Does any take Residronate (Actonel)? If so could you share your experiences? Thanks a lot!
Most people take alendronic acid - only few have said they are on risendronate. They are both bisphosphonates and aren't supplements but medications.
Have you had a dexascan to show your bone density and whether you really need it? If your bone density is good it is better to wait and see how pred affects your bone density and take vit D and calcium supplements in the meantime.
I am taking Alendronic Acid and Adcal D3 . To protect my bones , can't believe how difficult this polymylagia is to live with
John, did you have a DXA scan first? My result showed osteopenia, i refused the AA offered and have improved my bone density, such that the meds are no longer even recommended, solely through nutrition, supplements and exercise. Looking after my bones has been good for the rest of my PMR-afflicted body too.
I've had a lot of practice after 14 years but it is easier to live with than many other things!
Like Anhaga, I don't take anything other than vit D and calcium which have been quite enough for my bone density to remain stable over over 7 years of PMR plus pred.
Loss of bone density is NOT inevitable. It is said 40% or so of pred patients develop osteoporosis. Compared to the 50% of the general population in the USA that doesn't really seem too bad. Does it?
Hi no I have not had a DXA scan , the specialist put me on the medication due to the fact I could be on pred for the next 3 years . I was diagnosed in November last year ,the pain in the shoulders neck and lower back i have good and bad days with these, but the insomnia and brain freeze is making it impossible to work.
Very likely - but it doesn't mean you will definitely develop osteoporosis. You need an early dexascan to establish a baseline and find out if you NEED bisphosphonates. I didn't - and 7 years later, always on pred and no bisphosphonates, I still didn't.
I have been taking risedronate for three years with no problems. I broke my wrist , was sent for a dexa scan and was found to have osteoporosis in my hips and my spine was osteopenic. Several months later I started steroids for polymyalgia. I had a follow-up scan this summer ( three years after first)and both t-scores have improved. Because I am on steroids the fracture nurse will be repeating the dexa scan again this year. I hate having to take risedronate having read the negative findings. However I feel I am between a rock and a hard place. My GP has said osteoporosis is mainly genetic and several members of my family have it. My mum had it and died this year following complications after breaking her hip. Her sister has broken both hips this year! However having said all the above I intend to stop taking risedronate shortly. I am on a very low dose of pred( 1 and half) and with a bit of luck will get off it soon. With my pmr so much improved I go to an exercise class twice a week and have upped my daily exercise and I try to eat a diet which is good for bone health.
I've had a bit of back pain the last few months, coinciding with a PMR flare. Both seem to be under control now, thank goodness! My physiotherapist is a miracle worker, she has a very good understanding of PMR weakened muscles and has been very careful with her treatments and the exercises she prescribes for me. I have done a lot of things to maintain and improve my bone density, not just nutrition but exercise, and am so very glad I didn't take any of the OP meds.
You may well be one of the people who can benefit from a few years of bisphosphonate treatment. And if you also institute some of the so-called natural things when you discontinue bisphosphonate treatment you will already be on the way to continuing to improve your bone strength through nutrition and exercise. The only side effect from exercise and nutrition, including a few supplements, will be improved general health!
I have PMR and on 17.5 mg of Prednisone daily. Before I got it i had Osteoporosis. I am taking calcium and D3. Also am eating lots of greens, almonds and berries but my bones are still getting worse. What type of food and excercise do you do. I need help. Thank you.
A supplement I added is Vitamin K2. There is some good info about this online. It, and magnesium, make sure calcium goes into the bones where you want it. Vitamin D can't do that. Eating a lot of leafy greens, especially broccoli and kale, and fermented dairy like some cheeses, kefir and yoghurt, is supposed to be a good way to get calcium, better than liquid milk. I do some weight bearing exercise. Not being athletic, and having fairly severe osteoarthritis in my spine, I walk, do Nordic walking, and also wear a weighted walking vest. I also took up Tai chi. Tai chi can improve one's sense of balance as well as apparently even improving bone density. As falling is the biggest risk for falling (not bone density) something like Tai chi is a good thing to do. There are likely other things. Some people do heel drops, or bounce. I've avoided that because of my back trouble, but it's supposed to be very good, when properly done, for increasing bone density.
I'd say, given what you are already doing, the secret likely is adding Vitamin K2 which tends to be deficient in the modern Western diet. And although it's been known about for quite a while the word really hasn't got through to our medical caregivers. My daughter is a youngish dietitian and she hadn't heard of it until I told her about it so I wouldn't expect the average doctor to even know the difference between Vitamin K1 and K2.
Same here, Eileen. Oh . . . and magnesium (occasionally) when I remember. Though don't really know why. Scans didn't show a problem but Vit B taken as a precaution.
Definitely 🙂
I mentioned on a previous post that I have PMR/GCA, am on pred and now also a DEXA scan shows severe osteoporosis with a T sore of -4. Although I am dead set against it , I will be starting Prolia, a 6 monthly infusion for the next 5 years. 😩. As someone stated before, I’m between a rock and a hard place. Although at 62 I’ve never had a broken bone and have no symptoms of osteoporosis, it is hereditary and I’ve obviously had it a very long time with the prednisone kicking it up a notch ( I started on 50mg). It infuriates me as I am very fit, ( or was pre-PMR), very thin, eat an anti inflammatory diet with lots of leafy greens etc, I juice, eat well, have been taking calcium, magnesium, K2, D3, zinc, fish oil, and get lots of sun and excercise in my pool, do yoga, resistance band excercise, back strengthening exercises, and can balance on one leg like a ninja. Just goes to show, if you’re goiig to get it you’re going to get it. But the risk of NOT taking the Prolia outweighs the risks of taking it. I have been told I could have a Hip,or back fracture from coughing. Don’t bend or twist. And there’s is a mortality rate of 25% from a osteoporosis fracture so falling is not on my to do list, let me tell you. So far I’ve only had relative few pred side effects compared to some, so hopefully I’ll only suffer a few
Prolia side effects. Hopefully I can manage them. I’ll. Let you know how I progress, and I’d love to know how yourself and others progress combining pred and an osteoporosis medication. Est of luck, I certainly have my fingers crossed for all of us.
Thank you so much.
Reading the posts above, can I just make it very clear that the "don't" with regard to taking bisphosphonates on any of the PMR/GCA forums relates to "unless it is shown you need them", i.e. that you have had a dexascan which shows you are in the osteoporosis range. It is the automatic writing of a prescription at the same time as the pred for omeprazole and everything else they allege are "essential" that is to be seen as questionable.
If you have a dexascan at the time you start pred you will know whether it is pred that causes any loss of bone density. Clearly there are many people who have it anyway. Anyone who has been in PPIs for any length of time is at an even higher risk of developing osteoporosis - but they don't hand out bisphosphonates when they tell patients to take PPIs.
But they must be used properly - and that means having calcium and vit D levels checked at the same time as they start them. If the calcium and vit D levels aren't right - all the bisphosphonate in the world won't increase bone density.
I was told that once off prednisone, I'd be off Fosamax as well.
Very wise advise as always Eileen. Can I ask something in regards to your comment on the right levels of calcium and Vit D. I’ve taken both of these since starting pred 7.5 months ago, even though my bloods at the time showed normal range calcium and vit D levels. After the dexa scan beginning of December the dr increased the dose and changed the brand to one that is supposed to improve bone and muscle health. I hoped I could fight my osteoporosis by doing everything right eating and excercise- wise, but I start the Prolia in a few weeks once I return from overseas. My last two blood tests showed elevated calcium levels, the last one taken this week higher than the first so on the way up. With my t-score of - 4, I expected to be in the low or normal calcium range. Does Prolia increase the calcium levels and if so, what then are the effects of that considering they are already high?
Depends doesn't it? If your bone density is still low they will want you to keep on it probably.