I stopped Zytiga in March and tapered off the Prednisone for a couple weeks. By May I was starting to get muscle aches at night after lying down and periodically aching/tingling in the feet. Sometimes one leg or the other. Sometimes bi-lateral - especially with the feet. I suspected some sciatica, perhaps electrolyte imbalance, perhaps a circulation problem, perhaps just tight muscles from over-doing exercise now that I am regaining testosterone. The ilitibiol bands and glutes where definitely tight so I have been working on those. All of the above? I also wonder if I had some of this while on ADT, but it was masked by the Prednisone.
Has anybody else had this problem and any advice for solutions?
Josh
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jdm3
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😳😂Didn't think I could get pregnant after andropause. Hmmm.
But .... yes....working on electrolytes and hydration in addition to stretching, etc... Also adding a multi-vitamin for all the trace minerals, etc... but hard to find a good multi without some B12 or Folate, which I try to stay away from, even though I am slightly deficient in B12. Not lost on me that B12 deficiency and residual anemia from ADT probably doesn't help the muscles either.
I know how shoe shopping can drive a person crazy. At least my training bra is easy. I grab one, throw it on the counter, say it's for the granddaughter's birthday and I'm out the door. She's had a lot of birthdays this year.
For whatever it's worth, I seem to have the exact opposite. That is, I am on Lupron + Zytiga + Prednisone + a bunch of other stuff, and I'm running more than I have in years with fewer aches and pains. In my case, it's probably the Prednisone and Celebrex keeping the inflammation in check.
So, based on that, your "masked by prednisone" theory seems quite plausible. If you now have more inflammation in your back and/or sacroiliac joint, that could explain the sciatic like symptoms.
I appreciate the response. Yes, that Prednisone is good stuff. I felt pretty good when I was on it. Even skied hard in March (trying to keep up with the kid) with relatively few aches and pains compared to what I expected.
I am not on continuous Celebrex as part of any treatment, but I do take 100mg before I go to bed sometimes and that seems to help so the aches may very well be inflammation related in the back or nerves causing some tight glutes, etc.... perhaps in addition to electrolyte imbalance and over-exercising with weaker muscles. The ADT definitely took a toll so the body needs to adjust.
Happy running!
It’s the adt . I ve done different forms of adt than you have,but they clearly all do similar things to us . I’ve had shooting pains dull pains aching pains after treatments and continued use ..of adt ..but I also did 8 weeks RT..that affected me mucho .. lately I have had pains in my feet or toes that feel like a hot drill for about a minute .. it also hits me at random locations throughout my body .. massage ,accupunture,sauna or jacuzzi can help . A foot massage does wonders . I was having bad mood swings that were helped as well as muscle and joint pain by Sam-e . I ve taken it for about a year .. I get cramps whenever I haven’t drank enough water .. Heat helps the leg pain feel better . I got a neoprene wrapping heating pad with compression from “King “ products that really helps the pain in my hip when it’s bad . I’m happy that I’m not in urological pain as I once was..been there ,done that, don’t want to go back there.again .... we are all going to suffer ...it comes with the turf . Do any thing to rid yourself of the pain brother . Pain is the enemy .. Living in chronic pain isn’t really living well . I think your pain should fade ..mine has in my legs ..the hip is going so thats a different ..ball of wax . After drinking a hurricane while Walking down bourbon street we will be saying “ what pain” ? I think you can find a fix .my pain came in waves ..all in all I’m pretty good now . Peace brother.😂
Thanks Lulu. I will try the Sam-E in addition to the various other things. My wife may like that too for her aches and pains. I have a massage scheduled for Friday😌 and will double down on electrolytes and water. Hoping the aches subside as my depleted muscles recover from the ADT. And... Hurricanes, bloody marys, and mimosas will definitely help. Take care.
My Nat Dr says with the Sam-e that if it’s not for you you’ll know it right away ,your moods could get worse . If you’re over metalator already it’s bad and won’t work .. They sell it at Costco and every drug store in the nation . . Also it’s recommended not to eat meat ... he said there might be drawbacks or negative contractions for a meat eater using Sam-e . I dont know If you ‘re vegan or not? I think the pain will diminish .. Prior APC I surley used to self medicate occasionally including booze.. don’t do that anymore ... but in celebration I’ll be no prude ...looking forward to it in fact.. Take care ..
My husband had severe back back pain BEFORE starting Zytiga. During the time he was taking it, the pain went away. He stopped using Zytiga two weeks ago. He has had severe back pain at night about three times since stopping it. He takes Celebrex and Stilpane (codeine) for the pain. He also has to apply heat. Last night, just suddenly he broke out in a very cold chill with shakes and body aches all over. A hot bath, pain killers and heat applied eventually helped. I also wonder of these are withdrawal symptoms from the Zytiga. Add nausea to the mix.
Ugh. Never a dull moment. Was he on prednisone too and did he taper off that gradually? I suppose being off Zytiga is a positive thing, but sorry to hear about the back pain and and other stuff.
I was naive thinking I could bounce back quickly. But ADT just diminishes and wrecks the body in so many ways, that we need to be prepared for a gradual, and sometimes uncomfortable, recovery.
Thanks JDM3 but he is still taking prednisone. Dr said to stay on it. I read an article yesterday that there was a case study where a patient went off Zytiga and his PSA dropped ! Still hopeful
My husband was on zytiga/prednisone/xgeva/lupron for a year and has been off for a year now. We thought he would start to feel better right way once discontinuing the meds, but it took months. Even though he tappered off the prednisone, he had joint aches, old injuries started acting up, and he developed edema. I attribute a lot of it to prednisone withdrawal. That has all resolved now, but it was a slow process.
Hi Josh- Has your lupron (or similar medication) worn off yet? Have you checked your Testosterone?
My husband stopped Zytiga in May of 2018, had his last lupron shot then too, but it was a three month injection, so it wore off in Sep 2018. We measured his T as it came back:
Aug 2018: Testosterone <3 ng/dL
Sep 2018: Testosterone 13
Oct 2018: Testosterone 361
Nov 2018: Testosterone 450
Dec 2018: Testosterone 480
Fast forward to Aug 2019 and we are at 667
What seemed slower to recover was what we believe was the withdrawl from prednisone, he actually went back on prednisone a couple of times to get relief from the edema and aches and pains, and then tried to taper even more slowly to keep symptoms at bay. He was only ever on 10mg. Ultimately, it just took time. I'm sure being beat up by ADT contributes as well. Of couse, I don't know if your symptoms are the same cause as my husbands, but I thought I would provide a little more detail in case it is useful. Anyhow, he has been off all ADT for a year and PSA is just starting to creep back up and is at 0.051.
I do believe tapering off the prednisone caused more aches and pains than I anticipated. Also, I hypothesize that the muscles - especially major muscles like glutes and quads where I have the most aches - are getting used to being worked harder and having testosterone back and that may be a bit "shocking". I tend to exercise more in the summer and once I stopped the ADT, I probably did more than I should have thinking I could get back to where I was before. It doesn't work that way. The body gets wrecked and diminished during the ADT and it takes a long time to recover.
My last 3-month Lupron shot was Nov 2018. That took me through February 2019 and I finished out the Zytiga in mid March and did the pred taper after that. Total T was 5 in Feb 2019 and then above 600 in mid June. However, SHBG was high and Free T (the T that really matters) was low. I expect the Free T has increased some now though it has not been measured since June. I feel stronger (I actually have some muscles) and am getting hair back on my legs 😳. I go back for the next 3-month follow up in a few weeks and can give you an update.
A year is a pretty good vacation. Here's hoping it stabilizes at a low number.
We feel blessed to have a year off and still counting, especially since hubby was gleason 9 with mets to lung, sacrum and lymph nodes. We also use off label meds and other anti-cancer protocols. Not sure if this is why or if we are just lucky so far.
My husband's free T has also been low since stoping ADT, last reading in Aug is still low at 5.5 (range 6.6-18.1). DHEA-S also very low, that didn't really bounce back.
Husband on Lupron and now first shot of zometa making him sick for a week. WE are also scheduling for 8 wks of radiation as well.within the next few months. Doctor wants to put him on zytiga and prednisone after radiation treatment. how did you fair on all of this s%&t?
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