Jubonnti reactions after first dose

Posted by leslieb52 @leslieb52, Jan 6 5:10pm

My doctor is recommending I start Prolia. I have done the other osteo meds, but my score just put me in the OP category with a score of -2.6

I am more afraid of fractures and ending up in a nursing home or wheel chair.
I am 73 and my rebound drug will be reclast.

How long after the injection does it take for reactions to appear?
Any tips?
Also, how tight is the schedule for the following shots at 6-month increments? Is there wiggle room?

If I get to ask questions, what should I ask?

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

Sequencing of these meds is very important. Make sure that the endocrinologist develops a treatment plan with sequencing in mind. Do your own research so that you can be a meaningful participant in your care.

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What does sequencing of medications mean?
I haven’t seen an endocrinologist.what can they tell me that my pcp can’t.

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More questions on sequencing.
Does that apply if I am not doing anabolic drugs? If I am only Prolia do I have to think about sequencing?

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Profile picture for leslieb52 @leslieb52

What does sequencing of medications mean?
I haven’t seen an endocrinologist.what can they tell me that my pcp can’t.

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@leslieb52

Sequencing means this:
What med comes first. Then what comes after the first med, and then the next, etc.
Have you been reading the input from the members who are sharing their experiences and outcomes? You will need to interview your docs...
Pcp or endocrinologist regarding their experience with and training in osteoporosis and treatment approach.

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Profile picture for leslieb52 @leslieb52

More questions on sequencing.
Does that apply if I am not doing anabolic drugs? If I am only Prolia do I have to think about sequencing?

Jump to this post

.

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Profile picture for leslieb52 @leslieb52

What does sequencing of medications mean?
I haven’t seen an endocrinologist.what can they tell me that my pcp can’t.

Jump to this post

@leslieb52 :I am only commenting on, "What can they (the endocrinologist tell me that my pcp can't?" I have been on Prolia for 5 years prescribed by an endocrinologist. I recently learned my sister-in-law has been on it for 2 years prescribed through her pcp. So in December she calls and mentions she's getting a tooth extracted and then next on her schedule, before visiting for Christmas, she needs to get her Prolia injection. I notified her that, no, you can't get a Prolia injection right after having a tooth pulled. Apparently, her pcp didn't mention this fact. So now she has to wait 6 weeks and go over the 6 month protocol to get her Prolia injection. I just can't help but feel if she were seeing an endocrinologist or rheumatologist for her injections this fact would have been made clear. I also feel (based on having family members part of an HMO) that if part of an HMO for health care being referred out to specialists is discouraged and more health interventions that should be handled by a specialist are instead in the purview of the primary care doctor.

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Profile picture for Maryann @mkoch

@leslieb52 :I am only commenting on, "What can they (the endocrinologist tell me that my pcp can't?" I have been on Prolia for 5 years prescribed by an endocrinologist. I recently learned my sister-in-law has been on it for 2 years prescribed through her pcp. So in December she calls and mentions she's getting a tooth extracted and then next on her schedule, before visiting for Christmas, she needs to get her Prolia injection. I notified her that, no, you can't get a Prolia injection right after having a tooth pulled. Apparently, her pcp didn't mention this fact. So now she has to wait 6 weeks and go over the 6 month protocol to get her Prolia injection. I just can't help but feel if she were seeing an endocrinologist or rheumatologist for her injections this fact would have been made clear. I also feel (based on having family members part of an HMO) that if part of an HMO for health care being referred out to specialists is discouraged and more health interventions that should be handled by a specialist are instead in the purview of the primary care doctor.

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@mkoch congrats on 5 years on Prolia. Any serious reaction or problems. I will be starting at the end of the month. Any tips to share? I am just trying to stay positive and not get obsessed with the scary stuff about negative tractions. I am staying with my manta, I am more afraid of fractures, then possible reactions to Prolia.
Thanks

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Leslib52: I have been on Prolia for 5 years. I never had an issue on Prolia. However, last August, my health care organization switched to a biosimilar drug. (meaning it provided the identical active ingredient that was in Prolia -denosumab-but as far as the binders, who knows?) For the first time ever I was miserable. 2 days later in bed all day with a heating pad on my abdomen. Cystitis. (Inflammation of the bladder.) As I already stated, I never had any side effects with Prolia, and when I was injected with Jubbonti (the biosimilar version) it had only been on the market for about a month. So I truly feel my health care organization was offered a kickback for their patients being Stage 4 testing. (Before FDA approval and availability to the public drugs go through 3 stages of clinical testing.) I informed my endocrinologist that I would never take Jubbonti again. She then got approval to allow me to continue on Prolia. I will say, my primary care doctor who prescribed an antibiotic for my cystitis, said to make sure with my next injection of denosumab, whether it be Prolia or Jubbonti, to hydrate well. Drink lots of water. On the National Institutes of Health website I found that the most common side effect of denosumab is a UTI (cystitis falls within that category) at a rate of 1 in 33. So drink lots of water after your injection for 24 hours. On a completely different subject, I'd like to say that before Prolia I gave myself daily injections of Forteo for 2 years. It was not a big deal at all and my bone growth was impressive. The purpose of Prolia now is to maintain that bone growth. I have been told that I would need to be on it for the rest of my life. If I stop using it I will lose all the bone growth I have and more. I read a study whereby going on Fosamax after Prolia didn't show significant gains. Given that you haven't started Prolia yet, why not consider Forteo instead. I think Prolia more prevents bone break down and it's Forteo that builds bone.

REPLY
Profile picture for Maryann @mkoch

Leslib52: I have been on Prolia for 5 years. I never had an issue on Prolia. However, last August, my health care organization switched to a biosimilar drug. (meaning it provided the identical active ingredient that was in Prolia -denosumab-but as far as the binders, who knows?) For the first time ever I was miserable. 2 days later in bed all day with a heating pad on my abdomen. Cystitis. (Inflammation of the bladder.) As I already stated, I never had any side effects with Prolia, and when I was injected with Jubbonti (the biosimilar version) it had only been on the market for about a month. So I truly feel my health care organization was offered a kickback for their patients being Stage 4 testing. (Before FDA approval and availability to the public drugs go through 3 stages of clinical testing.) I informed my endocrinologist that I would never take Jubbonti again. She then got approval to allow me to continue on Prolia. I will say, my primary care doctor who prescribed an antibiotic for my cystitis, said to make sure with my next injection of denosumab, whether it be Prolia or Jubbonti, to hydrate well. Drink lots of water. On the National Institutes of Health website I found that the most common side effect of denosumab is a UTI (cystitis falls within that category) at a rate of 1 in 33. So drink lots of water after your injection for 24 hours. On a completely different subject, I'd like to say that before Prolia I gave myself daily injections of Forteo for 2 years. It was not a big deal at all and my bone growth was impressive. The purpose of Prolia now is to maintain that bone growth. I have been told that I would need to be on it for the rest of my life. If I stop using it I will lose all the bone growth I have and more. I read a study whereby going on Fosamax after Prolia didn't show significant gains. Given that you haven't started Prolia yet, why not consider Forteo instead. I think Prolia more prevents bone break down and it's Forteo that builds bone.

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@mkoch my doctor wants me on Prolia. Thanks for the tips on hydration.
Yep I heard about it being for life. I am 73 and have good Medicare supplement plan. I also heard, that Prolia may only be effective for 10;years. We shall see.
I don’t think I could give myself shots.
Thanks for your tips.

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Just for thoughts! I have received one infusion and No more!

Immune-mediated syndromes following intravenous bisphosphonate therapy
Reclast infusion
https://link.springer.com/article/10.1007/s10787-017-0365-9
Abstract
Objectives
Intravenous (IV) infusion of aminobisphosphonates (ABP) induces cytokine release by peripheral blood Vγ9δ2 T cells, resulting in an immediate short-term inflammatory response in up to 50% of patients. We evaluated possible long-term pro-inflammatory effects of IV ABP.
Methods
Retrospective case-series study from one rheumatology specialist’s clinic. 2261 electronic charts were reviewed for administration of ‘zoledronate’ or different brand names of zoledronic acid, and relevant clinical data was retrieved for patients who had received the infusion.
Results
Thirteen patients had recieved zoledronate. In six, new-onset or exacerbation of a previous inflammatory/autoimmune disorder was diagnosed within 3 months following infusion. Of these, one patient developed new-onset rheumatoid arthritis (RA), two polymyalgia rheumatica (PMR), two suffered a flare of Crohn’s disease-related and aromatase inhibitor-induced arthralgias, and one patient acquired autoimmune hemophilia. Pre-existing malignancy and immediate inflammatory response following zoledronate were more frequent in patients experiencing new or worsening immunologic manifestations (3/6 vs. 0/7, and 5/6 vs. 2/7, respectively).
Conclusions
Intravenous ABP may trigger induction of persistent autoimmune syndromes, especially when accompanied by an immediate adverse reaction or pre-existing malignancy.

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