Osteoporosis of lumbar spine diagnosed late 2024. Not having luck with A.A, Ibandronate and now Risedronate which I have just recently started. All have caused bad muscle pain. I have now been diagnosed with polymyalgia rheumatica and taking prednisolone, which is making matters more complicated. Denosumab was suggested by GP but after research revealed you are more prone to infections and a side effect can be UTIs, I have declined to take this as I have history of bad UTIs and don’t want to risk any more. I know people who have had positive results from taking this drug but also people who have had not so good experiences. It is a personal choice really. What I would like to know is what I can take now, especially as I am on the prednisolone and now tapering, which is proving to be a bit of trial and error. My diet is good and recently managed to get my vit D level up to 70 after many years of between 30-40. Calcium check was good but I wonder if I should also take a supplement? I also keep active walking wherever I can and daily tai chi and classes x2 week Would really appreciate some input from others on this very informative site as it is now proving a bit of a worry for me because of the PMR diagnosis and the risk of further deterioration to my bones because of the steroids. Thank you
Hi Easeldoesit,
As well as what you have found out about UTIs another thing about Denusomab which lots of people take and are very happy with is that if for any reason you need to stop taking it - you can’t stop it without taking a relay drug which is likely to be a bisphosphonate which you have tried already and didn’t get on with. You also have to take it at the time you are due to take it, delays can be a problem too. Although, you may have no problems with the drug and have no reason to stop taking it in which case you would be fine.
I’m afraid I have no idea as to what else you could try. You could speak to someone from the ROS for advice about that. Have you had infusions of the drugs you have tried already?
If you look on the ROS website you will find a ‘calcium calculator’ where you can work out whether or not you are getting enough calcium. You don’t want to be taking too much calcium though. Are you taking K2-Mk 7 and magnesium along with your calcium? Hopefully you will be able to taper off the prednisalone.
You’re getting lots of exercise which is good - are you doing anything with light weights. Also look in the ROS exercise page and see what would suit you.
Hi Lizzie2. Thank you for your input. No, I have not had any infusions of the bisphosphonates I have already taken. Would side effects be any less if I considered the infusions? I must do some more research in that area and also check this over on this very helpful site. Not taking k2-mk7+ magnesium, is that important when taking calcium supplement? I have bought the solgar calcium citrate but not started yet. Calcium checker shows I’m over recommended intake and was advised I may not need it but as steroids leak calcium from bones, I’m left wondering if I should start?
Was advised to take 2000iu of vit D daily as have been insufficient for many years. 
Hi Lizzie2. I hope you got my last reply as I seem to be taking a while to navigate around this site. I did type the reply but I see somewhere it is saying it is a draft!! Just confirm you have received.
Sorry, I went for an afternoon nap - I’ve got hay fever of all things and didn’t sleep well last night.
If bisphosphonates affect your gut then infusions by pass that otherwise I don’t know. I hated the side effects and stopped them. Not the best thing to do but I’m ok about it. I did break my wrist earlier last summer but it was a really freak accident and the DEXA results I had after that were actually spine better than my first DEXA results and other results were the same after five years. so I declined the offer of starting them again. Like I say, although I’ve d9ne that I would never advise anyone to do the same.
As for taking magnesium, vitamin D, K2-Mk 7 along with your calcium this probably explains it. I take them all plus 3mg boron daily, a very bone friendly diet and the right sort of exercise but I would never recommend what I do to anyone and the risks are what I’m prepared to take.
I’m not sure the NHS endorse K2 Andymagnesium etc it but it’s what I take.
If your calcium checker shows you’re ok then you probably don’t need to take and more. I hedge my bets for the days when I don’t take my full calcium allowance by taking a single seaweed based Together Health seaweed based calcium capsule every day - the full dose is two a day.
I vary my vitamin D depending on my test results - I do home finger prick tests from this place twice a year https://www.vitamindtest.org.uk and adjust how much I take. I take 1000IU most of the time but I increase depending on the result but I eat a lot of foods that contain vit D.
Hi Lizzie2. Very much appreciate your reply and the link. I feel I’m doing what I can at present, with regard to diet and exercise, to protect my bones …but it is a minefield trying to decide which path to take when it comes to now deciding which bone strengthening medication to try going forward. Considering I have not been successful with the previous three mentioned because of muscle pain and the Denosunab is not an option for me because of risk of UTIs, I’m at a crossroads. Taking the steroids for PMR is making the situation even more complicated as tapering can also cause muscle aches so a combination of both …..well … it is a decision only I can make. Will do more research and meantime continue with my present regime of healthy diet and suitable exercise. Thank you 
Hi Easeldoesit
You don’t say how old you are but, if passed menopause age, have you ever taken HRT? I did as I had a problematic menopause and when I saw HRT on the ROS website as an option in osteoporosis treatment I immediately opted for that to treat my osteoporosis. I use the gel and took micronized progesterone as it is nearest to the body’s own progesterone and, taken vaginally, has next-to-no risk. I personally have experienced no negative side effects with this - only very positive ones e.g. more vitality and thicker, healthier, hair.
Doctors do seem loath to prescribe HRT. however, if you’ve not had it before.
Whatever you decide to take (and again the nurses are a great help with this) I do hope you get it sorted and find something that really suits you.
Not sure what the name is in the UK but I am on Tymlos. Tymlos, Forteo and Evenity are all bone building osteoporosis medications (Tymlos is actually a hormone). Generally you take these for 18-24 months with monitored blood work. I have autoimmune diseases and take a low dose prednisone likely for life. Am fit, active. Tymlos is a bit of a pain, self injecting every day, but I generally feel good and have had few to no side effects. It also seems to have some type of anti-inflammatory impact as my fatigue has improved.
Perhaps speak to your main doctor and your rheumatologist about this class of medications. Basically they are a type of hormone, you can research further.