Denosumab for Osteoporosis

[bienassis]

I’ve been reading the posts about medication for osteoporosis but nobody has mentioned Denosumab. I have been having injections of this drug at 6 monthly intervals for 3 years - my final injection (the 6th) in the present course will be in March.

During this time I’v been getting considerable back pain - I’m only truly comfortable lying flat. I was persuaded to finish the course, have a Dexa scan and then future treatment, or not, will be considered.

Previously I had been taking Alendronic Acid for many years but was finally taken off it after my GP had notification from NICE that it should be stopped after 5 years! More recently I had several fractures of vertebrae which prompted the present treatment.

I lot of the experience has been trial and error, it seems to me. But I shall be interested to find out how my bone density is in the Spring when I finish the present course. Added to all this is long-term rheumatoid disease - diagnosed in 1967.

I would be interested in other comments on Denosumab.

[AgedCrone]

It is also called Prolia….ask about that.

[Fruitandnutcase]

Well, I have just been watching a video by Margaret Martin the Canadian physiotherapist who runs a wonderful website called melioguide.com and who specialises in osteoporosis.

I left the video running and this came on, the person in speaking is Jane, a retired nurse who is explaining her journey with Denusomab / Prolia . You might find it interesting youtube.com/watch?v=CwrA99z...(Not working as expected?) - it is well worth watching.

Your story is interesting because I have a friend who has been taking infusions for ten years and after breaking an arm a few months ago her consultant has discovered the bisohosohonates haven’t been working!

[bienassis in reply to Fruitandnutcase]

Thank you very much for that interesting post. My goodness I wonder what I have let myself in for? And where I go from here. I don’t know anyone else personally who is having these injections - or infusions - but I do know the rheumatology department that I attend has several patients undergoing the same treatment.

I can only wait and see what the outcome is - but many thanks for the information.

[golly123 in reply to Fruitandnutcase]

Desonumab again. My useless rheumatologist told me in December 2024 (I've had 3 jabs so far) that my osteoporosis would never improve whilst on Desonumab. No more fractures whilst on these jabs is the desired outcome.

The only thing apparently that will strengthen our honeycomb bones is teraparatide. Please note that these are words from my rheumatologist. Teraparatide needs to be injected by the sufferer on a daily basis. This was my first choice but after spending over 3 hours with a nurse to learn how to inject myself. Sadly I had to abandon this as I have arthritis in my entire body and my hands have lost their dexterity. I couldn't get the needle off or on the epipen. Hence I'm on the denosumab. No new fractures to date (fingers crossed) although I think spinal fractures only show up on a DEXA scan.

Any more info on romosumab would be great. I live in Cheshire. My guess is its more expensive than desonumab which is probably why the NHS don't want to let people have it. I've read it's more effective than desonumab too.

Please excuse my spelling of these drugs.

Golly x

[Fruitandnutcase in reply to golly123]

What a pity you couldn’t deal with the needles for the teriparatide. I think (but I’m not 100% sure) that the problems with Denusomab/ Prolia only come when you want to stop taking it if you have a look on this site you will find a page all about the various osteoporosis drugs theros.org.uk

[bienassis in reply to golly123]

Teraparatide and romosumab. Two new drugs - to me - to bring up when I see the Nurse in March. But I shall also be talking tomorrow to the Osteoporosis society and see what they have to say.

[golly123]

Hiya. Thanks for replying. Teriparatide, I couldn't inject due to my hands not working properly. Can you let me know anything you find out about romosumab. My rheumatologist (she is awful - I wonder if I can change her) says its not available. I read its available throughout the UK. I think it's meant to be superior to denosumab. Thanks again

[oldtimer2]

There is excellent clear information about denosumb on the Royal osteoporosis society website: theros.org.uk/

There should be a specially trained osteoporosis specialist nurse attached to your rheumatology department too - if you have one they are usually well informed and should be accessible to talk to about the best course of treatment fo you as an individual.

[bienassis in reply to oldtimer2]

Yes, there is always the hope that the rheumatology department nurses will advise about what course of drugs are the best for any particular individual. I haven’t found that the case as far as osteoporosis is concerned, unfortunately. I saw a consultant in the department who was, I was told, a specialist in treating osteoporosis. He was mainly concerned about my weight - too low, he said. Well, at that time I had just spent 6 weeks in hospital and had lost over 1 stone. Doesn’t sound so much, but I was only 8 stone before, so I was under 7 stone at discharge. But he had a point, and insisted I see a dietician.

The problem with that was the advice given by the dietician was very short term - that is, stuff myself with biscuits, cakes and every sort of manufactured horror just to put on weight quickly! It was absurd - the weight, if I’d carried out the instructions, would have consisted of fat; whereas it was muscle I needed. So, gaining weight quickly was shelved and Denosumab injections were on the cards, to be given at 6 month intervals until I’d had a total of 6 injections. When I see the nurse for the final injection in March, I’m hoping I will get more time to discuss it with her, but they are always so pressured these days. My old Rheumy took early retirement a couple of years ago and hasn’t been replaced. Consequently I haven’t seen a rheumy to discuss the rheumatoid disease either - the osteoporosis doctor wasn’t interested in that at all. There is a chronic shortage of staff at all levels. Anyway, I shall try the website you recommend and also the Osteoporosis Society.

Thank you for your interest.

Bienassis

[MJSlide1958]

Hello Bienassis,

Please can you let me know how you get on? I have osteoporosis in my spine and have had no treatment. I am awaiting treatment, but GP is not able to get me a clinic app yet. I take calcium and Vit D3, Omega 3 fish oil and Collagen. I will need to do something and not just await the terrible pain. I am trying my best to be careful not to fall etc. Grateful for your update, when your results are in please. Many thanks

[bienassis in reply to MJSlide1958]

Good Morning

Yes, I will certainly do that. I’m surprised you have been so long without treatment. But, on the other hand thinking on the subject of osteoporosis does seem to have changed as the old drugs used for treatment are found to be less efficient than originally hoped, or are found to have, in the long term, the opposite effect! As I mentioned in one of my posts I had been taking Alendronic Acid for many years before my GP unexpectedly stopped it following notification from NICE . He did apologise! But up until then the drug had been considered “a good thing”. I was then left without any treatment until the fractures in my spine appeared.

These fractures can, and do, happen spontaneously - a fall usually comes immediately after the fracture! That is, the fracture causes the fall. Of course, fractures do happen if you accidentally fall. Do you keep active? Just walking can help the bones - even standing for short periods and shifting from foot to foot can have a good effect on the bones.

My daughter is 65 and had a Dexa scan a few years ago; she was Ok but she needed to be aware that she could find herself with weakened bones as she aged. She took up running/walking as a regular exercise and it has made a difference to the bone density. Well, I’m long past that stage.

I can no longer walk without help, so keeping active is a problem. Anyway, after my next injection of Denosumab on 13th March, I am expecting a Dexa scan to see what the results of the 6 injections over 3 years are. I shall let you know how I get on!

Meanwhile, look after yourself.

Bienassis

[MJSlide1958 in reply to bienassis]

Good evening Bienassis,

Nice to hear from you. Thanks for the above, so well explained, very grateful. I do keep very active, I need to support my daughter with her RA, so it does keep me active, no rest actually! Which in turn is good for my bones. I walk a lot and still up the stairs too. I should be grateful. I am mindful of my diet to be a healthy one. I do try! I keep up with my Omega 3, calcium and Vit D3 too. I do hope your results are good after the 3 years of injections. Look forward to hearing from you, fingers crossed. By the way my daughter has been given a 7 to 14 day course of Betamethasone Valerate 0.1% thinly twice per day. And Cetraben Ointment moisturising. I am hoping it will help the Solitary Plaque on her Shin? Many thanks again and look forward to promising results for you. X

[bienassis in reply to MJSlide1958]

Hello MJSlide1958

Well, I had my final injection of Denosumab on 13 March and am now waiting for an appointment for the Dexa scan to see how effective it has been. No decisions have been made for further treatment as it all depends on the results of the scan.

So I shall let you know, as promised, what is decided. It does seem that Denosumab is often very effective. I’ve been having the drug by injection (at the hospital) but I have heard that it is sometimes given by infusion.

Are you prescribed Calcichew? I have been taking that for years, but I also buy myself Vit D3. While having the Denosumab injections I was having regular blood tests to make sure I was up to scratch on Vit D and also on Calcium. The test also included Renal function.

I do hope your daughter is doing well, and her skin problems are settling down.

Best Wishes, Bienassis x

[MJSlide1958 in reply to bienassis]

Hello Bienassis,

Thank you for the update, I do wish you best of luck on your results of scan/renal function. I have been taking Vit D3 and Calcium for years. And I have started a few months ago taking BioCare's Collagen Complex and hoping for the best really! I have yet to get an appointment for Dexa, but not hopeful because I tried for Clinic app but it was thrown back to GP. Will keep pushing. My daughter takes priority, she's young and has been fighting for 15 years. I am trying to keep well for her. Her skin problem has not cleared completely with Steroid, she continues to use the Cetraben to keep moist. But NHS are not giving Derma appointments until September, therefore she will wait and just get instructed by GP. What a mess really! I do hope all good with you soon, looking forward to good news from you. Best wishes MJ

[bienassis in reply to MJSlide1958]

Lovely to hear from you - but what a long wait to see someone in Dermatology!

Some departments are like that unfortunately. I had to wait many months to get an appt. about my strange ear condition - Patulous Eustachian Tube Dysfunction. I finally received an appt. from the ENT dept for mid April after first seeing the GP last September. I'm not a priority, apparently.

I certainly hope the waiting time for the Dexa scan is not as long!

I'll be in touch as soon as possible. Our daughter will be here next weekend for Mothers' Day. She lives in London so it's not too far to come. She is always very cheerful and since I've been housebound she brings news of her cultural life in London which is always welcome.

Look after yourself - and your daughter, of course.

bienassis x

[MJSlide1958 in reply to bienassis]

Lovely to read your reply! Yes, unfortunate for such long waits! I do wish you luck for yours in April, hope it gets sorted. Lovely to look forward to Mother's Day! I bet your daughter is not to far from me? Have a lovely time and will be nice to catch up. X

[CallMeSunny]

Prolia Evenity Tymlos Romosomab etc…see my post in reply to you under your heading ‘PROLIA”

[Reeceregan]

I have been on biannual Prolia injections since Feb 2018, so I’m about to have my 16th injection next week. My dex scans show a big improvement since starting, my lumber was -4 and is now -3.2, one hip has even gone from osteoporosis to osteopenia. Each 2 year scan shows improvement, although admittedly much slower now than the first one. I have never had a break but am also very aware of the risk. I also have RA so very conscious of stability. I was originally advised Prolia was a 5 year drug and then I’d need something else due to the risk of rebound fractures. Now my rheumatologist has said lifelong Prolia. It is what it is. I have no side effects from Prolia, no pain from osteoporosis. My excercise of choice is dancing, albeit on my own, jumping around at home to the latest hits. In fact I’m quite fit and able for a 70 year old whose just had shingles and has post hepertic nerve damage requiring Lyrica since August. I’m following drs advice. He’s got me this far.

[bienassis in reply to Reeceregan]

How good to hear how well you are. I’m wondering if my age - 89 and soon to be 90 - will make a difference to my future with Prolia. No doubt the Rheumy Nurse will be telling me about that when I see her on 13 March for the next injection (the last of the present course). I have a lot of damage from Rheumatoid Disease since 1967, and rather wobbly on my pins. Well, I’ll what happens!

[ABwn]

Was put on Prolia last summer and told because of the damage to my spine and my age I will be on it forever. I believe when you come off Prolia you need to take another med straight away. Check with your rheumy nurse. Good luck.

[bienassis in reply to ABwn]

Thank you - I had suspected that might be the case; when I see the Nurse for the last of 6 injections on 13 March I’m hoping all that will be made clear.