Timing of Reclast Infusion after your last Evenity Injection.

Posted by rhondat23 @rhondat23, Apr 28 8:12pm

My doctor said I would not receive a DEXA Scan or start Reclast Infusions for one year from my last Evenity Injection. Can you please share what each of your doctors are advising? Thank you!

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@susanfalcon52

windy,
We are the same path. I have my last Evenity dose next friday.
Reclast in June.
I have been receiving the Evenity injections in an infusion center which has been fine. The Reclast I will receive at the rheumatologist office.
Yesterday, I spoke to the RN who does the infusion. She said that I could slow the infusion down as much as I wanted.
She also advised about hydration and Tylenol.
I will follow instructions and hope for best.
I asked that their office order a dexa. The nurse said that insurance only pays for it every two years. I told her that I would pay for it myself.
It’s crazy to take a year of Evenity and not want a dexa at the end of it.
Also, crazy that Medicare would pay $5,639.15 for Evenity every month for 12 months, but not pay $300 for a dexa.

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@susanfalcon52 Just like mao22 I have had no problem with having DXA scans every year. Maybe has to do with how the dr bills it. I have paid for one under 1 year when I really wanted to know how I was doing at that point. But my doc has been all for doing it each year. I have traditional Medicare and a Medicare supplemental also. Always pays 100% except for the early DXA I did.

Also I intend to investigate the Reclast followup to Evenity more. I see people saying that they take Tylenol and anti-histamines and they get a slower infusion and more things I can't remember right now. The only one of those things that seems crucial is the slow infusion. Paul Miller MD in an interview by Lani Simpson discussed how Reclast can damage kidneys if infused too fast. My own doc said the same though he stated a shorter time for it like 20 or 30 minutes being fine. What was dangerous was like 5-10 minutes is what he indicated. I want more solid info on the speed of the infusion than that but it is at least clear that infusion time is a critical factor in protecting the kidneys. I doubt that Tylenol and some of the other suggestions I see are doing anything more than reducing non critical symptoms? Like a head ache. The question remains why do some percentage of Reclast shots result in months of pain and so on? What is causing that and do any of the suggested tricks have any effect on the long term serious effects? Other than slow infusion which seems like a sure thing for the kidney damage issue that is. At least one person on this forum has said they followed all the suggestions and they still got terrible long lasting consequences. Can't remember which thread that was in right now but it was fairly recent.
Good luck to us all

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@dna41

I had my first Reclast infusion yesterday. I was terribly nervous but I was lucky that the two nurses who did the infusion were wonderful! They made all the difference for me. I asked for 1 hour infusion and hydrated and took Tylenol before and after. I am feeling pretty good today so I'm grateful for that.

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I am so nervous about the injection. Do you have any advice? My doctor tells me not to listen to “Dr. Google”.
How are you feeling?
Thanks

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@friend123

I am so nervous about the injection. Do you have any advice? My doctor tells me not to listen to “Dr. Google”.
How are you feeling?
Thanks

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My neurologist is working with my insurance to have a DEXA scan after 6 months of Evenity. I agreed to stick with this drug for 6 months as I need to build bone for a much needed surgery. Evenity is like injecting a low grade poison into my system. It doesn't matter what location or the wait between the injections, same horrible reactions. But I expect that with most of the bone medications as I have reactions to almost everything. I have hope from reading on this blog that after so many months of Evenity some state the reactions are less. The neurologist will consider reducing the monthly injections to only one depending on the 6 month outcome. I am the only patient at the infusion center having to take 2 Evenity injections per month.

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@jillgirl

My neurologist is working with my insurance to have a DEXA scan after 6 months of Evenity. I agreed to stick with this drug for 6 months as I need to build bone for a much needed surgery. Evenity is like injecting a low grade poison into my system. It doesn't matter what location or the wait between the injections, same horrible reactions. But I expect that with most of the bone medications as I have reactions to almost everything. I have hope from reading on this blog that after so many months of Evenity some state the reactions are less. The neurologist will consider reducing the monthly injections to only one depending on the 6 month outcome. I am the only patient at the infusion center having to take 2 Evenity injections per month.

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@jillgirl one Evenity treatment is two shots, the usual dose. Are you doing two shots, twice?

I react to everything and have had neuro reactions to Evenity (burning, tingling) and am stopping after 4.

I did two years Tymlos and tolerated that relatively well. I could not tolerate Forteo or Fosamax at all.

Are you going to do Reclast next?

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@windyshores

@jillgirl one Evenity treatment is two shots, the usual dose. Are you doing two shots, twice?

I react to everything and have had neuro reactions to Evenity (burning, tingling) and am stopping after 4.

I did two years Tymlos and tolerated that relatively well. I could not tolerate Forteo or Fosamax at all.

Are you going to do Reclast next?

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No, two injections per monthly visit. The reception stated other patients were receiving only one (1) injection of Evenity. She could have confused the medicines. The women I see at the clinic are mostly petite and thin so perhaps that is the reason. My weight hovers near 145.

Prolia after Evenity I have been told. After reading the side effects of Prolia if I were given a full 6 month dose I am certain I would have an emergency room visit. It is not recommended in patients with a history of systemic hypersensitivity. Treatment of osteoporosis is a new experience and I am learning from this blog about the different drugs/reactions, searching and taking notes. I would prefer a drug given monthly due to managing the side effects. Frankly they are all horrible for those with autoimmune disorders.
A bad situation from all angles.

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@jillgirl

No, two injections per monthly visit. The reception stated other patients were receiving only one (1) injection of Evenity. She could have confused the medicines. The women I see at the clinic are mostly petite and thin so perhaps that is the reason. My weight hovers near 145.

Prolia after Evenity I have been told. After reading the side effects of Prolia if I were given a full 6 month dose I am certain I would have an emergency room visit. It is not recommended in patients with a history of systemic hypersensitivity. Treatment of osteoporosis is a new experience and I am learning from this blog about the different drugs/reactions, searching and taking notes. I would prefer a drug given monthly due to managing the side effects. Frankly they are all horrible for those with autoimmune disorders.
A bad situation from all angles.

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Then normal dose is two shots. I am petite, 5'2" and 105 lbs and my expected dose was still two shots. I actually declined the second shot a couple of times and was told noone else had ever done that.

You can do Prolia or Reclast (or possibly alendronate, which is Fosamax, but only if you cannot do Reclast). My doctors won't use Prolia. You would have to do Reclast after Prolia anyway.

If you are sensitive, ask about having a 1 mg dose of Reclast (usual dose is 5mg) with hydration, tylenol and slow infusion. This could be a test dose. I also have autoimmune disorders and sensitivity. There really is no option to skip a follow up med at this time.

Prolia and Evenity are both made by Amgen and the Evenity website suggests Prolia as a follow up, for obvious reasons. But you can do Reclast instead and many if not most are, according to my doctors.

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@windyshores

Then normal dose is two shots. I am petite, 5'2" and 105 lbs and my expected dose was still two shots. I actually declined the second shot a couple of times and was told noone else had ever done that.

You can do Prolia or Reclast (or possibly alendronate, which is Fosamax, but only if you cannot do Reclast). My doctors won't use Prolia. You would have to do Reclast after Prolia anyway.

If you are sensitive, ask about having a 1 mg dose of Reclast (usual dose is 5mg) with hydration, tylenol and slow infusion. This could be a test dose. I also have autoimmune disorders and sensitivity. There really is no option to skip a follow up med at this time.

Prolia and Evenity are both made by Amgen and the Evenity website suggests Prolia as a follow up, for obvious reasons. But you can do Reclast instead and many if not most are, according to my doctors.

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Yes, I realize once one begins treatment of osteoporosis, especially as bad as mine, you continue from drug to drug. I have no choice but to stay on one of these drugs due to the T12 wedge compression fracture that has thrown my life and retirement plans upside down. Reading about Prolia gives me nightmares. Thanks for suggesting Reclast having the ability to start with a smaller dose. My body demands this. I will discuss with my doctors after the Evenity six month check. I plan to ask about an estrogen patch. The side effects can't be any worse than the current drugs. The large study on postmenopausal women staying on hormones was later found to be flawed. As I am sure some of these bone meds will be in the distance future.

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@jillgirl

Yes, I realize once one begins treatment of osteoporosis, especially as bad as mine, you continue from drug to drug. I have no choice but to stay on one of these drugs due to the T12 wedge compression fracture that has thrown my life and retirement plans upside down. Reading about Prolia gives me nightmares. Thanks for suggesting Reclast having the ability to start with a smaller dose. My body demands this. I will discuss with my doctors after the Evenity six month check. I plan to ask about an estrogen patch. The side effects can't be any worse than the current drugs. The large study on postmenopausal women staying on hormones was later found to be flawed. As I am sure some of these bone meds will be in the distance future.

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I get it. I have 7 spinal fractures. My first was T12. If yours was recent, take heart, things can improve. I recently walked 16 miles in two days.

I don't know if estrogen will hold gains from Evenity. I have not seen any info on that. I had hormonal breast cancer so that option is not one I have looked into. And estrogen is not recommended if we are over 60. SERM's like raloxifene are a possibility without the cancer risk.

Reclast lasts a long time in the body. We may be able to take drug holidays with monitoring. My hope is that drug holidays can be lengthy along with some more holistic maintenance as well.

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@dna41

I had my first Reclast infusion yesterday. I was terribly nervous but I was lucky that the two nurses who did the infusion were wonderful! They made all the difference for me. I asked for 1 hour infusion and hydrated and took Tylenol before and after. I am feeling pretty good today so I'm grateful for that.

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Please keep us posted on how you continue to do on Reclast. My Dr recommended it for me, and I'm afraid of the possible side effects I've read about. Thanks.

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@awfultruth

@susanfalcon52 Just like mao22 I have had no problem with having DXA scans every year. Maybe has to do with how the dr bills it. I have paid for one under 1 year when I really wanted to know how I was doing at that point. But my doc has been all for doing it each year. I have traditional Medicare and a Medicare supplemental also. Always pays 100% except for the early DXA I did.

Also I intend to investigate the Reclast followup to Evenity more. I see people saying that they take Tylenol and anti-histamines and they get a slower infusion and more things I can't remember right now. The only one of those things that seems crucial is the slow infusion. Paul Miller MD in an interview by Lani Simpson discussed how Reclast can damage kidneys if infused too fast. My own doc said the same though he stated a shorter time for it like 20 or 30 minutes being fine. What was dangerous was like 5-10 minutes is what he indicated. I want more solid info on the speed of the infusion than that but it is at least clear that infusion time is a critical factor in protecting the kidneys. I doubt that Tylenol and some of the other suggestions I see are doing anything more than reducing non critical symptoms? Like a head ache. The question remains why do some percentage of Reclast shots result in months of pain and so on? What is causing that and do any of the suggested tricks have any effect on the long term serious effects? Other than slow infusion which seems like a sure thing for the kidney damage issue that is. At least one person on this forum has said they followed all the suggestions and they still got terrible long lasting consequences. Can't remember which thread that was in right now but it was fairly recent.
Good luck to us all

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Are you currently taking Evenity?

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