Steroids and osteoporosis

I've recently had a bone scan after five years of being on the steroid prednisolone for Polymyalgia rheumatica. I'm told that I have osteoporosis in both areas they looked at, the bottom of my spine and left hip. I took one dose of Alendronic Acid five years ago, prescribed by the doctor as a preventative measure when first starting the steroids but I had a very bad reaction with extreme pain in my hips four hours after taking it and couldn't put any weight on either leg. I've now been referred to a rheumatologist for advice on what medication to take. I don't know how long that will take though. In the meantime I suppose I'd better start walking!

19 Replies

  • What was the actual result of your bone scan, and what else have you done to try to maintain bone health besides that rather disastrous encounter with AA? I was told I had osteoporosis, but in fact my T-score puts me in osteopenia range. The prednisone is what increases fracture risk, according the formula. I've spent the last few months since diagnosis doing everything I can to at least maintain my bones and hopefully improve them without resorting to OP meds which I find really scary - the more so because I appear to be very sensitive to the prednisone itself and I hate to think how I would react to other major meds!

  • -2.5 and -2.8 were the T scores. Just in the osteoporosis range I understand. I was just told by the doctor to maintain a calcium rich diet, which I have, and to exercise. The exercise has been somewhat sporadic depending on how the Polymyalgia has been. My calcium levels and Vitamin D levels are normal.

  • Well, I would do an awful lot of research about medications before agreeing to take any of them, especially as you are in pretty good range of normal. I always ask people if they are taking Vitamin K2 (not K1) along with their calcium and D3 as it is the vitamin which makes sure calcium goes into the bones rather than being deposited on the walls of the blood vessels. It's hard to get in a modern diet, but supplements made from the fermented Japanese food called natto are available.

  • Yes, this is what I'm doing . I'm using the vitamins made from whole food from the makers called garden of life. From a Organic algie and my K2 is from Organic Natto. Which is MK-7 . My Vitamin D3 is from Lichen 1,000 IU. My Magnesium is only 60 mg from Organic algae. But I've also have Strontium and Vanadium from Organic Algea. Read their book called Vitamin Code Unlocked to get some more understanding.

  • Yes, you are thinking correctly. Any Meds only appear to be helping before you find out everything is going to hell in a basket. Something like that.? In a hens basket!?

  • Ha ha! I've heard the expression as "hell in a handbasket".....

    I have a risk of fracture over 20% within ten years because prednisone (for PMR) automatically raises risk to higher category. I appear to be rather sensitive to prednisone, developing some of the more serious side effects (elevated blood sugar, increased ocular pressure, possibly bone thinning) and have been reducing slowly and steadily, but apparently the risk to bones continues to some extent until pred is discontinued completely. I hate to think how my body would respond to other heavy-duty meds!

  • I replied, but don't see my reply?

  • Iam on prednesalone for GCA bone scan late last year scores AP spine -1·9 hip above average . Contact Osteoporosis society they will offer good advice . I went on line my self and used the FRAX tool OP adviser will help with this I did it myself ,printed results took to doctors you need to go with as much info yourself mine came back 14% chance of major fracture in next 10years ,hip fracture. 0·7% in same time frame so no drugs for me rumatolagist with me on this

  • Hello,

    I have had rheumatoid arthritis for over 40 years. Am now 64 years old and have taken prednisolone for over 30 years. Eight years ago I had a stress fracture of my right tibia, following surgery for a left ankle replacement. At this point I was referred for a bone scan. I was found to have osteopenia and started on Alendronic Acid. OK, so it's not the most pleasant drug to take but I persevered. A repeat bone scan after 4 years showed normal bone density and I was able to come off the drug. Just wanted to post this reply to emphasise the effectiveness of the drug. Due for another bone scan soon, so hoping that will show healthy bones.

    Best wishes Pam

  • The thing about AA is that even though you are off the drug it is now permanently in your bones. You are fortunate not to have had bad side effects but for those that do, it can be devastating, so no one should take AA or related drugs unless it is absolutely necessary. The other side is that bone density may be improved, but not necessarily bone health. It isn't straightforward at all! But I'm glad things worked out well for you.

  • Nice to have positive post about this drug thank you ,i have GCA on prednesalone 18month's how have you coped with side effects I started on 40 now on 10mg just had flair .it's the mental attitude all ways been glass half full ,simple example had a Millignent melanoma 35 years ago told I might only have 6month's I was 27 told consultant to busy to die. But pred and thyroxin has brought me down any advice Olive

  • Appreciate your opinion HeronNS, but there is always an alternative view. As. qualified nurse and psychologist I did lots of research and made an informed decision regarding the use of AA. The main side effect of AA is joint pain. I may have had joint pain but it was indistinguishable from my usual arthritic pain. I needed to avoid further fractures and this was the sensible decision in my case. Every individual needs to make to take the best action relevant to their situation and take advice from a trusted consultant. All drugs have side effects. One needs weigh up the benefits of treatment and the potential contra-indications. For some of us it is a no-brainier.

    Regards Pam

  • Yes, it was a no brainer for me to take my chances with calcium and vitamins and exercise! You are right, we are all entitled to our opinions.

  • I'm on my second month of Alendronic Acid. My GP put me on it as soon as I was diagnosed with 3 spinal fractures. Agony City or what. I was OK at first, but now I can't put my weight on my right leg and stand up straight at the same time. So I'm walking around like Quasimodo. I'm on Fentanyl patches and Oramorph which has stopped the pain in my spine. I have minimal OA in my right hip, RA for 30 years, and now sciatica, I'm not sure what is causing my pain. I had considered the AA being the culprit, but I'm not giving it up yet.

    I also take 2 Adcal D3 every day. And thanks to Heron's advice, I've increased my intake of good quality meat and eggs for the vitamin K2.

  • That's how I was four hours after my first dose of AA....only in both legs!

  • I don't want to take biphosphonates because of my adverse reaction the one time I took Alendronic Acid but I would be interested to know if the other types of medication for osteoporosis are effective.

  • On another forum someone has posted information about two studies that have been done evaluating studies on bisphosphonates. The results give one food for thought.

    Systematic Review of the Efficacy of Bisphosphonates

    Systematic Review of the Harms of Bisphosphonates

    Worth reading no matter which side of the argument you are on.

  • Thank you. I have an appointment in June with a rheumatologist to discuss this.

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