I understand, @trinity. I live in Michigan, also a place with little sun! I find it interesting that you also have a high PTH but normal calcium level, much like me. Have you had the nuclear scan of the Parathyroid to look for adenomas? I recently had it and it appeared normal.

If you don't mind sharing more, how low is/was your D level? Mine was at 17 for a long time. When I increased the supplements to 4,000 (take in two doses, morning and night) it finally got up to 30. My endocrinologist said that taking two separate doses was probably better than taking it all in one dose.

I appreciate your sharing your journey with this problem!

Thanks for the additional information, @bonnieh218. Omeprazole can also cause bone loss, but you are probably familiar with that?

Prior to my first Prolia injection my D was 9….This has been an ongoing problem for me….I take the prescribed megadoses followed by maintenance recommendations…..I had a surgical menopause at age 29…. My osteoporosis is severe. My rheumatologist plans to recheck my PTH and GFR in a few weeks….He says not to worry…I was the one who had to bring his attention to the significant decrease in the glomerular filtration rate…I have not been to an endocrinologist yet, but pending my recheck, I will request a referral….I have no idea how long my PTH has been elevated; I know only for the last year and a half by virtue of testing…..NOTHING in my lifestyle has changed…I take an ACE INHIBITOR, plus my maintenance dose ov D3 and calcium petites.. I FEEL IT IS PROLIA….I will not sacrifice my kidneys….I am ambulatory and will continue to walk daily as always…I will post more when I have more facts…We all must remain healthy and informed…

@trinity. The information in your post is far beyond my knowledge but I plan to research this to learn more and understand better. I just know that my DEXA numbers were in the osteoporosis range and my doctors – PCP and endocrinologist – both advise me to go on a medication. Both of them seem to favor Reclast.
JK

Thank you for your post, I am not familiar at all with PTH and GER. I am on Generic Fosamax year 2 and like you I had a surgical menopause a bit older than you. I checked with two Orthopods and my GP before starting my " bone med" – plan on a bone scan after the Corona virus settles down for getting tests. Thanks again.

PS I take Vitamin D also.

Hi trinity. I also live in the armpit of Pa. I wonder if it is the same armpit. I started on Prolia and am due for my 4th shot this Thursday. I got the results from my blood work and was shocked with the GFR number. It does make me wonder if it's worth it. I've been relatively healthy my whole life and I don't want to "kill" my kidneys. Actonel didn't help and I was on that for 10 years. I'm really considering stopping the shot to save my kidneys. Although what alternatives work to improve the bones? Have you found out any more options?

Hi Peggy! I live in the village of Wilcox, PA..It is considered NW PA. As you have reviewed my postings, 1 PROLIA INJECTION AND MY GFR PLUMMETED 12 POINTS…My second one was on 3/25….If labs were done prior to the injection and I reviewed them, I would have definitely opted out! !!! I am supposed to have both PTH AND GFR repeated…I still waiting for the order from my rheumatologist. ..I thought midway about 3 months to check the values….I AM DONE WITH PROLIA…I am 67 years old and a retired Director of Nursing…I have also contacted the FDA RELATED TO THIS…PLEASE CHECK YOUR GFR VALUES DURING YOUR COURSE OF PROLIA TREATMENT…IF IT HAS BEEN A CONTINUOUS DECLINE YOU INDEED HAVE SOMETHING TO REPORT….SOUNDS like you are otherwise healthy…Please keep me apprised of progress…Oh, first I started with BONIVA for about 10 years; my stomach was horrible…I had such GI DISTRESS…NEXT was RECLAST…I had a total of 3 infusions…Insurance dictated no further payment or recommendation…Then last year I decided to see a rheumatologist again…Hence PROLIA…My DEXA SCAN IS DONE EVERY OTHER YEAR PER MEDICARE…IN MY age bracket, the bone changes are slower in degeneration now..I WILL continue to walk daily and be active…U have always walked 5 miles daily…I will post after my labs; however, none of us are thrilled to enter the hospital setting for labs due to the COVID 19…I have seen other declines in GFR ON THIS MAYO CLINIC SITE…We as a group need to report negative findings to both the FDA AND PROLIA FOR THEIR ADVERSE REACTIONS. ..KEEP IN TOUCH AND THANK YOU SO MUCH PEGGY…

Hi Trinity. My armpit is NEPA just outside of Harvey's Lake. I am also 67 but not retired yet (although this shut down could put the small dental lab, where I do crown and bridge, out). I started out with fossamax when I was 50. Developed some bone or muscle pain after a few months so was switched to actonel. Took that for 10 years and they then said "Oh, you shouldn't be on it so
long". So it was stopped. Two years ago I was advised to continue some kind of treatment so after consulting a rheumatologist prolia was chosen. I have had four rounds of tests. On 8-3-18 bun was 26, creatinine was 0.9, and gfr was >60. On 3-18-19 bun was 21, creatinine 1.0, gfr was >60. On 10-23-19 bun was 20, creatinine was 1.0, and gfr was 58.7. This time 5-15-20 the bun was 21, the creatinine was 1.2 and the gfr was 47.7! Wow! That was hard to get right with stupid auto-correct! So now they have called me to advise me to see my pcp. The bun number was the red flag but not the gfr???? Are you kidding me? That gfr number puts me in a stage three kidney disease catagory. I take calcium and D everyday. Exercise 45 minutes every other day. Eat a reasonably healthy diet and drink an average amount of liquids. Have no symptoms of kidney issues ,yet. Urine is clear to light yellow. I know they give you all the bad possibilities of stopping prolia but do they outweigh the probability of destroying kidneys? Can kidney function be improved? I'd really like to keep my kidneys in good shape. What are other options for the bones? Is an alkaline diet very useful? I understand it would be quite hard to follow. Thank you so much for responding to my message so quickly. I joked to my husband that I have a "bone buddy". Oh, and I did not capitalize the drugs because I did not think they were entitled to the respect. With the numbers I have what would you do? I'd like to think there are other options but other than diet I'm not sure.

Oh I forgot to say that each round of test preceded a shot. I am scheduled for a fourth shot on Thursday.

Besides reporting elevated PTH and serious GFR #s to the FDA, we need to tell our primary care docs as well. I really appreciate my primary care doc, but I find that I inform her about side effects to meds she's not aware of. She'll say that the benefits outweigh the risks. I've been digging into the scholarly journal literature for research using Chinese traditional medicine for osteoporosis.

I meant to say " . . . and serious decrease of GFR #s to the . . .

Hi bone buddy! I have made a decision to stop Prolia therapy based on my questionable adverse side effects. Since I have had only 2, I will take my chances I won't have an unusual fracture (i.e. thigh)…As previously mentioned I feel my bone density deterioration will be slower as I further age…I will continue walking, taking D3 and Calcium petites to maintain normal serum calcium and vitin D..I have run the gamut of both oral and IV meds to increase bone density and b to no avail..Each had awful side effects…Side effects are prevalent in all medications and since we all respond differently it can be a crap shoot.I am no doctor and am unable to advise you Peggy except see your PCP and discuss ..Normal BUN for us is 10 to 20 mg/dl and creatinine .5 to 1.1g/dl….Also, the DASH diet is beneficial…Let me know how you do Peggy….Thank you

Hi, Trinity. I understand you can't give advice. I wasn't trying to put you on the spot. I was just wondering if those were your numbers what your educated opinion would be for yourself. I value the advice of nurses because they are the ones who really know what is going on. It seems so many doctors turn into corporate stooges and follow the "party line" and don't want to rock the boat. If your interested there is a doctor who resisted the party dogma when his wife developed osteoporosis and he developed a suppliment that is available to the public. The research sounds promising. I don't know if it would be proper to give it out on this site but if you are interested you could message me through facebook.

I have come across another concern for prolia patients. Healthy kidneys filter out the prolia over time and therefore the continual shots are needed. A dialysis patients does not urinate as a normal patient would and would not urinate the prolia out of the body. Dialysis does not filter the prolia out and it would continue to build up with each continual shot. Over time the prolia in the system would cause additional damage to other systems such as the nervous system and immune system and others, causing a slow and painful death. I have been trying to find this information, again, with no luck. I cannot seem to find any more on this but it would be of huge concern to dialysis patients. Is this something else "they" are not telling us about? Are "they" just trying to sell us more of their poison just so "they" can make a buck?