Severe joint pain while on Zytiga + d... - Advanced Prostate...

Advanced Prostate Cancer

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Severe joint pain while on Zytiga + dexamethasone + temazepam (for insomnia from dexamethasone) along with xofigo and xgeva

JLS1 profile image
JLS1
22 Replies

Has anyone else experienced odd severe joint pain that moves around, comes/goes and doesn't respond to OTC NSAIDs or Tylenol? Fast acting OXY 5s help, but can't take them due to possible serious interaction with the temazepam.

After taxotere, then 1-1/2 years doing very well on Lynparza + Zytiga + Prednisone + Xgeva, PSA went up (last July - 5 months ago) so stopped Oliparib and switched steroids to dexamethasone (higher, 4mg. doses at first, now tapered down to 1mg) and added Xofigo for widespread bone mets. (had 4th dose 10 days ago)

I know the #2 side effect for Zytiga is joint pain, so perhaps this is the cause?

Does anyone have any suggestions for 'safer' joint pain relief other than maybe stopping the temazepam in order to take the opoids? ie., does turmeric work well for joint pain? Has anyone ever tried Arnica? (T Relief). I did a search on the Prostate cancer site and couldn't find any mention of arnica - something I recently discovered.

TIA!!

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Tall_Allen profile image
Tall_Allen

I use meloxicam + prilosec for knee pain (the prilosec prevents GI problems).

JLS1 profile image
JLS1 in reply to Tall_Allen

Thank you. Did you also find OTC NSAIDs and Tylenol didn't help?

Tall_Allen profile image
Tall_Allen in reply to JLS1

I tried them all to no avail.

It very well should be legal in every state. Don’t know about the Bible Belt but most others states should see the light.

Jimhoy profile image
Jimhoy

Been dealing with joint pains since about a year into ADT. I was grinning and bearing it thinking that with in months, I be off Eligard, thus the pain will go away. I assumed it was the cause based upon what I read and by rulings out other causes.

At one point, I thought I had a gout flare up (toe) in addition to the other pains. I took some Indomethacin that I had left over from a previous flair.

Within a day or so, my toe was perfect..... so was the rest of me!!!!! I shit you not!!!!!

I kept taking the script and notified my PcP of the development.

She renewed the script and things were good!!! I got shit done around the house, played sports with G kids, etc. all the old me!!!! Then she would not renew it for fear of organ damage. Wrote Rx for Meloxicam which after a month or proved to not get it done. Switched to Celebrex (current med) and No F&$king Good. Now she wrote Rx for Tramadol that suffocates me (? (Can’t catch my breath)). I stumble along with do nothing Tylenol.

I’ll be following this post closely for fresh thoughts!!!

The fact that it moves from joint to joint is mind boggling to most.

Weeks ago it went from my left knee then was in all my left side joints and now only in both shoulders. Knee, hip etc feely absolutely fine now, strong and like nothing happened!!!!

Jc

in reply to Jimhoy

Hey Jimhoy, I was one lucky cocksucker prior to

APC hitting me. Now I know what pain is. pain in no friend of ours. We pay a toll now to walk this earth.. I’m not a dr . But I can recommend through extended use myself high Thc oil helps a lot of woes. Not for everyone. Just something that helps me might help you too.. Between RT and adt tandom shooting

Pain like a great electrical short popping off at times all over my body... Sam-E helped me a lot with these pains. and lethargy too.

Jimhoy profile image
Jimhoy in reply to

The irony of this is worse than my mother calling me a son of a bitch!!!

I planned to go see the budtender today. Freezing rain kept me in!!!

Been saying I was going to do this for weeks / month. Didn’t want to use while I had the possibility of picking up G-kids during the summer then that turned into fall sports!!! Have vape from when I got my med maryjane card last fall but steering away from vaping with recent news articles!!

I guess while the weather outside is frightful, is a good time to try again!!

Plus G-kids sports are at night now, let their parents chauffeur them around! I’ll just show up to watch and have wifey drive (I’ll need to be stoned for that!!!). Too stupid to coach anymore!!!

Got to stock up on Twinkies too!!!!

Jc

in reply to Jimhoy

Hahahaha..! Your mom and mine must be sisters.. Aaahhh the joy of Freezing ..rain ...just watch out for black ice... you can buy a pac2 vapes flower. The vape problems are with poison used within like Vit-d that’s hurt many.. you know what you’re getting with organic flower. They add the d to stretch it and make more $.. cutting it with bad shit..nothing new there. Just keeping a smile on us is a

Winning hand brother. Many go down in emotional flames. I pulled out of that for now. Without my mm oil I’d be a mess . I’m still a mess but I find joy everyday .. Food munchies . I love em..I have no appetite until I indulge. Music and

Laughter are great

Meds too.. I’ll spit some beach nut in that dude’s pc ‘s eye ..And shoot him with m 45 .A country boy can survive. A great song by Hank Jr.. The purest form is dap.otherwise the pac is the way to go. Injesting is healthier than any smoke...I love to smoke weed with friends..my gorgeous wife is the same. Don’t eat more than five twinkies a day please . You might turn into Twinkie man..Enjoy the days we walk this earth brother.

JLS1 profile image
JLS1 in reply to

Lulu - VERY interesting about the Sam-E helping.

That just reminded me of the veterinary immunologist who told me she suffers from fibromyalgia. She takes only DLPA to feel 'normal'. Without it, she falls apart in excruciating joint pain all over her body. DLPA is an amino acid - a natural supplement. She recommended it for my senior dog for his severe arthritis. It enhances the effect of NSAIDs, so you can give a much lower dosage with DLPA. I was able to cut his NSAID dosage by 50 - 75%!! -with the same effect! DLPA has also been used as a natural anti depressant. Lots of info on the internet when I researched it 10 years ago. I recall the only side effect was that it may cause elevated blood pressure in some people.

in reply to JLS1

I haven’t heard of it .. a BP increase isn’t good .

JLS1 profile image
JLS1 in reply to Jimhoy

Thank you for sharing! Glad to hear much of your pain has subsided.

This is exactly what my poor husband is going through now. The pain became so bad the other night, he took a fast acting oxy 5, which literally knocked him out for over 24 hours! (which is why it's a last resort) I called the pharmacist to be sure it was ok, given he's been on the temazepam.

-ended up cutting the temazepam in half, given the potential side effects of mixing it with oxy. Temazepam can have nasty side effects, so we're going to try and get him off of it, (now that his dexamethasone dosage has been cut down from 4mg/day to 1mg/day). You have to be weaned off - you can't just stop it cold turkey. It was prescribed for the insomnia the larger 4mg doses of dexamethasone was causing.

He was so much better while taking the prednisone with Zytiga - side effects were pretty much unnoticeable! Dexamethasone has been difficult...rapid weight gain...insomnia...irritability...etc.

in reply to JLS1

Wow . It doesn’t sound pleasant. Anything to rid the pain.. pain and being irritable go hand in hand. The pain can grind us to a halt. I’m sorry he’s going they that .. we are just mad chemistry projects .. Take care .. Scott

in reply to Jimhoy

The indomethacin was great for my moms osteo arthritis for 25 years . But a few years ago at 90 years old her dr told her to quit because it has destroyed her kidneys . Her hands always used for master crafting needle point and such knarled up into a clinched position. After she stopped using indo.Now Shes 93 with stage #4 kidney impairment.She always touted the indo as helping so much . It works. For us why not ? . Just not for 20 years or more. I’m glad you found relief . Be well

zenbee13 profile image
zenbee13

Hi JLS1,

I've had those phantom pains with Zytiga, Lupron, and then when I began XTANDI it was excruciating. As many have said Cannabis helps a lot for me as well, however there is still pain. I guess I've accepted it as the trade off for still being here.

Peace,

Bees

in reply to zenbee13

Acceptance is crucial to

Survival .-Have a great day Bees...✌️

Baseball has the most sensible leadership . Great for them . Now come on NFL. I fear they’ll balk . Zero tolerance is the rule . This war against reefer Madness was just a way to enslave people of color that at that time were the main users ..The problem brewing is that the major tobacco companies are spending millions angling for position to take over . As a friend told me . Who the hell would buy anything from these scoundrels.Not me for sure.. Happy Hanukkah 🕍 Shalom

He was pure Jewish .. my savior... God bless you brother in the holidays and beyond. We all suffer . But we know love is king.. Get some Fla heat in those bones.. and watch out for the gators .If you get to fishin enjoy ! Shalom

JLS1 profile image
JLS1

Thank you! Medical marijuana is legal here in IL now, and soon, recreational marijauna will be too - effective Jan 1st. What do you think about CBD vs. the THC?

Pull out the big rod.. going to the seashore ..Bless Gusgold! May be be at peace wherever he is?

Demand La Indica! Indeed

Be well Nal . 🙏

Hec yah! Have a whale of a time Nal.. happy fishing grounds to ya....Make my day and send a pic.. also a story about “the one that got away” Block that L-4-5 .. 🐳

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