ADT and muscle joint pain: See my... - Advanced Prostate...

Advanced Prostate Cancer

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ADT and muscle joint pain

mike__c profile image
34 Replies

See my treatment history in my profile. Currently, my only treatment is quarterly Elligard since 3/21. PSA is currently undetectable as of 1 week ago. Over the past year, I have definitely felt some effects of fatigue. Not as much "get up and go" as I once had, but it has not been debilitating. I work 4 days a week. Beginning in early April, I began to feel joint and muscle pain in legs, arms, hands, hips, feet, and back. My GP ran CBC, Metabolic Panel and inflammatory markers. I even had a abdominal and pelvic CT (for another issue). All testing came back normal. 7 weeks later the pain continues. My work involves standing and moving around for about 7.5 hours, occasional lifting (5-20lbs), but nothing too severe, and yet each work day I feel as if I've just completed a 25 mile through hike on the Pacific Crest Trail. My medical oncologist seems confused as to why a side effect like this would appear 1 year into treatment. My providers are shrugging their shoulders. 7 weeks into this and I'm getting depressed. I was expecting fatigue, but not constant pain. Anyone have similar experience or suggestions?

Added detail: I added Zytiga to my treatment in 6/21. I discontinued it due to severe fatigue and lethargy (not pain) in 11/21. I began to taper off of prednisone around Christmas. I tapered slowly until end of February when oncologist suggested I finish the taper and stop. So I stopped prednisone at the tail end of February. Oncologist suggested that maybe it was possible that prednisone was masking this elligard side effect while I was taking it. That was her only guess.

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mike__c
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34 Replies
Tall_Allen profile image
Tall_Allen

Are you taking statins?

mike__c profile image
mike__c in reply to Tall_Allen

I am not.

Tall_Allen profile image
Tall_Allen in reply to mike__c

Does anything give you pain relief? Prescription NSAIDs?Neurontin or Lyrica? THC?

mike__c profile image
mike__c in reply to Tall_Allen

NSAIDs work moderately well. I am not sure how sustainable they will be. I am considering experimemting with THC. I am unfamiliar with Neurontin or Lyrica. Are they SSRIs?

Tall_Allen profile image
Tall_Allen in reply to mike__c

They are for neuropathy

in reply to mike__c

Thc in many forms helps my woes . 🍀

Forgive me if I am asking something you have already answered, I am not familiar with most medical terms but I wonder if they have tested you for Rheumatoid Arthritis (RH factor)? All of your symptoms sound very similar to mine when I was diagnosed with Rheumatoid. My doctor was very reluctant to run that test for me., but the results were positive and continue to be 10 years later.However, not everyone tests positive, even though they actually do have it. My brother has severe Rheumatoid but has never tested positive for it. It can be very elusive.

mike__c profile image
mike__c in reply to ConsciousDecisions

My doctor ran two inflammatory tests, CRP and Sed Rate. Both came back as normal and based on that he eliminated a rheumatoid condition.

MichaelDD profile image
MichaelDD

I have gone through the same issues with and after ADT. In fact taking the Zytiga Lupron and prednisone were very difficult. I am handling it through a pain relieving medicine. I'm currently on an ADT vacation because my quality was very poor on it. I work with a palliative care/hospice doctor that my oncologist got me to. For me at times it's debilitating. I was in a massive car accident that required back surgeries in my 30s. Had breast cancer and fought that at 50. APC at 61. Sometimes our bodies just can't take everything that's thrown at it.

lespaul123 profile image
lespaul123

Caffeine has helped me re: fatigue and outlook -

Muffin2019 profile image
Muffin2019

Strange, I have been on eligard for over a year,every 3 months and I work 4 nights for around 23 hours a week. I have not noticed any tiredness or fatigue but probably lucky, my job requires standing. I have in the past used Tylenol for joint pain from arthritis, it might help.

KocoPr profile image
KocoPr in reply to Muffin2019

Tylenol is not something to use on regular basis, it is for temporary pain relief. Very bad for liver, which we will have with all these nasty but necessary drugs we are taking.

MateoBeach profile image
MateoBeach

You have been on ADT for over a year. That often causes loss of muscle mass and strength even with plenty of exercise. The muscle and strength loss is severe it is called sarcopenia. I had this happen and it led to spinal disc collapses due to inadequate support. It can be hidden by the extra fat that ADT can also put on. (called sarcopenia obesity). I don’t know if you have any of this or if it might contribute to muscle pains from overtaxing reduced muscle mass. Just a thought.

Another possibility is even mild degrees of Vitamin D deficiency which is common in older adults. Here is an article. Maybe get your level checked.

ncbi.nlm.nih.gov/pmc/articl...

DSJo profile image
DSJo in reply to MateoBeach

I would agree that muscle mass loss is a major contributor. Eligard is recognized by the FDA as causing joint pain ( and many other things).

Carlosbach profile image
Carlosbach in reply to MateoBeach

For the first year on Lupron, Zytiga and Prednisone, my body aches actually lessened. During that time I was walking several miles a day, 6 days a week. During that time, I lost a lot of weight, but I also lost significant strength. I also struggled with fatigue - particularly in the first couple of weeks following each Lupron injection.

I've added weight lifting to my routine and have managed to stabilize my strength, but my body aches and pain have increased significantly over the last 6-8 months. Not sure of the cause: due to the Lupron shortage, my last two injections have been Eligard; my last scans showed an increase in arthritis in my joints (maybe due to the increased activity); and my stress has increased exponentially due to family stresses.

Thanks for the heads up, my health care team has not mentioned sarcopenia so I will bring it up to them.

Dont08759 profile image
Dont08759

Do you live in an area where Lyme Disease is possible? If you get tested.

pjd55d profile image
pjd55d

try cannabis - either with THC or not. I have gotten major relief from pain using it

Nite-owl profile image
Nite-owl

You may have underling inflammatory arthritis that the prednisone was helping but now that is gone you are feeling it .. go to a rheumatologist and get checked. Lots of people have co existing diseases beyond the PCA. Rheumatology is a huge field and lots of things that are not Rheumatoid and osteoarthritis existing and treatable! Many MO and Family physicians are not trained in this area like the rheumatology specialist

RP__ profile image
RP__

I radiation treatment for prostate cancer last year. Before that my joint in my fingers were stiffening and hurting. I also have a lot of arthritis in my family including rheumatoid. Before prostate treatment and after I requested GP prescribe blood tests for inflammation. All came back negative and the diagnosis from the GP was osteo arthritis. Over the last 6 months my index finger on right hand has gone sausage like, swollen, very stiff and painful. I went to a rheumatology doctor this week. She prescribed more blood work, but after looking at hands and fingers suspected me as having the beginnings of spondylarthritis and prescribed methotrexate. So, I suspect I had this type of arthritis prior to radiation and the radiation has aggravated it as radiation is known to do for arthritis.

Hemp seed oil is good for inflammation, as is Boswellia, Curcummin, cinnamon, raw honey. Lately I've been drinking a concoction of 1 tsp apple cider vinegar, 1 tsp ceylon cinnamon, 1 tsp raw honey and probiotic to help relieve pain in finger as well as taking other supplements,

Gabby643 profile image
Gabby643

Lowered Testosterone is the problem IMHO

in reply to Gabby643

Hypogonadism ! Whoo hoo! 😳

dhccpa profile image
dhccpa

I've been on Lupron only for 3.5 years. No pain, but I sometimes feel that the muscle-bone-joint connections don't feel as strong as they once did.

SteveTheJ profile image
SteveTheJ

I didn't read all of it but joint pain could be caused by a too-low cholesterol level so check that. For fatigue talk to your doctor about Provigil. It's helped me for the past several months, esp. in focusing.

j-o-h-n profile image
j-o-h-n

So much can be the issue. First of all do NOT get depressed. I'm getting my lumps right now also. I just try to "grin and bear it"....After being married to my ex-wife for 10 years all the shit is like a walk in the park. So thank that person upstairs that you're not room temperature and keep on keeping on...Keep smiling also.....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 05/28/2022 2:39 PM DST

mike__c profile image
mike__c in reply to j-o-h-n

Good thoughts. Thanks.

Hey Mike_ _c , welcome to my world my friend ! My hat off to you at 55 . I was 53 myself upon my 2015 #4 dx. My first shot was a one month eliguard shot . That took my Psa down . Then on to Lupron with tAk700 . I stopped Lupron shots in 17 with an orchiectomy . I’m still taking Tak -700 said to stop adrenal production of t . 7 yrs 3 t ,no Psa 6 yrs no signs of pc . Whoo hoo. ! Had tubes out of my kidneys due to pc tumors shutting me down . For 18 months I was told not to lift more than ten ponds . I went from 233 muscle to 165 and gaunt . I did cipro and other bad antis for constant UTI’s during that time . This destroyed my joints . With sarcopenia I lost all muscle . Then osteopenia depleted my joints . I Started prolia shots 3yrs ago for that . I had incredible muscle and joint pains for years as I depleted . I started a glucosomine chondroiten msm complex last year . It helped 70% with the joint pain . .no more muscle no more muscle pain . I have tiny cables where once was a big muscle. I went into chronic fatigue syndrome for my first three years . I started Sam- E then, and it picked me up from total lethargy . I still have little n r g . Partially due to nocturnia ,meaning I pee7 times per night never really getting a sound sleep . 7 yrs of this . I’m just happy that I don’t have any signs of pc . This is the new me ! Do anything to feel better . I salute you working . I could not . Been in poverty since 53 .. no cancer ? So I’m still here . I wish you well and relief for all of the symptoms from treatments we all suffer . Good luck . Keep swinging ! 🏜😎. Scott

Carlosbach profile image
Carlosbach in reply to

What a journey Scott

in reply to Carlosbach

What trip this life is? Just passing through! Keep trucking! ✌️

Carlosbach profile image
Carlosbach in reply to

Truckin', got my chips cashed in. keep trucking...

TJGuy profile image
TJGuy

MikeADT weakens every muscle in your body.

As time goes on you can get weaker and weaker unless your exercising to combat it. Weaker muscles don't support joints as well. Your spine as well or your knees as well, on and on.

I couldn't even think of trying a running motion on ADT, off it with testosterone again, it's completely different.

While Elligard and Lupron are considered the same, the side effects they can have on you can be vastly different.

Elligard kicked my a@@ with stronger side effects across the board. You might want to try Lupron and see if it affects you less, this is often the case.

Other ways to lower testosterone might be tried as well.

However tiredness, weakness and many other side effects are the result on lowered testosterone.

You may also notice you can tweek or hurt your tendons and ligiments much easier with simple movements under this weakened ADT state.

DSJo profile image
DSJo

I have been receiving quarterly Eligard injections starting 04/21. I am experiencing something similar to you in the last month or so. I am retired so fortunately I don't have to work every day however after some physical work I experience joint and muscle aches for about 2 days. I think the fatigue and pain is a "normal" side effect but like all Eligard side effects I find the doctors and nurses are dismissive of any complaint or concern. Aspirin works best for me but like you I have concerns about taking it frequently. I'm counting down the days to the last injection.

in reply to DSJo

It’s all simply due to no testosterone in my case . 3 t ,for 7 years . Whoohooo! 😳✌️

Even muscles we didn’t know we had . I lost all muscle

I was diagnosed in October 2021. Gleason 9 in all 12 sites. Bone mets in pelvis, rib, shoulder and elbow. Started Lupron, Zytiga and Prednisone in November. Mild hot flashes at night, but no other typical side effects (thank God). But I developed terrible sciatica from October through December, and have general pain in pelvis and feet. Xrays and scans indicate slightly bulging disc caused the sciatica, and pretty advanced arthritis in pelvis, feet, and hands. Been taking Lyrica for neuropathy for several years, and the orthopedic doctor suggested higher dose of Lyrica for the sciatica -- that, plus physical therapy has given me basically complete relief from the sciatica. More recently began Metanx for neuropathy, and that helps a lot. Also take Celebrex for the arthritis. I have also found that two tablets of Tylenol Arthritis formula provides almost complete relief for 8 hours or so. But I only take it when the pain is bad.

My PSA has dropped from initial 15 to 0.04. Surgery nor radiation were options because it had spread outside the prostate and I had radiation for colon cancer 29 years ago. Genetic testing showed no inherited genes.

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