to be considered and at what point, these are useful on bone issues.

You should have had casodex prior to Lupron originally, sorry to say. Gleason 9 with psa of 11.9 is riskier than average for PCa flare issue when introduced the first 14 days into your body. Dr. Strum says in his book no PCa patient should be subjected to any possible flare in PCa...he knows this beast very well. But hey my genius uro-doc did the same to me when I knew no different and I had higher stats over yours. One patient died from relating complications of induced PCa flare mentioned in his book as an observational learning tool.

Good hunting tommorrow, your doc will likely down play the flare issue as not all that significant (they have not seen patients die or have immediate events from so doing...still it is wrong). Whom is a big enough man to eat humble pie and admit I made an error??? Plus your challenging his medical (agenda) or advice by asking about other things and from other docs like talking about Strum probably won't make your doc feel great and he will maybe say...well go see him then! But, remember you live the protocols and the doc doesn't, you might even find yourself going elsewhere. You will find out how open minded he actually is real quick.

Example- a guy in Canada recently mentioned is his advanced PCa journey, he decided he wanted to try the estradiol patches for further control...his doc said no way...he said back to the doc, Dr. Premoli in Argentina has been using these on patients for years with good results and no issues...his loveable doc said "well go to him and get it"!!! This patient went to his GP in Canada and pleaded his case...the GP gave him an Rx for this, and he got 2 yrs. of PCa control, in an out of control scenario. Gee what is 2 yrs. worth to a patient that failed all the main stream thigs prior? This is typical fighting to get what you want to use.

Mention that you know of patients whom went of Lupron or typical ADT drugs and are having less side effects and decent results using: estrogenics, like estradiol patches or gel, DES, emcyt and then see if he over doses on that information (lol). I would love to be there when you mention such, not many docs know these enough or because there is no money in these don't ever go there. There are examples of people on these and they know the differences, including me 2 yrs. ADT3, 4-5 yrs. DES....night and day difference in side effects and control in my case. Those drugs do not rob bone density or memory loss and much more.

Do report back on this conversation and whatever protocols are offered or considered. This area is always of interest to me.

Zufus,

I met with the medical oncologist today. He said that in his opinion my situation did not warrant total androgen blocking at this time. He mentioned that there is no randomized data that proves that this protocol is effective, even though the theory behind it is good, and the side effects of two or three more drugs might be significant. As an alternative he recommended that if the symptoms were tolerable I should continue on Lupron for another 6-9 months, or until my PSA reaches a nadir, and add a light dose (50 mg per day) of Cassodex to go along with the Lupron. He suggested that if the Lupron symptoms were to become intolerable I could switch to a very heavy dose of Cassodex + Avodart.

So that is where we stand as of today. I went along with his recommendation and had the Lupron injection, which has left my butt very sore. And I began the Cassodex.

BTW, Arno, the cost of an injection of Lupron is well over $2000 USD a pop in my part of the world.

Sancarlos

I have been reading your thread and and would like to know more about Zoladex. This is what the doctors have recomnded for my dad to bring down his PSA. How often is the injection required? Does Zoladex also cause flare ups? Does he need to take Casodex along with Zoladex? What are teh side effexts of Zoladex.
From you dicussion it seems that Lupron has innumerable side effects.I fail to undrestand then why are the doctors recommending Lupron over the other medicine. All teh med names feel like Geek and Latin right now but I am learning. I have come a long way since my first post less than a week ago. Like someone mentioned PC is a journey and I am just getting started..
High PSA Detected- July 30th
PSA Level-65.8
DRE Positive-August 2nd
Biopsy Reults-Positive August 6th
CT Scan/Bone Scan- Negative August 9th

A little PCa drug history would be injected right here:
Dr. Labrie (Canada) first doc to help get flutamides to USA (like casodex), prior to introduction of Lupron. Alot of patients used casodex as mono (primary) hormone therapy with good results. Basically has less nasty side effects than all the LHRH injection drugs, and you can have sex much easier while on casodex, a small token plus maybe not mentioned to often. Lylodd Ney founder of PAACTUSA.org (Patient advocates for advanced cancer treatments) in Michigan, failed radiations and had radiation issues, and long time fighter in this arena...was looking for drug therapies that might work on PCa...enter Dr. Labrie and Dr. Strum studied under Labrie and was helpful in getting Mr. Ney onto casodex and got good results in his treatments. Dr. Strum started off with Paact and later went off on his own PCa quest, but may contribute to their on going PCa newsletter (donation basis if you want them, well worth getting btw). Mr Ney fought his PCa battle something around 14-yrs.+, his in law is heading it up now Rick Profitt and will talk to you via phone for free.

Lupron appears to be the most profittable as docs office makes a killing on it (fyi), suspect that is number one reason it is used even over Zoladex, Precisis, Eligard, Trelstar LA etc.
Long term useage is associated with real bone density issues, that you the patient need to atleast acknowledge such. You can google lawsuits and read some fun things about these drug companies past with these, fyi.

One of my friends with one of the worst cases of PCa seen by Dr. Lee is using casodex and tamoxifen and getting fabulous results (fyi). He had to wear catheter for actually 6 months (the same one) the cancer was growing around it and would be painful to extract, that is why that got crazy. Anyway the onco doc knew too that this friend did not like the possible side effects of Lupron and so went with casodex, doc told him in advance that catheter will likely fall out on its own (as it shrinks the PCa) (he had PCa into the bladder confirmed by color doppler ultrasound). Well it did just that and now he is peeing normal and like a racehorse and has done so well, that he dropped all drugs and is monitoring 2 months thus far and psa has not moved from undetectable level and this is on casodex used for about 1 year. Go figure.

www.paactusa.org   (newsletters, information site, phone discussions see site)

 One of the more interesting threads on Lupron and Libido. This being a year later, I'm wondering if you guys have anything else to share. 

 I guess the bottom line is that the ultimate goal is to starve the cancer cells and the only effective way to achieve that is to lower the T levels and apparently that means chemical castration levels. That unfortunately spells SEs and there's no easy way around that, unless you want to compromise your treatment.