I had my first Prolia injection on 21 October. It made my osteoarthritis hugely worse - especially the OA pain that was so bad that I reached for co-dydramol.. that constipated me, which in turn led to a probable partial bowel obstruction. I also developed an UTI.
I feel stuck between a rock and a hard place: damned if I take the Prolia, and damned if I don’t. -3.6 spine z score, and have reacted badly to all the oral medications, and to teraparitide. I only have one option left.: zoledronic acid. But given my track record, and my extreme sensitivity, I’m pretty sure I would react badly to that too.
So I am currently thinking that I will just take the risk of not having any medication. Is there anyone who is in my position? And chosen not to take medication.?
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Hi, if you read my reply to twentiesgirl post it may put a different perspective on things for you.
There are many other ways to help with the constipation, upping the fluids it so important, lemon and green tea helps, as does extra vegetables.
Have you ever been given Movicol to try??
These do work extremely well but when taking high dose of co dydromol and similar pain relief you can increase them.
You as I do appear to be drug sensitive, my advice would be to keep trying the different treatments and if you find one that gives you mild side effects try to stick with it in hope that as your body adjusts the side effects will diminish.
Zoledronic infusion may be the one that will prevent you having fractures? I certainly hope so x
hi sunseaandsand. I think what tipped the balance was when I got a UTI. So 14 years ago, my urologist said be careful and don’t get UTIs (because of the operation he did on my). Around that time, my G.I. consultant said avoid opioids (I hadn’t pulled out that letter till recently - too late). He did mention using one Movicol a day to help keep everything soft. He thought I had intermittent partial bowel obstruction….. Do you honestly think it’s worth persevering with yet another one of these medications?
Hi, I have 2 Movicol Daily which for me works best 1 after breakfast and the other between lunch and dinner. The hospital prescribed mine so many years ago. They can also be increased if there are signs of an obstruction. Extra fluids are important.
In all honesty I ABSOLUTELY think it is worth persevering and trying other treatments.
My own disabilities from the fractures are too many to list.
I think many people would be surprised to know that when the fractures come I am unable to even cry or speak or sniff the slightest movement triggers spasms that feel like my back is being torn open and my body bucks involuntarily, with my last 3 fractures this continued for 4 whole months.
I myself could never have imagined myself as I am today as a result of Osteoporosis.
We are only given one body and I believe we should do all we can to take good care of it x
Four years ago my doctor said I needed to try some kind of med since I had osteoporosis in my hips and spine. I had taken oral zoledronic acid (Actonel) for a year 15years ago and it really affected my esophagus in a negative way. I stopped it and took nothing for about 11 years. Unfortunately, my numbers got much worse during that time. I reluctantly agreed with my doctor that I should do something so I spent about a year researching all the options and worrying about all the side effects these drugs can have. I checked out Prolia, Tymlos, Evenity, and one other and they all sounded horrible. Reclast (Zoledronic Acid infusion once a year for three years) seemed the least ominous, so that is what I chose. I just finished my three years, with really no problems at all. The only side effect I had was the second infusion which made me very tired and caused my wrists to ache where I have arthritis. Those issues lasted one day. After two infusions my hips went from osteoporosis to osteopenia and my spine has not worsened. So, this long response is to suggest trying Reclast. If you do, be sure to follow instructions like drinking water and taking Tylenol beforehand. I think that helped a lot.
thank you Karana81. Your story is encouraging for me. I have five more months to make my decision: have a second Prolia and put some support I place (help around the house. Dog walker….) and know that the very bad pain only lasts for a couple of days. OR, go for the zolendronic acid infusion (at least that is only once a year). XX
Please don't stop taking Prolia without first consulting your doctor. There can be a rebound effect which causes fractures. If you do stop, then you should take a bisphosonate (alendronic acid) to mitigate the rebound effect. I take magnesium citrate for constipation and it works like a dream.
I make your question, also my question, except that I'm taking Risedonate for 5 months with ANY side effects. But I'm considering take it for just a year and then stop.
I have your scores and do not take meds nor have I ever done so. I do my best to eat healthy, walk daily, do yoga and pilates, weight training, do posture and body mechanic exercises. My goal is to strengthen my muscles and core so that I do not fall or fracture. I am 70, have had osteoporosis for 12 years and have not fractured, even after two serious falls from hiking with my dogs. That said, I know your fears and anxiety about what to do and although it's nice to read all the comments on this network, whatever you decide, make it on what's best for you and your body. Everyone reacts and thinks differently on this forum, everyone has their own health issues that may impact the meds, etc. I am waiting for other safer alternatives for meds and new discoveries related to bone loss like stem cell research, etc. I am not opposed to taking drugs as a last resort. My mom did so in her early 70's and did the whole protocol many do here. She developed extreme Gerd and then went on to fracture almost yearly after turning 85. She's 92 now and does Reclast infusions, which have stabilized her scores but not stopped her fracturing. She also has a hump and developed issues from that as well. So I've seen both sides of this story and remain undecided about these meds because they have so many side effects that require additional meds. Good luck with your decision.
Thank you dcdream for your helpful reply. As things are at the moment, I think I will, like you, wait to see if any new treatment emerges. Stem cell seems the best.
I am currently 74 (75 in Feb). I’m slim and active. I walk my dog twice a day, albeit with Nordic poles because of severe osteoarthritis in the ankles. I’d rather have quality than quantity of life. I do realise that the quality could be seriously impacted by fractures, but I could also get ‘run over by a double decker bus’ tomorrow!
I just hope I can recover from the damage caused by taking the (necessary) Co-dydramol. I also have GERD, along with esophagus dismotility and Cricopharangeal spasm. That is still under control, but the small intestine problem is not. Basically, the whole of my digestive system is up the creek!
Did your mum have side-effects from the Thank you dcdream for your helpful reply. As things are at the moment, I think I will, like you, wait to see if any new treatment emerges. Stem cell seems the best.
I am currently 74 (75 in Feb). I’m slim and active. I walk my dog twice a day, albeit with Nordic poles because of severe osteoarthritis in the ankles. I’d rather have quality than quantity of life. I do realise that the quality could be seriously impacted by fractures, but I could also get ‘run over by a double decker bus’ tomorrow!
I just hope I can recover from the damage caused by taking the (necessary) Co-dydramol. I also have GERD, along with esophagus dismotility and Cricopharangeal spasm. That is still under control, but the small intestine problem is not. Basically, the whole of my digestive system is up the creek!
What side effects did your mum have from the Reclast infusion? And, can you elaborate what issues she developed from getting that hump?
She felt a flu like sickness for a few days after the infusion. However, within months starting complaining about her Gerd getting much worse. Eventually they had to put her on a stronger Gerd med and now she takes two different Gerd meds. She is getting her 2nd infusion this month. Her first infusion maintained her Dexi scores and did improve slightly. However, she has lost 5 inches, has a hump and continues to fracture even though she has done the med protocol over the last two decades. She is only about 130 pounds and is active for her age. My doctor is suggesting I start with an infusion treatment also to avoid getting Gerd. Like you, I'm still holding off on treatment.
I’m confused: your mum’s GERD got worse after the infusion,, but your doctor is suggesting you have the infusion so to avoid GERD??
and can you tell me, please, what problems your mum experienced as a result of the curved spine? Was it her organs that were crushed into a smaller place?
Mom was taking fosamax doing the 3 years off, 3 years on protocol. Did that for a decade or so. Then stopped and within 1 year of stopping fosamax, began to fracture bones (shoulder, thumbs, ankle). She also by that time was dealing with Gerd and was on a rather lighter Gerd meds (over the counter) for some years. Because her Gerd got worse, doctor wanted to bypass the stomach, etc. area and suggested the infusion, hoping that would stabilize the Gerd. Since she then lost 5 inches and a hump at 89, she has new difficulties that impact digestion due to the compression from the weight loss. This probably made her Gerd much worse. Everyone's experience is different, which is why every individual is unique and may or may not have side effects.
do you mean “she has new difficulties that impact digestion due to the compression from the weight loss.” That the curvature of the spine is crushing her digestive system?
I'm 75 years old and have severe osteoporosis as well as osteoarthritis. After my second spinal fracture a few years ago, mainly due to several falls after tripping on tree roots whilst out for my daily walk, I was ordered to start taking medication immediately by several medics. I refused, thus causing severe disapproval amongst the medical community. This did not change my mind. So now I take magnesium, vits D and K and calcium supplement occasionally when my calcium intake from my diet alone is insufficient. I also avoid lifting anything heavy, mostly. Although I still go for my daily walks I've learnt to be extra careful around tree roots as I really don't want any more falls. Although my two fractures(T8 and T9) have resulted in some pain and discomfort, after the initial intense pain immediately after fracture, and I'm in no doubt that some of this is due to osteoarthritis as well , I manage without taking any painkillers as, like you, the immediate result is severe constipation.
My reply to you is certainly not intended to influence you one way or another in your decision whether to try new medication or not. The choice is entirely up to the individual as I've been quick to point out to the disapproving doctors. However you asked this forum for people's experience in coping with osteoporosis so I felt obliged to share mine with you. I wish you all the very best whatever decision you choose to make.
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