Post-Lupron, Zytiga, pred, radiation--pain in joints

[ElizabethMedora]

Hi All!

Husband has been off Lupron, Zytiga for about six months now and finally weaned of the small amount of prednisone a couple of months ago. He's been slamming supplements and kicking up his exercise, and testosterone is slowing coming back (at about 80 right now.) He is slooowwwly starting to get back some energy. But he's been experiencing pretty bad achiness in his joints, particularly his hands. Muscles too but that's likely a result of the recent increase in exercise. He doesn't want to increase his pain relievers--he wants to wean off that stuff, too. But at this point, the joint pain is getting bad. Is this a "normal" result of transitioning off drugs, before cortisol and hormones are back up and running? Any advice appreciated -- thank you!

[Finlay66]

I weaned myself off prednisone over 3 weeks but the joint pain got so bad I was put on low dose dexamethasone, which has largely eased the pain.

[ElizabethMedora in reply to Finlay66]

Did your post-pred pain resolve eventually? How long until you felt better? We weren't prepared for how challenging getting off the pred was to be!

[Finlay66 in reply to ElizabethMedora]

I tried to come off 10mg of pred in 3 weeks. Pain started when I went to 2.5mg. I think my Oncologist was worried that the inflammation would make the cancer worse. Perhaps the lesson is not to do it so quickly.

[6357axbz]

my joint pain was there but tolerable. Went away after a few months.

[ElizabethMedora in reply to 6357axbz]

Glad to hear it went away! I will let him know.

[6357axbz in reply to ElizabethMedora]

we’ll, not completely. I figured my arthritis had become worse over the years I was taking the corticosteroids so it didn’t go away 100%. Still, we’re all so different

[Lrv44221]

thanks for sending this message I’m so glad to hear when a pc patient is off those medications and on his way to no more pc. For his hand discomfort I don’t have any knowledge of drugs that might help him . I eas thinking he might want to try RICE therapy , which is rest ice compression elevation. Maybe that’s going to be enough maybe not 😊I hope it will give him some relief. I am glad he’s doing nutrients ( that’s my area of expertise).

[Hidden in reply to Lrv44221]

That's good news. My doctor is now talking about adding ADT to radiation. More awful side effects to deal with I'm sure. Hoping to control my PSA with a more natural approach.

[Lrv44221 in reply to Hidden]

already I admire your awesome attitude

Since I practice healing with natural modalities I will help you if you have any thoughts

.Food, water, exercise, oxygen, your belief and spirit nutrients and sleep is how I try to help people heal

. I also think our immune system is very important so we need to keep it modulated sorry if I was too wordy🦊🦊🦊🦊🦊🦊

[Hidden in reply to Lrv44221]

Thanks! Seems like a lot of stuff I read on the forum about natural solutions is kind of a "piecemeal" approach though rather than a comprehensive plan. I'm not sure there really is one for PCa. Just asking a lot of questions at this point.

[Lrv44221 in reply to Hidden]

it’s okay to keep asking questions 🦊🦊

[ElizabethMedora]

Thanks everyone for your input. Mostly he was worried if this was something other than post-therapy side effects. Or if it's something that will resolve itself eventually.

[PCASURVIVOR]

Diagnosed G-9 (4+5) in December of 2021. 4 tumors restricted to prostate. PSMA PET was clean so enrolled in clinical trial using 6 28 days cycles of Zytiga/prednisone (10 mg), Lupron and Niraparib. SBRT administered at the end of third cycle . Finished ADT 8/28/22 and tapered prednisone over 3 weeks. I had some arthritis symptoms prior to treatment, but since coming off prednisone, I have had significant joint pain - especially my hands. Many nights my hand pain will wake me up after 4-5 hours of sleep. I have tried gloves, oral NSAIDS, tramadol - mixed results. Recently, I have gotten significant relief by washing my hands thoroughly and strongly in very warm water and then applying diclofenac cream, per dosage instructions. I rub it in thoroughly and massage my hands for about 5 minutes. I am restricting the treatment to every other day to avoid skin SEs. I hope you get some relief.

[katartizo61]

there are many natural anti-inflams that might help. Protrolytic enzymes without food and herbal support with food. Well worth a try

[stillheretoday]

When I was going through chemo, I was getting Nuelestra to help with increasing my white blood cell count. One of the side effects is joint pain. MO said to take Claritin to help with the joint pain. I didn't believe that Claritin would work but I was wrong. It does. Your husband may want to try that.

[ElizabethMedora in reply to stillheretoday]

Great idea! Worth a try. Thank you.

[London441]

What and how much exercise was he doing during his treatment course, when the testosterone was suppressed?

[ElizabethMedora in reply to London441]

Not enough. He knows that. Tennis a couple of times a week, 1 mile walk a few times a week, and trips to the gym maybe 1-2x/week, but sometimes skipped it. He knows he screwed up. He's much more intentional about that now.

[London441 in reply to ElizabethMedora]

Great! That’s all that matters. A lot of guys make the mistake of thinking return of testosterone alone will work magic. Psychologically yes, but for most it’s only to a degree. It’s the exercise itself that matters.

Time off exercise when older is much harder to come back from, but amazing results can happen if we are patient and manage our expectations. More weights, get a trainer if you can at all afford it. Great luck to you both!

[ElizabethMedora in reply to London441]

Great advice! He is so ready to get mostly back to his old self and that's serving to be a great motivator.

[Hobierat]

I also developed sever hand pain post Lupron, Zytiga, prednisone and radiation. My hand pain started increasing 6-8 months after stopping prednisone. I was getting up each morning with hand pain an unable to close my hands and having no strength. I felt like I was holding two bricks. I connected it to the prednisone when I was prescribed prednisone for a viral infection and the pain temporally subsided. I sought a hand specialist and started physical therapy in May and with little improvement in my predominant hand the doctor diagnosed I was suffering from osteoarthritis of the hand, Dupuytren’s disease (Vikings disease) and trigger finger. I had surgery in September 2022 . I then started six weeks of physical therapy and after four months I am pain free full movement and strength.

[ElizabethMedora in reply to Hobierat]

Glad you are better!

[j-o-h-n]

Hello,

How old is your dear Hubby? and where are you located (city, state). Thank you!!!

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 02/01/2023 11:05 PM DST

[ElizabethMedora in reply to j-o-h-n]

Hi john - Hubby is 64, Southern California. So not likely it's arthritis, especially since he had no issues pre-PC treatment. Thanks.

[keepinon in reply to j-o-h-n]

You are back!!!

[j-o-h-n in reply to keepinon]

It was that or kill my wife......long and hard debating with myself.....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 02/02/2023 12:15 PM DST