Prolia Shots for Increasing Osteopenia
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karen1956,
Your plan for teeth cleaning is a good one. I get my teeth clean every 4 months and I know good dental hygiene is important especially when on these meds. Thanks for your input. Be well.
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My MO says at least 5 years is OK. I talked to Amgen, the manufacturer, last week. They have people that are safely on Prolia for 10 years. They do recommend taking something else if you take 'drug holiday', or stop or delay ongoing Prolia. Of course they wouldn't recommend a specific drug since I wasn't talking to a doc, so I will be talking to my OB/Gyn and my MO about what to do if/when this happens.
Karen - cleaning should not be a problem, or routine fillings. The problem is extractions or invasive bone issues. You might want to get a 2nd opinion on not taking the Prolia every 6 months as recommended. New research shows that delaying or stopping Prolia causes your osteo numbers to drop down BELOW where you started. They will eventually come back up to your starting point after 18 months. But most of our starting points were bad, which is why we started in the first place. That leaves us at high risk for fracture. I'll be really interested in my MO's comments this summer, since he goes to the SABC every year and gets the latest updates.
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MinusTwo,
Looking forward to what you find out
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Minus - I know cleanings aren't a problem - reason glad appt is right before oncologist is in case any major works needs to be done - I don't think so, but to be sure. Thanks for the information regarding stopping Prolia. I will talk to my oncologist about that after 2 years.
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Is anyone still getting their shots at their clinics during this pandemic? I'm overdue by 3 months and am afraid to go in, but am afraid to stop. I heard it's not recommended to just stop Prolia once you're on it.
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I spoke to my family doctor about this just a while ago on a telemedicine call. The office is doing almost 100% telemed except for well baby visits and immunizations and a few other things that they just can't get around. She said when it's time to come in for the prolia, I will book the appointment, then call her from the parking lot, she will come out in full PPE and I just have to stick my arm out the car window.
I guess I'd say call your doctor and see what their protocol is for immunocompromised patients who need care.0 -
Actually my clinic called me today to come in as they had to delay my shot last month due to the pandemic. I was surprised, but had no choice. They said it's not recommended to go longer than 3 months in between your due dates. So I guess I'll go in with mask and gloves and then just hope for the best. Not a good time to be getting a drug that cause your immune system to be weak! Also, I'm wondering overall, when can I ever quit this drug or can I? I've read there's a risk of fracture after stopping so is this a lifetime commitment? Sometimes I wish I had done the oral drug instead.
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Hi there- I am due for my annual visit with my MO next week on 4/24, where I will also get my 6 month shot. I have not been contacted yet about the visit, but expecting they won't want me to come in to the cancer center (my thought is they would only want patients in active treatment in for chemo infusions, etc.) I would expect they will delay the office visit to another time, although it could be done by telemed,
I like the idea of someone coming out to the car to do the shot in the arm. Thanks for that info as I will ask if they can do that for me.
I will let you know what happens!
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I don't get my shots at the cancer clinic - it's done at my primary care clinic by a nurse. They stressed that they are a "well clinic" as all their sick patients are directed to the hospital. Still unnerving as everything is these days.
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Interesting - I get my shots at my OB/Gyn.
bc - yes you can stop but I've been reading about the consequences w/o substituting something else. Look for Special K's posts. She took it for many years and then stopped. I just finished 4 years and for sure will do one more.
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I got my 2nd shot last week at my oncologist's office. I. had my 6 month visit (in person) with my oncologist and then the shot was in the infusion room. The cancer center had really strict screening guidelines the first was takin temp - then the typical questions. Only patient is allowed in the center.
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Hi ladies- I got my Prolia shot on Friday. Went in to the cancer center for it, also did my yearly MO apt. Not too many people in there, lots of questions before, on the way in, etc.
My MO wants this to be my last Prolia shot with being off the AIs two years and with being on this drug for five years now. He wants to do a bone density end of the year (now scheduled) but also thinks my Vitamin D need to be higher to make a decision. Got some conversation going on between him and my PCP on this right now. I will talk to my PCP about this during my annual physical this fall and also get a second opinion from an endocrinologist around my bone health.
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Jazzy - I've been reading that your shouldn't stop Prolia cold or you bounce back to lower bone strength. I've asked my OB/Gyn to research what she might recommend going forward. She already said it's not going to be biosphosphonates.
Hope Special K still has this on her favorites since I think she stopped, and....
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MinusTwo- yes, I have read that too. I have also been told Prolia is not meant to be a long term protocol either. My PCP is pretty up on bone health. Some things to figure out this year around this, just like when I was coming off the AIs a few years back.
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My medical oncologist suggested 2 to 3 years for Prolia - after 2 years new DEXA scan and decide future direction. Had my second Prolia shot a few weeks ago. I quit AIs in 2010. My PCP who retired a couple years ago did not recommend long term bisphosphonates - I took them when I was on AIs then stopped.
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Hey! Still here... my research indicated one Reclast IV after stopping Prolia, so you are not cold turkey. I think the rationale for this is that Reclast is a once a year infusion - double the effect time for Prolia - and this tides one over so it is not as abrupt a stop. I did not do this, and actually my DEXA after stopping 6 years of Prolia showed no bone loss or change. I was an exceptional responder to Prolia and built back enough bone to have a normal result. I am due for the next DEXA in about six months so we will see if that still holds.
The problem with stopping Prolia at the two year point is that it can take 4 or 5 injections (so, two years) to see any traction or improvement. Not sure it is worth doing, then stopping so quickly.
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I agree about not stopping after 2 years. Seems most docs are saying 5 years.
Unlike most of the other exciting things we've had to take as BC patients, Prolia has not caused any side effects for me. Or if it does, they're so mild I don't remember after 24 hours.
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My doctor has recommended that I see a rheumatologist for my bone loss...anyone else had this recommendation?
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I had an allergic reaction to my second Prolia shot (sad face). My MO suggested Zometa instead, so when I see my endocrinologist in July I'll be asking about that. Have any of you taken Zometa? What's it like (other than by IV which doesn't thrill me one bit)?
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Hello Dear ;
I wanted to find another bc survivor here who using Eviata . I’m on that now since all all other options are off the table . . I was told when taking both evista and tamoxifen to take an aspirin a day to prevent clots . I can’t tolerate a whole tablet so I take 1/2 tablet . It makes me constipated .
I have a heart arythmyia but I need some protection for my very dangerous thinning bones . I was on Arumidex for 9 years I was stage 4 but made a great recovery . I have auto immune issues psoriasis- so I read side effects or prolia and it can cause auto immune responses .
so I felt I could not risk that . When I went off arimdex my estrogen shot uo higher than when I was out in estrogen. So I thought the best option was Evista . I’m not sure I’ll ever really grow bone . I had a minus -4 in my spine . I exercise yoga walking biking daily that helps me feel better .
I hope I don’t develop side effects of evista . seeing my dr this week .
I’ll see what he says .Thank you all
Marcia
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I stated to write a post, then when I scrolled up I saw I had already written the same thing more or less so I back spaced it off !!
Nash - no my oncologist has not recommended rheumatologist for osteoporosis, neither has my pcp. Interesting.
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I may have posted before too - if so, ignore me. ❤ I went to an endocrinologist after first dx of osteopenia.
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When I was still on AI's I had osteoporosis after stopping zometa, so my MO referred me to an endocrinologist who recommended Fosamax. But I thought I wouldn't be able to comply with that drug, so asked to start Prolia. After two shots my BMX improved quite a bit and am now osteopenic. All seems well, but my last shot was delayed due to the coronavirus, which was very upsetting. Also, I've been reading about the risk of rebound fractures after stopping this drug and don't like the idea of having to take it long term. I realize the delay was highly unusual and not likely to happen again, but still...what if there's a shortage of the drug? Stranger things have happened. My other concern is that I had terrible joint pain after my last shot. I've scheduled a phone consult with my endocrinologist to ask if I can switch to something else. He mentioned that zometa would not be good because I've already taken it. So....back to Fosamax? It will be interesting to see what he says!
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Marcia - I don't know anything about Evista, but if it helps suppress estrogen, that's always a good thing! I plan to ask my doc about it. I'd like to know what all my options are at this point.
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Hello dear bc 101;
Evista is an older drug related to tamoxifen- it’s twin sister . It does lower estrogen - estradiol to be exact while ups other types of estrogen that build bone . The risk is blood clots . I felt it might be safer for me than Prolia since that can cause your immune system to go on overdrive . ( ie; autominnume disease )
My drs recommendations have been prolia but one shot might set me into a whole body break out of psoriasis. I do see a gp and a rhumetologist and will follow up with a dexa next year . Do any of you do yoga ? Love it and it seems to help bone Strength. I take calcium magnesium, vitamin D 5,000 and collagen . I’m hopeful that my exercise though moderate is enough . I can’t lift weights because the brain tumor took out my hand use that was a bc met . Only one and 9 years ago . I’m so thankful to be still here ! I have a strong will to live pardon my typos I use just one hand !
Wishing all of the best
Marcia
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Marcia - you are amazing!!
Yes, I try to do some kind of yoga every day, especially since being home now all the time. I have osteoarthritis so I need to keep moving. It's amazing how fast you can go downhill if you don't move! I do yoga that is oriented towards older folks - can't seem to do as much bending as I used to! I've been researching what poses are safe for those with osteoporosis to avoid fractures. There are so many free channels on YouTube that address bone health and exercise, so lots out there to explore. I also walk every day when it's nice out. I live in the midwest so it's winter most of the year!
I take a multivitamin and 2,000 IU Vitamin D3. I drink a lot of milk and try to get most of my calcium with food. Since I'm on Prolia I know I need to keep my calcium levels up. I occasionally take Calm Magnesium and am thinking about starting collagen for joint pain.
Take care!
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BC101- I used to have a lot of joint stiffness on the AIs. I talked to someone at a health food store early on as I was trying to cope with the SEs, and they recommended hyaluronic acids suppliments. Puts some of the moiture back into things that dry out with estrogen depletion. It really helped. I made sure it was okayed by my MO though, as I know some of the suppliments can have things in them that act like estrogen which we have to be careful about if you had ER positive bc.
He approved this kind I brought in for him and maybe you can talk to your provider to about this to see if it's safe to take?
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Hi Jazzygirl
Great that you also do yoga and walking . To me I need to be outdoors at least once a day even if it’s slightly rainy . Now that we’re in spring it’s so much easier to get the exercise we need to build bone .
I’m Enjoying these forums more since were in quarantine. Wishing you the best in everything!
Marcia0 -
Jazzy,
This is perfect timing. I’m going to run this by my doc when I see him this month. My joint pain in fingers and restless legs are worse, so I hope these will help. Do you buy these supplements on line?
BTW, I’m finally seeing some improvement in my numbers after three years of Prolia
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Butterfly - Jazzy is on a "social media break" right now. She'll be back next month and can answer your question.
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