denosumab injections

[Calamintha]

Hi Everyone,

I’m hoping to get some advice so I can make an informed decision about treatment with denosumab.

I am 61 and I had a small hormone-related breast cancer removed at the start of 2020. Subsequently I went on Letrozole which I couldn’t tolerate. They changed me to Anastrozole which I’m ok with. Due to the anastrazole/post menopause, the Dexa scans show I am now on the lower red warning section for spine fractures and amber/red for hip fractures. (So far I have not actually had fractures). Initially, as treatment, I was put on on Alendronic Acid which caused such crippling bone pain that I considered suicide. (It was honestly that bad) As soon as I stopped taking the pills I was fine again after a couple of weeks.

The Osteo clinic is now recommending 60mg denosumab subcutaneous injections every 6 months. The clinician assured me it was not in the same family as A.Acid. However, she also said once the medication ends you have to take zolonic acid which is. I need to decide whether to accept the injection or not. I am absolutely terrified I will react badly and not be able to “escape” the side effects like you can by stopping tablets. I would be particularly interested and grateful hearing from people who also had bad reactions to AA, but then were subsequently ok with denosumab, and if anyone has stopped the denosumab, what happened with the “coming down” treatment.

I am making myself sick with stress over this decision  - Thanks for your help

[MWZ3]

How bad are your tscores?

[Calamintha in reply to MWZ3]

I dont understand what you mean: I was just shown a chart with Red Green and Amber sections. My spine fracture risk was just into the red section and the hips were on the Amber/Red line

[MWZ3 in reply to Calamintha]

You weren’t given numbers? -2.5 and lower is osteoporosis so -3 or -4 and so on is more serious osteoporosis whereas -1 or -2 is in the osteopenia range. You can’t really make a decision without knowing your tscores. My worst is -5 in a couple of spots and -3 and -4 in other places. I have just been diagnosed with one fracture which was a shock. I have refused any of the meds up to now.

[Calamintha in reply to MWZ3]

Lumbar Spine T = -1.8 Z= -0.4 Left Femoral Neck T= -2.0 Z= -0.7 Right Femoral Neck T= -1.7 Z= -0.4 I have no idea what any of this means

[MWZ3 in reply to Calamintha]

-2.5 and worse is osteoporosis but below that to 1 is osteopenia. Closer you are to osteopenia the more chance you have to fix it naturally especially if you can exercise. Those results are not even osteopenia. Below 1 is fine. You’re lucky and don’t require treatment.

[Calamintha in reply to MWZ3]

I contacted the ROS The Specialist Nurse was fantastic. She expained the scores and said the same thing; I have Osteopenia, but borderline because of the -2 She said its possile to prevent the scores getting worse by appropriate diet and exercise, and so i will check out their web site

[MWZ3 in reply to Calamintha]

Z score is not your tscore the other number is

[Sowen59]

hi Calamintha

I can relate totally with you…. I have osteoporosis and now also arthritis. This was discovered when I was diagnosed with hyper calcium of parathyroid. Covid put my op on hold for 18months, but when I had the offending para removed I was so much better, but the damage was done. So Gp over phone put me on AA….TOtal disaster…so so ill… major allergic reaction. Took me 9 months to recover, so very scared about taking any other type of meds. Now 14mo this after my reaction my consultant contacted me and ask what my GP had prescribed, I said after the AA reaction nothing! In fact I have not had an appointment with them since. He was mortified, and immediately arranged an appointment with a specialist in rheumatologist….. she said Demosumab…. But when I told her about my jaw and teeth and how I couldn’t eat and talk for a month , she said I had to see a Maxillo face specialist first to see if it was safe enough for me to take Demo??

I am still waiting, but like you I am scared of taking anything that will make me so ill again…..I had to give up my job and everything and have just started back working 3 days a week which I enjoy as much as the money… I am 63 and can’t retire yet🤷‍♀️

I shall watch for the comments you receive…she told me that once I start these 6 monthly injections they are for life!! You can’t stop taking them…..scary not like pills you can throw in the bin. I try to eat lots of calcium rich foods and take adcal d3 daily and walk a lot which I enjoy.

Good Luck sheila

[Viazoy]

Be careful! Once you are on denosumab (Prolia in the US) if you miss a shot for any reason or are even late for a shot you can quickly have fractures. This happened to me. Be sure to ask your doctor about what happens if for any reason you need to get off this drug!

[Calamintha in reply to Viazoy]

The osteo clinician said that too; she said you MUST take alendronic acid (or equivalent) when you come off it, which is my main terror. She also said it makes you much MORE suseptable to franctures even as the dose wears down

[Mavary]

hi! Like you I couldn’t take Alendronic Acid. I only had one tablet and was violently sick. I went first on Terraparatide which was fine and then they put me on Denosumab which I’m fine with. I’ve now been on it for two an a half three years. I was told it’s for life. I’ve had seven fractures and if it stops that then good. It’s a decision only you can make. It’s good to get as much advice as possible.

Maybe speak to the Royal Osteoporosis Society.

[Calamintha in reply to Mavary]

I was told its only for a few years. Making a descision can be confusing

[Mavary in reply to Calamintha]

it may be the fact that you are younger. I will be 79 November the 10th. They probably think I won’t be around to have to change it. I do have severe Osteoporosis and I can’t take Biphosphonates.

[emersee in reply to Mavary]

Mavary, can you have Biphosphonate infusions?

[Mavary in reply to emersee]

I don’t think I would be allowed it because it upsets me so much. They probably do do them though.

[Alley27]

Hi everyone, I have osteoporosis which has been caused by steroids. I am on steroids for life so in my opinion, there's no point to prescribed meds for osteoporosis for me. I have a better chance trying to sort calcium levels naturally. I have an overlap of 2 autoimmune liver conditions plus, hashimotos. I have terrible issues with my stomach so taking AA is out of the question I have to be very careful.

I take osteocare plus, vitamin D, K2, C, Zinc. I also take collier oil with vitamin d. I eat plenty of calcium rich foods too.

I have had to leave a job that I love because sometimes it meant me having to lift and even tackle idiots ( event security).

I cannot come off the steroids because I have adverse reactions to other immune suppressant drugs needed to treat my liver conditions.

So no idea what to do, you hear some terrible things about osteoporosis medication. My nan took AA and despite this she had so many fractures.

I also walk a lot, carry shopping in a back pack for weight bearing and I garden...

I wish there were better solutions for osteoporosis.

Take care all xx

[Hidden]

You could ring the specialist nurses on the ROS helpline. Or a breast cancer charity.

0800 8080 0035

[Blueskys111]

I had 12 shots of xgeva ( prolia) over period of a year. I would not recommend that to my worst enemy. I’ve had every side effect it causes and now in a wheel chair. It’s destroyed my bones. Do some research. So sorry

[Calamintha in reply to Blueskys111]

Good Grief ! I'm so sorry to hear that xx

[Blueskys111 in reply to Calamintha]

thank you. Blessings

[Blueskys111]

I was given xgeva for one year in 2013-14 at age 78 for metastatic breast cancer. It destroyed my bones. Please don’t do this until you have done research on xgeva-prolia.

[Calamintha]

I had a long chat with the specialist nurse at ROS. She was brilliant. Very kind, sympathetic and informative. She explained the T scores and I am Osteopenic (Just under osteoporosis) We discussed pros and cons at length and I have decided not to accept the injection in January. i did agree to review my descision if the score gets worse, but "ramp up" good diet and appropriate excercise in the meantime. One thing I learned (which I was never previously told) was I must never do sit ups, or anything weight baring whilst with a curved back (ie leaning forward) She said never bend over and pick up planters (I love gardening). This made me wonder if anything came as a suprise to any of you ?. It could be a helpful fact, or a fact you wish you had known previously. Any tips anyone has would be helpful. I do intend to check out the ROS site thoroughly. The supliments I take are AdCal (Calcium & D) B12, Iron&C, Magnesium & Zinc, Glucosamine, K2, Omega. i am not alowed to take HRT or any supliments for menapause (because of the previous breast cancer) Thank you all so much for your comments