Lupron withdrawals, is it a thing?

[Doseydoe]

I was dx in Dec 2019 with Stage IV APCa and put straight on ADT (Casodex and Eligard). Chemo soon followed and concluded with Radio in October last year, last PSA 0.01 and we are all happy about that. As I responded well this treatment process, my MO gave me the option late last year of not having my next 3 monthly Eligard shot, due 8 Jan 21. I decided to take him up on the offer and not have the shot. It's early days and I while I don't expect much improvement in my wellbeing until after 6months or so, my hot flushes seem to be getting more intense. I was wondering if anyone could offer any insights on what I can expect as the Lupron disipates and my testosterone hopefully rises. Thanks guys, 😎 DD.

[Tall_Allen]

I think that hot flashes is one of the last symptoms to dissipate. The brain dysfunction of the thermoregulation mechanism seems to persist even as T returns to normal. That's just anecdotal from my experience with patients.

[LearnAll]

Even after stopping Lupron , there remains a changed physiology of body and Brain for many months. Testosterone recovery can take from 2 months to 10 months in different individuals. In many men, side effects go away slowly .So.. expect all this to continue for next 3 to 6 months. But once T starts rising, your old self will start emerging once again . Flashbacks will go away, energy and motivation will come back . Mind will work better.

Unfortunately, the sexual capacity is last to recover ...and it does not recover fully.

[Doseydoe in reply to LearnAll]

Thanks LA, have you been through the experience?

[LearnAll in reply to Doseydoe]

Yes. My T remained less than 10 and PSA kept going down for 6 months after stopping Lupron and Zytiga. Side effects continued for 6 months. But once dear T came back I started felling like the man I used to be. Right now, I am a happy camper with total T 530 and PSA 0.5. Last lupron was 13 months ago. I am ready to jump back on ADT train if PSA goes above 4.0. Till then, no meds. Only herbs, spices, Veggies, lot of exercise etc.

[depotdoug in reply to LearnAll]

T = 530 is normal. Wish i had that again.

Only been in Lupron/Eligard Abiraterone for 16 months. I eat lots of veggies. Not sure about herbs spices.

[LearnAll in reply to depotdoug]

But I was on ADT only for 9 months. Testo is such a beautiful thing...when it comes back.. life becomes beautiful again with lot of energy. optimism, good mood and happy feelings. God give me high T for a long time...Pleasssss..e. Folks ..pray for me. Don't want to go back in ADT hell...

😀😀

[LearnAll in reply to depotdoug]

I give some credit of good T recovery to an Indian concoction of dozens of herbs. Its a dark brown paste like stuff...Its called CHYAWANPRASH.

[j-o-h-n in reply to LearnAll]

It's my shoe polish......

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 02/02/2021 10:27 PM EST

[Doseydoe in reply to LearnAll]

That is great to hear, good work 👍. I hope to have similar results, cheers🍻 and long may your good health continue.

[Don_1213]

I'm at about 7 months from when my last Lupron shot wore off. (G9/10, M0N0, 83Gy IMRT, 18 months Lupron, PSA - for over 12 months undetectable.)

The hot flashes are history. They were bad at the beginning of ADT, became better after starting Megace. Currently, my PSA is undetectable and my T is floating around 300 or so (up from castrate 6 months ago.)

A possible side effect of coming off Lupron has been urinary issues - much like the ones I experienced before PCa. Urgency, slow stream - the old man sort of issues. I'm on Flomax and finasteride, perhaps they're helping, but nowhere near normal. I see my urologist this Thursday - we'll see what he has to say. It may be a case of looking for a new urologist.

I've also had some coronary issues - I'm up to 5 stents at the moment, but only 3 are heart-related. Was that a residual side effect from Lupron? Perhaps it was made worse by Lupron, and unfortunately, going off it doesn't make it revert. The damage done is irreversible except by some sort of intervention (like stents, and/or angioplasty.)

Aches and pain? Hasn't changed much. Some of that is just due to a rather active lifestyle pre-PCa. Most is wear and tear, and some from repeated impact. Was it made worse by Lupron? Probably. Is it getting better now I'm off Lupron? The jury is out on that, I'm taking rehab for my inability to walk any distance. Things seem to be very slowly improving, but I suspect will never be where I was 10 years ago.

[Doseydoe in reply to Don_1213]

Thanks for your insights Don. Sounds like you still have lots of aches and pains. Be strong brother.

[depotdoug in reply to Don_1213]

7 months off Lupron wow. I cant wait for that. I just hoping i get back where i was exercising 3 yrs ago. Yes, i’ve had AFIB fixed by an RF cath ablation. May 2020.

Lets find out if my Mondays PSA lab goes down from 0.805 to 0.475 which it was last Aug.

[ecm1]

After 24 months of ADT my testosterone came roaring back after about six months. I soon noticed that I was behaving more aggressively and taking more risks - barking at guys not wearing masks in stores, watching a lot of porn, listening to thrash metal, smoking weed. I seemed to have settled back into typical 62 year old male behavior now. I don't know if anyone else has experienced this T surge behavior. It was a crazy trip while it lasted.

[Doseydoe in reply to ecm1]

Sounds like you were having a whale of a time. What happened to stop the "crazy trip?"