Very upsetting early phone call this morning...at 7:15 am from my clinic telling me that I was no longer "eligible for Reclast"! ! Floored because the appt had been set for weeks; Dexa scan and blood work approved, etc. Didn't ask why the day of the appt just getting the call but had to wait until office opened at 8am to find out from P.A. assistant that because I'd completed my 5th yr on Reclast, I would have to go off it for a full year.
Asked what to do for bone density in the interim? (Have been on many other osteo meds) and was told that approval request for Prolia would be sent for ins/Medicare approval before appt could be set.
I range between stage 2 and 3 chronic kidney disease (ckd) am, prediabetic and diagnosed with chronic bronchitis. Had read something some time ago about the many side effects of Prolia.
I live in U.S. and 5-6 months ago, suddenly lost access to my HU account. Messages were not sent to my Spam and I couldn't figure out how to reactivate. Then a month ago, a message showed up in my regular e-mail account. Strangely, "my hub" showed British sites but not the usual except for the Kidney Disease. I enjoy the UK sites but have really missed those on the US HU forums I participated with earlier.
I hope to receive some pointers from members at this site on experiences taking Prolia. Thank you.
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FlowerPreciousLover
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Hi, I'm so sorry to read of your problems. I live in the UK where prolia is known as denosumab. I was prescribed a 6 injection course over 3 years 2015-2017 and had no side effects at the time. But afterwards, I was put on a drug holiday by the hospital (most hospitals don't do that anymore I hope) and suffered catastrophic bone density loss. 5 months into the drug holiday. Spinal values went from -1.9 to -3.7 in 12 months. I had the first of 8 spontaneous rebound vertebral fractures in just 3 months. Prior to that, I had never had an osteoporotic fracture in my life. Now, 2 years on and after 2 vertebroplasty/kyphoplasty procedures to repair the worst of the fractures, I've lost height, have kyphosis (spine curvature) which has led to an "extreme vulnerability " diagnosis re coronavirus due to reduced lung capacity, and suffer daily back pain. Nowadays it's better known that stopping prolia can lead to massive bone density loss so doctors now seem to keep patients on the drug much longer or use a relay drug like Reclast. I have learned a lot from the Facebook group "Prolia side effects and complaints" and suggest you apply to join. There's a lot of information there although obviously the members are self-selecting and have mainly suffered harm from prolia although some are. like yourself, seeking information about it. I wish that I had researched more before starting it, although I don't think that there was much material available online in 2015 . There's a very informative article in the Facebook group's "Files" section entitled: "So your doctor wants you to take Prolia" . Here's a link to the product monograph from the manufacturer's website - this sets out the known potential side effects: amgen.ca/products/~/media/1...
Re Reclast, I believe that it is advisable to have a rest from it after 5 years as there may be a risk of atypical fracture. What to do during a drug holiday? Can you organise some kind of monitoring? I believe there are blood tests for bone turnover markers but I'm no expert on this. Are you taking supplements? I'm sure you know about the importance of adequate calcium & vitamin D. I also take vitamin K2 which I was told helps the absorption of calcium, and boron. Weightbearing exercise is also important.
I should qualify all this by restating that this was my experience and everyone is different. I'm currently on a 2 year Forteo course of daily injections. I wish you all the best.
My sincerest thanks to you 8fractures for sharing your experiences and suggestions for more information! I also took the 2yr Forteo course without any outward side effects nor from other bone meds either.
However, now I am older and more cautious so will search out the sites you mentioned and read with interest. Had not been told about either boron or K2 so more looking into those as well.
I am so sorry to hear of your difficulties and continuing back pain. Nothing can put me out of commission faster than having a flare-up from an old back injury.
I spent time yesterday researching and found the following sites informative. More info than another may want to read but will share "just in case". Best to you and sending you gentle cyber hugs for bone improvement and pain relief.
You'll find nearly everyone who posts about Prolia on the forums has a bad opinion of the medication. There are numerous horror stories like those of 8fractures. I do not know why this drug was ever approved, or why it has not been removed from the market already, nor why an even more potentially dangerous medication (called Evenity) has been approved.
Some questions: Has your bone density improved while on the Reclast? If not, if you've merely been stabilized, why not? Did your doctor run all the tests for secondary causes of osteoporosis? Have you ever been given guidance re nutrition and exercise to help maintain bone strength?
On the plus side there is some thought (don't know if there is real evidence) that if one has taken a bisphosphonate (like Reclast) one is less likely to suffer the rebound osteoporosis caused by discontinuing Prolia.
HeronNS, Thank you so much for your helpful response. As I replied to 8fractures, I spent time yesterday investigating and happily found the am.bonehealth.org site with exercises. I will Make myself start practicing...I'm not a good one with self-discipline for exercising alone but having so far successfully met my 2020 year challenge of walking 3x/week on specific days, I think I can muster the will power to do the "Stepping Out Strong" fall prevention movements offered at this new for me great site.
In answer to your questions: Yes, Reclast did improve my numbers until this last yr when they remained the same as the previous yr. Was told the goal was to "maintain the levels achieved" not continue to expect continued improvement. No tests for secondary causes have ever been mentioned and didn't know they existed..thank you.
I was told to add calcium to my diet and did some online searches for bone nutrition in the past. It may be time to request both a dietitian and consult with an osteo specialist. I have used this Healthgrade site for other specialist recs in my area in the past successfully. The site lists specialists, their creds and importantly named patient reviews: healthgrades.com/right-care...
I absolutely believe in the value of both diet and exercise because receiving a nutrition's meal plan guide for combined diabetes/kidney improved both lab numbers from stage 3 to 2 for ckd and from prediabetes to normal.
Thanks again for your response. .. I was just so caught off guard by the Reclast suspension that I am going to take some time to consider what to try next and doubt it will be Prollia.
I only asked about the "secondary causes" in case Reclast had not done it's job. It might be worth investigating just how long zoledronic acid (Reclast) effects may remain. Unlike denosumab (Prolia), a bisphosphonate remains in the body probably forever, so it *may* be possible that you won't actually need anything, at least not in an emergency way as you would after denosumab, and perhaps to a lesser extent after teriparatide (Forteo or Forsteo).
I don't think I've posted my story in this thread, so, if not, you may find it interesting and get a few tips.
HeronNS, Thank you, Thank you for this latest post! I will certainly add your question to my list when requesting copies of both latest Dexa and blood work lab from Reclast P.A.
Since Reclast did show improvement until last yr's Dexa, in which scores remained the same as prev. yr., and I've been fortunate not to suffer side effects from any of the many previous bone meds, my safest and best course might be to take the yr of vacation from Reclast and then resume it.
I'm just feeling very overwhelmed from sudden cancellation and will continue reading more before contacting the Reclast office next week.
I've just read through your "Journey" and will also check out the sites and books you listed. I so appreciate what you and others have shared and need to take some time now to sift through options.
So happy to have found this forum and deeply grateful for the support and sharing of all.
Hi FlowerPreciousLover, the latest guidelines from various physician groups recommend that after 3-5 years on a bisphosphonate medicine like Reclast, you get a repeat bone density test and fracture risk assessment. If you're at low or moderate risk of fracture at that point, a "drug holiday" is advised -- that is, take a year off the bisphosphonate. (Here's more information on guidelines released in 2019 by the Endocrine Society: americanbonehealth.org/bone...
Did you have a DXA scan recently? Maybe you were doing well enough on the Reclast to be able to take a break? Did your provider mention taking a "drug holiday"? americanbonehealth.org/medi...
Prolia aka denosumab is a more powerful medicine. There are quite a few complaints of side effects etc. from Prolia on this forum and elsewhere; doctors who prescribe it consider it safe and effective. One assumes that people who have had good experiences with it are not motivated to post about it like people who have had bad experiences. Here's what you need to remember about Prolia:
Postmenopausal women taking denosumab should not discontinue it without beginning bisphosphonate or other medicine in order to prevent rebound bone turnover and to prevent rapid decrease in bone mineral density and increase in fracture risk.
Please follow up with your health care provider and clarify whether you should take a year-long holiday before starting another medication.
Mark, Thank you for your response! I have just joined this group and very much appreciate the help and links provided. Hadn't realized I'd been on Reclast for 5 yrs and hadn't known of the recommended "year vacation" from it until notified by the Reclast office.
Yes, I'd just had my annual Dexa scan and additional required blood work which ins. had to approve and did for the infusion. So was utterly caught off guard that I couldn't have it this year.
While I've been very lucky with no unpleasant side effects from taking many other bond meds over the years, Prolia scares me. However, I agree with what you wrote that those with good experiences with it are less likely to post their experience.
I'm pondering my options and may request an appt. with a specialist; may take the yr. vacation and resume the Reclast; or may choose to go a beefed up supplement, diet, exercise route sans all specific bone meds. I have other chronic health conditions; already take prescriptions for those along with vitamins and some supplements and being older, I find it increasingly difficult to make decisions regarding the best path for me in sustaining my best health.
I appreciate your taking the time and effort to respond and will discuss this with my pcp, who is a family practitioner either before or at my next annual exam in January.
A specialist is a good idea as treatment decisions can be complicated. I wish you good luck and encourage you to consult our website, AmericanBoneHealth.org, for information to help focus conversations with your health care providers!
It came to my attention that Reclast (zoledronic acid) holds its BMD gains quite well so I became interested in this medication and read a few articles that I thought I would share with you.
This is my first post here - I have been active on a Facebook group the past 18 months and recently posted these comments with links.
"Dr. Ego Seeman,
"Several very insightful studies have been published regarding zoledronic acid treatment. In a post-hoc analysis of pooled data from the HORIZON studies, there were comparable ~30% reductions in clinical fractures in those who received a single infusion or three or more annual infusions.""
Thank you for taking the time and effort to post this information, Lilo. I will read the links with interest.
I received a phone message from my ins. that the request for Prolia infusion was approved. However, having heard from others about the negative side effects experienced by many and medical site reviews suggesting caution as well as listing neg. effects, I'm thinking to avoid Prolia and leaning toward taking the yr. vacation from Reclast.
My Dexa scan reports showed improvements ea. yr until this last yr and that one showed maintaining the same scores. Also I had no adverse side effects while on Reclast
Have yet to call the P.A. to request recent copies of both blood and Dexa scan reports and have a couple of other questions for her as well.
Your welcome - I hope there is some helpful information.
I am not taking any medication myself but if I were I would insist on bone turnover markers to ensure I was responding to the medication as expected. Perhaps they would be advisable during the year off from Reclast?
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