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What's your experience with Orgovyx (relugolix)?
Mods, if you think this redundant, please move or remove. I thought it might be helpful to have an orgovyx thread similar to the lupron thread...
Hello all, I've been reading a lot on this board, posting a little, since my discovery about a year ago.
PSA 11 at discovery 13 just prior to RP, Gleason 4/3, 8 of 12 cores, RP in Sept of 2001.
Margins clean, right pelvic lymph removed & tested clean, minimal invasion in blood vessels and nerve tissue.
PSA 3 mos later <.2
PSA 3 mos later 0.039
PSA 3 mos later 0.091 off to the radiation oncologist.
PSMA PET CT showed nothing.
Orgovyx prescribed and just had my markers inserted and starting radiation in about a week (40 sessions)
My Orgovyx experience so far...about 10 days in...
No particular weakness or fatigue so far, but, hot flashes and "restless leg" at night which is really hurting my ability to sleep.
I work out four days a week and run 2 miles a day after workout. I haven't noticed any weakness yet, seem pretty much the same.
Has anyone discovered any supplements or come across any research as to the restless leg issues and hot flashes? or more to the point, any way to minimize/mitigate? I'll of course talk to the docs on this but I'm looking for something natural, I'd prefer not to get into the "swallow the spider to catch the fly" medicinally.
I've also been taking it at 9am(ish), anyone notice any difference taking it at different times of the day?
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Hi, I just started my Orgovyx three days ago. Probably too early for any symptoms. I as taking it in the morning but my times are too inconsistent so I am thinking about switching to late night. How long before I start getting symptoms? Thanks
I've had my BP soar by 20/30 points --from 140 to 170. I've been told by my care givers and the specialty pharmacy that most Orgovyx users have no BP impact. The rise occurs both in the hours immediately after taking as well as spikes during the day -- I currently take BP medications (tenormin, lisinopril).
I've now been on Orgovyx for 15 months and I haven't experienced any of the side affects I was concerned with.
One of my concern while on Orgovyx was weight gain and maintaining physical activity. It was a pleasant surprise that I didn't need to make much of an effort to keeping my weight down.
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1 ReactionMy first significant hot flashes were at Day 41.
Please make sure to watch your calorie intake, and exercise ....... a lot........especially weight bearing to keep muscle mass and bone health. I also took a Vit D/calcium supplement.
Stay Strong Brother, we got this.
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1 ReactionThanks, that’s I’m 74 and am
fairly active. I’ll have work on the diet though. Take care!
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1 ReactionI think there is a lot of variability from one person to the next. By one week into my Orgovyx treatment (I'm about four months in now), my libido was gone, spontaneous erections were gone, and hot flashes had begun.
Issues with libido and erections persist. The hot flashes seem to come and go - I'll go for a week or two with no significant issues, and then (for example, about a week ago) I'll have a day or two with multiple hot flashes of the "sweat dripping down the back of my neck" variety.
I've gained between 15 and 20 pounds while on Orgovyx. Have tried to maintain an exercise routine, but it's winter here, and the Orgovyx and six weeks of EBRT have left me lazy as hell. Headed to warmer climes later this week and I hope to get back into daily exercise.
Only about seven weeks to go - looking forward to the Ides of March!
Hi and thanks for your comments. I’m starting so I really don’t have many symptoms yet. But let me ask you something. Have you been taking anything like viagra or sildenafil? I read it may not be safe. Thoughts?
How much longer you plan to be on Orgovyx?
2 yrs total, or 9 more months.
Hi,
Prior to starting treatments, I was taking a low dose (20 mg) of sildenafil "as needed" - or about twice a week. Since starting on Orgovyx, I've probably taken a sildenafil tablet three or four times and didn't notice any unusual reaction.
With my libido sitting right around zero, there hasn't been much need for the sildenafil. Last time my wife and I made love was in early October. I'm hoping things will start getting back to normal when I get off the Orgovyx in mid-March.