Reclast experience sucks so far.

Posted by neesie0159 @neesie0159, Sep 11 1:24pm

As brief background I was diagnosed in my 40’s (now 67) I took Actonel for years, developed GI issues and was told to just do calcium/D. Fast forward to 2018 and a fracture of L4. Found out my spine was -4.something. Started on Fosamax, I was afraid of Prolia.
FFW again, I did a year of Evenity with great results, spine went to -3. The plan was 4 Prolia injections followed by Reclast. Zero side effects with Prolia, Evenity just had sore arms afterwards. No improvement at all on Prolia. I did as much prep as I could for generic Reclast—hydration, tylenol, claritin, had it given over an hour ( despite my former provider not ordering it that way like they agreed to). I got it Tuesday afternoon. First 24 hours no issues at all, then gradually increasing temperature up to 100.8 and felt like total crap. Better yesterday morning, just tired. Woke up 2:30 a.m. today with severe pain in hips and legs. I have chronic back pain and can sleep through mild to moderate pain, this I couldn’t. It’s a lot better since getting up, but random pain in my feet/ankles/shins/knees. Lying on my bed with cat and heating pad, terrified that this will be long lasting. I will be looking at alternatives after this, I think.

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Neesie, this reaction is fairly common 30 to 40% they say averaging 3 to 5 days. Tylenol is said to help. Some connectors recommend allergy pills. If it persists or becomes unendurable a last resort is steroids-- 5 day. If it becomes excruciating you might be able to obtain IV steroids at an ER.
I hope it goes away.
Once you choose Prolia, you are trapped into with Reclast, unless you just stay on Prolia, which I think is currently discouraged.
I also hear that exercise helps. but when you ache that isn't welcome information.
Do you mind if I ask if you have any autoimmune diseases. I've been trying to figure out why some have it so much worse that others.

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Profile picture for gently @gently

Neesie, this reaction is fairly common 30 to 40% they say averaging 3 to 5 days. Tylenol is said to help. Some connectors recommend allergy pills. If it persists or becomes unendurable a last resort is steroids-- 5 day. If it becomes excruciating you might be able to obtain IV steroids at an ER.
I hope it goes away.
Once you choose Prolia, you are trapped into with Reclast, unless you just stay on Prolia, which I think is currently discouraged.
I also hear that exercise helps. but when you ache that isn't welcome information.
Do you mind if I ask if you have any autoimmune diseases. I've been trying to figure out why some have it so much worse that others.

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@gently I don’t have any autoimmune diseases. I have possible fibromyalgia ( depending on which doctor I saw over the years of random pain and other symptoms). I fully was prepared for flu like symptoms ( fever and fatigue), but the 7 of 10 level pain was not expected. All they mention is mild to moderate muscle/joint/bone pain, and this was above moderate.
I only went with Prolia because my former provider said it could further improve my bone density, which it didn’t, and I had to do something post-Evenity. Not sure what my other options are, but I have a new endo who’s a lot more responsive and hopefully we can figure it out.

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Interesting that Prolia didn't work.
Interactive doctors are the best.
You have a while to determine which medication to take next because you can't get Reclast out of your system. You're good for a year or two provided Reclast is working. That pain level is extreme, but there are published case report of patients being hospitalized after the infusion. I hope the pain is improving, if it hasn't sufficiently by Monday, you might best ask for steroid. The speculation is that the initial cytokine reaction can be self sustaining without regard to the medication. Steroids aren't fun and they aren't good for the bones. I've read that a five day isn't bad for the bones the way long term inflammation is.
Your provider probably would have told you if they'd known. It's surprising how many prescribers tell their patients that the side effect isn't because of the medication.

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Profile picture for gently @gently

Interesting that Prolia didn't work.
Interactive doctors are the best.
You have a while to determine which medication to take next because you can't get Reclast out of your system. You're good for a year or two provided Reclast is working. That pain level is extreme, but there are published case report of patients being hospitalized after the infusion. I hope the pain is improving, if it hasn't sufficiently by Monday, you might best ask for steroid. The speculation is that the initial cytokine reaction can be self sustaining without regard to the medication. Steroids aren't fun and they aren't good for the bones. I've read that a five day isn't bad for the bones the way long term inflammation is.
Your provider probably would have told you if they'd known. It's surprising how many prescribers tell their patients that the side effect isn't because of the medication.

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@gently Pain gradually got better and last night/ this morning is so far mild, thankfully. I honestly wish I could do Evenity again because of the amazing results, but I know that isn’t a common treatment sequence so even if my doctor wanted it my insurance would probably deny coverage. I have heard somewhere that it’s less effective after bisphosphonates, but I had been on Fosamax for a few years before Evenity and still got much better. I’m tired of meds just maintaining my crap bones, I want them to improve. Maybe in a year more options will be available.

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nessie, I'm so glad you are feeling better.
There is hope for better medications and already I know of people who have had second rounds of Eventiy. If you'll just get old enough, Medicare part B will pay for the Evenity injections.

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I am sorry your journey has been so difficult. Our choices are limited and generally not satisfactory, yet we need to carry on. I am thankful for this site and the ideas and encouragement.
I have opted for no pharmaceutical treatment for now, after 2 years on Forteo, with no side effects and limited but welcome improvement . I just can't deal with the potential side effects of Reclast which is the only med my endo will prescribe for now. I know this may seem reckless, but I will continue with my Functional Medicine protocol for at least a while.
Best to you and hoping the Reclast side effects don't last too long.

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Profile picture for gently @gently

nessie, I'm so glad you are feeling better.
There is hope for better medications and already I know of people who have had second rounds of Eventiy. If you'll just get old enough, Medicare part B will pay for the Evenity injections.

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@gently I have Medicare Advantage, so they can deny whatever they want. I had $400 a month copayments with Evenity. 🙁

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Profile picture for neesie0159 @neesie0159

@gently I have Medicare Advantage, so they can deny whatever they want. I had $400 a month copayments with Evenity. 🙁

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@neesie0159 I had a $650 co-pay on Evenity. I too have the advantage plan.

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Profile picture for kristie2 @kristie2

@neesie0159 I had a $650 co-pay on Evenity. I too have the advantage plan.

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@kristie2 It was worth the copay for the results I got, but if it wasn’t covered at all it would be a hardship.

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Profile picture for kar50 @kar50

I am sorry your journey has been so difficult. Our choices are limited and generally not satisfactory, yet we need to carry on. I am thankful for this site and the ideas and encouragement.
I have opted for no pharmaceutical treatment for now, after 2 years on Forteo, with no side effects and limited but welcome improvement . I just can't deal with the potential side effects of Reclast which is the only med my endo will prescribe for now. I know this may seem reckless, but I will continue with my Functional Medicine protocol for at least a while.
Best to you and hoping the Reclast side effects don't last too long.

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@kar50 I am scheduled for Reclast. But the side effects just aren't worth it.

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