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Bisphosphonates after Evenity
OK I am back again and wanting to pull my hair out. When I initially was diagnosed with Osteoporosis (extremely bad bone density test), the rheumatologist had me go on Evenity without telling me I would need to followup with a bisphosphonate. Now that I am almost ready for the next step, I am at a standstill. I am 75 years old with aching bones and joints. I was treated for PMR (Polymyalgia rheumatica) and was on prednisone for pain management for a long time. Finally weaned off of it and only take an Ibuprofen when the throbbing is intense. I still ache though. Now all of these bisphosphonates have horrible side effects. I researched and joined the Facebook groups for Reclast, Prolia, and Fosamax. All these drugs have very terrible side effects and none seem less harmful than the other. I am contemplating just not going forward because whatever years I may have remaining, I do not want to be in pain or become an invalid from a possible femur fracture or have my jaw bone disintegrate or lose my teeth.
Maybe if I were younger, I might take the plunge. What would you do if you were in my shoes?
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If you do nothing, you are still at risk of fracture, and the risk will be higher than the risk by taking a medication. I would not suggest you do nothing.
Most people do ok with these drugs. Some do not, but unfortunately those people tend to be far more vocal online, so you end up with the impression that the drugs are no good.
I would switch doctors and talk to an endocrinologist who is experienced with osteoporosis.
One idea, given your age, is to take Prolia with the understanding that it's permanent (so, no concern about rebound effect.) But, again, that's a conversation to be had with a proper doctor.
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2 ReactionsBelieve it or not I got an endocrinologist referral but she only covers thyroid and diabetes. She knew very little about osteoporosis drugs especially as seen when she wrote me a script for Reclast and it was for 3x yearly. Reclast is a once a year drug. She did send a list of warnings for this drug which really made me reconsider. Unfortunately Humana HMO Gold Plus only has a few on their list and it does not specify what they handle. I am back to square one and not feeling good about it.
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1 ReactionYOu need to work with a ENdo that specializes in metabolic bone disease. OP therapies and supportive treatments and research are changing every month - you need someone who is a specialist and is dedicated to trying to heal this disease. Reclast although generally a once a year drug, can indeed be prescribed at a reduced dose 3x a year. This is helpful for senstive indiviuals.
A history of steriod use is a special category of needed support - so I send you postive energy that you work with someone who has expereince with your situation.
Also, as in your situation I was suprised I needed a follow up drug... I was on tymlos for 2 yrs and my follwup options were were Actonel or Evista . I needed something that did not stay in the body for a long time .
It is reported that you are likely to lose your gains from Evenity in a year if you don't follow up with something else. I have some friends on Evista ( a SERM) after recent Evenity but too soon to know how they maintain. I've read in another post that it may not be as strong as the bisphosphonates and maybe gains start to drop after taking it for 6 months after Evenity? Not good your doctor didn't discuss the next step with you and we'll understand your reluctance to take bisphosphonates with PMR. Best wishes going forward.
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1 Reactionmy thought is that your pain may be coming from your response to the medication and your response is needed to make your bones stronger. At 75 you still have a good deal of life left and if you were to fall in fracture your bones because you didn’t take the medication you would have an even worse quality of life. You’re asking many serious questions which we can’t answer because we’re not you. However, what I would do as me is get more information to make an educated decision. That’s what’s missing in the picture you painted. YOU need to be in the driver seat, but you can’t do that without being educated. It’s not easy to navigate to even get educated. I found it difficult being in my 60s. You will need to find (if you want to know what I would do.) a bunch of different doctors to answer your questions. Find some endocrinologist who do the bone medicine specifically And inquire of the nursing teams or staff and make an appointment with the doctors. I have a doctor who’s got terrible bedside manner however he’s a pretty good doctor so I stay with him and I use his medical team to help answer questions. I can’t answer this for you. I can answer it for me and for me the answer is to tolerate the horrible side effects, which did go away after two months and to stay on the medication because I asked for tests after one year that showing I’m having I have a good response to the medication’s. You need to be religious about going forward with a protocol and you need to have a good support system. My doctors in team at UCSD just don’t have the time and staffing anymore to deal with individuals so I have to get in their face. It’s my body and my responsibility but I’m at a great place that does all the testing I asked for. So I can be confident I’m doing the right thing for me. I am not afraid of challenges. I am not a stranger to struggle. But you might not want to invest the time or the energy or the discipline. So I can’t answer for you, but I can tell you what I would do for me! Put a good support system in place and go for it. That’s what I would do.
https://www.pdr.net/drug-summary/?drugLabelId=Reclast-zoledronic-acid-437#classes-
This site has information on dosage possibilities as wells reactions from taking bisphosphonates.
Unfortunately, I know adverse reactions from researching Reclast … that is why I am now researching Raloxifene/Evista
@susanew - I'm in a similar situation - finishing my last month of Tymlos and had to make the decision of what to do next. I'm 61, was diagnosed right before turning 59. I am lucky to have found a very knowledgeable NP at an osteoporosis clinic and she listens/answers all of my questions, which I always have a list of when I go in! While I don't want to take a bisphosphonate, after meeting with her a couple of weeks ago, we have concluded that Reclast is the best option for me. I would love to try HRT only (there are a couple of people on this forum doing that), but I was able to get to osteopenia, and want to stay there, and my NP did not think that was a good option for me. We discussed Evista in addition to Reclast, but not instead of taking it. I may still add HRT (never been on it) - both the NP & my gyn said I can take it if I want to - I wish one of them had been more definitive!
There are so many bad/scary stories about all of the drugs we have to take, but for me, the good outweighs the bad. I always think that people with complaints are more vocal than those without issues. Discussing my concerns with the NP was very helpful - she treats many patients and said overall she has good results with Reclast.
I've been on Prolia for 5 years and am extremely miffed because 2 different oncolgists prescribed it without telling me there is no good exit strategy. I only have osteopenia and was put on Prolia to counteract any bone loss due to hormone treatments tp prevent cancer recurrence. I now am seeing a really good endocrinologist who specializes in osteoporosis. I'm grateful everyday for him. From experience I've learned Prolia can cause joint and jaw pain which I've successfully thwarted by taking collagen capsules. The risk of osteonecrosis is extremely low. That tidbit came from both my endocrinologist and my oral surgeon. Also, every day I take a calcium supplement in the a.m., drink 2 glasses of milk, and have a multi- vitamin with calcium after dinner. So far, so good.