Background: on prednisone since August 2018 and some difficulty initially getting symptom control and tapering. Have previously received help from the forum that helped. Currently on 12mg and using DSNS and that's going fine. Basically managing well... probably due to sensible pacing now. I've been able to resume walking and two weeks attended a water aerobic class and then one yoga class last week in the hope of stepping up my exercise. Anyway the current issue is that a first Dexa scan, ordered by the rheumatologist that my GP wanted me assessed by, showed osteopenia and query compression fractures. A follow up xray has confirmed fractures at T10 and T11 probably steroid-induced they suggested. I see the GP next week. She is likely to want me on bisphosphonates. I know there are strong reservations about these here and I'm not thrilled by the research I've read either I have just started taking vitamin k2 as recommended. Currently take colecalciferol 1.25mg monthly and magnesium 400mg daily. I live in NZ where dairy and meat are grass-fed and I do eat well. Normal BMI. A generally fit and active woman of 70....pre PMR. of course. 😁. So advice about accepting biphosphonates for possibly two years and suitable exercise? I have just started feeling back pain after that first yoga class and now presume it is related to the spinal fracture. I really do not want to exacerbate the spinal damage with unwise activities.
Bisphosphonates for wedge fractures: Background: on... - PMRGCAuk
Bisphosphonates for wedge fractures
Hi Kinnear,
My story is similar to yours. Doctors wanted me to take biphosphonates for compression fractures they found from a dexa. I did for six months, then after reading many negative stories on this website, stopped taking them. I take calcium and mag, that are from sea algae, plus many other supplements. The rheumy wants me back on the biphosphonates. I have decided to wait until I get another dexa scan first to see if my extra supplements have helped, that won't be until next year. I have mild to moderate back pain most days, off and on, but nothing I can't handle. I try not to fall, (although I did this week, when panning for gold in the river with my granddaughter.) I have a soft back brace that helps somewhat, especially with posture. I do believe we have to be our own advocates, get informed, and realize the doctors have to recommend the medical protocols.
Yoga is intense because of holding stretch positions and is not generally advisable unless very gentle (I love my yoga and have had a programme put together) Yoga Nidra is bliss and helps reduce all over body tension. Pilates is better. I wouldn't do either with any kind of compression fractures. See how you go but please give your body a chance to heal..
Thank you. My thoughts too.
The reservations you read about on the site are almost entirely related to the use of bisphosphonates "just in case". I was handed them without a dexascan result - which in the end showed slight osteopenia at a level that then barely changed over the following 7 years, mostly on over 10mg/day. Even I would consider taking them if I were shown to have osteoporosis or if there were spinal fractures. Note though I say consider, not definitely.
You need to speak to an expert about the exercise - I suspect that yoga is not appropriate when you already have spinal fractures I'm pretty sure twisting is not advised. You also need to speak to an expert about the most appropriate medication for someone who already has spinal fractures - that may not be oral bisphosphonates as first line.
This may have info online
and I'm sure there must be an equivalent in NZ since most of your online medical info is excellent.
Thank you. You have responded much as I expected. I will discuss the options available here in NZ with my doctor this week and give an update. As you all appreciate, the frustration of yet more medication with harmful effects. Caught between the rock and the hard place...suck it up buttercup etc, etc. Contemplating too the logistics of adding a morning dose taken on an empty stomach and maintaining an upright position for 30 minutes. I'm enjoying having established an early morning routine in bed taking pred with my latte and muffin and a wee snuggle in before getting upright. It has been a compensatory joy of this new slow life. Bummer.😁
I could have written this post! DEXA scans in 2014 and 2018 showed osteopenia with the latter one showing a minor improvement from a lowest score of -2.3 in 2014 to -2.2 in 2018. I've had back issues off and on for twenty years or more due to degenerated disc disease at L-4 and L5.
I've taken calcium and Vitamin D since receiving the PMR diagnosis in March 2014, and added K2 almost 2 years ago. Every doctor I've seen over the years, and there have been many, has pushed bisphosphonates. An x-ray taken a year ago showed a fracture at T12 of indeterminate age. An x-ray a few weeks ago showed the same fracture. I was advised of the latest results via a phone call from the clinic nurse. I've yet to see the doctor and have no doubt about his reaction and recommendation. At this point I don't know what to do, although I'm inclined to wait for another DEXA.
Oral bisophates I did not take, as they seemed to disagree with me. My last dexa scan showed -1.1 osteopena. I took calcium and Vit D. After a bilateral hip replacement, I had severe back pain, and investigations showed 3 fractures. One had healed itself, one was repaired, and the base of the spine is still under investigation. At this point I was given an infusion of bisophates which took 15 minutes and will last a year. My calcium and Vit D are monitored monthly. I believe everyone has a choice, but given my time again, I would have tried a different bisophate to help strengthen the bones. On the plus side the hip operation was a great success. Thank you all for this forum, it does help to rant, but also gives very useful information.
Sue
Me too. Followup DEXA scan after one year showed some bone density loss. Still osteopenia, but a little worse. As a result the rheumy is pulling me off prednisone (tapering 1mg every two weeks) and my general doctor is trying to raise my Vitamin D level in preparation for the biphosphonates. I totally don't want to take them and I'm aware that there are studies that show that taking the drug doesn't actually result in fewer fractures.
Why is he pulling you off pred? That is rather pointless - all that will happen is the symptoms return.
Yes, and they are. I feel like I got run over by a train this morning. He mentioned putting me on an alternative medication, but I don't remember the name. I'm not looking forward to managing a whole new set of side effects.
There isn't an alternative - not without pred first. Where do they get these ideas?
There is no reason at all to stop pred because of osteopenia - it would be handy to know the t-scores - and you can take bisphosphonates at the same time anyway.
T-Scores, showing baseline, and one-year followup
Left Femoral Neck T-Score: -1.80 --> -2.00
Left Total Hip T-Score: -1.30 --> -2.00
Lumbar Spine T-Score: -0.5 --> -1.5
These scores still fall into the osteopenia level, but do show progression during the year I was on prednisone. I don't know what would be a typical progression for a 64-year old male without pred.
Those are readings that suggest you do need some intervention and because of the steroids - but there is no need at all to be taken off pred to be able to take oral bisphosphonates. Many people take both right from the start - for someone like you it would have been a good move but you can't know in advance.
Hi I am also in NZ. Been on Pred. since Nov. 2018 but Bone Density was right on the border line, I went and had another scan (paid for it) and have gone down 3 per cent on spine. I wont take Fosamax read all the side effects but that is all the docs. have to offer, or the yearly injection. Got a soft back brace which maybe just reminds one not to twist, I have one compression fracture because I did something stupid so now very careful. I take Vit.D3 every week, and a lot of supplements. What area are you in NZ, think each area is different
Hi there. Thanks for your comments. I'm on the Kapiti Coast. My GP is really good at working collaboratively. I will see if she can refer me to physio to safely exercise. I'm reading up on k2 and feel hopeful about that. Probably will take the biphosphonate for a short period and the annual infusion if its offered. Scary stuff though.
Hi I am in Hamilton. I react to all medicine so when I read all the side effects and what it is made from that was enough for me. I take K2 but it is in a food supplement called AGELOC Y-SPAN . Sure they checked your calcium and put you on Vitamin D3. Well hope it goes well for you
Hi Kinnear D,
If you have suffered fractures in your spine you do not have osteopinea, you have severe osteo porosis.
Been there, done that.
Stop the yoga, and seek out proper physio for severe osteoporosis.
Basically they will tell you : no bending , lifting , no twisting no turning, no twisting and bending.
I live in Canada and there are osteo porosis clinics here that will educate you on your spine , how to take care of it , exercises that are safe for your spine and the options you have for medications. The use of activator poles or walking poles for people with Osteoporosis are considered standard of care.
I started with PMR 6 years ago and did the good diet, vit D and calcium supplements and after 3 years had a series of vertebral crush fractures. I could not tolerate oral bosphoshonates.
My Osteoporosis Doctor put me on Forteo ( teraperitde ) therapy which I was able to tolerate for a year. I have rec'd 2 once yearly iv infusions of Aclasta ( zoledronic acid) . My bone densitometry showed a 19 % increase which is substantial. Basically the Forteo built new bone and the Aclasta hangs on to it.
Yes the drugs have potential side effects, which each individual has to weigh, but to fall and break a hip or damage your spine further can take you from independent living to a nursing home real fast.
You are in for a fight for for your bones while you battle PMR.
Not for the faint of heart, but
If you have a positive attitude the changes you need to make can be done, and every day you keep your independence is a good one!
All the best to you on this little detour that life has taken you!
Blessings,
Dorothy
Thanks Dorothy. I will have the Aclasta infusion in a week's time after consulting with my doctor. Must admit I'm apprehensive however there doesn't seem much choice given the fractures.
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