Prolia Shots for Increasing Osteopenia
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Oh, oh Bosum. If the shrinkage is over a short period of time it could mean some osteo changes in the spine. We all shrink as we get older but think it is usually gradual. Good luck with the MO today. Do let us know.
dpako: I think we've covered the differences between Fossamax, Actonel & Boniva versus Prolia or Exgeva numerous times.
The first 3 are oral meds. They are often started with early osteopenia. They work totally differently than Prolia. My GYN monitored my bones long before I had breast cancer. I started Prolia after chemo when the drugs tanked my bones into full osteoporosis. You can google & read all about the differences, but here's one quote from what one source believes: Fosamax (alendronate) is a first-choice treatment for osteoporosis, but taking it can be a hassle. Prevents bone loss. Prolia (Denosumab) is an effective and convenient treatment for osteoporosis if other options haven't worked or aren't appropriate for you.
Exgeva is generally used for bone mets.
It comes down to matter of what your docs are recommending and finally if you trust your docs. Of course they all have side effects. You can research forever, but eventually you need to make a decision & put it behind you & move forward. Revisit that decision after a year. Or after two years when you can get the next DEXA scan paid for to see the changes.
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Sorry - double post...
Oh, oh Bosum. If the shrinkage is over a short period of time it could mean some osteo changes in the spine. We all shrink as we get older but think it is usually gradual. Good luck with the MO today. Do let us know.
Dpako: I think we've covered the differences between Fossamax, Actonel & Boniva versus Prolia or Exgeva several times in the last month.
The first 3 are oral meds. They are often started with early osteopenia. They work totally differently than Prolia. My GYN monitored my bones long before I had breast cancer. I started Prolia after chemo when the drugs tanked my bones into full osteoporosis. You can google & read all about the differences, but here's one quote from what one source believes: Fosamax (alendronate) is a first-choice treatment for osteoporosis, but taking it can be a hassle. Prevents bone loss. Prolia (Denosumab) is an effective and convenient treatment for osteoporosis if other options haven't worked or aren't appropriate for you.
Exgeva is generally used for bone mets.
As everyone has said, you really don't want to take the chance of breaking a hip & being "warehoused" in a rehab facility or a nursing home. It's a particularly hard recovery - especially as you get older.
It comes down to matter of what your docs are recommending and finally if you trust your docs. Discuss this with your GYN if you don't trust your MO. GYN docs have been monitoring osteoporosis for years as a result of menopause. Of course they all have side effects. You can research forever, but eventually you need to get comfortable with your decision & put it behind you & move forward. Revisit that decision after a year. Or after two years when you can get the next DEXA scan paid for to see the changes.
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BB- I think the loss of height may be indicative of osteoporosis BB, but you should ask. My mother had osteoporosis and lost like an inch in her height. Have you had a dexa scan lately? Insurance usually pays for them every two years.
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dpako - I had surgery in '95 to have a new gastro-esophageal junction made - mine was gaping open. As a result my esophagus was somewhat tender, and I need to be cautious about irritating it. In 2001 I had a total hysterectomy/oophorectomy, so entered surgical menopause at 45. The loss of estrogen encouraged osteopenia, I don't know if I already had it as my first baseline DEXA was after the hyst/ooph - but I am a physical candidate anyway - petite, small boned and Caucasian. I tried oral bisphosphonates, both Boniva and Actonel, but because they have esophageal burning as a SE I could not tolerate them due to that earlier surgery. Prolia has brought me back to a normal bone density with no side effects, so as long as I am on an AI drug my MO says I will be on Prolia. I am in year 6 of AIs, and plan to continue them for the foreseeable future
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thanks specialk I have no esyphygus issues so when I see mo I will ask her what her thoughts are as far as continuing prolia or go on Boniva whatever she thinks I should do I will definitely follow up with it. I am just wondering if I can switch to oral meds once I started wit proli
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Prolia is also known to help with risks of bone metastasis. I've had one injection with no SEs so far. I'm borderline osteopenia and my MO is being proactive
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Special, that WHO article was an eye-opener: it was the first thing I’ve read that confirmed my suspicion that not just underweight/small frame but also obesity could be a risk factor. (I have the perfect storm: small-frame and obesity. Endomorph with ectomorph bones. I can almost hear the cracks starting to form…). My last spinal X-ray (taken after a recent upper back overuse injury) revealed “mild degenerative changes” and “convex wedging” (narrowing of the intervertebral space that is more pronounced in the front) and have shrunk 1/4”. All the women on my mom’s side lost height. My mom was 5’2” when she got married, and when she died at 85 she was well under 5 feet. Same with her mom—early photos showed her to be sturdy, and when she died at 92 she was 4’10” and frail. My sister used to be 5’6”, and no delicate flower—large-boned (mesomorph) but obese since childhood. She’s now 5’4.” I was 5’4” (and slender) on my wedding day; now I’m 5’2.5” and will probably leave this earth as a five-footer.
I have GERD, so oral bisphosphonates are not an option for me. Prolia (denosumab) was the answer—no veins to have to trash (with only one arm usable for needle sticks that’s important), milder & shorter SEs than Zometa. Both Zometa (aka Reclast) and Prolia confer anti-mets protection too. (Xgeva—note the spelling—is a higher-dose version of denosumab and is administered more frequently in patients with bone mets).
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Thanks for the info SpecialK!
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Special K- thanks for that link and finally getting around to reading it. Like ChiSandy, also surprised to hear that excess weight can have a negative effect on the bones. But in many respects, that does not surprise me either. I come from a line of tall, large boned women and my mother had osteoporosis at the end of her life. She had a hysterectomy in her 50s, but was on hormone replacement therapy. She did not fit what we were told at the time of the small framed or underweight woman.
Now that being said, I am on a downward trend with my weight, and my BMI has gone from 36 at it's highest and now at 31, and trying to get to around 28 where I may settle. I am working with an endocrinologist who does not agree with the charts and says having a bit of extra weight is what helps people in middle age when they get sick. I lost 40 pounds with some multiple health issues in 2012 (including bc) but gained back 30. Now down 20 lbs this year (30 from my highest weight), and 20 left to go. I am seeing my MO in another 10 days and will have to ask him about the weight thing and bones. My cancer docs have been on me to loose weight, but as we know, one problem solved can often cause another.
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Hi ladies- I had my recent Prolia shot end of July during my MO visit. Only some minor aches and pains for less than 48 hours, nothing I cannot handle.
I asked the MO when we would finish with the Prolia shots? He thinks this may be the last one given I am done with the AIs next March. But we are redoing my bone density at the end of the year and he said it will be based on the results of that. If everything looks good, I am done with the Prolia shots.
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Way to go Jazzygirl
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Just a quick update. I had my second Prolia injection on Friday with no noticeable SEs. Will find out more about bone density next month.
Happy and Blessed Holidays All
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Butterfly- good news!
I had my bone density done earlier this month and my femur heads are good but the spine is clearly in the mid range of ostepenia. Things are stable. But I expect will likely get my final shot in January and that may be it for me as I come off the AIs in March of 2018 after five years.
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I just had blood work done last week prior to my 4th shot in January. The T scores, which were full osteoporosis after chemo, have now moved back into osteopenia. For example femoral back from -2.5 to -2.0. My Gyn was reluctant to do another shot because my Creatinine was up to 1.0 (the high for the normal range at this hospital is 0.9). I was concerned because my GFR went down to 54 - so 6 points below the lowest normal. The oncologist said he is not worried about Prolia and the kidneys - so go ahead with shot #4.
I asked him what would happen if/when I stop Prolia since there have been several articles lately about how long to take it. He says any improvement will bounce right back down if I stop. Note: I'm ER/PR negative so Als are not a contributing issue. His recommendation is to take the shot every 6 months for FIVE years. Then take a break and start over for another 5 years. I hope to get the 4th shot & then do some research.
Special K - haven't you been on Prolia for a good while?
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minus - yes, I have received a Prolia injection every six months since Feb of 2012, so almost 6 years. My MO says as long as I’m on an AI I’m on Prolia
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MinusTwo, your gyn is confusing prolia with zometa, Zometa is contraindicated with renal disease, e.g. if GFR is under 33 or so whereas prolia is not, it is the drug of choice for osteoporosis or worsening osteopenia in patients with renal disease, is even used in very severe renal disease. Your MO has it right.
Both require adequate vitamin D ( at least over 30 ng/ml per the Endocrine Society) and calcium to provide between 1.2 and 1.5 gm elemental per day in divided doses, or they will not work as well
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@ chronicpain: Your statement about calcium may not be exactly right. I have been on Prolia for close to two years and I am not taking any calcium. I do make sure I eat well and eat foods high in calcium but I don't take any supplements. I do take Vit D3. They have been monitoring my calcium levels that remain just normal.
Depending on your individual situation your oncologist will make the recommendation about what supplements you need to take while on Prolia.
Best to all.
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CronicPain - I don't think she's mistaken - just EXTRA cautious, but thanks for the thoughts. She's OK with MO's orders to go ahead. And yes, she requires good numbers for both calcium & Vit D in my blood work before each shot.
Muska -Yes, each of us have different supplement requirements. I do take 1480 mgs of Calcium per day and have done for many years. Even with that load my calcuim levels are just average at 9.6. I also take 5000 IUs of Vit D per day. My Mo has just approved to back off to 2000 on the Vit D for awhile to see if my levels will stay at 50-60 or drop off again.
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Hi friends- my MO also says to keep up with the Vit D and calcium for Prolia to do it's thing. I take 2000 of CA daily, and 5000 of Vit D as the later has always been on the low side and my PCP thought that was okay but no higher. Vit D can be toxic so you have to be careful with the dosage.
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If you're taking Vit D, it's also important to take Vit K2 (not K3) as it helps D3 work better. Since I am never sure if I'm getting the right amount through diet alone, I supplement with my naturopath's guidance.
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I take a multivitamin every day and it includes Vit K. Good news that I like the dark, green leafy vegetables, and broccoli & asparagus & Brussels sprouts - some of the foods rich in Vit K. Maybe I'll ask my PCP to test it next time I do blood work since it appears there is a reduction of Vit K in the elderly.
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I had my first Prolia shot two days ago and woke up early this morning with pretty bad joint pain in my wrists, ankles and even fingers. Also feel feverish. Is this normal, especially 36 hours later? I can't take NSAIDs and Tylenol isn't cutting it. Any suggestions?
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Interesting article on Calcium: How much calcium do you really need?
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ready - are you ER/PR positive and taking hormone blockers or Als?
I've never had any side effects but we are all different. Do call your MO and ask what they recommend.
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Muska: Calcium intake can certainly come from diet OR from supplements if patients are trying to treat their osteoporosis, but recommendations are indeed to try to get between 1.2 and 1.5 gm elemental/day in divided doses ( by doses I also mean calcium rich food "doses") to support bone. If you can eat or drink enough of it ( and the right kind) you can be lucky to avoid hassling withh supplements. It is always nicer to get it from diet if you can. People who are on acid blockers ( like for GERD) and take supplements should also be sure their supplement is calcium citrate and not carbonate, as the latter is not well absorbed with blocked acid production.
You can measure vitamin D to get a good sense of whether you are getting enough, but measuring blood calcium will not tell you if your intake is adequate for optimal bone. Blood calcium is not a good way to know if you are absorbing enough calcium or not ( from diet or supplements) because in adults, with normal renal function ( i.e., most women getting breast cancer treatment) , if not enough is taken in, the body will rev up to suck it out of the bones by raising PTH ( parathyroid hormone, comes from little glands in your neck) which then increases bone resorption ( among other things) to keep blood calcium normal, but at the expense of bone. This can fool you into thinking you are getting enough.
An indirect ( but more expensive) way of better assessing intake and more importantly absorption adequacy to protect bone, if vit D is already robust, especially in patients whose bone density is worsening, is a blood PTH and a 24 hour urine calcium with urine creatinine ( cannot do the latter if on diuretics or have significant kidney disease). If PTH is high, vit d. is robust, and urine calcium is low, you are either not taking in and absorbing enough calcium or you have a PTH abnormality.
Docs won't let you have a prolia shot if your calcium is low for ( rare) because prolia can lower it more by interfering with bone resorption, and even cause a seizure ( superrare) but just being good enough for getting the shot does not mean the bones are getting all they should long term. The few people who get muscle aches after prolia ( and zometa) often are not taking enough calcium around the time of dosing , especially the first dose,.
Vit D toxicity almost never occurs with a 25-OD level under 100, ( or even much higher is required) and toxicity with 40-70 simply is not seen. Just standing in the sun a couple hours naked if you are Caucasian can get you to 90 ( not recommended -- remember skin cancer
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MinusTwo, I am ER/PR+ and on Letrozole hence the Prolia shot. I've been on Letrozole for 6 months. Feeling better today so thankfully I only felt crappy for 24 hours.
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Hi friends- well I had my 6 month check up with the MO yesterday. I confirmed once again I am to complete the 5 years on the AIs this March. I did get my Prolia shot and asked if it was going to be the last one? The CNP I saw yesterday said she thought I should stay on it, given I came in to this with slight osteopenia. So I am scheduled to get another shot this summer (I won't see the MO for a check up again until next January). My endocrinologist told me she also thought I should stay on it longer given the AIs are cumulative and will take awhile to come out of my system anyways. Okay with it, but concerned insurance may not cover this much longer?
Doing okay so far on the shot SEs, no achiness yet. Last time, I only had it for a day about 48 hours after. We will see what tomorrow brings.
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My mo took me off Arimidex after 6 years because I have osteoporosis low back, and I refuse Reclast. She now put me on evista saying it’s a 2/1 deal. I have read the SE and not sure it’s worth it considering I can have a heart attack. I’m afraid to do Prolia or Reclast because of the SE with jaw necrosis, I’m in my 40s and just had to have a sudden root canal/crown. If I was on the infusion or shots, what would I have done? This is so troubling for me? Any suggestions or experience with this please
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B123- very valid concerns about SEs. I could never take tamoxifen due to the risk of stroke (family history), but that was never suggested for me as well. I had concerns too about the dental issues with Prolia, and had a possible extraction facing me last year, but just ended up having the crown removed, the tooth underneath fixed, and the crown replaced. I know there may be more root canals, dental surgeries and the like in my future.
I would suggest talking to your dentist and your MO about your concerns and how an issue will be handled if it comes up. I talked to my dentist when she mentioned the possibility of extraction and she told me she would send me to an oral surgeon, but had several patients either doing the Prolia shot or receiving denusaumb (drug name for Prolia) for bone cancer. I talked to my MO about maybe needing an extraction last year around this time, and he said we may need to stop the shots? Okay to do if you know something has some lead time, but to your point, you never know when you will need an emergency root canal either, right? It is a slippery slope on this for sure. If I find I need some advanced dental care, I am stopping the Prolia. I only agreed to do it for sure through the AIs and through this summer since I am coming off in between cycles.
Doing well with SEs so far since Friday, no aches yets! I am going to swim today!
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Jazzygirl, sounds like you have a good plan in place. But the shots are 2x/year, so if you need to get a root canal right away.. it's still in your system? Ugh I'm very worried. If my tooth broke I would need something done ASAP so I am not understanding how that would impact my jaw following. I did not know Tamoxifen also has a risk of stroke?? That is a good idea about your tooth and crown, thank god that worked for you. Enjoy your swim ☺️
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