Overwhelming hot flashes. Orgovyx/Relugolix

[MobilityTech]

Ever since I had a Lupron shot three years ago hot flashes have been a part of my life. I had only one Lupron shot, and then I took a holiday away from it, as the 3 month dose lasted 9 months, and it really took it out of me. A year after the shot, I went on Orgovyx/Relugolix pills instead of Lupron which seemed much better in all categories of the affects. I've been on it now for a year and a half. My Dr had told me that for most people, the hot flashes decline after a year.

However for me, they are intensifying. They're not just times of getting hot and sweating. They begin with a sickening feeling all over, and if I don't quickly grab my battery fan and get it on my face, I become drenched in sweat. But underneath it all, also comes a flood of overwhelming tears that come from nowhere. This all lasts about five to ten minutes, but it all takes it out of me. I have 8 to 10 of these a day, not including nights. A very fuzzy brain much of the time goes along with all of this as well.

I guess I'm asking, does anyone else experience flashes like this? I'm leary of side affects of things to take to help with it, trading one set of issues for another.

On the bright side, the pills are working amazingly well. My PSA is .06 and holding, and for that I'm thankful.

[Tall_Allen]

I agree that all the pills and patches have side effects. But aural acupuncture has no side effects I know of.

[MobilityTech in reply to Tall_Allen]

I did not know that. I looked it up. Something to look into. Thank you!

[ARIES29]

I have much same SE on zoladex, but without the tears. Firmagon had less SE but was injection every month.

I guess this is the price we pay to stay alive.

[MobilityTech in reply to ARIES29]

It is worth the price yes.

[addicted2cycling in reply to MobilityTech]

MobilityTech wrote -- 2 years ago -- " I had my biopsy 3 years ago 3/4. I had a prostectomy............................. My question is for anyone that might have tried Luprin, and had similar issues, and opted for surgical castration to reduce side effects. Or comments from anyone who has had surgical castration. It wouldnt affect my sexual issues, as the nerves were damaged in my prostectomy ... "

WELL !!! Here we are 2 years later, and my reply that I gave back then is pretty much the same but now I'm 72.5 years old and almost 8 years since CASTRATION AND I JUST finished a 15.51 mile bicycle ride that I began at 3:38AM, yesterday was 43 miles and still no HOT flashes or some of those other physical/psychological issues.

Hoping you get things under control.

[lookingforamiracle]

I had drenching hot flashes for the first year on lupron. I had to keep a sweat towel with me when I went out. They would wake me four or five times a night. The brain fog was getting worse. I did not have the tears that some get, but my wife was tired of my crabbiness. I was down to maybe 18 to 20 times a day from a high of thirty, but I was exhausted. I learned on this forum that with no testosterone I also have would very low estrogen and that is why I was experiencing manopause. I also learned about the Patch trials in the UK that demonstrated significant relief from all this with a low dose estradiol patch. So I took the study to my urologist and he somewhat reluctantly went "off the range" and got me on a .1mg estradiol patch. It changed everything. I am still on it three years later. I sleep so much better, mood stabilized, I get a flash now and again but nothing like the previous intensity, and the fog cleared considerably, though I have my moments. I am able to continue working full time. I know nothing works for everybody, but estradiol has made a huge positive difference in my quality of life. All the best - Will

[Boywonder56 in reply to lookingforamiracle]

What bra size r ya.....

[lookingforamiracle in reply to Boywonder56]

I'd say training size. It's my stomach without the T that is my biggest challenge.😁

[Boywonder56 in reply to lookingforamiracle]

I agree...40 lb gainer her.....☹️

[SViking]

did you experience any breast development?

[lookingforamiracle in reply to SViking]

If you are asking me, it's hard to tell if it's e2 or simply lack of T, but is minor either way, with just a little tenderness a few years ago.

[London441]

How much are you able to exercise?

[Murph256]

I have hot flashes, emotional swings and depression on ADT. They seemed worse on Lupron and better on Orgovyx, but it could be my imagination. I’m currently enjoying a vacation, but I’m sure I’ll be back on ADT soon. I’ve resigned myself to the fact that I’ll live with the side effects for the rest of my life. Exercise and healthy eating help. Good luck!

[Derf4223]

My MO has me on Venlafaxin and I exercise 2-3 times every day. If you go the Venlafaxin route the recommended dose is 37.5 or 75 mg, whichever works best. GL

[EdBar]

Estradiol patches do the trick for me, I used to get about 15 wicked hot flashes per day (yes I counted one day), and I know that sickly feeling you’re talking about before getting one. Since using the patches I rarely get one and they also help with bone health. Since they are absorbed through the skin there’s no cardio risk like there is with the pill form which is absorbed through the liver. The patches were originally prescribed by Snuffy Myers about 8 years ago, I’ve been using them ever since.

Ed

[noahware]

Adding back E2 as suggested by several above should give addition benefits besides hot flash reduction (like preserving bone density), and minimal negative effect that you are rightly worried about.

Gabapentin (300-600 mg) and certain SSRIs work for some men, too, but those drugs may impact you in others ways both positive and negative.

[Shorter]

I never had much trouble with hot flashes, but I would also recommend low dose estradiol if your Dr. is OK with it. I haven't had any hot flashes since I started getting E.

[de-luke]

I has some relief with Black Cohosh en.wikipedia.org/wiki/Actae...

[KocoPr]

it’s beyond me why the oncologist measure your T but never measure your E2. I was on lupron for 4 months with no hot flashes. I am now on Orgovyx still no hot flashes but i had to ask for E2 to be measured which turned out do be normal range. I will keep asking for E2 to be monitored. It just makes since.

[Joeym1040]

I had them for about 4 years. Every 45 minutes like clockwork. Gradually subsided a bit after taking Effexor (venlafaxine) but i stopped taking it. I had one wonderful year when i was in a clinical trial testing estradoil gel. Worked great for me, no hot flashes, no T, no hair on chest and below but felt great. Trial never published and i never knew how much i was getting. I am using the patch now and its better but not complete. Get pain in legs before hot flashes at night. I have a remote controled fan at my bedside and next to my recliner in TV room. I believe estradoil is your best bet for releif. Good luck, God bless.

[MobilityTech in reply to Joeym1040]

I use fans as well. You mentioned the pain in your legs at night in bed just before a flash. Some nights that goes on over and over for a few hours.The patch sounds like an option I'm looking into.

Thank you.

[Boonster]

I've been on Orgovyx for about 18 months, too. Like you, the most significant side effect for me has been hot flashes. But my hot flashes are neither intense nor lengthy nor numerous; perhaps three or four a day, each lasting about five minutes.

[icanwintwice]

the flashes are awful. been 8 months for me. brain fog as well. I get that awful feeling then its a sweat bath! sometimes five or six times a night and then 8 or so during the day. I just picked up some Gabapentin and have been on it for about a week and it reduces the number of flashes and the severity but seem to be having some erectile issues on it. Im gonna try the Patch! thanks for asking this question.....