Lupron

[libraman]

63 year old, stage 3 prostate cancer diagnosed in 2013........ 42 radiation treatments and Lupron therapy. PSA 0.37 now... In 2016 I started having muscle, joint pain,shooting pains aching joints basically all over body. Doctors say the pain has nothing to do with the PC really lost for answers .Anyone else having similar problems? my thinking it's long term side effects from Lupron

[Dr_WHO]

What tests did they give you to determine it was not the cancer? Did they give you a CT/bone scan?

[Jvmott]

I went through the same treatment myself 4 years ago, and I remember not quite feeling myself for about 6 months or so.. i felt my body had gone through a lot and it take time for it to recover....hope this helps, and good luck with everything..

[westseraph in reply to Jvmott]

I've been on Lupron since around January of 2013. I was 48 when I was diagnosed. Other treatments (including other testosterone deprivation drugs) have come and gone. I stopped Lupron as part of stopping everything curative last month (due to bad effects of chemotherapy, not Lupron).

Lupron gave me an emotional rollercoaster, some brain fog, a very small extra bit of breast tissue. It kept me alive, though. My sex drive was almost gone, no erections since January of 2013.

My husband's response was: "You're alive. The rest is not particularly easy for you to go through. I couldn't possibly care less. You're alive."

There are lots of men here who are in different situations relationship-wise. If one person's story and information doesn't help or apply to you, good chance another man's will. Big benefit of the HealthUnlocked groups. Issues large and small. I've often found something here to help when other resources have failed.

[Jvmott in reply to westseraph]

Sorry to here you had to go through that too.. I can relate! My nerve bundles had cancer so they had to be removed as well.. so no erections for me either, I also have some incontinence .. all of which depressed me greatly .. my friends are always reminding me that I'm alive and I should be greatful .. I have to admit, sometimes I'm not!

[Sisira]

Stage 3 PCa means your cancer has metastatized. What was the PSA at diagnosis and your Gleason Score? Any higher PSA values? How long you have taken Lupron ( ADT )?

Some well known common side effects of ADT are hot flashes, Joint pains, muscle pains, softening of breast tissues, muscle mass loss, loss of libido etc.

Before my Prostatectomy ( RP ) at PSA 7.9 and GS9 I did a whole body Bone Scan using nuclear medicine. Before this I had pain in my bilateral shoulder joints like when you have frozen shoulders. The bone scan depicted suspicious metastatic tracer uptakes in my bilateral shoulders, T4 vertebra and the Sternum. Immediately my Urologist ordered a MRI to evaluate these findings. The MRI report confirmed that there are no evidence of Mets in these places. I went ahead of my planned treatment regimen - most aggressive : RP + IMRT + ADT ( 2 years continuous ) starting from March 2015 and ending in April 2017. Throughout the treatment period up to now my PSA has remained at 0.008. I had all the side effects mentioned above except hot flashes. Even now the shoulder pains. When your PSA is undetectable or very low due to ADT,you are in a "Catch 22"situation that you can't use a bone scan or CT scans to detect bone mets. But it is still quite possible that silently mets can cause bone problems. Therefore, there should be some reliable tests to establish the facts. The potential risk is high when your Gleason Score is high like mine.

Since PCa is a genetic malfunction, each individual's situation may not be the same. But by looking at other's similar experiences you can get rid of unnecessary worries or have better insights for resolving those issues by taking appropriate action well in time.

My PCa was staged : T2c No Mx , GS 9 (4 + 5 ) , Positive Surgical Margins

I love HealthUnloked PCa Support Group and welcome you too with a warm heart.

All the best!

Sisira

[Sisira]

Oh..Sisira is 70 years young.

[JamesAtlanta]

I have been on Lupron for a little over 2-years. I have most of the symptoms you describe. I'm 55-years old. The joint stiffness is the worst part for me. When I've been sitting a long time I have to stand very slowly ... like I am a much older man. But once I get going it gets easier.

I find the best way for me to loosen my muscles and joints is exercise. Plus it helps with the considerable muscle mass loss. I walk several miles per day. And I go to yoga. Yoga is very helpful because my joints stay loose all day. When I can't attend a class, I just get my mat out at home and stretch for 20-30 minutes. Helps a lot!😊

I have random bone pain, too. But the worst is where they found my cancer in my T8 vertebra ... it caused bone damage. The doctor said to think of it as a back injury that needed time to heal. It took a year for most of the pain to go away. I was radiated there about 30-times.

From the sound of your description of symptoms, much sounds like the effects of Lupron. But I agree with others that it is important to get tested to make sure you do not have any further metastasis.

Hope this is helpful!

[westjl2]

I have been on ADT for one year and have now had two rounds of Zometa treatments. The worst side effects I am experiencing are severe joint stiffness as well as hot flashes. It takes about an hour for my joints to loosen up every morning. Or like others have mentioned when sitting still for a while I find it very hard to get mobile again. It does get discouraging at times because I am staying very active but still have very stiff ankles and hands. I am 59 but most days feel like 89. However it beats the alternative.

[WinnipesaukeeBob]

Diet and supplements can also reduce joint pain quite a lot. You are probably already on a Mediterranean or Paleo diet to control your cancer. Avoiding carbs and sugar reduces inflammation and keeps weight down.

On the supplement side, enzymes like wobenzyme, serrapeptase, and nattokinase reduce inflammation. The herbs in New Chapter's Zyflamend are a good choice. And vitamin D3 at 10,000 iu or more aids pain free movement.

I am 5+ years on Lupron, Xtandi and Zytiga, with bone mets, and have no joint pain, and little bone pain. These things may help you find comfort.

[George79]

80 years old. On lupron 3 years. Other than hot flashes at night. No discernible side effects. Xofigo for pelvic bone mets. Aches and pains mostly arthritis. Full active life. Cuba next week. Baltic cruise next month.

[shealy]

Just finished my second full year on Lupron. All the usual symptoms but it is the best choice. PSA is at <.01 and holding so this is the normal I will know for hopefully a long time.

[cfrees1]

I had pain in my hands within a week or so from starting Lupron. For a few months, the pain was really bad, causing trigger fingers in 4, and would wake me up at night because they hurt so much. Couldn't tie my shoes or use a knife to cut steak because of the pain. I brought this up to my Uro and he also said he had never heard of that as a side effect. I'm 99% certain that it was because of the Lupron. Over time, the pain has decreased. They are still a little "stiff" in the morning, but nothing like the first six months or so.

[Crmp55 in reply to cfrees1]

Cfrees you are absolutely right about the trigger fingers, had the same reaction, did subside but still have stifness in hands. This after 4 years on lupron

[cfrees1 in reply to Crmp55]

Misery loves company. I have to say that i don't like it when doctors claim "I've never heard of that side effect" and then we come on this forum and lots of men have it.

[dsamuel1 in reply to cfrees1]

I have experienced the same thing and got the same answers from my uro. I thought it was something else causing the trigger finger (times 3) for a while, but when I received my second 6-month injection the symptoms increased. Now my thumb is affected. The fingers on my right hand are slightly inflamed/swollen. I went to a hand specialist and got a cortisone shot at the base of my first three fingers. Extremely painful. The stiffness went away for a few days, but came back. So still not convinced it was the Lupron, I went back for another set of shots 6 weeks later and the stiffness came back again. I'm through with the cortisone shots. I'm a right-handed tennis player so this might be why it mostly affects my right hand. I have very mild symptoms in my left hand. I am supposed to take two more shots at 6-month intervals. I hope the symptoms don't get worse. Thanks for posting! Now I know I'm not crazy.

[cfrees1 in reply to dsamuel1]

You are not crazy. I had 3 finger affected on my right hand and 1 in my left that wasn't as bad. I don't know exactly when, but I think by my 1 year anniversary the symptoms were much, much better. So give it some time and I expect your joint pain will decrease. Now, after 2 1/2 years, my hands are only a little stiff, but no triggers and I have strength enough to open milk jugs, grab and hold things etc. So there is light at the end of the tunnel.

[Hohman]

I have only been on Lupron for approx 7 months now..just had my 3rd ..3 month shot and at 56 yrs old I am now waking up w/o the the feeling that my entire body has arthritis. Before the Lupron I didn't have any of this at all! Doctors say they don't think it's the Lupron??? I say I know that it is! But it's keeping me undetectable so I guess I have to deal!!

[Hohman in reply to Hohman]

With

[Acirol in reply to Hohman]

Get used to the aches and pains... I'm your age and can't do any physical activity without getting injured somewhere...I went thru the same program with lupron, finished up a year ago. Since then hands and feet inflamation, muscle spasams, etc. No one know any relief... Hot shower then an epson salt bath helps somewhat... Gonna try an anti-inflam diet... keep u posted

[Hohman]

Thanks for the Reply...i know I am not insane! I hope the diet works and let me know because I may have to do the same

[Schaumburg]

64 year old male.

I am finishing my second year on Luprin. at $11,300 a shot you would hope it was a cure. Let's hope. Joint ache is greatest in my fingers. I feel as though I am 80. So far PSA undetectable. That's the good news. Hope joint pain subsides soon. Have to force my fingers straight or I fear i'll end up with claws.

[Boywonder56]

13,000.00...a shot 3mos.?.....or ten year dose....someones getting f'd.....i get 3mos...for 500.00...no insurance...my uro is high school friend...man the cancer is bad enough....no need to rob you of your money too....btw i agree with the docs playing dumb on side effects...but then they wouldnt get the trips to switzerland for "confrences"....just sayin....peace...bw

[Boywonder56]

I ll agree w lupron....2 yrs for me and i ditto all your complaints...and my doc said same...not from pc OR lupron i called bullshit on that.....get some pot...i.e...gummies or choclate....5 mg..in morning..helps greatly...the thing is lupron works....side effects suck...