Mayo Clinic Connect
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
Liked by Dee, Chris Trout, Volunteer Mentor, TERESA LOGAN, tikigod18 ... see all
@sue225 my PCP may be looking out for me now but that’s probably because he dropped the ball on my osteopenia/osteoporosis. I was diagnosed with osteopenia in January 2014, have been on prednisone since September 2016, and he never sent me for a DEXA until I asked about it after my fracture.
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@contentandwell oh, I see. the prednisone not so great for the bones…
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After stopping Prolia, what are you doing now for your bone density & is it helping stabilize your T-score ?
I was taking Tymlos, but have stopped temporarily while my endocrinologist waits to see if my joint/muscle pain was related to the medication or arthritis. I am processing that with a rheumatologist. I also have fibromyalgia which makes it challenging to discern but I had been taking it for five months before I had any unusual pain.
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I am a 63 yo male with a T-Score of -4.4. Any males out there? I have had 17 spinal fusions due to osteoporosis. I am fused from C4-C7 & T12-S3 all since 2008 & have been on every treatment there is. Most recent was Prolia in 2017 but had to stop because of multiple surgeries. I had no side effects other then there can be very minimal dental work. Just start Prolia a week ago. I am not overly hopeful about the results but will know in another week after blood work. Keep smiling 🙂
@jmweissler Sounds like you have been battling osteoporosis for quite a while now. What treatments have you been on prior to Prolia, and did you have any disagreeable side-effects? There are many here, myself included, who are struggling with the question of what to do. I am 95% certain that I will go one of these drugs but I need to do more research to decide which. My endo suggested Reclast. I won't do anything until after April because I have a couple of other things I want out of the way first.
I, and I am sure many others, would really love to hear side-effects and also what if any positive effects you got from the various treatments. Osteoporosis is so much more threatening than I ever realized before. ☹️
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@jmweissler eventhough I am seriously considering not having anymore Prolia injections due to side effects, I do not regret giving it a go. My fear of fractures is still stronger than my fear of the drugs. I have a feeling Forteo will be the next one for me. I like the fact that its daily so if the side effects are intolerable you can just stop.
@contentandwell I meant to reply to you!
My understanding is that Prolia is the “latest & greatest”. I have been on Forteo (daily injections into abdomen), Reclast (~1hr infusion once a year) & now Prolia (injection into abdomen 2x a year). It’s impossible for me to tell if I have pain side effects due to all my “normal” pain. I have NOT had any bone cancer related issues. BTW – since osteoporosis was discovered in 2008, my score has gone from -3.1 to -4.4. None of these treatments are a miracle drug but I will continue to try every Medically approved treatment available.
If anyone believes it is better to have a fracture then to take a medication that will hopefully keep you from fracturing a bone bc of a minimal risk of side effects, my opinion is that U really need to sit down and think about it. Fractures can lead to surgery, which may lead to infection & pain. That’s a certainty. Hope this helps in any way & that I did not offend anyone. 🙂
Liked by JK, alumni mentor, sue225, Barb M
Hi JK. Please see my reply to @sue225 below. 🙂
We’re the Forteo injections hard to give yourself? Just not sure I could do it every day. Painful?
@sue225. Hip fractures can also lead to a loss of mobility which can start a downward spiral. That to me is very frightening.
So you had no problems with Reclast? I know we are all different but it is reassuring to know people who have not had problems. Why did you stop Reclast and Prolia if you don’t mind sharing.
@jmweissler You most definitely did not offend. Your comment about fractures needs to be out there. It is my biggest fear to fracture a hip and lose my independence. Prolia has been around since 2010 and Forteo since 2009.
Since being on Prolia, my bone density has improved significantly in a short period of time. What I find weird about this drug is the fact that should you stop using it , you lose everything you gain quickly and unless you replace with another med you risk having those rebound fractures.
If I didn't have the side effects I'd still stay on it. Forteo has that 18month limit, but who knows maybe there will be something else in the pipeline soon.
The first few r a bit frightening but there is really no pain. U get used to it. It’s well worth it. The pens need to b refrigerated so if U travel it’s a pain. U get a travel case w ice to keep it cool.
As long as U r doing something:)
Do NOT start this drug! Do lots of research before you start any of the osteoporosis drugs. In differing amounts, they all contain the same chemicals as used in chemotherapy. I have had severe pain in my leg bones, my finger joints have all swelled permanently and I have lost about 1/4 – 1/3 of my hair. I have had 2 shots and will never take another one. I will use calcium and ergocalciferol (Vitamin D). Be sure that you do the research – my doctor told me that there were no side effects and yet there are many in addition to what I have. K
I HAVE HAD THREESHOTS OF PROLIA SO FAR WITH NOTHING BUT GREAT EFFECTS. I NO LONGER SUFFER FROM FREQUENT FRACTURES WHICH I DID BEFORE AND THE CONVENIENCE OF ONLY NEEDED TWO SHOTS A YEAR IS A BONUS FOR ME. BUT I'M SURE IT WORKS DIFFERENTLY FOR MANY OTHERS. MY PROBLEMS STARTED TEN YRS AGO WHEN I WAS GIVEN TWO DOSES OF LEVAQUIN, THE KILLER DRUG……
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