Osteoprosis Treatment and GI Issues

Posted by cardinal26 @cardinal26, Aug 26 8:47am

Hello all! I need to decide on next step for osteo treatment and have been so overwhelmed and frozen with fear on what to do. Hoping you can guide me with your stories and advice. I am in my late 50’s and have been treated over the years using Fosamax (18 months), Forteo (2+ years) and now I’ll need to go on something else. My spine is -4.1 and hip is -1.4. I have suffered from life-long gut issues and after multiple doctors and tests, IBS has been the continued diagnosis. I had heard that because of my IBS I have secondary OP as I have also been diagnosed with malabsorption, inflammation and dysbiosis. I am being treated for these conditions the last few weeks, so far with much success. I have also heard that I need to get my gut healed before I can expect the OP to get better. I recently saw a rheumatologist who is recommending further blood work as well. Because of my gut issues, annual Reclast infusion has been the med recommended for me because it does not enter the GI tract. But I am terrified of the risks and side effects. Thoughts on what I should consider? Who else I should see? What would you do? Thanks so much.

@cardinal26 I am going to have my first reclast infusion on the 1st of Sept . My rheumatologist told me the most side effects most people have are flu like symptoms. I debated about having this for a long time but since I have already had 2 back fractures I don't want a hip fracture . So if you like you can follow me for updates. take care .

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Hello @cardinal26 and Welcome to Mayo Clinic Connect. We are happy to have you here! I think you have come to the right place to link with others with shared experience around osteoporosis and GI issues. I would like to invite @contentandwell @sue225 @artscaping into the conversation. While we're waiting for others to join in, I have done some research on the web and was able to find multiple sources about the relationship between IBS and Osteoporosis. Here is an interesting article called Osteoporosis and Gastrointestinal Disease: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2950667/

Have you spoken to your provider about concerns between IBS and treatment? When were you first diagnosed with Osteoporosis?

Looking forward to reading more of your posts,

Kelly

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@cardinal26 I have been on Prolia for two years with good results in both the spine and hip. It is given by injection every six months. Has your doctor mentioned this medication? I have IBS-C. It may be making my constipation issue worse but it was a pre-existing problem and I am also on metoprolol so can't really know for sure. In any event, I'm still continuing with Prolia. I suppose I find it convenient. And other than the aforementioned issue, I dont seem to have any other side effects. With the first two injections I did experience a lingering fatigue but nothing with this last injection on July 8th. In addition, I must take 2000iu of vitamin D every day and a small dose of a calcium citrate supplement. I had given some thought to trying Reclast this summer but with Covid-19, I decided to stick with the devil I know.🙂

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@kellyhahn1

Hello @cardinal26 and Welcome to Mayo Clinic Connect. We are happy to have you here! I think you have come to the right place to link with others with shared experience around osteoporosis and GI issues. I would like to invite @contentandwell @sue225 @artscaping into the conversation. While we're waiting for others to join in, I have done some research on the web and was able to find multiple sources about the relationship between IBS and Osteoporosis. Here is an interesting article called Osteoporosis and Gastrointestinal Disease: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2950667/

Have you spoken to your provider about concerns between IBS and treatment? When were you first diagnosed with Osteoporosis?

Looking forward to reading more of your posts,

Kelly

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Good article. Very in-depth and I am saving it so I can return to it and carefully reread and look up words I am unfamiliar with, (e.g. osteoprotegerin).

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@lioness

@cardinal26 I am going to have my first reclast infusion on the 1st of Sept . My rheumatologist told me the most side effects most people have are flu like symptoms. I debated about having this for a long time but since I have already had 2 back fractures I don't want a hip fracture . So if you like you can follow me for updates. take care .

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Hello @lioness,

I can certainly understand your willingness to try the Reclast, especially after two back fractures. I am looking forward to hearing about your results with the Reclast infusion. After the infusion will you have a follow-up bone density test in a few months or will it be a year before you will have one?

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Hello @cardinal26 and others,

I am so glad to see this new discussion group on GI issues and bone loss. Having had three surgeries of the upper digestive tract for carcinoid tumors and also having IBS, I also dread the onset of serious meds for bone loss. For many years I've been taking Evista which has worked well on the spine, but my doctor has said that it does not work well on bone loss in the hip. As I currently just have osteopenia, I'm keeping a careful look at the bone loss in the hip. When the hip reaches osteoporosis, I'll have to make a decision on a more serious bone-building med. I'm looking forward to hearing about everyone's results with these different meds, as well as the side-effects.

I have a few questions: How often do you have bone density tests to see how effective the meds are? Another question, I see that @sue225 says that her Prolia is given every six months. How often is the Reclast given?

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@hopeful33250

Hello @cardinal26 and others,

I am so glad to see this new discussion group on GI issues and bone loss. Having had three surgeries of the upper digestive tract for carcinoid tumors and also having IBS, I also dread the onset of serious meds for bone loss. For many years I've been taking Evista which has worked well on the spine, but my doctor has said that it does not work well on bone loss in the hip. As I currently just have osteopenia, I'm keeping a careful look at the bone loss in the hip. When the hip reaches osteoporosis, I'll have to make a decision on a more serious bone-building med. I'm looking forward to hearing about everyone's results with these different meds, as well as the side-effects.

I have a few questions: How often do you have bone density tests to see how effective the meds are? Another question, I see that @sue225 says that her Prolia is given every six months. How often is the Reclast given?

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@hopeful33250 my endocrinologist told me if I had the Reclast infusion I could probably go 18 months before having to think about doing anything again. Reclast is what she prescribed for her elderly mother-in-law who is physically and cognitively challenged and Reclast means fewer trips to the hospital.
With Prolia, my bone density is done on the day of my follow up appointment at the clinic (which is usually 18 months from the last appointment).

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@sue225

@hopeful33250 my endocrinologist told me if I had the Reclast infusion I could probably go 18 months before having to think about doing anything again. Reclast is what she prescribed for her elderly mother-in-law who is physically and cognitively challenged and Reclast means fewer trips to the hospital.
With Prolia, my bone density is done on the day of my follow up appointment at the clinic (which is usually 18 months from the last appointment).

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Very helpful information, @sue225. Thanks so much!

Liked by sue225

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@hopeful33250

Hello @lioness,

I can certainly understand your willingness to try the Reclast, especially after two back fractures. I am looking forward to hearing about your results with the Reclast infusion. After the infusion will you have a follow-up bone density test in a few months or will it be a year before you will have one?

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@hopeful33250 My. Next bone density will be next July unless I can get one sooner but yes I,LL let you know what it is and if am improvement I have a T score in hip of-1.3 femoral neck T-2.2 at last dexascan Dr said the Reclast is only once a year that's why I decided on this one

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@sue225

@cardinal26 I have been on Prolia for two years with good results in both the spine and hip. It is given by injection every six months. Has your doctor mentioned this medication? I have IBS-C. It may be making my constipation issue worse but it was a pre-existing problem and I am also on metoprolol so can't really know for sure. In any event, I'm still continuing with Prolia. I suppose I find it convenient. And other than the aforementioned issue, I dont seem to have any other side effects. With the first two injections I did experience a lingering fatigue but nothing with this last injection on July 8th. In addition, I must take 2000iu of vitamin D every day and a small dose of a calcium citrate supplement. I had given some thought to trying Reclast this summer but with Covid-19, I decided to stick with the devil I know.🙂

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@cardinal26 I was glad to hear someone using Prolia. I am on Tymlos everyday injections to increase my bone mass. I had a 9 hour back fusion surgery on June 9th from T10 to my pelvis. I have soft bones, so that's the reason I'm on Tymlos for 2 years and then I will probably do Prolia if it's offered to me. My back had degenerated to cause a scoliosis and my L-4 & 5 had severe stenosis. It takes a year to recover. It will be 3 months on Sept. 9th. I'm off of all pain meds, so I can drive, but I still get very tired. I walk a few times a day, but it's been so hot here I have had to go down to 1 time. I take 500mg of calcium citrate 2 times a day. I get my vitamin D from my vitamin, which has a lot in it. Thank you for posting about Prolia. I'm glad you are not having side effects as I have heard from many having side effects from Reclast.

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@lioness

@hopeful33250 My. Next bone density will be next July unless I can get one sooner but yes I,LL let you know what it is and if am improvement I have a T score in hip of-1.3 femoral neck T-2.2 at last dexascan Dr said the Reclast is only once a year that's why I decided on this one

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Once a year is a nice schedule, @lioness. I would agree with that wholeheartedly!

Liked by lioness

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Hi, @cardinal26, While I don't have the GI issues you report, I have been on osteo meds for years, including the two you mentioned. This is my 4th or 5th year for my annual Reclast infusion. I am happy to report no side effects; the procedure is easy and takes maybe 10-15 minutes and until the Dexa Scan results last year, each infusion revealed slightly improved density results. Last yr showed no improvement but also no decline and the doc said that at this point, the goal is to continue to maintain current levels.

With a stage 3 chronic kidney disease diagnosis (ckd) a yr ago, I read an article saying that Reclast was not advised for some ckd patients. Alarmed, I researched other meds and Prolia was mentioned as an option. I called before my appt and my doc assured me that I could take either; I stuck with Reclast. From what I'd read, Prolia seemed to present more side effects…and may need to be taken? every 6mos vs 1/yr with Reclast.

Ironic the timing of your post for me. I'd checked my last scan date and realized I was already a couple of months behind. Just yesterday I called my doc's nurse for help in scheduling my annual Dexa Scan telling her I was behind. Because of the kidney and compromised lungs, I have been very strict in self-isolating due to Covid and hoped for an early morning density scan. My clinic has a large waiting area, with one area designated for labs and the opposite for machine administered tests. I was surprised to learn that due to imposed restrictions on the number of patients allowed at one time, requests now for mammagrams are being scheduled in mid-January at this clinic. I'd not given a thought to possible scheduling delays for tests. She promised to alert the schedulers in her request for my appt. It was a happy surprise this morning to get a call offering an 8:30am bone density appt. on Sept 30th! Surely beats having to wait months.

Medicare requires the Dexa results prior to scheduling/receiving the infusion so there is a customary wait for the Reclast office to schedule.

Again, I can't speak to your GI or other health conditions but would definitely encourage you to decide on your plan of action as soon as you can because I'd not considered delays in treatment. With the osteo, my only added meds are taking 1200 mg of calcium daily and 5000 mg of Vit D 3 daily but each patient's condition differs. As with each prescription I take, a long list of possible side effects is enclosed. Sometimes they sound more dreadful than the malady they are to treat. I am happy and relieved to be taking Reclast with no side effects because it is helping me sustain my aging bone density levels. Best to you going forward.

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@fiesty76 I'm glad to hear you have been on Reclast infusion as I'm just starting Sept 1I was told I probably won't have any side effects maybe flu like symptoms was this your experience?

Liked by fiesty76

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@lioness, Of course every patient is different but I experienced no side effects whatsoever. Hoping the same goes for you as well!

Liked by lioness

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