topic Re: Has anyone been on Prolia? in Wellness

Has anyone been on Prolia?

BirkiLady — Thu, 31 Jan 2019 02:34:05 GMT

My Rheumatologist called today. He wants me to begin Prolia injections in late March due to my fractures in my back. He is trying to prevent further problems. I was on Bonevia for about 7-8 years, which helped strengthen my bones after a couple of fractures to my wrist from falling. After regular DEXA's we decided (together) to discontinue the Bonevia. (My swimming, walking and gardening had really helping more than the meds IMO.)

After reading about the Prolia, I'm concerned about the length of time a patient must be on injections and, most importantly, what happens when stopped. He said one injection every six months. I'm fine with that.

Would appreciate any comments, side-effects, how long you took the injections and if they helped your bones. Thanks so much!

Re: Has anyone been on Prolia?

on the bay — Thu, 31 Jan 2019 03:04:48 GMT

@BirkiLady-

I always like to read askapatient.com before taking any drug. My mother takes it and has had no side effects but there are many awful reviews of it that their doctors have denied are side effects from prolia.

Re: Has anyone been on Prolia?

BirkiLady — Thu, 31 Jan 2019 04:47:09 GMT

@on the bay My appointment is March 29th. He knows I always research new meds. He wasn't sure if I was able to sit up long enough to google Prolia. I assured him, "Yes. No problem." We'll discuss first. I'll also have more lab work (as usual), another DEXA (if the Ortho. Surgeon doesn't schedule one in the meantime) and then I'll make the final decision.

And I have read all about it today. Seems to be the next step in meds (following four such as Boniva, which I've already been on for 7-8 years with no problems). Which is why I have questions about stopping the injections. I have no intentions of long-term use! Thanks for your response.

Re: Has anyone been on Prolia?

NYC Susan — Thu, 31 Jan 2019 06:44:51 GMT

I have no personal experience with Prolia, but a very close friend of mine has been receiving the injections for a few years. She was very apprehensive when it was recommended by her doctor, but she has had no issues. No side effects whatsoever, and it's working well for her.

Re: Has anyone been on Prolia?

Mermaid22 — Thu, 31 Jan 2019 14:07:56 GMT

I just had my second injection last Wednesday. No side effects. It is very important to get pre injection blood work to check your Vitamin D levels. My doctor says that level must be in the optimum range in order to receive the medication. Good Luck with your decision!

Re: Has anyone been on Prolia?

Still Raining — Thu, 31 Jan 2019 14:48:41 GMT

If you have history of low calcium from other medical problems, this is not the drug of choice. Should check that too.

Re: Has anyone been on Prolia?

BirkiLady — Thu, 31 Jan 2019 18:14:48 GMT

@Mermaid22 @Still Raining I have lab work done monthly for Lupus and RA. My Rheumatologist would not have suggested Prolia if there was a problem with anything in my recent labs. I've been diligent with my diet, meds and exercise (even with this broken back) and feel he's probably trying to keep my bones healthy following my recovery. I trust his knowledge and expertise completely. (Didn't trust the first Rheumatologist many years ago! She was awful and interested in the labels of my clothes! I walked out.)

I still don't plan to be on Prolia for long-term use. Confident I'm able to keep my bones strengthened through walking, swimming, golfing, gardening, etc.

I'm worried ballet may be a thing of the past, which saddens me. I've enjoyed it for the past year!

Thanks for your comments.

Re: Has anyone been on Prolia?

Mermaid22 — Thu, 31 Jan 2019 22:30:56 GMT

@BirkiLady wrote:
@Mermaid22 @Still Raining I have lab work done monthly for Lupus and RA. My Rheumatologist would not have suggested Prolia if there was a problem with anything in my recent labs. I've been diligent with my diet, meds and exercise (even with this broken back) and feel he's probably trying to keep my bones healthy following my recovery. I trust his knowledge and expertise completely. (Didn't trust the first Rheumatologist many years ago! She was awful and interested in the labels of my clothes! I walked out.)

I still don't plan to be on Prolia for long-term use. Confident I'm able to keep my bones strengthened through walking, swimming, golfing, gardening, etc.

I'm worried ballet may be a thing of the past, which saddens me. I've enjoyed it for the past year!

Thanks for your comments.

They will test your Vitamin D level prior to each injection- must be over 30. Also, please be aware if you go off Prolia you MUST continue with another medication such as Fosomax. My doctor told me that your bones will become even WEAKER if you stop the Prolia without taking another medication. Also, it must be given within a 5 day period every 6 months.

Re: Has anyone been on Prolia?

Hearts4Me — Fri, 01 Feb 2019 00:07:20 GMT

I'm following this with much interest as I go tomorrow a.m. for my first visit with the rheumatologist. Sadly I fractured both of my hips in 2016. Just had a DexaScan last week, and I obviously have severe osteoporosis to say the least. Long background story.

Anyway, I am scared beyond belief of these osteo meds after everything I have researched this week.

This is really terrifying for all no matter which decision we make it seems.

Re: Has anyone been on Prolia?

qvcaddition — Sat, 02 Feb 2019 23:43:28 GMT

@BirkiLady

@BirkiLady wrote:
My Rheumatologist called today. He wants me to begin Prolia injections in late March due to my fractures in my back. He is trying to prevent further problems. I was on Bonevia for about 7-8 years, which helped strengthen my bones after a couple of fractures to my wrist from falling. After regular DEXA's we decided (together) to discontinue the Bonevia. (My swimming, walking and gardening had really helping more than the meds IMO.)

After reading about the Prolia, I'm concerned about the length of time a patient must be on injections and, most importantly, what happens when stopped. He said one injection every six months. I'm fine with that.

Would appreciate any comments, side-effects, how long you took the injections and if they helped your bones. Thanks so much!

My friend has been on it for a year and her knees hurt, fingers and other parts of her body. She now can,t close her left hand. She wants to get off it. ,

Re: Has anyone been on Prolia?

BirkiLady — Sun, 03 Feb 2019 01:09:01 GMT

@qvcaddition Why hasn't her Rheumatologist taken her off Prolia immediately? All the information I've read says if side effects occur, to talk with your physician and go off it. Those are some of the side effects I've read about in my research.

I trust my Rheumatologist and all my physicans/specialists completely to cease any medication which was causing problems. None of them want to see me (or any of their patients) in trouble. She needs to contact her physician ASAP to be weaned off the med properly. Most meds cannot be stopped cold-turkey. Also, Prolia remains in the body for 3-6 months if I remember correctly . . . so she won't see immediate relief. She needs to ask questions!!

Re: Has anyone been on Prolia?

qvcaddition — Sun, 03 Feb 2019 21:41:00 GMT

@BirkiLady

@BirkiLady wrote:
@qvcaddition Why hasn't her Rheumatologist taken her off Prolia immediately? All the information I've read says if side effects occur, to talk with your physician and go off it. Those are some of the side effects I've read about in my research.

I trust my Rheumatologist and all my physicans/specialists completely to cease any medication which was causing problems. None of them want to see me (or any of their patients) in trouble. She needs to contact her physician ASAP to be weaned off the med properly. Most meds cannot be stopped cold-turkey. Also, Prolia remains in the body for 3-6 months if I remember correctly . . . so she won't see immediate relief. She needs to ask questions!!

ITA. have talked to this lady on many things she should be doing. She is 90 and very headstrong. She will not get a caregiver, and she has enough money.

She had walking pneumonia for a year before going to the Dr. I called her only child, a daughter in another state, but she was not concerned.

I got her to the Dr who prescribed an antibotic. That was over a year ago. She never with back for a recheck. At the present, she has trouble breathing and coughs up phlegm, but refuses to see a Dr. Then she tells me, the Dr. Says she needs to go live with be daughter, nothing more he can do for her.

She fell and was on he floor all night until I called the police in her town to check on her. Again, called her daughfer. This lady spent one week in hospital and one month in rehab, And her daughter never came to see her. I am her only contact, but it is too much for me to keep advising her what to do and her ignori:g any suggestions or advice.

I am 83 and live alone, but take good care of myself. This lady needs a caregiver, but too cheap to hire one or move close to a daughter that doesn,t seem to care. She does not have dementia, just proud and headstrong. I really can,t do anything anymore, but listen to her complaints which get tiresome and xepressing..

I was just answering to tell you sympton s about the medication you were asking .

Re: Has anyone been on Prolia?

BirkiLady — Sun, 03 Feb 2019 22:49:20 GMT

@qvcaddition Interesting (and very sad) situation. However, as far as the Prolia goes: As long as she continues to show up for her Prolia injections every six months, she has nothing to complain about! She's the one having them administered. Listen to her complaints, but it sounds like she simply enjoys your company and has nothing else to talk about.

Very kind of you to care about her and check on her.

Sadly, I also saw too many families ignore their parent when my mom was in Assisted Living, Independent Living and Skilled Care for 14 years as a dementia patient. It is beyond my comprehension who famiies are able to ignore their relatives. Over those years, our small family "adopted" many elderly residents who didn't have anyone visit or check on them. We made sure they were receiving the best medical advise possible.

The rewards were fabulous smiles, laughter, a gentle hug and stories of their lives! It takes to little to make someone else happy.

Re: Has anyone been on Prolia?

Financialgrl — Wed, 13 Feb 2019 00:21:09 GMT

@qvcaddition wrote:
@BirkiLady
@BirkiLady wrote:
My Rheumatologist called today. He wants me to begin Prolia injections in late March due to my fractures in my back. He is trying to prevent further problems. I was on Bonevia for about 7-8 years, which helped strengthen my bones after a couple of fractures to my wrist from falling. After regular DEXA's we decided (together) to discontinue the Bonevia. (My swimming, walking and gardening had really helping more than the meds IMO.)

After reading about the Prolia, I'm concerned about the length of time a patient must be on injections and, most importantly, what happens when stopped. He said one injection every six months. I'm fine with that.

Would appreciate any comments, side-effects, how long you took the injections and if they helped your bones. Thanks so much!
My friend has been on it for a year and her knees hurt, fingers and other parts of her body. She now can,t close her left hand. She wants to get off it. ,

@BirkiLady- I've been on it for 6 years. I battled an extremely aggressive cancer and I take Arimidex to prevent a recurrence. Arimidex causes bone loss needing the Prolia.

My experience - it causes lower back pain and joint pain until it moves through my body and if I do not take an acid reflux reducer I can't keep food down for about 5 days. When I spoke to the infusion nurses, they said that many women say they have side effects that feel like when the flu is first hitting your body (like qvcaddition comment below).

It has helped my osteoporosis and I almost have to stay on it in order to continue Arimidex - in my case the thought of a cancer recurrence is scary - but for those that haven't read the side effects - you should all talk to your dentist before taking bc the drug can cause necrosis of the jaw - causing loose teeth, or major dental issues, etc. I've just noticed that I'm having an issue on my right side of my jaw in the back. I'm not sure if its due to the Prolia or not but if that is the issue, I'll switch back to what I took before Prolia was the new "in" drug.

Re: Has anyone been on Prolia?

BirkiLady — Wed, 13 Feb 2019 04:27:07 GMT

@Financialgrl Thanks for the information. The warning about dental issues wasn't in the information I had researched.

ETA: Fortunately (or unfortunately) one of the fractures is not healing at all (it remains smashed). The other two are healing slowly. I have time to talk with my Dentist (tomorrow's "to do list") and also do more research. Knew it was scary stuff, which is why I asked.

Best wishes on your health care. Seems like we're caught between a rock and a hard place, doesn't it?

Re: Has anyone been on Prolia?

Financialgrl — Wed, 13 Feb 2019 12:50:58 GMT

@BirkiLady wrote:
@Financialgrl Thanks for the information. The warning about dental issues wasn't in the information I had researched.

ETA: Fortunately (or unfortunately) one of the fractures is not healing at all (it remains smashed). The other two are healing slowly. I have time to talk with my Dentist (tomorrow's "to do list") and also do more research. Knew it was scary stuff, which is why I asked.

Best wishes on your health care. Seems like we're caught between a rock and a hard place, doesn't it?

@BirkiLady The latest side effects seem to be downplaying the dental issues; however, when I was first put on the drug my oncologist made sure I was aware of the issue and told me that although I need the shot, he wanted me to talk to my dentist. I will say, at the time my dentist told me she had heard about that and would research it. She came back and said if I need to go on Prolia, the consensus of dentists and the ADA at that time was that one should get the injections twice a year vs the once a year IV infusion.

Re: Has anyone been on Prolia?

NickNack — Wed, 13 Feb 2019 13:01:23 GMT

@BirkiLady I've been on it for a couple of years for osteoporosis. It has helped according to my last Dexa scan. I took Fosamax first and had terrible side effects of pain. I quit taking it after a week or two. I've had no side effects at all from the Prolia.

Re: Has anyone been on Prolia?

BirkiLady — Wed, 13 Feb 2019 22:47:53 GMT

@NickNack Thanks for your response. I was on Bonevia for 7-8 years. Had a good DEXA two years ago. My Rheumatologist and I decided (together) that I could go off the Bonevia for two years until my next DEXA (which will be in March). Didn't anticipate the woman running a stop sign!

I'm confident my DEXA in March will be similar to the one in 2017. My bones no longer feel fragile (they did before Bonevia and fractures of my ankles, wrists and arms were common at that time). I've been swimming several times a week, walking daily, golfing, gardening, and began ballet in 2018. All those have built up bone mass and made me much stronger. Best of all . . . no fractures in over 10 years! (Except for my back, which was caused by an accident.)

Two of the three fractures are healing; slowly, but naturally. The third fracture remains smashed and still somewhat painful. (But not nearly a 9 any longer! More like a 3 on the pain scale. I've stopped taking Aleve completely.) I'm still in the back brace 24/7.

Like you, I'm scheduled for two Prolia injections per year. Have a call into my DDS today. Hope to hear from him either after he is finished with patients or early tomorrow. Both my Ortho. Surgeon and Rheumatologist recommend Prolia so I'm confident it is a "wonder" treatment for Osteoporosis. I trust both of their expertise 100%. They are the best in their fields; no qualms about them.

We'll need to continue to compare how we react of Prolia. Delighted you are doing so well. Everything my Ortho. Surgeon has said indicates it's a "miracle treatment" and the newest option available. He was delighted my Rheumatologist is on Board with it.

Re: Has anyone been on Prolia?

NickNack — Wed, 13 Feb 2019 22:35:05 GMT

@BirkiLady I hope the Prolia will help you. I'm so sorry for all you've been through with your accident and pain. I'm glad the pain has lessened.

Re: Has anyone been on Prolia?

BirkiLady — Wed, 13 Feb 2019 23:01:14 GMT

@Financialgrl My DDS just returned my phone call. He also strongly recommends Prolia in my case (back injury) or Osteoporosis.

He did explain why Dentists are often involved in the treatment of Prolia. If a patient has a tooth that may need removing, Prolia may cause weakening of the bone. In such a case, he prefers to remove the problem tooth prior to the patient beginning Prolia injections.

In my case, I don't have any dental problems. He's fine with me going on Prolia in March and does not anticipate any problems associated with Prolia as far as my dental health.

Sounds like you need to ask your Dentist about the problems you are having ASAP. Hope you see him/her every six months! Quality dental health is imperative to overall health. Best wishes.