1. < Osteoporosis & Bone Health

High anxiety regarding Reclast or Prolia decison for OP meds

Posted by 255anny @255anny, Aug 18 5:01pm

I am overwhelmed with making this decision. Currently on Evenity, 2 more injections left. Severe Osteporosis. Spine -4.7. I left my OP Dr's office last week with an order for Prolia starting Oct/Nov. And blood work orders. We did discuss Prolia vs Reclast but I didn't ask enough questions I guess, despite having a 1 hour appt with her. I did know and told her I feared Prolia. She relayed how much easier it was than Reclast. And the Reclast stays in your system much longer. She wrote the RX for Prolia for 1 year, then relay to Evenity again. That does not sound right to me. I can't find any studies supporting that drug sequencing. This Dr is new to me but in the practice of the most respected Endo offices in my state. She only see OP patients. I am staying up til 3am every night reading and researching. There is no right answer.

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elisabeth007 | @elisabeth007 | Aug 25 5:27pm
In reply to @windyshores "@elizabeth007 it is helpful to read the actual studies. The warning sare about cardiovascular risks with..." + (show)
@windyshores

@elizabeth007 it is helpful to read the actual studies. The warning sare about cardiovascular risks with Evenity. One study found no difference between Evenity and placebo in that regard and another study showed a small difference with alendronate, which some articles say may have been due to a small protective factor of alendrontate, according to the studies (ARCH and FRAME). There are other possible effects of Evenity that have not been studied as thoroughly. As always talk to a doctor about personal risks with any medication.

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i am aware of the studies. My former endochrinologist gave me summaries of the studies. I have also discussed Eventity with my cardiologist. I’m not familiar with the studies you are citing. The ones that i was informed about showed that Eventity was by far the most effective osteoporosis drug. Every drug has interactions and complications found among a small portion of the population.

I am unfamiliar with the “long term osteoporosis drug planning protocols. Because i have a history of numerous drug adverse reactions, every first time using a drug is a test of whether i can tolerate it. When i had brand name reclast there was such significant improvement i didnt need osteoporosis meds for a few years. Then my endo at the time refused to accept my allergist/immunologist strong recommendation that i have brand name reclast. I had a delayed anaphylactic reaction and reported it to the FDA and went to urgent care. I had been administered a generic manufactured in India. Now my endocrinologist is afraid to give me anything because of my adverse drug potential. i liked Reclast—it made a big improvement in my osteoporosis twice

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elisabeth007 | @elisabeth007 | Aug 25 5:30pm
In reply to @255anny "Thank you! This has to be one of the most difficult decisions to wrap my head..." + (show)
@255anny

Thank you! This has to be one of the most difficult decisions to wrap my head around! As you point out, the lack of concrete studies and guidelines is frustrating. No wonder so many Dr's get it wrong when prescribing meds for their OP patients.
I do like your drug sequence suggestion. And the lower dose sounds like a good option.
My other thought would be what if I could not tolerate the Reclast at all? See, I'm already going there, haha. We just don't know and that goes back to the lack of studies. It's such a black hole.

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i think one of the reasons so many drs get it wrong prescribing osteoporosis is because too many GP’s are providing them and don’t have the necessary expertise to make prudent decisions

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nguttman | @nguttman | Aug 25 7:35pm
In reply to @windyshores "Just want to add that this is a long term game for us. Bone building on..." + (show)
@windyshores

Just want to add that this is a long term game for us. Bone building on Evenity may be less in the second half, but it is not zero for that time and in the context of long term medications, those 6 months are valuable. What is the alternative? If studies show Reclast does more for those 6 months, our doctors will know, but that is not known at this time.

Dr. Ben Leder, in his YouTube video, says that for a time, Evenity both raises P1NP and lowers CTX. Forteo and Tymlos raise both. Prolia and bisphosphonates lower both. Leder discusses using a combo of Forteo and Prolia and says that Evenity is the only single drug that has the same effect as that combo, in raising P1NP and lowering CTX- in the first half.

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Ben Leder also says that one should never follow Prolia with Tymlos, and I assume Forteo is the same.

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papillon89 | @papillon89 | Aug 25 8:03pm

I am going in tomorrow afternoon (8/26) for my first Reclast infusion. I am seeking some advice as to anything I should do prior to the infusion. My blood work was done 45 days back and the parameters were normal. Vit D was at the lower level of normal 26 ng/mL. But I have been on 5000 IU of vit D for 45 days now since my last blood work. Calcium was at 9.4 mg/dL and Creatinine Plus was at .90 mg/dL. I have been also taking some supplemental calcium.

Also, does taking Tylenol prior to the infusion help?

Thank you.

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2 replies
windyshores | @windyshores | Aug 25 8:10pm
In reply to @papillon89 "I am going in tomorrow afternoon (8/26) for my first Reclast infusion. I am seeking some..." + (show)
@papillon89

I am going in tomorrow afternoon (8/26) for my first Reclast infusion. I am seeking some advice as to anything I should do prior to the infusion. My blood work was done 45 days back and the parameters were normal. Vit D was at the lower level of normal 26 ng/mL. But I have been on 5000 IU of vit D for 45 days now since my last blood work. Calcium was at 9.4 mg/dL and Creatinine Plus was at .90 mg/dL. I have been also taking some supplemental calcium.

Also, does taking Tylenol prior to the infusion help?

Thank you.

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The advice given to me by my doctor and on this forum was to hydrate the day before, day of and day after. I actually had IV hydration due to some kidney issues. Many of us ask for a slow infusion over, say, an hour. Tylenol as needed for me but some do it before and after. I had a low grade fever- no biggie- and took tylenol for that.

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255anny | @255anny | Aug 25 8:12pm
In reply to @papillon89 "I am going in tomorrow afternoon (8/26) for my first Reclast infusion. I am seeking some..." + (show)
@papillon89

I am going in tomorrow afternoon (8/26) for my first Reclast infusion. I am seeking some advice as to anything I should do prior to the infusion. My blood work was done 45 days back and the parameters were normal. Vit D was at the lower level of normal 26 ng/mL. But I have been on 5000 IU of vit D for 45 days now since my last blood work. Calcium was at 9.4 mg/dL and Creatinine Plus was at .90 mg/dL. I have been also taking some supplemental calcium.

Also, does taking Tylenol prior to the infusion help?

Thank you.

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Hydrate, hydrate and hydrate is what I've read. Also my Dr mentioned getting plenty of electrolytes in you before and after. And Tylenol before and after. I'm sure others here can help you more than I can. Please keep us posted.

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1 reply
gently | @gently | Aug 25 10:23pm
In reply to @mayblin "@gently you presented a thought provoking path! Good studies for either pth analog to evenity or..." + (show)
@mayblin

@gently you presented a thought provoking path! Good studies for either pth analog to evenity or evenity to pth analog are almost non-existent. The serial anabolic exposure from pth analog to evenity to pth analog calls for a veteran bone specialist's attention. A bold yet innovative idea to say the least. Are there any conceptual bases to back it up? Or, do you see a clear advantage in the absence of an antiresorptive (either reclast or prolia in this case), given anny's need for a quick boost in bmd (hence a reduction of her very high frax score) in a short periods of time?

Curiously, do you think toggling between tymlos and forteo could enhance anabolic effects given their differences in receptor binding?

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mablin,
thanks for sewing with this thread.
The advantage of the absence of bisphosphonate would be that it allows PTH to build strong bone.
I also suspect that part of the added bone density with bisphosphonates has to be a measurement of the bisphosphonate itself. That might only matter when the TBS indicates structural abnormality. Resistance to osteoporotic vertebral fracture is more dependant upon the trabecular bone than the cortical bone.

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1 reply
mayblin | @mayblin | Aug 26 9:12am
In reply to @gently "mablin, thanks for sewing with this thread. The advantage of the absence of bisphosphonate would be..." + (show)
@gently

mablin,
thanks for sewing with this thread.
The advantage of the absence of bisphosphonate would be that it allows PTH to build strong bone.
I also suspect that part of the added bone density with bisphosphonates has to be a measurement of the bisphosphonate itself. That might only matter when the TBS indicates structural abnormality. Resistance to osteoporotic vertebral fracture is more dependant upon the trabecular bone than the cortical bone.

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Thank you @gently for your reply. Effects of prior treatment of bisphosphonates especially fosamax on Forteo were well studied. As Reclast becomes a more frequently used bisphosphonate, the need is there to see its effect on subsequent anabolic treatments. I share your thoughts.

I’m here to exchange much needed information for those who search for them. Generally I like results from solid RCTs as basis for decision making, but in a pinch I will opt for a lesser known treatment modality, of course under the careful guidance of my physician. From time to time, however, good studies or information remain scarce for a particular treatment transition. Mayo connect is just a right place for us to share experiences as well as ideas.

The following is what I know about the interesting anabolic to anabolic sequencing:

Forteo/Tymlos to Evenity: no good studies that I could find, but we know some had done or are doing this, including a few members on this forum. Their shared experiences are precious to some of us.

The rarer yet curious sequence of Evenity to Forteo/Tymlos: I came across three cases so far. One acquaintance is doing Evenity to Forteo under the direction of a very fine bone researcher and clinician who publishes in top rated journals, with careful clinical and bone markers monitoring. Hope we could see case reports soon and clinical studies in the future.

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gently | @gently | Aug 26 10:29am

Mayblin, thanks for keeping track of those Random Controlled Trials. The cases are a more possible resource.
Forteo research is low since it is off patent and I just read that ALL of the profits from Tymlos are diverted to other projects at Radius.
I hope you'll keep us informed and not just disappear as you sometimes do.

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255anny | @255anny | Aug 27 9:27am

I have spent many hours researching and trying to educate myself regarding Prolia, Evenity and Reclast. Those hours spent are not entirely helpful. In fact I think I'm more confused.
My Dr's nurse finally replied to my online portal requests and assures me she will get back to me soon. I was short and sweet and stated I was not comfortable taking the Prolia > Evenity. So will shall see.
Anyway, now that I've spent 4 days researching Reclast and side effects - I'm shaking in response. Of course, we don't see many of the lesser or no side effects mentioned online. But the serious side effects that are talked about, really scare me. I'd like to get my thoughts straight before I speak with my Dr, but right now I can't do that.
One year of Prolia > Evenity. The Evenity may not blunt the rebound of Prolia. Reclast > ??? The Reclast scares me.

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