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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@awfultruth

@255anny I haven't researched this at all but I can say the the radiologists looking at xrays I have had commented that there appeared to be bone thinning. Don't remember the exact wording. So, I'm guessing that they can observe this but have no way of quantifying it as a DXA scan does. They cannot put a number on it but they can see it's happening.

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An orthopedist in San Diego told me, "Ha, ha,ha. All your calcium is in your arteries there isn't any in your bones," while looking at my x-rays.

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@gently

An orthopedist in San Diego told me, "Ha, ha,ha. All your calcium is in your arteries there isn't any in your bones," while looking at my x-rays.

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@gently Whoa, that is wild and scary. Did you check that out?

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@gently that flippant response by the radiologist would be reportable if you ask me.

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@awfultruth

@gently Whoa, that is wild and scary. Did you check that out?

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I told her that some things must be more fun to say than to hear, and felt bad when a blush spread across her face. She was so young and I was so not young.
There'd been some news that calcium might contribute to athersclerosis instead of bone health. I may not be taking enough calcium to take best advantage of Forteo, and never supplement without K2, both because of fear of deposition in soft tissue.
Though dxa is x-ray, plain film isn't an assessment of osteoporosis. If fissures are detectible on x-ray a referral for dxa would be in order.
At the end of the appointment I asked for a referal to the best endocrinologist and cardiac specialist in the ucsd system.
Only because I'd embarrassed her.

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@lizzie12

Good to hear that it went well. I'm having my first Reclast infusion tomorrow morning. Drinking lots of water and hoping for the best! Relieved to be finally getting back on meds.

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I might have missed it, but how was your Reclast infusion? I think my first infusion will be at the end of October or in November. I'm nervous about it, but I have no other choice.

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@255anny

I might have missed it, but how was your Reclast infusion? I think my first infusion will be at the end of October or in November. I'm nervous about it, but I have no other choice.

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Thank you for asking! My infusion was Monday 9/16 in the AM. The infusion itself took about 20 minutes. I hydrated all day Saturday and Sunday, sipping water through out the day and Monday morning.
When I got home took Tylenol preemptively as day progressed felt fatigued, headachy. Took Tylenol at bedtime. Next day had heartburn which alarmed me as that was the reason I switched from Fosamax to Reclast and I'm meds for that, but next felt fine, Thurs and Friday mild heartburn and stomach upset,today is Saturday and pretty much back to normal. I have kept hydrating too. No other side effects yet and hoping that's it. I was pretty anxious about it before hand,which most likely a trigger for the
reflux. If it keeps happening I'll let my GI and Rheumatologist know.
I will be interested to hear your experience and hope it all goes well.

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Also my discharge paper gave directions for Delayed reactions for: Rash, itching skin, muscle aches, flu like symptoms, joint pain and stiff - ness using Zyrtec for 7 days and then again 5 days before next infusion. For joint or muscle pain will call in a script for Medrol Dose Pak.
Anyone else get the same info?

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@lizzie12

Also my discharge paper gave directions for Delayed reactions for: Rash, itching skin, muscle aches, flu like symptoms, joint pain and stiff - ness using Zyrtec for 7 days and then again 5 days before next infusion. For joint or muscle pain will call in a script for Medrol Dose Pak.
Anyone else get the same info?

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@lizzie12 I was only told to take tyelnol at needed, nothing else.

I am surprised at the steroid suggestion. A Medrol dose pack is pretty heavy duty. So they gave you a script?

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They didn't give me a script, said to call them if I had the bone or joint pain which knock on wood I haven't so far. I hadn't seen any other posts mentioning this, just thought it was interesting.

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@lizzie12

They didn't give me a script, said to call them if I had the bone or joint pain which knock on wood I haven't so far. I hadn't seen any other posts mentioning this, just thought it was interesting.

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@lizzie2, thanks for posting about the steroid pack. I'd read that inflammation is more destructive to bone than short term 5mg dose depomedrol. The suggested pack is probably is 4mg. And while I'd heard that the only remedy for extreme adverse reaction to Reclast is steroid, I hadn't heard of anyone outside of a hospital setting being offered a steroid.
Quite interesting.

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