1. < Osteoporosis & Bone Health
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Long-Term Reclast Side Effects

Posted by logcabinkat @logcabinkat, May 13 3:37pm

Hi everyone. I’m a 58 y/o woman who was diagnosed with an autoimmune disease at 18 impacting my reproductive system. I now have severe osteoporosis. For the past year I’ve done Evenity shots with few side effects. On April 23 I had my first Reclast infusion. Despite following their recommendations and hydrating and Tylenol, I was incredibly sick. I woke up at 2 a.m. shaking so hard I could barely walk to the bathroom. I was sick for three days, in bed.
Three weeks later I’m still sick. I am struggling with profound fatigue that has sent me back to bed on days I don’t work because I don’t have any energy. Even with Tylenol I am in pain. Widespread pain. It’s like living with a low-grade flu all the time.
My endocrinologist confirmed that I fall into the category of patients who experience ongoing side effects. My question is how to manage this. Today I gave up a volunteer position because of my lack of energy. I’m supposed to travel overseas in August and am terrified that I’ll either have to cancel my trip or will be so negatively impacted by the travel that I’ll spend my vacation sick.
I would appreciate any advice on how to manage this and ideally get back to a new normal.
Thanks so much.

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gently | @gently | May 15 12:13pm

https://www.endocrinologydiabetes.org/article/S2376-0605(20)30438-7/fulltext
Broken13, I think much of this story will remain completely untold because the connection between zoledronate, and autoimmune has been unsuspected. I appreciate your question.

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bytheriver | @bytheriver | May 16 12:16pm
In reply to @naturegirl5 "@logcabinkat I’ve had two Reclast infusions but fortunately did not have the flu-like symptoms that can..." + (show)
Profile picture for Helen, Volunteer Mentor @naturegirl5

@logcabinkat I’ve had two Reclast infusions but fortunately did not have the flu-like symptoms that can occur. Some people I know have experienced the symptoms you describe but the side effects went away after a few days.

I’d like to recommend that you contact your doctor. Have you called your provider who prescribed the Reclast?

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@naturegirl5 definitely!

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ccps101 | @ccps101 | May 16 4:04pm
In reply to @broken13 "It would be great to hear from people with autoimune diseases and treating osteoporosis . There..." + (show)
Profile picture for broken13 @broken13

It would be great to hear from people with autoimune diseases and treating osteoporosis . There have been a few comments of negative reactions from Evenity for those folks. I believe someone posted a study link of Evenity blocking Sclerostin and causing low iron. I have leukopenia and chronic low blood count so very reluctant to make that worse.

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@broken13 I can’t wholly answer this though I do have 3 autoimmune diseases as well as osteoporosis. I am (and will be for life) on low dose prednisone. Long story as to why but it does work for me. Because of this and other issues my rheumy put me on Tymlos which, for me, is going great. Just had my bone markers done and very good improvement.

Now, the issue at hand. I, too, have heard from other autoimmune patients of difficulty with Reclast. That’s probably going to put me on to Prolia in order to lock in my gains when Tymlos is over. One of my conditions also causes major dry mouth so my periodontist is very much against Reclast.

It may be for people with autoimmune diseases a burst of tapered higher dose steroids may help with Reclast, something to be discussed with rheumatologist if you have one. I would be at my doc demanding something like this. As my GP said for those of us at a certain age with certain conditions, pain itself can make the cycle of inflammation worse. Good luck

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Profile picture for logcabinkat
logcabinkat | @logcabinkat | May 16 5:05pm
In reply to @ccps101 "@broken13 I can’t wholly answer this though I do have 3 autoimmune diseases as well as..." + (show)
Profile picture for ccps101 @ccps101

@broken13 I can’t wholly answer this though I do have 3 autoimmune diseases as well as osteoporosis. I am (and will be for life) on low dose prednisone. Long story as to why but it does work for me. Because of this and other issues my rheumy put me on Tymlos which, for me, is going great. Just had my bone markers done and very good improvement.

Now, the issue at hand. I, too, have heard from other autoimmune patients of difficulty with Reclast. That’s probably going to put me on to Prolia in order to lock in my gains when Tymlos is over. One of my conditions also causes major dry mouth so my periodontist is very much against Reclast.

It may be for people with autoimmune diseases a burst of tapered higher dose steroids may help with Reclast, something to be discussed with rheumatologist if you have one. I would be at my doc demanding something like this. As my GP said for those of us at a certain age with certain conditions, pain itself can make the cycle of inflammation worse. Good luck

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@ccps101 My issue is that I simply cannot tolerate steroids. I took prednisone in the past and it spiked my anxiety so high I was in crisis. To me, that's not quality of life. Neither is living in pain, but I'm used to that (shrug). The unmanageable anxiety though is terrifying for me. Would go on prednisone if it wasn't for that. I'll ask about a rheumatologist when I see my primary. Not to mention a better endocrinologist...

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logcabinkat | @logcabinkat | May 16 5:07pm
In reply to @naturegirl5 "@logcabinkat It's good that you decided to go back to your primary care physician (PCP) to..." + (show)
Profile picture for Helen, Volunteer Mentor @naturegirl5

@logcabinkat It's good that you decided to go back to your primary care physician (PCP) to address Reclast and the autoimmune disorder. Hopefully, your PCP can disentangle this for you so that you can address the severe osteoporosis while not compromising your other serious health problems.

Will you let me know what your PCP recommends?

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@naturegirl5 Absolutely!

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broken13 | @broken13 | May 16 11:07pm
In reply to @ccps101 "@broken13 I can’t wholly answer this though I do have 3 autoimmune diseases as well as..." + (show)
Profile picture for ccps101 @ccps101

@broken13 I can’t wholly answer this though I do have 3 autoimmune diseases as well as osteoporosis. I am (and will be for life) on low dose prednisone. Long story as to why but it does work for me. Because of this and other issues my rheumy put me on Tymlos which, for me, is going great. Just had my bone markers done and very good improvement.

Now, the issue at hand. I, too, have heard from other autoimmune patients of difficulty with Reclast. That’s probably going to put me on to Prolia in order to lock in my gains when Tymlos is over. One of my conditions also causes major dry mouth so my periodontist is very much against Reclast.

It may be for people with autoimmune diseases a burst of tapered higher dose steroids may help with Reclast, something to be discussed with rheumatologist if you have one. I would be at my doc demanding something like this. As my GP said for those of us at a certain age with certain conditions, pain itself can make the cycle of inflammation worse. Good luck

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@ccps101 Thank you for sharing your journey and experience. My sister has been on Prolia for 10 years now, so it seems it does work for others.

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broken13 | @broken13 | May 19 6:57pm
In reply to @gently "@broken13 start a new discussion https://connect.mayoclinic.org/group/osteoporosis/" + (show)

@gently Thanks for the link. I did post the discussion question and saw it show up in the side bar, but when I looked two days later, it was no longer there. Perhaps the moderators believe it would not be a helpful discussion and deter people from the treatment they need.

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gently | @gently | May 19 9:48pm

broken13, love your posts. I'm wondering what you were doing in the boat, fishing?
Do you mind if I report your comment and find out what happened to your question?

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aberg | @aberg | May 20 9:19am

My personal experience with Reclast was a disaster. I’ve had Hashimoto’s thyroiditis and connective tissue disease since I was 27. I am now 57. I have also been diagnosed with Sjogrens and probable Celiac. Reclast was recommended by both my endocrinologist and rheumatologist for rapidly progressing osteopenia. I hydrated and opted for a half dose 2.5 and 1 hour slow drip administered at 2:00 pm. All hell broke loose at 2:00 am. Severe headache, nausea, fever, chills, body aches, stabbing rib, spine, and back pain so severe I was writhing on the floor screaming. This lasted nonstop for 3 days. The weakness and flu symptoms for 3 weeks. Without a doubt it flared my autoimmune diseases. A recent CT found autoimmune lung involvement. I do wonder if the back pain after Reclast caused this inflammation in the lungs, Regardless, I caution anyone with autoimmune disease regarding the long lasting and strong effects of Reclast. I will be pursuing other options in the future.

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