Denosumab advice please?

Hi everyone, haven't posted for a while but I am an avid reader every day. I am a PMR sufferer and have been on Pred for just over a year. Started at 15mg and now down to 12mg. It has not been straightforward and I have never had raised inflammatory markers, so adjust Pred according to symptoms. I am under a Rhuematologist who I see every 3mths. 

Have always suffered with pain associated with PMR particularly in hips, thighs and generally the pelvic girdle. Initial dose of Pred improved my pre-Pred symptoms by around 70 percent. Rhuemy now thinks secondary Fibromyalgia, and a Dexa scan last Sept 2015 revealed osteoporosis in 2 of the 3 areas tested. The worst being a T. Score of -3 in lower spine. 

I still work part time in education and definitely have good or bad days depending on what PMR chooses to throw at me on the day!!! I am 58 years old, and try to rest as much as I can, I also have Physio every week to try to keep my muscles as strong as possible. My Primary care has been reasonable, although my Doctor has little knowledge of PMR and relies on Rheumatologists letters of recommendation and this can take frustrating time lapses.

My question is.... Has anyone experience or knowledge of the drug Denosumab which my Rheumatologist has recommended for osteoporosis? I take Calci-chew every day and eat a healthy calcium included diet. Is a T. Score of -3 something to justify the use of this treatment or would it be reasonable to have a repeat Dexa Scan in say 6-12 months time to identify further deterioration. I am reluctant to add another drug into my already suffering body that has horrible known side effects (similar to PMR!!!) if it is not yet needed. Any advice would be so greatly appreciated. I wish everyone a pain free and peaceful day.              Kind Regards Jane.


15 Replies

  • polkadotcom has been on denosumab for more than a couple of years, her bone density has improved a lot and she has had no apparent side effects. I'm sure she'll comment at some point or you could message her if she doesn't appear.

    A T-score of -3 is well into the osteoporosis band - the lower spine is where the lowest scores tend to be found and mine are closer to osteoporosis than normal but still merely osteopeneic. Whether having a repeat scan in 6-12 months would show much difference I don't know - you can only compare scans done on the same machine, the results are qualitative rather than quantative and the changes tend to be relatively slow so having small intervals won't necessarily show a lot. It's a shame the dexascan wasn't done sooner so you had a baseline for pre-pred - you cannot tell how much of this is due to pred and how much due to being you.

  • Thank you, PMRpro I value your opinion and advice. 

    Regards Jane.

  • Yes, I've been on denosumab for 3 years - I'm into my fourth year now.

    I was offered it because I am unable to tolerate any of the usual bisphosphonates, something which became apparent at the beginning of my PMR journey (14/15 years ago and not counting any more).

    I was fine with just the usual calcium and vit D meds for 8 years.  I'm a cheese freak anyway, so eating more dairy wasn't a problem but after that things went pear shaped and eventually the DEXA scans began to show first osteopenia and then spinal osteoporosis.  My last scan showed that the bone density had completely repaired itself and I am considered to be osteoporosis-free.

    I've had no discernable side effects and I suspect that I will be kept on it until my next DEXA is due (every two years here) and they will then decide  whether I stay on it or not.

    As far as anything else goes I do have severe osteoarthritis as well but a total hip replacement last year caused me no more than the usual problems.  I am hoping to have a knee replacement next week (but in view of the doctors' strike I am not holding my breath.  It's been cancelled once already)

    So that's how it's been for me, if you have any questions, please ask.  Also please ignore any typos - my computer fried itself last week and I am using a borrowed laptop.

  • Hi polkadotcom, thank you for your reply. I was reluctant to take the usual bisphosphonates because I have a gastritis problem already, so was offered the Denosumab. Some of the side effects don't make for good reading, incidentally I have taken Omeprazole for 7 yrs with little advice given regarding bone loss as a side effect so I can't solely blame Pred for my Osteoporosis and as PMRpro has mentioned it could just be me!  I do think however that considering my age and thanks to the support and information this site has given I would probably be wise to give it a go in the hope that I have a similar experience and result to you. 

    Thank you so much for taking the time to reply, you have made a clearer difference to my decision.         With kindest regards Jane

  • I'm sorry, but I can't let this go without comment.  There have been controlled studies showing less drastic treatment can be as effective as pharmaceuticals for improving bone health, without running the risk of any of the side effects.  Please do a lot more research before you begin any sort of medication.  The two most important things you can do for your bone health are to make sure you are getting ALL the nutrients needed for proper calcium absorption (this includes the elusive Vitamin K2, not K1, which is what makes sure calcium goes into your bones and not into blood vessels or organs where it's not wanted), and to get appropriate weight-bearing exercise (walking, tai chi, nordic walking have all been shown to be helpful).  If you want to try something a little more unconventional but without the side effects of the patented form, there is strontium citrate.  I don't know if strontium really makes bones any stronger but it does show increased density in scans.  Citrate is a naturally occurring form of strontium so the drug companies have come up with a manufactured form, ranelate, which is much more expensive and comes with its own set of side effects.

  • If the most severe bone density loss is in the spine then exercise rarely helps significantly as far as I am aware. It is a very different matter with hip but even I would consider denosumab for spinal osteoporosis.

  • Thank you HeronNS and PMRpro for your contributions of help and wise words. I will carefully think over everything said.

     Though I believe that Alternative solutions hold a valuable consideration, I am in a situation none of us want to be in and Denosumab injections could considerably change that.

     Polkadotcom's experience is encouraging, and asking for advice on here has certainly helped me to move forward now.  I will share my own experience in due course.

    Thank you both so much for taking the time to help......Kind Regards...Jane

  • It's fascinating that one of the common side effects of denosumab is low calcium levels.  And I've read repeatedly that exercise can improve density in spine.  Here is one site:

    Denosumab works by preventing osteoclasts from maturing.  They are one half of the mechanism which performs bone remodelling, the other half being the osteoblasts.  Unfortunately for people taking this drug, osteoclasts also have a major part to play in a healthy immune system.

  • A common side effect of ALL the "bone building" medications can be low calcium - because they bind the calcium. That is why it is so important to have calcium and vit D levels checked and rectified if low BEFORE starting to take any of them and then to have them checked intermittently while taking them. 

    By the way, Anhaga, the link you provided includes this statement:

    "Will I still need to take osteoporosis medications?

    Exercise can't replace osteoporosis medications. No matter how well you stick to your exercise program, you'll still need to take your medicine. But medications are no substitute for exercise, either. If you're not staying active, you're simply not giving your bones the best protection possible."

    Whilst it is a very good article, it also suggests earlier in the text that doing 30-60 mins of the chosen exercise 3 times a week is required, having suggested doing squats until you are tired! Some people here may be able to manage these - they are aimed at healthy people - but many with PMR won't be able to manage them without great difficulty and if we exercise until tired we do run the risk of not being able to exercise at all for a few days! 

    It is also a very different matter using exercise as an adjuvant or prophylactically - as this guy is actually advising - and relying on it to increase bone density which is already very low. He points out it will take months to see significant increases.

  • Points taken - however it would take months to see the results of any bone health regimen.  😉  I'll take my chances with god and nature, and just wanted to put this out there as a perfectly valid alternative to B. Pharma.  It could also be argued that it's a reasonable approach when working to improve bone density to consider improving the overall health of the patient, which will of course include nutrition and physical activity.  As opposed to adding a substance of questionable toxicity to a body that is already weakened.

  • It would be wise to consult with an endocrinologist to see if there is a physiological reason for your osteoporosis. You also should get a x ray to check for compression fractures.

    I've had osteoporosis (with no compression fractures) for 8 years due to low testosterone. With T therapy, and lifestyle modifications, including exercise, proper nutrition, and vitamin and mineral supplementation, I've been able to slowly improve my bone density. The only reason I would consider taking any pharmaceuticals for osteoporosis is if x-rays show spinal fractures. That raises the urgency of the situation.

    Search up some osteoporosis forums and read about others experiences with osteo drugs. Most are very dangerous, and in the case of denosumab (Prolia), it is in your system for six months, so if you have a bad reaction, it takes a long time to recover. 

    Do much research before agreeing to use these drugs!

  • Just a comment before anyone says it again - there doesn't seem to be much hope for those patients who like me, cannot do any reasonable amount or indeed the type of the exercises required.  I'm currently able to walk only few steps before needing to rest and I came over all peculiar when PMRpro mentioned the squats.  Those happen only in my dreams!

    Before anyone begins banging the exercise drums again, it might well be a good idea if you take note of who as well as what you are replying to.

  • Frankly I can't imagine doing squats even once!  Not do I think they are necessarily the "best" type of exercise.  The point I wanted to make was simply that exercise does have a beneficial effect on improving BMD in the spine.  I grabbed that article as being fairly authentic looking without spending hours reading and researching to get the best, and perhaps I should have been a bit more careful  I think the COMB study (linked somewhere above via researchgate) is really interesting.  (Also, Polkadotcom, I was primarily trying to express my point of view to the original poster, Jane57, who had asked for opinions about denosumab.)

  • Point taken, HeronNS.  I just get a little frustrated being told to 'exercise more' even when they can see I'm using a walker (or even on crutches).  I will take to wearing a label, but I bet I run up against someone who can't read.....................

  • Polkadotcom, people are funny aren't they?  We have adequate parking spaces for disabled people here, and recently a man felt forced to go to the media to tell about all those who are rude and unkind to him whenever he uses such a space.  Along with the newspaper article was a copy of an x-ray of the hardware inside his leg.  He walks with a pronounced limp.  I think he would understand your frustrations.  

    I do apologise to you, and I should be more sensitive to the fact that there are people of very many different levels of ability on these forums.💕

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