Veruska
@veriska
@veriska
Posts: 6
Joined: Jul 07, 2016
Prolia treatment for osteoporosis
I received the results from my bone test and they have recommended I start Prolia. I have read the side effects and I am concerned. Has anyone use this drug and if so what side effects have you experienced. Thank you
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JK, Volunteer Mentor
@contentandwell
@contentandwell
Posts: 4912
Joined: Feb 18, 2017
I had 7 shots, one every 6months for 3 1/2 years. I had a severe jawbone infection due to these shots. I have had to wait it out 6 months to get it out of my system and now recover from the infection. I am taking strong antibiotics for this and praying it will get better soon. It has been horrible pain!
@kay71 that pretty much aligns with what my dental hygienist told me last week. I had an appointment and asked her about how these drugs affect your jaw and mouth. She told me that you have to wait as long as the drug is effective so it gets out of your system. If you have the medication every six months you have to wait until the six months have elapsed before having dental surgery. ReClast would be 12 months since your last injection. The ones you take daily don’t have a long wait period.
I cannot say if that information is accurate but that is what I was told. I have no idea if they have other negatives that affect your mouth and jaw, or if it’s just if you need surgery.
Anyone considering these drugs should speak to their dentist and find out what their dentist says about them. If I do end up taking one of them myself I will ask the prescribing doctor AND the dentist herself.
JK
@kay71 that pretty much aligns with what my dental hygienist told me last week. I had an appointment and asked her about how these drugs affect your jaw and mouth. She told me that you have to wait as long as the drug is effective so it gets out of your system. If you have the medication every six months you have to wait until the six months have elapsed before having dental surgery. ReClast would be 12 months since your last injection. The ones you take daily don’t have a long wait period.
I cannot say if that information is accurate but that is what I was told. I have no idea if they have other negatives that affect your mouth and jaw, or if it’s just if you need surgery.
Anyone considering these drugs should speak to their dentist and find out what their dentist says about them. If I do end up taking one of them myself I will ask the prescribing doctor AND the dentist herself.
JK
I asked before too and was told the same thing. I was also told it is very rare for this to happen and would be ok. I have found out it happens more than anyone knows. Lots of unreported cases. I had a root canal and gum surgery before they decided it was Prolia. The pain from the infection was horrible for 3 months. Won’t be taking this drug ever again!
REPLY
I appreciate your response and that of others in the group about the efficacy of Forteo and Prolia, but I am disappointed that no one mention how much improvement (% according to a dexa-scan) they have made. I have 3 friends who had the 2-year treatment with Forteo. Results were 0%, 2% and 5% improvement. I don't happen to think that small amount of improvement is worth the risks involved with Forteo and the user reviews I've read are not at all reassuring as some reported horrendous pain and disability after starting the treatment. About Prolia, same thing – small improvement (2 %) that hardly compensates for the risks involved. A doctor in Canada even told a traveling companion of mine - "Don't you DARE go on Prolia – it's very hard on the system."
I have heard the same from a Rheumatologist from Canada,” don’t go on Prolia” ….but what’s a person to do with severe osteoporosis,???? Can a PC ever prescribe Forteo or does it have to be prescribed from a rheumatologist? I can’t get in to see one until May of next year! I have had multiple compression fractures T6,7and 8 and also a fractured rib ,wore a back brace/vest for awhile ,saw a PA who said she has seen better results with Prolia vs Forteo! This all happened in early April of this year,still having pain all over after being put back on Prolia,I had been on Prolia for 2 years and still had the compression fractures,I I never fell at all! I did have a full body scan on July 1st, that is what showed my severe osteoporosis. I am 69 yrs. old and used to be very active ,now emptying my dishwasher is Painful!
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I have heard the same from a Rheumatologist from Canada,” don’t go on Prolia” ….but what’s a person to do with severe osteoporosis,???? Can a PC ever prescribe Forteo or does it have to be prescribed from a rheumatologist? I can’t get in to see one until May of next year! I have had multiple compression fractures T6,7and 8 and also a fractured rib ,wore a back brace/vest for awhile ,saw a PA who said she has seen better results with Prolia vs Forteo! This all happened in early April of this year,still having pain all over after being put back on Prolia,I had been on Prolia for 2 years and still had the compression fractures,I I never fell at all! I did have a full body scan on July 1st, that is what showed my severe osteoporosis. I am 69 yrs. old and used to be very active ,now emptying my dishwasher is Painful!
PS. Also had to have a tooth pulled that had cracked…was given antibiotic deep clean cleansing! Lots of bone Loss!!!!😞
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sue225
@sue225
@sue225
Posts: 258
Joined: Mar 02, 2019
I have heard the same from a Rheumatologist from Canada,” don’t go on Prolia” ….but what’s a person to do with severe osteoporosis,???? Can a PC ever prescribe Forteo or does it have to be prescribed from a rheumatologist? I can’t get in to see one until May of next year! I have had multiple compression fractures T6,7and 8 and also a fractured rib ,wore a back brace/vest for awhile ,saw a PA who said she has seen better results with Prolia vs Forteo! This all happened in early April of this year,still having pain all over after being put back on Prolia,I had been on Prolia for 2 years and still had the compression fractures,I I never fell at all! I did have a full body scan on July 1st, that is what showed my severe osteoporosis. I am 69 yrs. old and used to be very active ,now emptying my dishwasher is Painful!
I live in Canada also. My endocrinologist heads up the osteoporosis programme at a major hospital. She is involved in lots of research studies. I am on Prolia. I would hazard a guess that there are more specialists in the field of osteoporosis who based on the evidence support the use of Prolia. Private message me if you want the name of the specialist (you may live nearby).
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sue225
@sue225
@sue225
Posts: 258
Joined: Mar 02, 2019
I have heard the same from a Rheumatologist from Canada,” don’t go on Prolia” ….but what’s a person to do with severe osteoporosis,???? Can a PC ever prescribe Forteo or does it have to be prescribed from a rheumatologist? I can’t get in to see one until May of next year! I have had multiple compression fractures T6,7and 8 and also a fractured rib ,wore a back brace/vest for awhile ,saw a PA who said she has seen better results with Prolia vs Forteo! This all happened in early April of this year,still having pain all over after being put back on Prolia,I had been on Prolia for 2 years and still had the compression fractures,I I never fell at all! I did have a full body scan on July 1st, that is what showed my severe osteoporosis. I am 69 yrs. old and used to be very active ,now emptying my dishwasher is Painful!
@nancyrod69 Maybe another specialist can review your case and decide what should happen next.
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sue225
@sue225
@sue225
Posts: 258
Joined: Mar 02, 2019
PS. Also had to have a tooth pulled that had cracked…was given antibiotic deep clean cleansing! Lots of bone Loss!!!!😞
@nancyrod69 I have had loads of dental problems over the years(prior to prolia). Decaying teeth cause bone loss.
JK, Volunteer Mentor
@contentandwell
@contentandwell
Posts: 4912
Joined: Feb 18, 2017
@nancyrod69 I have had loads of dental problems over the years(prior to prolia). Decaying teeth cause bone loss.
@sue225 do decaying teeth cause bone loss, or does bone loss cause decaying teeth? I have read that bone loss leads to losing teeth due to periodontal problems.
https://www.bones.nih.gov/health-info/bone/bone-health/oral-health/oral-health-and-bone-disease
JK
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sue225
@sue225
@sue225
Posts: 258
Joined: Mar 02, 2019
@sue225 do decaying teeth cause bone loss, or does bone loss cause decaying teeth? I have read that bone loss leads to losing teeth due to periodontal problems.
https://www.bones.nih.gov/health-info/bone/bone-health/oral-health/oral-health-and-bone-disease
JK
In my case, I lost bone from cracked roots (old root canals)in molars for example. Infection develops over time. The infection eats away at the bone. Sometimes this infection does not show up on an xray. So, by the time the tooth is extracted there is significant bone loss. If you then choose to go the implant route a bone graft is required (artificial bone used). All of my many unfortunate dental troubles were long before Prolia.
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Chris Trout, Volunteer Mentor
@artscaping
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Posts: 761
Joined: Jul 11, 2017
I was on Bonviva for 2 years and it didn’t work. I started Prolia in January. So far the only side effects I notice are the same I had with Bonviva… stiffness in my hips and knees when I sit for a long time or first thing in the morning. I am 53 and have just started testing to see if they can discover a cause for my Osteoporosis.
@crenhov, just want to add to the options. After a rough time with Boniva….I chose Tymlos for 18 mos. Just started month 5. No side effects. Easy to manage. Will wait patiently for next scan. NOT! Waiting is difficult, especially when you are 77. How long before testing? Be content and at ease today. Thanks for being a great Connect resource. Chris
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JK, Volunteer Mentor
@contentandwell
@contentandwell
Posts: 4912
Joined: Feb 18, 2017
In my case, I lost bone from cracked roots (old root canals)in molars for example. Infection develops over time. The infection eats away at the bone. Sometimes this infection does not show up on an xray. So, by the time the tooth is extracted there is significant bone loss. If you then choose to go the implant route a bone graft is required (artificial bone used). All of my many unfortunate dental troubles were long before Prolia.
@sue225 so the decaying teeth just caused bone loss in your mouth, now I understand. Were you able to get implants?
JK
sue225
@sue225
@sue225
Posts: 258
Joined: Mar 02, 2019
@sue225 so the decaying teeth just caused bone loss in your mouth, now I understand. Were you able to get implants?
JK
Yes, I have six implants! Pre-prolia.
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I am tentative about this drug also. I have hashimoto's disease, gastroparesis, kidney disease that is not active, and osteoporosis. My last DEXA scan was -4.5 at the hip and -2.5 at the spine. After a year and a half of resistance training twice a week for an hour each with a Wellness Coach and by a physical therapist, my spine is now not losing any bone but my hip has lost 5% in 2 years. I have been taking 2000 Vit D3, adequate calcium since I have calcification in my arteries (I am 68 years old), along with Vit K2, and magnesium and a multiple vitamin. My hesitation is that 3 totally different drugs have sent me to cardiac care for 5 days or more with blood pressure over 200. Acthar, Livalo (a cholesterol med) and Tacrolimus. At all times I had just visited my nephrologist & my kidneys were fine in that I was not dumping protein. I have always had excellent creatinine clearance… just protein loss. I am not able to take any of the Fosamax or pills such as that. They make me dump more protein. Unless someone can steer me to someone that can do some genetic counseling to see why my body is not metabolizing drugs like everyone else's, I am not inclined to take Prolia. I don't know where to turn for more help. My endocrinologist just keeps pushing Prolia. But at least I have built muscle to support these old bones until they just break. Any advice would be helpful.
I won't take Prolia due to it stating that stopping the injections can cause spinal fractures. My pharmacist confirmed this with the manufacturer, although the endocrinologist believes otherwise. . The other problem is that having low bone density doesn't correlate to bone strength. I have osteoporosis, but have never broken a bone, even when falling. My friend doesn't have osteoporosis, but has broken bones when falling. Unfortunately, there is not enough known about this disease and we are all guinea pigs. The medical profession is constantly changing their minds about treatments that were once mainstream. That is not necessarily a bad thing; it just means one should do some research and not blindly trust their doctor.
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cherriann
@cherriann
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I won't take Prolia due to it stating that stopping the injections can cause spinal fractures. My pharmacist confirmed this with the manufacturer, although the endocrinologist believes otherwise. . The other problem is that having low bone density doesn't correlate to bone strength. I have osteoporosis, but have never broken a bone, even when falling. My friend doesn't have osteoporosis, but has broken bones when falling. Unfortunately, there is not enough known about this disease and we are all guinea pigs. The medical profession is constantly changing their minds about treatments that were once mainstream. That is not necessarily a bad thing; it just means one should do some research and not blindly trust their doctor.
I agree that it is very important to do your own research. My experience has been that most of the doctors I've seen for the many years I've had osteoporosis strongly push osteoporosis drugs. With all the new information coming out about side-effects they cause, don't depend on your physician to alert you to them. Also, I suggest to read reviews from those that take the drugs you are considering to find out first-hand what others are experiencing positive or bad.
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@kay71
I had 7 shots, one every 6months for 3 1/2 years. I had a severe jawbone infection due to these shots. I have had to wait it out 6 months to get it out of my system and now recover from the infection. I am taking strong antibiotics for this and praying it will get better soon. It has been horrible pain!
Liked by JK, Volunteer Mentor