locking fingers and joints

[Sunnysailor]

Hi - Asking the group for some input related to ADT joint side effects. Has anyone switched from Lupron (LHRH) to Orgorvx/Deralix (GnRH) to alleviate side effects?

My husband has developed side effects making his day to day functioning more difficult. He has been on Eligard/Lupron for 14 months since he was diagnosed with APC. He also had chemo that led to Chemo induce peripheral Neuropathy, which he is on Lyrica for.

All throughout his treatment he has joint pain but in the last 3-4 months it has become more troublesome. His finger joints are the worst- painful, swollen and now the joints are locking. His thumbs are locked and completely immoble making it impossible to grip on to anything. He can’t grip on to railings, so he is losing mobility because of this. Recently I had to start helping him to put on clothes, especially socks.

We spoke to his Medical Oncologist's PA about this. She did test for Rheumatiod Arthritis and it was negative. She had him try a burst of steroids for a week to see if it would help. It did help but it imediatly went back to being bad again. She said long term steroids are not recommended. We have been playing around with Advil and Naproxen but those seem to be tearing up his stomach.

I did search the forum and see some mention of joint locking. My question is has anyone experienced it to this extreme. Any ideas on what might work to help? Thanks in advance.

[tn12]

I had this issue. Trigger thumb. steroid injections only helped temporarily. Then I had trigger finger release surgery, which resolved the issue.

[Sunnysailor in reply to tn12]

Thanks for letting us know that the injections were short lived. I don’t think he is jazzed about surgery but it’s good to know. Appreciate your response.

[tn12 in reply to Sunnysailor]

The surgery wasn't as bad as I anticipated. It was less than 20 mins. Minimal discomfort.

[Huzzah1]

My fingers get very stiff when I sleep. When I wake up and my fingers are straight, it takes a lot of effort to make fist and it hurts. When i mentioned to my MO, he nodded and said he calls it Tin Man syndrome. He said it was common.

[Sunnysailor in reply to Huzzah1]

I read him your comment and he said tin man is spot on. Thanks for your response.

[Professorgary]

stay away from nsaids that are non cox selective. Ask your doctor for a celecoxib prescription. Also supplement with curcurmin if doc approves. It takes up to eight weeks to see the full benefit so be patient. Celebrex/celecoxib does not block the Cox 1 enzyme which protects the gastric track. It only blocks the Cox 2 enzyme which is inflammation. Also have his magnesium level checked and supplement if needed. I suggest the magnesium and curcumin for heart protection as nsaids can cause heart issues over time and when I first started nsaids it caused heart palipations which went away as soon as I added magnesium. Keep an eye on bp because nsaids can raise it and curcumin and magnesium will lower it. God bless.

[Sunnysailor in reply to Professorgary]

Thank you. On the list to discuss with oncologist. Appreciate the magnesium tip.

[Sunnysailor]

thank you for your response, did you have this finger issue?

[Professorgary in reply to Sunnysailor]

No. My problem has always been more with toes and calves, however it has happened with fingers on rare occasion. Make sure to measure the amount of water consumed each day. I use a 24 ounce stainless steel bottle and always drink 2 a day with 2 cups of decaffeinated coffee and 3 a day when I am doing something that causes sweating. The extra water is also needed if Dr approves curcumin to keep the kidneys flushed. Before curcumin my kidney gfr was in the 80s and was running 117 until I added berberine which dropped it to 100. I have since stopped hctz because berberine is a diuretic.

[T911]

While on Orgovyx I developed bad hand issues starting around 12 to 13 months. I don't think switching to Orgovyx will help him out. Prior to the hand issues I was having joint discomfort when starting to move after sitting still for awhile. Tin man syndrome is the perfect description. As it was explained to me testosterone is somehow involved in carrying the signal for certain cells to produce lubrication for the joints. It was suggested I try a Glucosamine Chondroitin supplement and that it would take awhile to notice the effects. It seemed to help somewhat. Totally cleared up the tin man problem and a slight hand improvement. I have seen some definite improvement since discontinuing ADT. Though I am still having hard time dealing with shoelaces and door knobs in the morning the rest of the day is easy.

[Sunnysailor in reply to T911]

Thank you, this is very helpful and appreciate all the details. He’s on ADT until it fails as his PSA never went above 6.3 when he was diagnosed with metastatic disease at 61. His oncologist says his mutations make it more aggressive and stealthy. He has responded well. We will ask about the glucosamine and celebrex at the next appointment. Again, thanks for your response.

[Brad70]

I’ve been on ADT with Elligard and Nubeqa for two years. My hands were getting stiff and sore and fingers beginning to lock at times. I began using this protein powder at one scoop per day (scoop included in container). Now, after finishing one container, my symptoms are much better.

Protein powder

[TJGuy]

I had more trouble on eligard than Lupron and was told by care team at Mayo that that was common effect among patients.

[RMontana]

Sunnysailor, indeed you can get 'trigger finger' during this lovely treatment regime...here is a good discussion thread on this. My reply is buried inside somewhere...take a look. TNX Rick

healthunlocked.com/advanced...

[j-o-h-n]

Take a peek at "Avoid the Tin Man Syndrome - 3d Fitness" site in old fashioned Papa Internet.

Good Luck, Good Health and Good Humor.

j-o-h-n

[fast_eddie]

I haven't had these issues and I was only on eligard six months and that was years ago. A few things I would suggest as an experiment: glucosamine-condroitin, creatine powder, iodoral 12.5 mg (an iodine supplement). I take all of these but the iodoral sparingly (half tablet every other day). I hope he finds some relief or an ADT that doesn't cause these side effects. I had to discontinue taking finasteride -- it caused extreme dental sensitivity.

[Kaliber]

I had sporadic locking of finger joints after about 24 months of Lupron. That was 4 years ago. Nowadays, I only have very stiff finger joints on my right hand mostly….. the joint freezing seemingly gone. This at the 6 year level of lupron. I started transdermal estrogen patches a while back which has seemed to improve my hand / finger joint stiffness. Now I can close my hand and make a tight fist again.

❤️❤️❤️

[Sunnysailor in reply to Kaliber]

This is helpful. I was reading about the patch and stampede with patch arm trial today in Great Britain. It actual uses Estrogen Patches instead of Lupron to stop testosterone production. They side effects and cardio issues are less but the draw back is gynocomastia (breast development). Did you have any other issues with the estrogen patch? Any dosage associated with them.

[Kaliber in reply to Sunnysailor]

I

my ADT treatment is lupron xtandi. Been on it over 6 years and still have my cancer asleep. . Trouble is I started sleeping 16-18 hours a day and I needed something to bring me out of it / wake me up. I started the lowest dose of estrogen in a patch and it helped dramatically. It also cut down on a lot of my joint and pain too.

I’m told little to no cardio or clot issues when you get estrogen through the skin. The ADT gives you enlarged breasts among many other changes …. “ on top of that “ is even larger breasts by far with estrogen and additional weight gain. My dosage has been at .025 the whole time.

When you are thinking life and death issues …. breast enlargement isn’t in the conversation. I will say that there are some great kicky hand bag and and matching shoes that are catching my eye. Rotflol

❤️❤️❤️

[Sunnysailor in reply to Kaliber]

Thank you! I agree the breast issue is the least of the worries. I’m glad it’s working for you. It’s on the list to discuss for the next oncology appointment.

[lcfcpolo]

I've just been to a hand specialist this week. My little finger just bent in one day. He's going to do a hopefully minor procedure on my finger tendon which is too big. Looks like my ring finger on the other hand might be going the same way. He called it 'vikings disease ', I'm in the UK but not a viking.