Does anyone know the rating for Osteoporosis

Hi

They dont seem to know as it is on hospital records and my doctor has no acess !!!  However originally it was in both hips and just starting on my spine , now I have no idea what is happening and after 5 years it is very worrying , I think I do need to go back and really push for answers

Hi

He just gave me more Aludronic acid and Ad cal  , so no change at all

Willowwand, I know that  practices may vary between countries and between medics but It is just not acceptable that you don't KNOW the state of your bones after 5 years of treatment and that your doctor is unable to access your hospital records. (I'm not implying that this is your fault, of course). 

Yes, as you said, get back to your doctor and insist that he request your results from the hospital scanning department. If this doesn't work, change your doctor and get a second scan soon. THEN you can discuss the various treatment plan and medications (if any). 

It makes me so annoyed that doctors can be so damn casual - he wouldn't be if it was his own wife who was being treated!!

Good luck, and keep in touch.

J

I suspect 'not be able to access records' is a bit of a red herring.  My GP put me on alendronic acid before he'd got the results of the bone density scan.  They made me so giddy that I stopped taking them after 5 weeks - several times I fell into a wall because I was so giddy.  When I went back and told him he gave me another prescription for basically the same thing.  No results were offered (by this time they'd got them).  My husband managed to sweet talk the receptionist into printing them out for me and there was a chart there, along with all the numbers, to say I was below treatment level.   The prescription went in the bin and now I take calcium, plenty of dairy and Vit D and Vit K and magnesium.  And exercise.  Exercise is limited because of arthritis, but I can manage a bit on a treadmill every day which has to help.  I also use an exercise bike, but that's non weight bearing, so wouldn't help the osteopenia.

I have a printout of my scan results, or, rather, I have a printout of the summary.  This does not include my T score, although there are some numbers that I don't understand, but it includes a statement that because of my medical history I am at high risk (this includes my prednisone treatment for PMR and a fracture over a year ago which I am 99% certain was NOT a "fragility" fracture), and that medication is advised.  I continue to read and research and am more and more convinced that the medication is not the way to go, at least for me, and have turned it down.  I have bought a "weighted walking vest" which I wear every couple of days for a few hours, I have hopefully improved my diet and supplements regimen and I have taken up tai chi.

That's a good idea with the weighted vest.  I wondered about that too (and actually had some 'saved in a basket' but never did anything about it) but it has to help if you're on your feet, moving around, I'd have thought.

Where do you live?  I had exactly the same answer - my doctor has no access to the full records.  I signed up for the unfortunately named "Falls Clinic" at my hospital although I've yet to hear when the session will be and was told I would get all my results at that time.

I think the right way to use the vest (I ordered it from a company in Texas and had to pay about 25% duty to get it to Canada) is to make sure the weight is always enough to "surprise" the skeleton into making more bone.  Hence it is not to be worn so much that you get used to the weight. So you only wear it for a couple of hours every two days or so.  I forgot yesterday, as it was so comfortable, and wore it all day instead of just a couple of hours.  So now I will give it a rest for a day or two and then add a couple of small weights.  This vest is designed so you can add just a few ounces at a time, and it fits very close to the body so you are not aware of any "dragging" such as I experienced when I started out by lugging a five pound ankle weight around in a backpack!  Certainly at this time of year it is comfortable to wear, I wonder what it will be like in the heat of next summer?  I expect to be using this vest and possible future replacements, should I live long enough, for the rest of my life.

That really sounds good!  Yes, I'd wondered about tins of food in a backpack too LOL!

Hi Chris!  I remember you telling us about your experience. Again awful,  but like you know, a patient has a right to be told  (if not to see) the results of any investigation AND in this case to have any test  results explained clearly BEFORE ANY medication is advised or started.  . . .  By the way Chris, if you only have osteopenia, I would exercise because if's good for you anyway, but I wouldn't be over- worried about it. 

Good to hear from you,  Kind regards, J

Thanks Juno - yes it seems ages since we talked.  You are SO right - people have the RIGHT to have their condition explained WITH test results! 

I'm just doing the best I can to keep as healthy as possible, and feel good for it, I must admit:-)))  A stone in weight dropped off with the exercise so ready for a few extra Christmas treats now:-))))  I hope it's going well with you too!

 

Chris, when I was working in the hospital about 6 of us used to go on a diet for 6 weeks leading up to Christmas week, and then, having MADE SPACE for the extra goodies, would  eat everything we wanted up until Jan. 2nd.  . . .  What was surprising was that we didn't actually put on that much weight over the 3-week period!   Enjoy the indulgence!!   J

Juno, I need some feedback on Evista. What do you know about this particular drug? Is it effective in your opinion?

Hi Kathleen, I'm guessing that you may know more about Evista than myself !  But, from a quick look at the literature just now, a number of details seem relevant: 

It's a hormonal treatment for prevention and treatment of OP. It treats OP by making the bones stronger and therefore less likely to break. 

It has a low number-to-treat ratio (ie. the number to treat to avoid one fracture)  -  28 - 31 for Evista. Compare this with Fosamax which has a number- to- treat 15-64.  and Actonel which is 8-26.

Cautions :

Can't be used if you have( or your family) have suffered from blood clots in lung, eyes or deep leg vein.

Can't be used if you have coronary heart disease or irregular heart rhythm or a major or minor stroke.

Can't be used if you have kidney or liver problems. 

That's a very brief overview - hope it helps . . . .   J

I got more info about wearing the vest for bone strengthening as opposed to muscle building, and in fact one builds up wearing a certain weight for longer periods of time, every day, and then gradually add small amounts of weight, again building up the amount of time worn as each addition is made to the total weight.

Thank you Juno.

Yes, I probably have gone into it a little more.

It is not a biphosphonate which is a plus!

It is helpful in preventing breast cancer in older women!

Heart and stroke are big side effects.

I would not have a fear of swallowing it as I do with the fosamax!

It is an option if I get to the point I have no choice but to take something.

My GP said if the X-rays of my back had highlighted my bones then I must reconsider my opposition to the Meds. They did not whilst pointing out multiple issues with my back.

According to the Patient medicine page Evista (Raloxifene) is "A non-hormonal selective oestrogen receptor modulator" which mimics the effect of estrogen, usually only prescribed to someone who has already had a fracture in the spine.

I read that and it worried me - as someone who has had endometrial cancer (last year), I stay well clear of anything that mentions 'effect of estrogen but I must admit I'm not quite clear on this - whether it would be similar to phytoestrogens or wouldn't be a danger because they don't  increase estrogen.

My gut feeling is to avoid medications when there are effective non-medical treatments.  So, for example, I have to take prednisone for PMR, there is no other treatment, and a closely related disease (GCA) can cause sudden and permanent blindness.  Of course one of the side effects is bone thinning.  But there is alternative, effective treatment for osteopenia and osteoporosis, so why risk any of the rather nasy side effects from the medicines currently on offer?  It's a lot more work and I sometimes wonder why I seem to be spending most of my time working on my health (to what purpose she asks) but I would never feel good about taking an OP medication.

I agree with that.  I think we all have to research it, and base our decisions on degree of osteoporosis (or osteopenia) and what we feel risks are.  Doctors won't tell us about the risks, so it's up to us to find out.

Exactly.  But some people have better access to education than others and really it SHOULD be up to the medical experts to be aware of the best and safest treatments.  My GP was quite laid back about my initial refusal of OP medication.  When I went back for another visit she had just been to a workshop largely to do with osteoporosis and she was much more convinced that I should be taking the meds, so much so that when I continued to say no she cancelled a request for me to be referred to the OP specialist in our area, saying there wouldn't be much point.  I think I can guess who had major influence on the content of that workshop and it wasn't the proponents of exercise, nutrition and weight-bearing!

I am determined to show her. come my next scan next September, that I was right (in spite of the deleterious effects of prednisone).  Wish me luck! 

Hi, I stand corrected!  ( I only had a gallop through a few studies...)  Thanks. J

I agree - we're seeing so much pressure from drug companies and there are people on the NICE committees who have a vested interest in many cases.  I don't feel this is good.

Hi Kathleen, re. the Xray of your back and the GP saying " if it highlighted my bones then I must reconsider my opposition to the bone meds. The Xrays did not . . " . Do you mean the X  ray did not show up bone loss??  If that's what you mean, I don't think any X ray would show up low bone density - only a Dexa scan would do so. Maybe I've picked you up wrong. . 

Regards, J

I certainly do wish you luck and hope your scan results show others on here that better bone density can be achieved by exercise, diet and weight bearing, especially after we've seen someone post who has been 'taking the meds' for 7 years and got a lower bone density for it!

In 2008 the journal of clinical oncology published a study indicating that raloxifene had significantly lower odds of endometrial cancer compared with both tamoxifen users and SERM nonusers (I quoted).  That is seven years ago, wonder how the research and clinical evidence is panning out?

Hi Chris, I'm fine really. Plodding along, taking the meds., walking for 30 mins. (Mon. to Fri.) & raking a lot of leaves . . .. Big storm passing over us at the minute with howling winds.  . . Take care you.  J

I think we'll be doing the same going by the gale outside now:-)))  You take care too:-))))

Mmm - lower odds wouldn't persuade me to use it!

Well, I wouldn't take raloxifene either.  I am feeling cranky just now.  While I was out our local health authority phoned and left a message offering me a mammogram.  Hell, I don't even want to know if I have any other health problems.  And why weren't they after me a long time ago?  Like twenty years ago maybe?

Oh, I hope all is well Anhaga.  I had a mammogram a short while back, but was grateful to have it after being overdosed with estrogen for 16 months and getting endometrial cancer!  It was good to have the mammogram and get that out of the way:-)

Anhaga, I know exactly how you feel. A few months ago my 2-yearly bone scan was due. Then came a reminder for a breast scan, and then a few days later a bowel scan 'invitation' (new program just started, it's a home test - don't go there!). Did the bone scan anyway. Looking forward to the brain scan reminder, my  annual syphylls scan, and the new ground-breaking do-it-yourself heart bypass kit.  Ha Ha.   Cheer up, great things ahead!!!   J

We've had that bowel cancer thing for while now.  In fact I was talking to an acquaintance while I was out, and it seems that the health establishment is really keen on screening for cancer, there are foundations that promote information about cardiovascular or lung health, but nothing at all about our skeletons, on which everything else hangs.  I'd obviously be a lot better off if I'd known earlier about the condition of my bones.  Sigh.

I do understand the difference between X-ray and bone density scan. I had X-rays and ct scans and no mention was made of the bones.

Both my GP and myself believed something would have been mentioned if they picked up frail bones.

The concerns seem to have been with discs, mild scoliosis and narrowing through the centre.

So the X-rays and ct scans should have mentioned bones if something had been very prominent.

I am profoundly leery of the osteoporosis meds, as well as deeply suspicious as to their touted benefits. That said, I've seen no convincing evidence, in the several years that I've been following this medical issue due to my own diagnosis of OP, that would lead me to believe there's any effective alternative treatment for osteoporosis ... no more than there's any effective measure to reverse other types of physical deterioration that tend to accompany the aging process. This vacuum of effective alternatives is what's at the heart of the angst around this issue.

Though exercise, diet, Tai Chi, etc., may make a marginal difference, or at very least, make those who practice them feel better, this is not the equivalent of an effective treatment for OP. Hopefully, safer alternatives than now exist and that may have some effectiveness will emerge in our lifetimes. However, as with other major health threats and diseases, e.g., many types of cancer, progress may not be in the cards. I can't speak for U.K. or other countries, but the U.S. places a relatively low priority on health-related research when it comes to funding. Hence the burgeoning popularity of patients and their supporters undertaking "walks," "ice-bucket challenges," and other physical feats in an attempt to raise funds, which wouldn't be necessary if resources were allotted accordingly.

 

Allison, you may be right, but as bone is living tissue I can't think that it hurts to do all we can to keep that living tissue healthy.  It's just that bone is slow, we won't see any results for months (and as we can only check the bones through a scan, once a year if we are lucky).  I would be interested to know what you have been doing, as it sounds as though you have known of your condition for a while, and what do you find makes you feel better?  I'm looking for all the ideas I can get!  I have two friends who in recent years were both diagnosed with osteoporosis.  Both of them through exercise and diet moved themselves into the osteopenia category.  One of them continues her self care, the other has slacked off.  Guess whose bones continue to improve, and who has slipped back into the osteoporosis range?