MODERATORS - any chance of moving the second half of this thread
(/www.healingwell.com/community/default.aspx?f=35&m=3958585) to have it's own title? Although we are generally still discussing Lupron, it has veered away far OT from jliggett's initial 'observations' and (admittedly) I essentially hijacked the thread in response to what appeared to be Cary1963's first post on HW... though I see that he has been lurking for over a year.
Still, the discussion regarding Venlafaxine and Gabapentin is one that may be of great interest to many, or so it seems. I would like to reply to the last three posters but do not wish to take the thread further off topic. Plus some others struggling with ADT SE's might benefit from some of these replies. Thanks!
garyi said...
Excellent request, Rob!!! ADT side effects are a very hot topic.
I've been on Casodex for about a month, and my RO wants to start me on a six month course of Lupron, and commence RT two months after starting Lupron, continuing Casodex for the entire time. I'm overjoyed 
Okay! Here we go... I've tried to reconstruct the thread here (my apologies if I clobbered anyone's contribution). Please just jump in anywhere!
John_TX said...
I had a terrible time on Lupron - the "gift" that unfortunately keeps on giving
Amen to that. Only halfway thru and weight gain + manboobs starting to creep up on me.
Cary1963 said...
Good to hear other's experience with Lupron. I'm only on my second month but have experienced a high level of fatigue. It's a real struggle to make it through a day at work.
Cary - There are many threads here on the topic of Lupron and HT. Most guys report about
the same side effects... a surge of sexual energy for about
the first ten days ("Lupron flare") if not previously started on Casodex... frequent hot flashes and night sweats starting the second month and persist throughout. Severe mood swings and brain fog can be a big problem. Some put on weight and/or lose body hair.
The fatigue is something you can become accustomed to and accommodate the night sweats. I keep a fan next to my chair and a ceiling fan over the bed (very common in Florida). I asked my doctor for Venlafaxine for the mood swings and hot flashes. It really helps, but you may need to fight for it... I did.
Good luck with your SRT next month. Guys have varying levels of experiences with RT. You can search for past threads on these topics (HT & SRT) here and on other PCa forums. Any questions, just ask. And welcome to HW!
John_TX said...
RobLee said...
..... I asked my doctor for Venlafaxine for the mood swings and hot flashes. It really helps, but you may need to fight for it... I did....
The brand name is Effexor and I can also vouch for the drug effectiveness. It really mitigated my hot flashes/sweats.
Zzarth said...
Cary1963 said...
Good to hear other's experience with Lupron. I'm only on my second month but have experienced a high level of fatigue. It's a real struggle to make it through a day at work.
I'm on month 3 --- I've gained 20 pounds, and I can't sleep. However, I did come up with a "hot flash" emergency system for sleeping that I wanted to share.
I put a fan on low facing the bed, with a wall of pillows blocking the direct air flow.
If I start to feel a hot flash coming on, I can take a pillow off, and I'm suddenly hit with relief ... if I need more I can take a second pillow off, or create a window in the wall to blow directly on me... It's saved me a few times from fully waking up from a wonderful dream state
... Zzarth
Everton said...
The hot flashes from Lupron for me where unreal some lasting for 30 minutes. My Urologist put me on Effexor which worked for 5 months. I started to get them back and am now taking 150mg of effexor and the new one is Gabapentin which is at 900mg. She wanted to wean me off the effexor but I am having no more hot flashes so I asked to just leave me on both.
I have gained about 20 lbs lack in energy, but are going to a gym twice a week. Getting to sleep and staying asleep has been an issue, but got a prescription for some sleep meds.
Everton said...
now taking 150mg of effexor and the new one is Gabapentin which is at 900mg.... I have gained about 20 lbs lack in energy, but ... Getting to sleep and staying asleep has been an issue...
Speaking of Gabapentin and weight gain, I had been taking 300mg of Gabapentin (Neurontin) nightly for RLS, but now my ENT has me taking 1800mg daily (yes, 1,800/day) for neuropathic pain in my throat. I had been a steady 218 lbs for most of this year, but since sextupling the Gab I've shot up to 225, which appears to be my "new" stable weight. Nothing else has changed. It must be the Gab!
No problem sleeping here. The megadoses of Gab just knock me out. I am currently in the process of upping my Effexor to 150 as well. Be aware that withdrawal from SNRI's is potentially more serious than is even narcotic withdrawal.
Argent said...
I can second the advice on Effexor (venlafaxine). The hot flashes I had were so severe that if I had one while exercising I felt close to passing out. I had about one per hour. Plus they woke me up three or four times every night. The Effexor reduced them to a few times a day and none were as severe as before. But I quit it the first time I started. The doctor put me on 75 mg every day at bedtime. After four days I felt like a zombie. But after reading about it I learned that one must start (and stop) gradually to avoid side effects. So I restarted at 37.5mg per day without trouble and after a couple of weeks increased to 75mg/day. No problems then. It also improved my social anxiety, a lot. Made me a real chatterbox. I actually enjoyed the drug.
I quit the venlafaxine after I was off the Lupron for three months, expecting the hot flashes to be over but they can back. This in spite of the fact that my testosterone had gone back into normal range, though still only about half of my pre-treatment level. Now, more than 8 months off Lupron I still have mild hot flashes. Lupron is indeed the gift that keeps on giving. However, as a retired pathologist, I well remember getting many testis sent to me every week in the days before Lupron. So I'm not hating the drug that saved mine.
My doc also started me at 37.5 and upped that to 75mg a month or so later. It had a tremendous effect on my mood as well as cutting the frequency, duration and intensity by about
half. Note that 'social anxiety disorder' is also one of the indications for this drug. Glad to hear it helped you! Bummer about
the hot flashes sticking around though long after going off the Lupron.
Everton said...
RobLee said...
Everton said...
now taking 150mg of effexor and the new one is Gabapentin which is at 900mg.... I have gained about 20 lbs lack in energy, but ... Getting to sleep and staying asleep has been an issue...
Speaking of Gabapentin and weight gain, I had been taking 300mg of Gabapentin (Neurontin) nightly for RLS, but now my ENT has me taking 1800mg daily (yes, 1,800/day) for neuropathic pain in my throat. I had been a steady 218 lbs for most of this year, but since sextupling the Gab I've shot up to 225, which appears to be my "new" stable weight. Nothing else has changed... it must be the Gab!
No problem sleeping here. The megadoses of Gab just knock me out. I am currently in the process of upping my Effexor to 150 as well. Be aware that withdrawal from SNRI's is potentially more serious than is even narcotic withdrawal.I will take note of coming off Effexor when and if the time comes as I been told Lupron is my life long buddy.I was told by the pharmacist the Gabapentin would put me to sleep. I am still waiting.If you are taking the Effexor at night... and some do prescribe it that way for night sweats, then that could be what is keeping you up at night. It does have a stimulating effect. I take mine around 10AM every day. Be sure to take it with food to avoid gastric distress. I have Barrett's and have trouble with anything taken at night.