Anyone tried Prolia (Denosumab)

[marigolds]

Has anyone got a success story with taking Prolia (Denosumab) I am to have a blood test re vit D and I find the side effects horrendous

[Fruitandnutcase]

Don’t know how many injections you have had already but if you are considering stopping Prolia because you feel so bad please read up about stopping it.

You need to start taking something else - such as alendronicacid or one of the bisphosphonates - as soon as you stop the Prolia.

[marigolds in reply to Fruitandnutcase]

Haven't had any yet! Thanks for the advice.

[Dmck009 in reply to marigolds]

Just had my first & only shot…terrible side effects & you can’t just stop it…I wish I did better homework & had someone to tell me not to take this

[Nannie-C]

Stopped after two due to awful side effects, had to go on relay drug to try and prevent rebound spinal fractures from stopping the Prolia. Was on actonel (risedronate) but sadly had to stop that after 18 weeks again due to side effects. Sadly just hoping and praying that will have been enough to prevent the fractures. No more osteoporosis drugs for me. So wish I’d heeded my instincts not to start it.

[marigolds in reply to Nannie-C]

I am worrying about having the injections as I am 86 and have just had my cataracts done with problems.

[marigolds in reply to Nannie-C]

I don't want to have the injection but my Rheumatologist keeps pushing me. Tried most of them including Risedronate. Do hope you do well. I am 86 have 3 vertebrae fractures but can still walk so good luck.

[Dmck009 in reply to Nannie-C]

How did you make out...any fractures?

[Nannie-C in reply to Dmck009]

No fractures thankfully but still in rebound period so the risk continues sadly, Amgen states this period can last for up to 43 months after having last Prolia dose. Being unable to get bone turnover markers done to assess bone remodelling has really added to my anxiety and stress over this.

[Dmck009 in reply to Nannie-C]

I have read that although the risk of fractures continue most fractures happen the first 10 months. Sounds like your on the road to safety. Thank you so much for answering me. Sometimes we learn from others experience. I too am suffering from terrible stress and anxiety. If I can only turn back the clock ..thank god for all the wonderful people on this site who show us there is a light at the end of the tunnel.

[Nannie-C in reply to Dmck009]

Thanks, I’ve read so much on denosumab and it’s effects on us and that definitely my theme tune now is ‘If I could turn back time’ but we can’t. Take care and hopefully for both of us we come safely out of this in one piece x

[GoldArrow]

Hi Marigold,

I have to say I've been pretty good with it. The only problem was when I had a tooth out (upper back) which caused a small open channel between my mouth and sinus. It wasn't as bad as it sounds, and was easily rectified in hospital.

I do have to say though, that my osteoporosis was caused by Cirrhosis and subsequent Liver transplant. My experiences therefore, may be very different to yours.

[Jan_Noack in reply to GoldArrow]

hI, dO YOU FIND THE PROLIA IS BENIGN REAGRDING YOUR LIVER AND LIVER ENZYMES..MINE ARE HIGH AND i DO NOT WANT TO TAKE ANYTHING TAT COULD INJURE MY LIVER FURTHER

[GoldArrow in reply to Jan_Noack]

Hi Jan,

My LFTs have always been excellent since my transplant (with or without the Prolia), although I should say that my donor liver is a healthy one and I can't comment on the effects of Prolia on anyone else's body.

I can't imagine your Endo' Dr giving you Prolia without checking your bloods or consulting your Liver Dr.

Good luck.

Mike x

[marigolds]

I am trying to decide whether to have the injections or not. Did you notice any improvement in your bones. I.e. when walking?

[Mamaandme]

I have refused Prolia for many years, though docs push, push, push! Too many awful side effects. My mom took 1 injection without my knowledge. She phoned me to come to her town right then..worst pain of her entire 95 years! Went to doc right then--said pulled muscle, but her pain continued. Ended up in ER, with lots more meds prescribed, and one was prednisone, in large amounts. More horror. Finally her doc back from vacation, we went in and he took her OFF all but a pain killer, which she took briefly. It's a miracle she got through that. I do not know a decent alternative other than good food, vitamins and calcium, within moderate doses. And walking. It's a mess! I have hip & back pain, but live with it.

Years ago in 2007, I did Forteo injections a while. Once you have started it and stopped, you can never take it again.

[marigolds in reply to Mamaandme]

Thank you so much for that. It is difficult to know what to do. I am wondering whether to increase my vit D so I looked on my blood test results - all were normal except on one of my previous kidney tests which said WARNING. Very scary- any knowledge about that? The doctor won't give it me as she doesn't think I need it.

[Mamaandme in reply to marigolds]

No direct knowledge, but I think you can take about 5000 mg of D without a problem. I get them from my insurance and each tablet is 5000. Also get out in the sun and breathe fresh air. Let me know what you decide. Where are you located? My son is in SF, CA with the wildfires so that air is NOT good to breathe. BTW, facemasks are not good for us. The world has gone crazy. I'm still against Prolia. I wish I was disciplined to walk more. Best thing ever!

[marigolds in reply to Mamaandme]

I am in the UK I have just been watching the wildfires on TV and hope your son is OK. Agree with what you say re Covid and I am afraid to walk in case it makes my hips bad. Thanks for the info re vit D. I am taking AdCal and when I asked my Rheumatologists advice and could I have a prescription he told me to up my dose.. having a blood test end of September. I am worried about calcification and damage to kidneys.

[Mamaandme in reply to marigolds]

I'm located in Mississippi and thankful we didn't get 2 storms, Marco & Laura at same time. Laura is still a threat however. I wish we could get to know each other better on here, like if you are on FB and names, etc. I'd love to have a good buddy in UK. My nephew lives in Dublin & it's past time for a visit.

I don't think walking will hurt your hips. You might have soreness first few times, from NOT walking. Just don't go far. I've been working on family photos, so no exercise lately. Maybe take a hiking stick or cane with you for support at first.

Thank you so much for responding to me. It's 10 pm, so time to stop working for the night. I hit a snag with file folder anyway, and haven't had dinner. (I'm so bad!) LOL!

[Hatters2]

Hi Marigolds. I have had 2 denosumad now. The first one I had I did get very bad head ache for first couple of weeks. The 2nd one I have had no side effects. I haven’t had another bone density scan yet, but my hip pain is greatly improved. I am in Southampton in the uk.

[marigolds in reply to Hatters2]

Thank you for your reply and I'm happy to hear that. My hips play up a bit. Let me know how yours go.