Long-Term Reclast Side Effects

@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

@ccps101 Thank you for sharing. Valuable information as we navigate this fight for functioning health!! So far, I'm leaning towards follow up with Raloxifene . It held me for well enough after my first 24 month round of Forteo in 2016 and now just about completing my second round of 24 months of the biosimilar Teriparatide. If necessary, I would be willing to do Forteo again down the road. At least I know that recipe has prevented any further fractures for me and allowed a good quality of life. Tia Chi is a great daily practise that helps my mobility and pain (have now developed arthritis in the spine). So important to keep moving! Cheers!

Hi everyone. OP here. I have an update - I met with my GP/PCP yesterday and mercifully, he listened to me. We had a good visit. I shared my concerns regarding the endocrinologist and his rudeness and my GP was compassionate. He does feel that the Reclast is behind my issues, and agreed that it could also have woken up a dormant autoimmune illness. So far, I've tested negative for Sjogren's. But something is going on and needs to be addressed. I'll be having a chest x-ray tomorrow and bloodwork for a full Lyme panel and a retest of the CRP. I will also be having an echocardiogram (if my insurance says I can).
What made me want to scream was getting a call from said endo and having him tell me FOR THE FIRST TIME that Reclast can affect "a certain number of people" negatively with long term side effects AND that it can bring to light existing autoimmune illnesses in dormancy. That was information that was never shared with me when discussing the protocol I've been on. Oh, and he also said I didn't *need* to take prednisone. I could just take advil. (facepalm) Except that taking advil in high doses can mess with your kidneys. Just... UGH.
I don't want my bones to turn to dust, y'all, but this is just a lot.

For those curious - when I was diagnosed at 18, it was such an incredibly rare presentation of the illness (POF) that I was one in like 4 million to have it present that way. Asking questions wasn't helpful because no one had answers. And because they didn't study female bodies properly until years after my diagnosis, no one has had any real answers ever. I was blindsided by the osteoporosis diagnosis, furious that I was given misinformation about HRT and stopped it too soon, and feel like no one in the medical realm cares. It's been 40 years of not knowing what to expect, not knowing whether whatever is going on is related to the POF, and when my next autoimmune illness will show up. I know that the medical world is still on the fence about calling thing like fibromyalgia and interstitial cystitis autoimmune, but I am certain that they and the others I've been diagnosed with are part of my suite of issues.

Thank you all so much for listening and caring.

@logcabinkat Did the Evenity help improve your T-scores at all?

@broken13 what were your numbers when you locked them in with Raloxifene after Forteo? It sounds like you eventually started losing your gains since you are doing another round with Teriparatide? And why did you choose Raloxifine over Prolia or Reclast, if you don't mind sharing?

@cat1203 I had 13 compression fractures in my spine and broke my wrist previously, so they are unable to get a reading in my spine or wrist. Total hip score showed improvement of 13.6%, so given forteo works mainly in the spine, we concluded even more gains there. Raloxifene is not as strong in maintaining density, put Prolia is not recommended for me due risk factors and after a severe reaction to Bisophomates early on, I am very reluctant to try Reclast, plus that would eliminate future option of Forteo afterwards.

Hi everyone. OP here. I have an update - I met with my GP/PCP yesterday and mercifully, he listened to me. We had a good visit. I shared my concerns regarding the endocrinologist and his rudeness and my GP was compassionate. He does feel that the Reclast is behind my issues, and agreed that it could also have woken up a dormant autoimmune illness. So far, I've tested negative for Sjogren's. But something is going on and needs to be addressed. I'll be having a chest x-ray tomorrow and bloodwork for a full Lyme panel and a retest of the CRP. I will also be having an echocardiogram (if my insurance says I can).
What made me want to scream was getting a call from said endo and having him tell me FOR THE FIRST TIME that Reclast can affect "a certain number of people" negatively with long term side effects AND that it can bring to light existing autoimmune illnesses in dormancy. That was information that was never shared with me when discussing the protocol I've been on. Oh, and he also said I didn't *need* to take prednisone. I could just take advil. (facepalm) Except that taking advil in high doses can mess with your kidneys. Just... UGH.
I don't want my bones to turn to dust, y'all, but this is just a lot.

For those curious - when I was diagnosed at 18, it was such an incredibly rare presentation of the illness (POF) that I was one in like 4 million to have it present that way. Asking questions wasn't helpful because no one had answers. And because they didn't study female bodies properly until years after my diagnosis, no one has had any real answers ever. I was blindsided by the osteoporosis diagnosis, furious that I was given misinformation about HRT and stopped it too soon, and feel like no one in the medical realm cares. It's been 40 years of not knowing what to expect, not knowing whether whatever is going on is related to the POF, and when my next autoimmune illness will show up. I know that the medical world is still on the fence about calling thing like fibromyalgia and interstitial cystitis autoimmune, but I am certain that they and the others I've been diagnosed with are part of my suite of issues.

Thank you all so much for listening and caring.

@broken13 Maybe you've already explained, but was there a fall or movement that caused your spinal fractures? It's something I'm concerned about since my spine is -4.1 and so far I've not fractured and wish to avoid any of the bone drugs. (Although Forteo and Tymlos are not available due to my parathyroid issues.). Thanks.