Severe limb pain with weakness causing inability to use! side effects from Xgeva - first time after a year of monthly shots

[JLS1]

Thought I should post this in case anyone else here ever experiences the same:

We just went through a VERY scary night!! Pain and weakness began in my husband's R arm, where he had his Xgeva shot 3 days ago. (he said the shot really stung, and that had never happened before) That pain increased so much he couldn't use his arm, and his legs were also weakening so he could barely walk. The pain moved to his other arm right before bed and became unbearable, along with more weakness in his legs. He was losing use of ALL 4 OF HIS LIMBS!!

Long story short....we started with 1 naproxen (Aleve), which didn't do a thing, so added a 5mg fast acting oxy, which also didn't help, so we added another 5mg oxy. When that still didn't help, we called our Dr, actually, the Dr. on call from the Prostate Cancer Team (at 1am!)...who advised Benadryl, and if needed, extra strength Tylenol. So we added 50 mg of the Benadryl and 1 extra strength acetaminophen, which finally brought relief. Today he is MUCH better, but completely exhausted. Legs feel almost normal, and most of the pain in his arms is gone. Thank God! Dr. said next time he'll need to be given meds (ie., benadryl) right before his shot to avoid a recurrence. My husband has never had any problem taking the xgeva shots until now. So strange, and SCARY!!

[LearnAll]

My guess about what might have happened is that the injection needle went thru a nerve and delivered the meds in and very close to nerve. The fact that he recovered tells us the transient nature of this nerve palsy. This is only one of the likely possibility and there may be other explanation.

[JLS1 in reply to LearnAll]

That could be. Also, he had severe pain in that same arm, which the shot was given, about a week earlier from lifting very heavy luggage - going from plane to taxi to train, etc....so we thought that shot may have just 'reannoyed' that arm, or perhaps he injured it worse than thought. The legs becoming more weak was concerning, but we just returned from a trip overseas, which took 21 hours of travel on the return - hard on the knees and legs being cramped up for so long, with little activity. It wasn't until the problems moved to his other arm, and OTC meds weren't helping, that we knew for sure something was terribly wrong. VERY scary!!

[JLS1 in reply to LearnAll]

His legs 'feel' almost normal, and are very slightly improving but he still has severe fatigue with severe weakness in his arms and legs, and still some pain in both biceps. It takes a huge effort for him to walk around the block and he doesn't have the strength to just stand. His gait is looking more normal, just very slow, vs. slow shuffling. This is SO odd the way it came on so suddenly.

[tango65]

It seems the doctor believes he had an allergy reaction to denosumab since it treated the episode with benadryl. Denosumab could be associated with allergic reactions. They usually are rash, itching/swelling (especially of the face/tongue/throat), severe dizziness, trouble breathing etc.

[JLS1 in reply to tango65]

yes, the Dr. did say it wasn't a common reaction.

[tango65 in reply to JLS1]

The important thing is that he responded to Benadryl. Even when his reaction was uncommon, it will be important to pretreat him with Benadryl before the following doses. Best of luck in the journey.

[JLS1 in reply to tango65]

His recovery is extremely slow. He still has extreme fatigue and weakness.

[j-o-h-n in reply to JLS1]

Although it isn't a common reaction... it sounds very serious and I think the doctor should have warned you about that one.... But I'm picky, picky, picky. Well I'm glad to see your husband is okay now.

BTW when I take a long flight I usually stand up in the rear of the plane for at least half the trip (they won't let me stand on the wings) so I can ease up on sitting in those cramped seats.

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 07/29/2019 5:07 PM DST

[JLS1 in reply to j-o-h-n]

Those airplane seats are just awful, they're inhumane! That's not easy to stand so long either, good for you! Impressive!!

My husband's improvement is very slow. He's still suffering extreme fatigue with weakness in all limbs and still some pain in both biceps. SO strange!!

[j-o-h-n in reply to JLS1]

Sorry to hear that..Lifting heavy luggage didn't help.... Meds will kill us... so will those airplane seats unless you're in first class. Flying today is like riding in a Greyhound bus in the sky. I sure hope he recovers soon from his side effects.

Give him my regards (to you too).

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 07/30/2019 11:25 AM DST

[JLS1 in reply to j-o-h-n]

Thank you John! Fortunately, today he feels much better, mostly because he has much better use of his arms, and his legs are continuing to strengthen. Now his main concern is jabbing pain in one knee returned. All SO strange! We'll see what his scans later this week reveal. Hopefully nothing scary.

Good luck to you too, and everyone else here! Sure seems like much better days are just around the corner with encouraging news from some of the clinical trials.

[j-o-h-n in reply to JLS1]

Tell him the Jabbing pain in his one knee is probably KNEEMONIA... Hope he smiles..... Hopefully his scan results are favorable. Yesterday I received a call from my dermatologist at Sloan Kettering that a biopsy turned out to be negative. We live from one test to another... Yes, maybe a cure is around the corner....From our lips to God's ears..... so -

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 07/30/2019 12:05 PM DST

[JLS1 in reply to j-o-h-n]

That's GREAT news John, so happy for you!

Yes, we do live from one test to the next, and while doing that, we've learned to live more in the moment.