Lupron withdrawal?

[Sillymary73]

My husband has been on Lupron for almost 18 months and has been suffering with hot flashes seems like that’s taking over his life! His numbers are way down and a pet scan showed no red spots although under his arm where the lymph node is looks like it’s red we see the doctor on Wednesday and he wants to get off the Lupron any thoughts on mood changes how long it’s taking to get off the Lupron any suggestions or thoughts?thank you

[Tall_Allen]

There are several reasons for taking Lupron. Why is he getting off Lupron? Was he taking it as part of his radiation therapy?

[Sillymary73 in reply to Tall_Allen]

He is taking Lupron for metastatic cancer of the prostate and lymph nodes! He has a PET scan in December of 2019 with showed no red spots (cancer) Nd his numbers PSA was 4.9

He had another PSA last week and we see the oncologist this Wednesday, we are wondering, because he has so many side effects from the Lupron that maybe he could go off of it for a few months and maybe enjoy the summer a little!

Any feedback would be great!

[Tall_Allen in reply to Sillymary73]

Thanks for clarifying that. It sounds like he is metastatic and castration-resistant. The red spots have gone away because of the Lupron and they will come back if he stops taking it. In fact, he should be taking even more hormone therapy now (abiraterone or enzalutamide).

Unfortunately, the side effects of Lupron don't disappear immediately when one stops taking it.

There are other things he can do about the hot flashes: estrogen patches, progesterone patches, venlafaxine (Effexor) or acupuncture.

[Hidden]

There are pretty good remedies for the hot flashes while on ADT. Your doctor should be able to prescribe one of them.

[Sillymary73 in reply to Hidden]

He tried patches, Effexor is not an option!

[Hidden in reply to Sillymary73]

I take Paxil for them. It virtually eliminated the hot flashes

[Magnus1964]

The hot flashes may be debilitating but unless Lupron has stopped working, stay with it. If it is interfering work he might try Casodex, it has fewer side affects than zytiga or xtandi.

[Sillymary73 in reply to Magnus1964]

Thanks

[Rob1053]

The half life of Lupton is 6 months. It stays in your system a long time. Good luck

[j-o-h-n]

Tell him to stick it out....

BTW:

Sillymary get out of bed, we need the sheets for the table..... (sorry that's Lazymary)...

youtube.com/watch?v=NzoJr-g...(Not working as expected?)

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 06/09/2020 7:21 PM EST

[Learning4him]

My BF takes this medication and hot flashes are an unfortunate side effect also of xtandi. He now takes gabapentin (neurontin) which helps tremendously. Doesn't eliminate them however but it does help. In his case, he can't be without the drugs.

[RayF in reply to Learning4him]

I'm curious, was your bf prescribed gabapentin for hot flashes, or something else like nerve pain?

[Learning4him in reply to RayF]

Hot flashes

[RayF in reply to Learning4him]

Interesting, had not heard of that before.

[RayF]

I had very frequent hot flashes, about one per hour, soaked t-shirt at night, for at least 8 months. They became less severe over time. I recently started intermittent fasting, and they have drastically reduced.

If he stops Lupron, his numbers will rise. He should also be on Zytiga or similar. Try to stick it out.

Be vigilant about healthy eating, it's hard not to gain weight on this regimen.

[Aynoy in reply to RayF]

I’m going to have my hubby try the IF. Thanks for the tip !

[Lookhigher in reply to Aynoy]

I'm going on my third year since diagnosis. I was on a reduced carb diet for weight control before the dx. My "manopause" symptoms have gone from crazy to tolerable since adding IF to my diet. I agree with RayF. Keep looking up and keep that monster under your control!

[EdinBmore]

Lupron can have varying side effects. Some men seem to have minimal and act like "what's the big deal?" Others, like me, are devastated by it. The only thing that seemed to help me was exercise. I had to force myself to go. I still do. Know what your husband is going through. I'm sorry for it. Rough road. Good luck to you. Edinbaltimore

[GeorgesCalvez]

Because of the way that GnRH agonists like Lupron work it is not possible to simply stop the drug and the effects stop.

The drugs stop the production of FSH and LH which stimulate the testes to produce testosterone, after stopping the drug you need to wait for the drug to completely leave the body which will take some time, then the process has to start all over again.

After a six months on Lupron the process is normally fairly rapid, it takes longer after eighteen months with some men never recovering. After three years recovery is very problematic with few men recovering to anything like normal testosterone levels even after two years or more.

[RonnyBaby]

I believe that a Lupron holiday is unadvisable.

His numbers (nadir) are too high to pass on the benefit that ADT offers, for those that need it.

The medical management pros need to manage his condition(s) better.

I was on Lupron for 16 months.

I am now on an ADT holiday, which I hope is permanent (numbers will determine that).

My understandng is that ADT withdrawal is lengthy - 'time on = time to withdraw' (about a 1 to 1 ratio is a good ballpark number to work with.

I found the SEs (side effects) of ADT intolerable, BUT, in retrospect, managing the side effects will be my focus IF I have to go back to ADT.

The hot flashes and mood changes were life altering for me.

Try estradiol patches for the flashes (I'm told they work well for most sufferers).

The mood changes are part of the 'male menopause' that occurs when the testosterone is suppressed.

That needs to be addressed to help manage the 'mind'. Anti-depressants might be the order of the day.

Wishing you the best - keep us posted.

[Wdoug]

I'm now 8 months off Lupron that I took for 3 years and still have a few hot flashes, some fatigue and still no body odor. Feeling better than I have in 4 years since diagnosis and radiation. Went to LA Fitness daily (13 out of 14 days) throughout the whole ordeal and am happy I had that habit to for some years. PSA still down as is testosterone -- they check every 3 months.

I'd suggest staying on for the suggested term even though not really pleasant.

Good luck and stay more positive.

[Boywonder56 in reply to Wdoug]

Wish they had emphasized excercise when i became a luprochan.....i try now but...to late....i was a carpenter and thought the manuel labor was enough....but nupe....

[MateoBeach]

Highly recommend Estradiol Patches, which he can start immediately while the Lupron is still present. Will see effects (improvement in symptoms, especially hot flashes) within a few days. Ask physician for prescription. Perhaps start with a biweekly estradiol patch delivering 0.10 mg/24 hrs. Most of the hormone is released/absorbed within 48 hours (depending on brand of patch). So try changing it for new one every 2 days rather than every 4 days. This can be adjusted up or down depending on symptom relief and estradiol blood levels.

Estradiol patches is even higher dosage can be used in place of Lupron entirely to achieve castrate T levels. See "PATCH study" info. Of course PSA and T levels must have ongoing monitoring.

ncbi.nlm.nih.gov/pubmed/126...

cancernetwork.com/prostate-...

[VictoryPC]

It's a great idea to get off if Lupron before CRPC occurs. Testosterone will will take 1 to 2 years to build.

[carbide in reply to VictoryPC]

Good tip for me. Thx.

[carbide]

Per the Hot Flashes. He should try

Venlafaxine HCL 37.5 (Gen. Prozac).

[Jimhoy]

Hi Mary

My 2c worth is maybe explain a little further the “many side effects”! ANYTHING used to stop testicular testosterone production will cause typical andropause (male menopause)! Be it hot flashes, no libido, mood swings, crying, brain fog, etc....! That would be either chemical or surgical castration. If his side effects greatly exceed those, as my and many other mens do, then you’d have to make a conscious choice between quality of life and possibly life itself.

I firmly believe that some men (me) are allergic to the actual drug thus contributing to one shitty ride!!! In this case, maybe estrogen (beware of cardiac issues) or although permanent, snip snip have both been said to ease side effects.

I’m on a QoL vacation now and it took over a year for most of my side effects to go away. Fighting to get my mind back is about all right now but as of Nov, I was only just getting my T back. Next test is next month🤞🤞🤞🤞and pray the T is higher yet!! But never mind 4.9.... if my PSA is 1.0 or 2.0 they’ll push me back on the juice!!! It’ll be a fight though!!!

Sorry.... Tough call to make!!!

Jc

[Geoff22]

I'am coming off lupron after 13 months. It was my third round of lupron and the most difficult. I think the side effects while on Lupron increase with time. My doctor told me that the withdrawl time is usually equal to the time on Lupron. I had 2 six months shots of lupron so I am expecting the withdrawl time will be 6 months

[Sillymary73 in reply to Geoff22]

Keep us posted!

Best of luck!

[Jimhoy in reply to Geoff22]

Not to burst your bubble, but........ your last 6 month injection will keep you castrated for 6 months and then some!!! My last 3month dose lasted well over 9months. My 6month blood work T = 19 and PSA >0.1! Full ADT still. During 20 mo ADT, T was always 18 and PSA always >0.1! Another 6 months later (1 year total) and T was 105 and PSA 0.1! Castration T is 50 and normal is 300 to 700 +/- so just then starting come back and actually felt side effects decreasing!! However, some (cognitive / executive and verbal agility) seam worse!!!

Best of luck

Jc

[Sillymary73 in reply to Jimhoy]

Do you mind me asking what your Gleason score was?

[Jimhoy in reply to Sillymary73]

I studied that night but only got an 8!

[Sillymary73 in reply to Jimhoy]

My husband’s is 7, 18 months ago

[Jimhoy in reply to Sillymary73]

Do I call you Mary or Silly?

Keep a little room for humor!!! Yes.... that was humor!!!

What is his testosterone level. Can we assume he is castrated?

I guess most cases are different but I think most would agree that, with his Dx, it would be very risky to stop ADT with the chance that those little buggers regroup and attack!!!!!

The best I’ve gotten out of my Dr’s is “there’s no sign of active cancer right now”. Ray Charles can see through that line!!! I live in fear of the inevitable but, right now my plan, should I have to make one of the worst decisions of my life by agreeing to go back on Eligard (Lupron equal) is to minimize the amount of actual drug that I’ll be taking. You can’t be too castrated!!! I know from historic info that I don’t need an injection every 3 months to remain castrated for 6 to 9 months. If as I suspect, I am allergic to the drug, then I sure as shit don’t need 3 times the toxins in my body. Will it help with the my outrageous side effects.... who knows? I pray it will!!! I got to get back to (the old) normal first before I could tell!!!

Anyway, that might be a move he can make!!! Lupron injection then the next one as his T starts rebounding!! I understand they do something similar in Eu. You know where Big Pharm doesn’t rule the roost!!!

Summary;

I can clearly say I saw the typical side effects going away at the same time as my T was coming back up. Blood tests can tell you when thats happening. If the PSA starts rising with it, then you have some tough decisions to make!!!

Hope this helps but... I’m not a doctor. These comments are based upon my condition and my intentions. I’m serious when I say that ADT took my mind away. I learned sooo much on the site but can’t recall crap. Got a butt load of notes though!!! Also, I have a dynamite wife who keeps my shit together too. Sounds like your husband and I have something in common!!

God bless you for what you are doing.

Jc

[jimbob99999]

I was experiencing very severe hot flashes. Been on Lupron for 2.5 years now. My PSA down to 0.7 at last test. I suspect it is at or near nadir. My GP prescribed 37.5mg Venlaxafane, which was then increased to 75. Still get hot flashes, but significantly reduced severity and usually only around bedtime. They don’t wake me up any more.