Hot flashes after Lupron: 7 months and counting

They did that last week at the ER. Tested 4 times over 5 hours, different points.

@pesquallie hello: just started Lupron. May I ask:what type of phy exercises did you do? How often? Any other preventative steps that may have helped ? Thanks.
(Similar age, also one Gleason8)

I'm more of a cardio guy - distance runner in college 45+ years ago - with minimal weights. The fatigue during radiation made me cut way back and now I'm building back up. I like to hike in the Phoenix mountains but the summer temps here make that impossible for about the next 5-6 months.

@topcat01

I work out at a local gym 3 to 4 times per week for just over an hour. I have a regime that includes about 45 minutes on a treadmill for up to 3.5 mph on a 10% grade (2.25 miles), 10 minutes total on 5 different weight machines, and finally about 10 minutes of a floor level stretch routine recommended to me by my physical therapist. I did this while burdened with Lupron side effects that included severe headaches, bone, muscle, and joint pain for 24 hours/day. I used to do 4.0 mph on the treadmill, but the side effects forced me to reduce my speed. Please note that my side effects are much more severe than anyone else I have heard of and they started with my second Lupron 3-month shot and they are just starting to slowly subside after 14 months. Yes, I also have the body sweats, brain fog, and hot flashes that everyone complains about, but they are nothing compared to my bone, joint, and headaches. From what I have heard from others who were on Lupron is that the pill route with better ADT's like Orgovyx had fewer side effects and recovery was quicker. I wish my urologist had used one of the newer ADT pills.

I believe that the Lupron shots are way too potent (overkill) and last much longer than the frequency they are prescribed. Since Lupron typically last up to 3 times the dosage frequency you end up getting 2 to 3 times the dosage really needed. In other words, a 3-month dose lasts six to nine months but they give you another 3-month dose in 3-months so that you are effectively being double or triple dosed.

@topcat01
Since you’re new to taking ADT, here’s some information on issues that come up.

Due to their different mechanisms of action. ADT which includes Orgovyx, Firmagon, Lupron, Eligard, Prostap, Camcevi, Lucrin, Zoladex, Trelstar, Pamorelin, and Decapeptyl can cause numerous side effects. Actually due to a lack of testosterone.
Hot flashes
Fatigue
Muscle deterioration
Bone weakening
Brain fog
Depression
Weight gain
Joint pain
Difficulty in breathing

Not all of these side effects occur to everyone on the drugs. Most of them are just things you have to be aware of and circumvent. I walk fast on a track twice a day, 1 mile at least, to help prevent bone weakening, fatigue and muscle deterioration. I also go to the gym three days a week (usually) and spend an hour with all different types of weight exercises. One thing that happens is people get a beer belly from the muscle deterioration, I do a lot of sit-ups to offset that.

Some people get depression but it is not common. It is easily treatable, according to people that have reported it on here and on Online Meetings I have participated in. If he has that problem Come back and ask for help, Or see a psychiatrist about doing something to relieve the depression.

Some people get no hot flashes at all. Others only have a few hot flashes and they are very minor. I had severe hot flashes for the first year on Lupron. As a hot flash was hitting I would feel a lot of fatigue. After a year, my oncologist prescribed a depo-provera shot every three months and it really stopped those hot flashes on Lupron. There are other hormones that can do this, speak to your doctor. If you have this problem, we can give you a list of drugs that can stop it. Ae doctor at a recent conference, put out a big list. I wear a Embrlabs.com Wave 2 device. It can reduce the hot flashes during the day and at night pretty much stops them completely. Megestrol has worked for some people.

I know one person that says eating tofu every day really controlled his hot flashes, another person in this forum said the same thing. Tofu does have properties similar to endocrine hormones but a lot weaker. Can’t hurt to try it. Seems they ate it daily.

According to a doctor that spoke to a recent webinar, many people on ADT, if they are staying on ADT for an extended period or have become castrate resistant should be taking bone straighteners. I took Fosamax for six years and I’m now on Zometa. That along with calcium taken daily helps keep your bones strong. Ask your doctor about this.

I have never gained any weight while on ADT. I get on the scale every morning and base what I eat on what I weigh. Skip lunch at times. Some people gain a lot of weight. The average is 5 pounds but some gain more and some gain none. Be aware that because you are on ADT you will find it very difficult to lose weight. That is one of the problems when you have a very little testosterone, you really have to work for it. Cutting out meals for weight loss often backfires by causing your metabolism to slow down and promoting fat storage as the body enters a survival-oriented "conservation mode". It leads to nutrient deficiencies, intense hunger causing overeating later, energy crashes, mental fatigue, and potential muscle loss.

I have completed 2 years of Lupron and I still have hot flashes. In fact, as I'm writing this, I'm having one. Sometimes they come in waves. I hope they will disappear soon. The only good thing was in the winter when it was cold they came in handy.

@maga
I took my brother about nine months, After the shot wore off, before his hot flashes became real mild. He only had six months of Lupron.

I was on for over six years and after seven months my testosterone was up to 50. You never know how quickly it will come back.

@jeffmarc

For me hot flashes are just a nuisance compared to my severe headaches, aching bones, and burning muscles. I still have hot flashes 14 months after my last 3-month Lupron shot but it is the extreme pain of my head, bones, and muscles that is really scary and possibly life threatening.

@pesquallie
You must’ve had your testosterone checked. Is it rising or has it just stopped rising?. 14 months should be enough to get a relief unless you have low testosterone still. Really unusual for someone to have this type of problem so long after stopping the drug.

@jeffmarc

Jeff,
After about 8 months without Lupron my testosterone rose from < 10 to 122 but after 3 more months had fallen to 115. Historically over the last ten, years before ADT treatment, my testosterone has been 296/208/341/341/227. My next test will be in 2 months, and I have not been able to get more frequent PSA and testosterone tests since my insurance only allows every three months. My PSA has been stable at < 0.03 since radiation treatment ended 10 months ago. I have had ED issues since my heart bypass surgery 19 years ago. I have had absolutely no libido since my second Lupron shot. Trimix shots was recommended by my urologist, but I have read that it will probably not work well enough with no libido.