Thoughts on Alendronate?

Posted , 11 users are following.

I'd appreciate some thoughts/comments regarding Alendronate (Fosamax) 70mg. Just over 2 years ago I was diagnosed with PMR by my GP. I was sent to a rheumy and my rheumy #1 did a DEXA scan on me 2 weeks after I had started taking prednisone, and said I had Osteopenia so he had me take Alendronate 70mg once a week and I've been taking that dose ever since for the past 2 years.

In the 2 years since I started this journey I've gone through a real process and have tried to stay more in control of my treatment as specialists have caused as many problems as they've solved. I saw rheumy #3 last fall and basically "fired" him by not scheduling the next appointment after he wanted to add NSAIDs to my pred dose and said this would help to "speed up my reduction".

Now for my current problem: My Alendronate prescription is running out very shortly and my GP wants me to go back to Rheumy #3 about the Alendronate and possibly another DEXA scan. I can do this but Rheumy #3 is then going to find out that I ignored everything from the previous appointment and have continued on perfectly well with the very slow prednisone reduction. That could bring a real firestorm between us.

My gut instinct is that the original Osteopenia diagnosis is most likely my natural condition because I'd barely been on pred at the time of the DEXA scan. I'm also hesitant to continue on the alendronate after 2 years but can't really give a good reason why except that I know that sometime in the next 1-2 years it's likely that there's going to be some dental extractions. Maybe I'm just making something out of nothing.

Any thoughts one way or the other regarding the continued use of alendronate?

2 likes, 11 replies

11 Replies

  • Posted

    Good evening The Raven

    It's your lucky day. I was diagnosed today I was diagnosed today January 2nd with osteopenia. I'm a 56 year old female. I was diagnosed with PMR in October 2017 and have been on prednisone ranging from 17.5 mg to my current 9 mg due for the next step down. I am on my second rheumatologist at this point and expect to be looking for a new one I am on my second rheumatologist at this point and expect to be looking for a new one as we do not we do not agree on we do not agree on treatment. She wants to throw on Methotrexate or Plaquenil. No thank you. I have other health conditions that require my taper to be slower than the average. I've always been active. I have other health conditions that require my taper to be slower than the average. I've always been active. I have other health conditions that require my taper to be slower than the average. I've always been active exercising walking. I have other health conditions that require my taper to be slower than the average. I've always been active exercising, walking, hiking and weightlifting though my fibromyalgia as required made to cut out the weight lifting. I still. I still Dabble with some light hand weights I keep in the living room while watching TV.

    The message of the osteopenia from my dexa scan on New Year's Eve was delivered to me on the phone today by the receptionist. She told me the rheumy wanted to start me Fosamax right away. We are our own best advocates. I have been reading everything I can find since I got home from work. So a lot of this is fresh in my mind. Your comment about having another scan. It states that you don't need another scan for at a minimum 5 years because it doesn't change very quickly sometimes just keeping Pace rather than adding bone density. Fosamax according to the literature should be taken no longer than 5 years with a drug break. Each patient's risk factors should to be looked at individually based on risk factors health and other points The options to treat are not that great medication wise. I have a friend who took the Prolia and ended up with lifelong atrial fib requiring a pacemaker. Today is diagnosis comes on the heels of my emergency eye surgery November 20th for a torn and detached retina and macular hole just a spontaneous thing no cause other than age. So as of Thursday I learned that the damage was too extensive to too extensive to be repaired. Legally blind in my left eye with waving and bent bow tie looking figures. So today's news was truly an unwelcome addition to the long list of issues. Best of luck to you. Hope I've helped you with some of your questions. Janet

    • Posted

      Hi Janet,

      Thanks for the response. I see that you're still holding down a job as am I. That certainly adds to the balancing act for dealing with PMR doesn't it? I had to cut back on the physical aspect of my work to keep the PMR on a more even keel. The comment about 5 years between scans was interesting as I didn't realize potential changes could be that slow. It's interesting that you mentioned Plaquenil, as my rheumy #2 put me on that although I was never convinced that it was needed. About 9 months later rheumy #2 retired and I also decided to take myself off Plaquenil to see if there was any change how I felt. There was no difference after I ceased Plaquenil and I haven't taken it since.

      I'm sincerely sorry to hear of your eye issue. Your last months have been a real full plate of challenges. Thanks for the info and comments. I appreciate it! Best wishes to you as well. Raven

    • Posted

      Are all the repeats a problem from your side or is this a new bug on this site? Nothing in that direction would surprise me now...

    • Posted

      Morning Eileen , I'm going to venture to say site oriented because when I pushed reply they did not appear.

    • Posted

      Raven, your question has certainly brought about some good information on this topic for which I need to speak to my doctor any day. As I have no thyroid I have a wonderful endocrinologist I've had for 10 years who I would trust her opinion over anyone. Thanks for turning the conversation. Have a great day. Janet

  • Posted

    You are certainly not making something out of nothing.

    My doctor says that, after a while on fosamax-type drugs, you cease getting further benefit. When I went on prednisone, he did have me get some reclast infusions, but only because I'd had full osteoporosis for decades.

    I assume you know about the downsides of these drugs, especially the potential for necrosis of the jaw since you mention future dental work. I have also read that, though the bones become denser, they may also become brittle. If a break occurs, it can be a far more serious injury and can be hard to heal.

    These are issues you may want to raise with your doctor. Is your GP unwilling to manage this? You might also get your dentist's comments before going to the GP or rheumatologist.

    On the other hand, osteoporosis has really terrible effects- not just bones breaking (for example in a fall), but vertebrae collapsing. So don't take this decision lightly.

    Like so many issues in PMR, this is a decision that requires balancing pros and cons based on your individual case. It seems that most doctors err on the side of "protecting your bones," while people on this forum would avoid these drugs unless successive bone scans indicate that prednisone is like.y to be causing measurable bone loss.

    If you return to rheumy #3 and he or she is affronted by your successful reduction in pred, it may be time to look for rheumy #4. The doctor has a responsibility to discuss consequences of the options, but you have a right to make informed choices, especially when there is no single right answer.

    • Posted

      Thanks for the comments. It feels like rheumy #1 was quick to throw me on the Fosamax generic but that done and now to figure where to go from here. I may see if I can get 1 more refill and stall things off until my next GP appointment in March. You are correct that my GP doesn't want to manage this. I don't think she feels qualified. She is actually a certified physicians assistant but in this rural region many clinics are down to 1 full blown doctor and the rest are assistants.

      I guess there are no easy answers - I was just hoping for one! Hopefully I won't have the need to tangle with rheumy #3. I don know that at some point I'll need to see a rheumy again but am hoping that it'll be some time before that time comes. He's the only rheumy currently on staff in my clinic system and is 45 miles away. A new rheumy would doubtless be further away and with a different medical group.

      Thanks for the food for thought. It's appreciated!

  • Posted

    The most recent thoughts have been that bisphosphonates shouldn't be used for more than 2-3 years maximum without a holiday to try to reduce the longer term risks of atypical fractures and the other bone problems they have now been found to cause. Previously the drug holidays were recommended after 3 to 5 years depending on the drug.

    Researchers at Imperial College London found that use of bisphosphonates changed the structure of the bone formed and this led to the building of bone which was LESS strong.

    https://www.researchgate.net/publication/314272972_Long-term_effects_of_bisphosphonate_therapy_Perforations_microcracks_and_mechanical_properties

    As for the dental work - I doubt stopping alendronate now would make much difference as it remains in the body for at least 10-15 years and those are figures based on the 15 years they have been in common use. Once they have been in common use for 20 years I'm sure the figure will rise. But your dentist is the person to discuss this with.

    Of course my opinion, held by a lot of doctors too, is that if you have an osteopenia result for the dexascan, bisphosphonates are not appropriate as prevention. I have no objection to their use if the osteopenia has worsened significantly after 2 years of pred use. However, I and a lot of others have never had a significant fall in bone density while taking calcium/vit D and a few were OK even without calcium supplementation.

    Having read Janet's post - 5 years is a figure I have never heard for dexascans. There is little point doing them more than 2-yearly in normal patients as the BMD doesn't change quickly under normal condition. However, the change in patients on pred or with other problems leading to osteopenia can be quite quick and the greatest change in BMD is said to be in the first 3 months of pred management - which is why they say the first dexascan should be in the first 3 months to get a baseline, then again after 2-3 years to see if there has been an effect. At my last dexascan, mine had changed by less than 0.1 points over a period of 7 years of taking pred - it isn't inevitable.

    • Posted

      Good information Eileen . I'm wondering how much of my current diagnosis problem would have been alleviated with having had a Baseline back in October? It's good to know that you're doing so well. Janet

    • Posted

      Thanks for the well laid out information. Having another scan makes sense from what you've explained. If the scan shows things to be stable after 2 years I'd question the need to continue Alendronate at least for the time being. I'd certainly continue the calcium/vit D. Going from memory I think the one T score that was mentioned in the first scan was 1.8 and evidently wasn't too upsetting to rheumy #1 at that time.

      I've got a March appointment with the GP that I can work with on my PMR. This morning I took a shot at getting a refill of the alendronate from rheumy #3, figuring I could go along with that until March and if the GP still wants I can try to get in to see rheumy #3 again regarding a scan, etc. The way things are now days there's no guarantee that'd still be in 2019 !!!

  • Posted

    I reacted badly to AA ( wheezing and breathlessness in someone who has never had a cough in her life! ) and got on fine with just calceos As often reported on here the surgeon who did my wonderful hip replacement told me I had "amazing" bone density for my age ( 83 at the time ) I was taking Pred. for eight years.

    Having read about necrosis of the jaw being connected to AA I warned my sister, who has had PMR for a year, to check with her dentist as she has several dental implants but he didn't seem to think they would be affected. I certainly hope not; it would be a jolly expensive unwanted side effect.

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