Ignoring advice of doctor regarding osteoporosis meds

[Navion]

I am interested in hearing people who have osteoporosis (bone scan t-scores of at least -2.5), whose doctor advised them to go on osteoporosis medication like Fosamax or Re last when they started prednisone, and who ignored their doctor's advice. What else are you doing, how are your bones faring with prednisone, and do you think you should have listened to your doctor.

I have been on Prednisone for a month at 10 mg, though I may try increasing to 15 per my rheumatologist's advice. Yesterday, she really pushed Reclast or Fosamax because my lumbar t-score is -2.5. The other two were -1.4. She scared me when I said I didn't want to take it. Yes, I am fair, small boned, female, and very thin. I am taking a Calcium supplement called Bone up which has other bone healthy things in it, and D3/K2. I currently don't eat dairy, but eat lots of veggies and nuts. I also walk 4-6 miles a day and do Tai Chi. No weights training for the past year due to PMR.

[Soraya_PMR]

To keep you going til you get some replies, read this from our resident expert Heron

healthunlocked.com/pmrgcauk...

[HeronNS]

Have a look at this thread. Especially Aristotle's reply where he gives the improvement in his DXA scan. Some of his original readings, although definitely not all, were worse than -2.5.

[Navion in reply to HeronNS]

I don't see a thread?

[HeronNS in reply to Navion]

Oh, drat, forgot to post, will take a while to find it again, but I will. Bear with me.

[HeronNS in reply to HeronNS]

healthunlocked.com/pmrgcauk...

Still on the clipboard!

[Navion in reply to HeronNS]

Thanks

[Marijo1951]

I can't remember what my t-scores were when I was first diagnosed with PMR and GCA, but they put me within the osteoporosis range. My rheumy prescribed alendronic acid but it seemed to burn out my insides and I was in agony, so I only took it twice. I was then given an appointment for an intravenous infusion of bisphosphonate, but then started to research and found the information about possible side effects so scary I cancelled it. I was then prescribed an alternative oral version, risendronate sodium, which didn't have the horrendous side effects of alendronic acid, but I was very unhappy about putting it in my body so only tried it once. It just seems crazy to me to take something that will make my bones hard but brittle and inflexible and, therefore, more breakable. My rheumy did once give me a pep talk about the risks I was running but I think she saw that I was determined against taking these dubious medications and she hasn't persisted. I saw her on Wednesday and she didn't mention the subject.

My supplement is Osteoguard Ultra, available here in the UK from Nature's Best. It contains calcium, magnesium, vitamin D3 and vitamin K2. I eat plenty of veg and salads, especially the green leafy type and I do eat dairy. My exercise is mainly limited to long-ish walks although I don't manage 4-6 miles per day. However I did a course of balance-improving exercises earlier this year and I do practise them from time to time.

[Navion in reply to Marijo1951]

I also got the pep talk about the risks, mainly that the problems caused by the medicines are better than hip or spine fractures. She just about had me convinced but then I changed my mind when I did more research. Hopefully she won't persist with me either.

[Cally55 in reply to Navion]

Obviously it is your decision about what medication you will take. As someone who has several vertebral fractures most probably as a result of a large cumulative dose of prednisolone all I can say is that the doctor is not giving you a "pep talk", she is telling you the truth. Vertebral fractures are excruciatingly painful, life changing and untreatable. I have recently seen a spinal surgeon who explained that the treatments available do more harm than good. He had that look that doctors do when they know they can do nothing for you and find it difficult.

I now take a lot of opiate medication for the pain and have to put up with a background of media hysteria about opiate addiction as well. It is only during the hour or so that the tramadol kicks in for my back that I am aware how painful my shoulders are from the PMR GCA!

[Marijo1951 in reply to Cally55]

Of course, I have to respect your experience, but I do think that the effects of accumulated bisphosphonates which cause the bones to become harder, less flexible, more brittle and possibly more likely to break are very frightening and best avoided.

[Cally55 in reply to Marijo1951]

The problem is that the steroids stimulate bone resorbtion which weakens them, I had my doubts about taking bisphonates but I figure that even brittle bone is better than no bone. The weakness of the imperial college study that hit the papers is that it only looked at people who had hip fracture requiring replacement, there is no data on how many people with the microscopic cracks didn't have fractures, the authors make this plain. What is needed is more research and development of new drugs, but what chance is there for a disease of old women????

[Marijo1951 in reply to Cally55]

Too true unfortunately, although there are other studies that seem to support the need to be very wary about taking bisphosphonates, and there are other factors that concern me, the dental complications in particular, especially as I have somewhat dodgy teeth.

[Cally55 in reply to Marijo1951]

I know, I spent a lot of time debating whether to have an infusion of zolendronic acid when I may need a root canal. In the end I decided to have it as the various experts seemed to think that the risks of more fractures outweighed the risks of tooth treatment. So far the tooth has settled down. It is quite easy to fracture a vertebra, I did the latest one and a rib coughing!

[Hidden in reply to Marijo1951]

I too have held off taking the Alendronic Acid until after I've had my Dexa scan on the 19th March (having to pay for this as my GP refused me a scan on the NHS) he just said take the tablets. My calcium level has risen since starting the Adcal-D3 and I buy K2 from Holland & Barratt to take at the same time. Hopefully, I will find my bones still healthy after scan, if not i will have to give it more thought about what to do. Osteoporosis is such a painful disease I've been

told, so wouldn't want to get that too. Not sure how much damage prednisone

would do in a year of taking them to the bones.

Anne

[Marijo1951 in reply to Hidden]

I'm supposed to have osteoporosis but I haven't suffered any pain because of it. Ten months after I wrote the above I still don't regret declining the bisphosphonates. I had a fall last August and only suffered a flesh wound in my left leg, no broken bones.

[Suffererc]

Hi, am very interested in your thread. So do they tell you what is a healthy bone score. I am to have a Dexa scan in June (had to request it from GP) she was not keen but relented. She says she will leave AA on my repeat prescription. I stopped taking it and prefer to do with diet.

[Navion in reply to Suffererc]

Yes, the results say if you have a t-score of -2.5 or more, then it's classified as osteoporosis. Between -1 and -2.5, it is osteopenia. Above-1 is normal.

[Hidden in reply to Navion]

Trouble is keeping just above one is hard when we're all taking pred for such a long time. How often would we have to keep repeating the Dexa Scan?

[HeronNS in reply to Hidden]

As an aging person you are unlikely to any longer have the "normal" readings of a healthy thirty year old. It doesn't mean you have a problem. Settle for "osteopenia", eat right, exercise appropriately, and take a few relevant supplements. if conditions worsen get tested for "secondary causes of osteoporosis" which go far beyond long term but low dose corticosteroids. americanbonehealth.org/bone...

Osteopenia is a convenent term to describe people who have experienced normal bone thinning from aging, and also a bit of a flag to look after those bones. It has been turned into an illness requiring treatment by drug companies and gullible, overworked doctors.

[pigeonCl-HU in reply to HeronNS]

Heron, I agree with you about not treating osteopenia as a 'disease', it is not.

Whether we like it or not, aging happens to us all, and thanks for that link, lots of valuable information.

pigeon

[HeronNS in reply to pigeonCl-HU]

Funnily enough since writing the reply I've started reading a little book on sarcopenia (muscle wasting). There is mention in there of a study which divided a group of women with osteoporosis (they didn't say whether they were on any meds but I assume not or the study would have been pointless) into two groups. One did strength training twice a week for one year, the other group did not exercise. The positive benefits for the strength training group included improved bone density, the non-exercising group, no surprise, declined in several ways.

[pigeonCl-HU in reply to HeronNS]

Well, that just proves, there is no doubt whatsoever about the benefit of exercise.

The correct diet also plays a vital part. I think they both work together, and have to be followed, in order to achieve a positive result.

True, it does take time, but the outcome is almost always assured, and NO side effects, like with the dreaded bisphosphonates.

Or rather, the side effects are there, but they are all GOOD!

pigeon

[HeronNS in reply to pigeonCl-HU]

Only passing on what the book says, and it sounded as though the only difference between the two groups was the strength training.

Reverse Sarcopenia by Joseph Tieri

[pigeonCl-HU in reply to HeronNS]

Thanks Heron, my library hasn't got it in stock but will try to source it for me.

They don't always succeed, but are usually pretty good.

pigeon.

[painteratheart]

Hello......I will try to be as brief as possible about my history re this subject. I had a bone scan 20 years ago which showed osteopenia.. I took Fosimax and also infusion for several years..then started having major dental problems. Periodontist gave me report by American Dental Assn that stated the horrible side effects of these drugs (it took 20 years for report to be completed).

I had another bone scan this year since on pred for PMR and I am still only in osteopenia stage. Did my own research on Prolia which doctor had mentioned and the side effects were outrageous. So I decided it does more harm than good, as it stated after stopping it, your bones quickly reverse and are worse than before taking it. I take vitamin D and calcium.. of course every case is different but I will not take meds for this again

[Marijo1951 in reply to painteratheart]

'The side effects were outrageous' - I'm with you all the way on this, although I've been told that I do have osteoporosis. I'm not prepared to take the risks and prefer to rely on supplements and lifestyle choices.

[Navion in reply to Marijo1951]

That's the way I'm leaning.

[Pippah45]

I am waiting for my scan results and would rather go with diet and exercise if it's possible although the Ad Cal with D3 looks reasonable but I haven't researched it yet. I have been taking D3 for several years. Nurse who did the scan went through diet with me and I was interested how much calcium ice cream has it - pity about all the sugar in a lot of ice cream! During the research into my daughter being hypothyroid she tested D3 and surprisingly was extremely low. I say surprisingly because it was a long hot summer and she is a gardener - in skimpy clothes all day long in the sun. So it seems with other Hypothyroid people - it would seem not safe to rely on sunlight for our dose of Vit D3 as some people clearly don't absorb it. Now she is supplementing and feeling a lot better. Not just D3 of course but I think it's an important part.

[HeronNS]

Everyone on this thread, I must remind you all to get a Vitamin K2 supplement as well as your calcium and D3. Also important to keep calcium/magnesium in balance but as magnesium is to plants what iron is to animals you can get a fair amount in your leafy greens. Vitamin K2 is not abundant in the modern Western diet and will almost certainly need to be supplemented. There is good literature on line and books have been written about it. If you are on a warfarin type blood thinner you would want to consult with your doctor and perhaps make sure you take a smaller dose, but my understanding is it is not the same clotting agent that K1 is. The job K2 does in our bodies is it makes sure calcium goes to the bones where it belongs, where we want it.

A good introduction: healthline.com/nutrition/vi...

[SnazzyD]

This is certainly a difficult issue and not black and white like AA bad, natural approach good. It’s quite a complicated risk assessment in my view. Cally55 has fractured vertebrae but there are also those with fractures who took bone meds. I wrote down a list of personal risks and it was obvious. For example, I have complicated dental history due to the way I’m made and it is a case of when not if I have to have major work. I also have the BRCA2 cancer gene and those who have had it in my family 2 have had oesophageal cancer. I was found to have very low Vit D pre Pred so my osteopaenia was likely fuelled by this. I also already had a history of acid reflux. My FRAX score came out just below the line for treatment.

With all that my doc still has said that’s all rare but I’ll certainly get fractures without AA. To my mind that’s getting a bit unscientific because there’s no certainty about it and they were still of the mind that the micro fracture hard bone issue is scaremongering. On the plus side, I am fit (well, trying to get back to that now) and only 56 now and my risk of falls is pretty small. However, I’ve had two humdingers (dog and tree) last year right onto my hip and I was fine.

Have you written a list of personal risks for you in both directions including risk of falls? Have a look at the FRAX tool online to see what they consider being high risk factors.

[Navion in reply to SnazzyD]

Thanks. I'll look into that.