I'm brand new to this site. Really happy that I stumbled upon it during a search for, "Carpal Tunnel Syndrome relationship to Lupron." Not a lot of into on the subject so far.
I was wondering if any of the folks on this site may have encountered this so-called rare side effect? If so, what was done to resolve your specific situation?
Physical therapy, massage, nightly use of hand braces and hand/arm/shoulder exercises have provided some relief. Note the use of the word, "some." As moist, we use our hands a lot... CTS limits the use of my hands- troubling. Trying to avoid the CTS operation.
Thanks for any feedback,
Sorci Verde
Written by
sorciverde
To view profiles and participate in discussions please or .
Lupron effects my muscles dramatically. From the ribcage down I’m a Lupron - adt zombie . Stiff as a board, needing help to walk very far … shuffling my feet to walk. Very painful most of the time. Additionally , any repetitive motion I make , like typing this note, causes the muscles needed to do the job hurt “ just like” carpal tunnel syndrome. It can last for weeks.
Just lying on my side, the muscles on that leg hurt from the pressure , flip over and shortly , same thing. If I walk 30 feet my face turns red, I’m gasping to breathe , my bp skyrockets to 215/110 and I’m very uncomfortable. In my case it’s just the plain ole every day experience I have of doing Lupron Xtandi Zometa business. Otc painkillers have zero effect on it … Vicodin’s work really well.
If the Lupron wears off early after 80 days ( instead of the anticipated 90 days ) then …. After a few days , I can stand back up again, I can walk near normal, the diaphragm paralysis is gone, and life is pretty much back to normal along with the corporal tunnel like pains ( being gone ). Id guess there is nothing “ rare “ about it if you are getting Lupron , it seems to be fairly common in various degrees among guys in this group … and if it’s the Lupron …then it will most likely go away after the Lupron wears off .. speaking as to my own experience with it anyway. For me just part of every day life .. “ life “ being the keyword. This is my experience with Lupron, your mileage may vary.
Low dose estradiol patch helps with many of the SEs of ADT. I wonder if it would also help with some of your more severe symptoms you described? Might be easy to try and see. Kindness and compassion, Paul
Hey brother Paul …. My situation with my medical team is kinda strange …seems like it anyway.
I’ve been trashed by my adt side effects so much and so long, ( 32 months ) ..it’s how I wake up and spend everyday. I kinda just seem to shine it on and take it for granted nowadays … it’s my new reality that I’ve gotten accustomed to.
I almost forget how life used to be. I have the brief moments every ( around ) 80 days when the Lupron wears off when much of my life sorta returns to the way it used to be for a few days.
I was DXed “ real “ late ….. my first visit with my medical team led by my oncologist …… half shared with the hospice people they brought in and introduced us ( wifey and I ) to.
“ everyone “ except the wife wanted me to go into inpatient hospice … the wife and myself stunned with shock and grief.
That is how my team saw me then and it seems like “ that ‘ is how things kinda remain , more or less. I’m my oncologist “ special “ case …his highest psa patient and first patient to escape hospice ( for however long ) through adt.
Ive tried to bring up discussions like estradiol and several other things ….. he just puts his arm around me and gives me a grin and a hug and always says “ your PSA is good “. Then interrupts me to ask if I’ve finished settling my affairs and am I concentrating on a QOL bucket list while I’m able ? Am I getting out of the house with the wife and enjoying things on my QOL bucket list ( which I just accomplished one thing … I bought a etrike and hitch mount lift for it and made my first trip to see a section of the local zoo … many more trips planned ) . He seems to want to leave everything as it is and not introduce anything else right now , not rock the boat , it’s working …don’t fix it ………..plus … he leaves the maddening task of constant battling my rampaging bp, bg, microalbumin, etc to my poor , young , recently graduated GP . Yayahahahaya yayahahahaya.
I’ve learned to carefully balance my life on conserving energy, not stressing myself too much ( gotta protect that raging bp caused by exertion ) and judicious use of pain meds and I actually do pretty well considering. The “ hammer “ helps me a whole lot and is by my side helping smooth things and , over all, I manage a decent QOL … relatively speaking. Way better than the alternative as the hammer likes to say. Sure there are times now and then when I get tired of it all …whom wouldn’t, but I try to keep the darkness at a minimum. With careful effort , I feel pretty good physically and mentally …. Life ( the key word ) is good buddy.
Thanks for the great estradiol suggestion , Paul, I appreciate your effort.
Hi Kaliber, Reading your side effects of Lupron I ask myself what happened to quality of life? I guess that is the choices we make but there must be something better than living like that?I had one jab of Lupron & would not do it again & start Firmagon next week & will do away with it too if side effects are like that.
I tried estrogen cream & it actually stopped the PSA rising & started it going down but was told that is not quick enough.
Maybe these Doctors should jab it in their own body to see what it is all about???
Yayahahahaya yayahahahaya … I hear ya brother . If you’d seen me right before the adt , you would have thought the adt ( side effects and all) was a miracle drug and for me it is . There’s that …. But mostly if I let myself croak, the “ hammer “ ( wifey ) will kick my hind end into next month.
I have CT in right hand but I've assumed it was because I still go to work and am on computer all day. I have a wrist brace, if i wear it for a day or 2 and type more slowly it gives some relief. Never considered that it could be a side effect.
I started Casodex 12/18/2020 and Lupron soon after. The ADT side effects for me are as follows; HOT flashes, decrease in skin oil on scalp and upper body, (not a problem), decreased sweat, except during HOT flashes, dryer nose and less saliva. That's about all. I had quite a reaction to Cipro, which was used before and just after my prostatectomy July 1, 2019. Tendonitis my whole right arm, finger tips to shoulder. Wore one of those carpal braces and arm sling for 3+ months. It took some months to get my usability and strength back. Doing the recommended weight and strength exercises now, which helps upper body strength and muscle tone. I have the knowledge from a left shoulder rotator cuff repair to guide my recovery from the right arm incident.
I was on Luprom (every 4 months) since March 2018 until last December 2020. Beginning January 2020 I experienced numbness right hand (I could not even hold a pencil), mostly in the mornings after waking-up. I did contact my Primary Provider (not my Oncologist) right of way. At first I was advised to wear a strap (elbow-wrist) while sleeping at night for the first two weeks, together with strength exercises rotating/stretching wrist and fingers twice a day, while waiting for my first appointment with CTS specialist. At that time , after quick scan I was given a tighter strap, and to sleep on my left side allowing right arm to rest along my body without bending it, which would cause numbness. CTS specialist encouraged me to exercise wrists and hands with small weights to strengthen muscles. I still do them today, and numbness has diminished by 95%. I have not returned to CT specialist since March 2020.
Bottom line: CT scan did not show any irregularities. Nowadays I keep strap nearby just in case, and continue with daily exercises, including awareness of sleeping posture.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
I would appreciate a referral to a doctor at Stanford or USF
NEED THE COMMUNITY INPUT
asking for members' input
Looking for input on Chemo & Oligometastatic 
Need input on ADT, Brachytherapy, etc.
