"Severe Osteoporosis" diagnosis. Now significant improvement.
Posted , 13 users are following.
Four and a half years ago I got this diagnosis (age 62) out of the blue. I had no symptoms, no fractures, and the GP had suggested a Dexa scan. All of a sudden I changed from a person who was really active, (even used to rollerblade!) to one who felt fearful and delicate.
I read about people who fractured turning over in bed, sneezed, or were the recipient of a 'bear hug'. Awful stuff.
I sought out a good Rheumatologist and found one who had trained in Harvard and practiced quite close. After ordering a batch of tests, I attended for a review. She said that no specific cause was found but perhaps my acknowledged pretty 'woeful diet" in the past (I'm vegetarian and my protein intake was really poor) was relevant.
She straight away prescribed Forteo and said there was no other medication that would come close to being as effective as this as my spinal T-score of -4.5 placed me at a very high risk of fracturing. So I consented.
Two years later I finished Forteo and was then prescribed Actonel " to consolidate any gains I had made" and to continue the protection of an anti-fracture medication
I had no troublesome side- effects from either medication.
Last week (four and a half years later, I had a further Dexa scan. My T-score had reduced to -3.7 and I have had no fractures. This represents a significant 17.7% improvement in my bone density. A few weeks ago while clipping the hedge, I stupidly over- reached and toppled off a 5-step ladder on to the grass. Thankfully I was unhurt, nothing broke. . . .
Briefly, what ELSE was I doing to help myself?
*** Exercise - I'm not great on exercise, though I'm pretty active. I walk the dog each day for max. 30 mins. with a lot of stopping and starting for pee breaks!
Once a week I attend an Osteo Pilates class with an OP physio and then for 10 mins. each day I practice 3 or 4 of these exercises at home.
*** Diet - A lot better than in the past, plenty of cheese, milk and yoghurt. Not a lot of 'greens' as I have IBS and they can set it off.
*** Medication - Was on a reducing dose of Prednisone for another condition, now stopped.
Forteo, now stopped, and Actonel continues.
Vitamin D, and calcium supplements if needed.
*** Supplements - Multivitamin only.
The Rheumatologist last week was really pleased with such an improvement and advised me to continue with the Actonel for another 3 years when I have another scan and full review.
My message to others -
My conclusion from all this: MEDICATION WORKS! I truly believe that my own paltry efforts and my Pilates sessions contributed maybe 5% of this improvement, no more.
I completed the FRAX risk of fracture tool and keyed in my scores before starting medication and then the most recent result:
After diagnosis, my risk of 'major osteoporotic fracture' in the next 10 years was 54%( with a T-score of -4.5).
Last week, my 'risk of major fracture' in the next 10 years was 22% (with a T-score of -3.7).
I am well aware that my bones are still in poor shape but I'm confident that I'm doing the very best for my condition and managing pretty well.
Juno
4 likes, 60 replies
maria_94016 Juno-Irl-Dub
Posted
Was given Alendronic Acid took for about one year. Now I have no eyebrows and receding hairline. I wish I had had a scan before taking this medication and been informed that it was not in the same category as Protelos.
Hope this is helpful.
Juno-Irl-Dub maria_94016
Posted
Hi Maria, I have a work colleague (a doctor) who took Protelos, while I was using Forteo. Her OP wasn't as severe as mine but she had a significant family history. She seemed to be doing very well but I don't know what med. she's using now. Obviously, Aledronic Acid is not for you. Have you another plan or have you discussed all this with your doctor? As you're back to normal readings, maybe he/she may be happy for you to work on your own and re-scan in a couple of years . . . J
lynne73895 maria_94016
Posted
I then took Strontium Citrate for a few months until I got prescription Strontium Ranelate ( Protelos) in 2011, which I’ve taken ever since.
I was only allowed one repeat DEXA scan, 2 yrs after starting SR, which showed some improvement. I was then told by my GP that I wouldn’t be allowed anymore scans, with being on SR, so I have no idea what the status of my bones is now.
I still have a small supply of SR left, because I’ve recently been taking it less frequently, to make it last longer. I was fortunate that the pharmacist who managed my repeat prescription, was able to find some boxes at different branches, after it went out of production.
I haven’t seen my GP concerning my OP, for yrs and still have no idea what treatment to go for next. AA is out of the question.
What are you planning on doing?
Best wishes
Anhaga lynne73895
Posted
Couldn't you use the natural form of strontium, strontium citrate? Strontium ranelate was an invented patented form so that someone could make a lot of money. Sorry to be cynical but....
lynne73895 Anhaga
Posted
I’m probably more cynical than you are, be it concerning Pharmaceutical Companies, Supplement Companies and so called experts flogging there pills and cures on the Internet. They are ALL, ONLY interested in parting us from our hard earned pensions.
The only difference between them as I see it, is that Pharm Companies have spent a fortune in both money and time researching/ developing/ testing a new drug under strict guidelines. It can take as long as 10 yrs. Considering that only a percentage of new drugs get to the marketing stage, they therefore charge mega bucks on the ones that do make it, to recoup their losses, stay in business and make a profit for their shareholders.
Supplement Company’s on the other hand by pass all this work on development and safety, saving them, mega bucks, but then they high jack the relevant findings that the Pharm Companies have spent yrs researching. They market something similar that contains some, or a similar active ingredient. They are quite happy to use the information about the benefits (that the Pharmaceutical drug has provided) and really imply their pills have these same benefits, even though they haven’t gone through proper trials.
All these great benefits are usually stated on the label. They get away with it by also stating on the label:
“This statement has not been evaluated by the FDA. This product is not intended to diagnose, treat, cure, or prevent any disease.”
Its really laughable that they then tell folk that their product is ‘natural’ so it must be safe! In my mind some natural products can be far from safe.
Back to Strontium. Most of the Strontium is mined in China as Celestine or strontianite. It then goes through industrial processes to manufacture the various Strontium compounds eg sulphate, carbonate and citrate.
I’m personally wary of any unregulated supplements, especially if their main ingredient comes from the Far East. Especially when the label carries the above FDA warning. Always in a minute font!
At least Pharm Companies would be more likely to remove toxic contaminants like Lead, due to stricter controls in place.
Best wishes
Anhaga lynne73895
Posted
lynne73895 Anhaga
Posted
The overall impression I have is that new supplements made in the U.K. and EU, do have controls in place with regards to allowable content, safe quantity guidelines, accurate packaging and warnings if applicable. The assays values are allowed some degree of flexibility and are the average of a set number of batches.
Once a manufacturer has obtained the go ahead, to make a particular ‘tablet’ its then down to their honesty, to maintain that standard. Should they suddenly change a supplier, to buy cheaper ingredients, therefore potentially altering the assay values, it’s open to question whether they would bother to inform the relevant agency or alter their packaging.
It was mentioned that these Agencies are stretched to the limit, so follow ups are not readily available, unless as a result of a major incident/ complaint resulting from a particular supplement.
So bsically like most things in life, you pay your money and keep your fingers crossed.
Anhaga lynne73895
Posted
It's true even of our food these days. We've been told that if a certain number appears on a vitamin or other supplement bottle then it meets government standards, to avoid those without that certification. I can do no more than trust this although one never knows for sure. But by the same token I don't know what my food has been sprayed with, what elements are present in the soil - does my broccoli really have the amount of calcium in it we are told to expect? Foods can be labelled "non-GMO" but where I live GMO foods do not have to be labelled. The answer really is to eat a varied diet of healthy foods, and trust that our supplements are good quality. Guess it requires some faith!