Swollen esophagus/throat

I meant with strontium ranelate, the body rejects the strontium in favour of calcium, which is used in body processes besides bone building.

You can take them the same day, just not at the same time.

Right.  I was taking prednisone at the same time as one of my calcium doses for several months before I found out that this meant I was not getting the full benefit of either!  So I tend to tell eeople when there is a disagreement between medications/supplements in case they too have not been informed.  I really think my doctor should have told me....

Apparently meds like alendronic acid once they are in the bones are there indefinitely - so far evidence has shown them still present for more than ten years.  I am fortunate to still be "only" osteopenic although in high risk category for fracture, so it is relatively straightforward for me to reject the drugs and choose the more natural path.  Only time will tell if it is enough.

Anhaga, I am not sure that you are high risk if you under -2,5. 

I am suspecting it is about falling more than about a number anyway!

Kathleen, does a score of -2.86 make it high risk for fractures. I was diagnosed with osteoporosis last August ..was precrbied zolendronic acid through IV (once a year only needed....as couldnt take oral meds due to my GERD and Barretts oesophagus)..I decided not go with the iv...started calcium with Vit d3, K2, however I noticed that over a space of a month i started to get ingrown toenails (i go for pedicure once a month) and my fingernails grew like mad and rock hard. as soon as I stopped the calcium tabs within a couple of weeks my finger nails started to get soft and break off....the toe nails also improved...was this my imagination? (nothing else in diet had changed) ..I have now increased cheese intake and continue excercising...and will go back for another scan in august to c if score has improved.

My sister has that result and she takes AA on her doctor's instruction as she did no research and just accepted the doctor's advice. I would not even consider it with that result. Mine is a lot worse but I could not bring myself to take the Meds. 

It is a personal choice of course but I cannot understand people taking the drugs without any hesitation or research.

If mine continues to deteriorate I may have to rethink my decision.

I recently had X-rays of my spine and my GP told me if anything was said about the condition of the bones I must reconsider my reluctance to take the drugs.

No comment was made about the bones being frail so I am still keeping away from AA and the rest of the drugs.

I do have other issues with discs and nerves going out to the side which make life difficult.

Remember I am also not a doctor and just someone who reads and analyses the information and makes a decision for me.

I do believe everyone should look into the safety of the drugs before going ahead with taking them.

Interesting about the nails, Shaq.  You do know, don't you, that the best dietary source of calcium for humans is not dairy but rather leafy greens?  I don't know why that is.  But there you go.  Iron is a different story; we absorb iron better from animal sources than plant sources.  So it's all about balance.  

Unless you eat a massive amount of greens dairy is still the best source. One yoghurt, one piece of cheese, a glass of milk plus one more is needed at our age or a calcium supplement to make up the rest or substitute if dairy intolerant.

Tinned fish with the bones eaten is quite good too but not many people would have that every day.

It's all about bioavailability. 

Kathleen, I've been put into high risk category because I had a broken leg two years ago (slipped on ice - most common injury in winter Canada!  So I question it was really a "fragility" fracture as the tibeal plateau snapped when my knee twisted sideways, but still...) and I am on prednisone for polymyalgia which automatically puts me into a higher risk category than if I weren't.

You are so right about prescriptions. after I was diagnosed with suspected Sjogrens. I was sent to the ENT (2 arrange a lip biopsy) I mentioned about frequent headaches around the left temple and left eye discomfort . he prescribed amitriptyline (had never heard of it) .Read the blurb in the packet and the 1st caution is : May make you suicidal !!!!!! and he had prescribed for 6 months. So i just dumped the packet in the bin and didnt bother with getting rest of precription. 

I have just discovered coconut milk with added calcium and it is delicious so that will be added to my 'calcium foods'

​It would make a lovely 'healthy' pina colada

This medication was originally used for depression. Others are more benificial, but it is sometimes used for nerve pain and to prevent migraine. Keep everything in proportion. Everything has side effects, even the common carrot, if you eat enough of them!!!

And, be 1 towards you 5 a day, with the pineapple. I have always said banana splits and chocolate rasins were healthy. But seriously, sounds like a good idea, until someone mentions fat content, or other such spokes in the works.

Yeah...fat is supposed to be bad for you but coconut is actually deemed to be a healthy fat..anyway i eat whatever i fancy at the time ....but in moderation...

Me too. I am luck because I dont actually like a lot of unhealthy foods. Chocolate is my downfall. So moderate that. Otherwise, I enjoy food, but I eat to live.

Ok Amhaga. I am supposed to be high risk because the bottom of my spine is -4.3 but I have not broken a bone. 

I am hoping it stays that way too.

I think we are in charge of what we take and even responsible for knowing the risks and weighing them and being thoroughly informed about them.

Just read recently that people who eat some dark chocolate everyday tend to to have lower BMI than those who avoid chocolate completely (all things being equal) . I am not a lover of dark choc but recently have found some with blackcurrant (same makers who produce it with chill or orange or cranberries )  and it tastes more of blackcurrants than 'dark' choc.

   Haven't tried that one. Sounds nice. My husband eats dark chocolate every day but neither of us have weight issues. 37th wedding anniversary next week and we can both still get into our clothes from that day. He came of his bike and smashed down on his hip. He could not save himself as he hit black ice. Nothing broken. We eat the same diet, live the same life style,only gender is different.

that is awesome in every sense of the word

"I think we are in charge of what we take and even responsible for knowing the risks and weighing them and being thoroughly informed about them."  My issue is that sometimes we are so ill-informed we don't know that we need to learn more.  Take me for example.  At about the age of 35 I learned for the first time that our bones get more fragile, starting about then.  Until then I had not known there was even a question to be asked about bones.  So I started taking calcium supplements, doing research so that I ended up taking what I believed was the best supplement.  Later I learned about Vitamin D but when I asked my doctor about having a D test he basically laughed at me.  Then he said he'd send me for one if I wanted.  But I replied there wasn't much point if he didn't know what to do with the results.  That was around the time Vitamin D became popular in the media, so a while ago.  I also was happy that I had a lot of weight-bearing physical activity at work during menopause and the years after.  I upped my calcium intake, somewhat later my Vitamin D, after starting prednisone.  It was not until a diagnosis of low bone mass last fall (and being threatened with another dangerous medicine to accompany pred) that I understood that I didn't know nearly enough about bones and launched myself into a full scale research project.  It simply isn't good enough to expect people to know what they don't know.  I'm well educated, I always ask questions and try to do the best for my own and my family's health, and yet in my late sixties I find that my knowledge about the very frame on which the rest of my body hangs is utterly abysmal.

I am looking at studies an American Dr has been involved in and it is proving to be very intresting. For example, he says that a worse score does not always indicate you are more at risk of fractures. Also, balance and core strength is even more important that weight bearing exercise. I am writing this to you hecause your score is worse than mine, but I have had 2 breaks. Also because your main exercise is in the pool. All very  contraversy, I know, but I am keeping an open mind. When I know more, I will certainly open a new discussion for our group.

Yes the balance and strengthening muscles thing is very important.  I am on a waiting list here for people at fracture risk where they give you exercises, etc, (as well as push the OP drugs I fear).  As it's going to be at least six months from time of diagnosis before I get to a session I've proactively added more exercises to my usual regimen, plus am learning tai chi and plan to sign up for Nordic walking when the weather gets more reliably good.  I don't think any one of these strategies, including supplements and good diet, is enough - we need them all.

oooh that's very interesting. Despite a T score of -4.9 in my spine I still do the plank and push ups (under the guidance of a personal trainer) so I will await your research notes with interest. 

Shaq - Next time (heaven forbid there be a next time), return the unused pills to the pharmacy for safe disposal!

Wil let you know. Away from home at this time, so I dont want to go into too much detail until I fully understand his findings

Your time spent researching and your conclusion is much appreciated - thank you.

Hi Shaq, Doctors now treat patients a bit differently (or they should). It used to be that if you had a certain T-score, you were typically handed out bisphosphonates and kept on them sometimes for decades. Over- treatment. The more recent thinking is different. A T-score may DIAGNOSE OSTEOPOROSIS  but how, or if, you are treated should depend on your RISK OF FRACTURE. This can be easily quantified using the FRAX assesment tool. It takes a number of other risk factors into consideration and gives a  percentage risk of you (if untreated) having a fracture in the next 10- years.  J

Now with the Internet it is different. You can look up why you need to take vitamin D for example. It is the Internet that has made all the difference. Even if you had questions or doubts before it was hard to get the information. 

When I go to the doctor now I tell her things I have discovered and I comment on blood results.

It is a different world from when we were 30 or 40!

Excellent that you are keeping an open mind and researching so effectively. I will be interested to know your discoveries.

I keep reading and researching too. 

Internet, you are amazing!

What would be good is a study that included people like us who are more informed than people who have taken the drugs without knowledge or understanding.

The study should happen over an extended period because there are still too many questions.

Can a path of no drugs be possible if one does everything in  their power to protect and improve their bone density?

I am an expat livig in the Middle East so the chemist would just laugh at me and tell me to take int home and bin them myself

I was told my scan was -2.86 with 'high probibilaty of fracture' . I was sceptical as I had fallen a few months previously and banged my hips > back >arms> head on a concrete floor covered by a parquet laminate..I didnt break a bone (had a CT scan) so when the rheumy precribed zolendronic acid I didnt bother as living here has made me sceptical of diagnosis (rightly or wrongly) and research on the med prescribed it had too many side effects

Lucky you did not start the Meds without some thought! That is not a high risk, maybe medium at the most!

Unfortunately my doctor doesnt seem to listen when i mention vit k2 and would it be possible to get my t score into the oesteopenia range by diet and exercise and vitamins :-(

Kathleen, true enough.  But why do you know you can look up Vitamin D?  What alerts you to the fact that it is an important thing to know about?  If there hadn't been a bit of a media buzz a few years ago, consequently major consciousness-raising amongst the general population, you might still think that you don't need to know more than that you should get 400 IU Vitamin D per day.  And yet thanks to the news we know that's not enough.  What else is out there that I have never heard about but I need to know? I can't look it up on the Internet if I don't know it exists!

Hi Shaq, I think it depends on WHY the doc. thought you had a 'high probability of fracture' and therefore may need treatment. Did he not tell you?  Have you a family history of OP? Are you taking ongoing meds. (Eg. Steroids or PPIs, cancer meds.) which can afftect bone? Have you already fractured? Are you very old? (!) and of very small frame, and underweight? Are you coeliac? There's other risk factors I just can't remember.

Finally, did your doc. do a FRAX assessment? If not, you can do it yourself by Googling it and putting in your own data - by answering about 10 questions and then it tells you your risk of osteoporotic fracture in the next 10 years. If it's greater than 3% for hip fracture (which I think is a very low figure) the advice is to 'treat'.  . . . . 

Zoledronic acid is a strong medication and not usually the one to start with but, need I say,  I'm not your doctor.

 PS. I think it's great that you had such a tough fall and your bones were strong enough to take it. Bone strength has to be distinguished from T-score, although the latter is NOT to be disregarded.

Kind regards,  J

Oh well....

Kathleen,  I agree.  If only studies weren't so expensive.  They are nearly always done by the pharmaceutical companies and of course they have a vested interested in having more and mopre people take the medicines.

My specialist prescribed vitamin D before all the hype. I suspect something in the environment is now lacking or added like pesticides on our foods.

The Internet is great because we can follow up our blood results for example. I get a copy of mine and my GP does a lot of tests and the specialist adds a lot too. I go through all the markers and research.

We also are learning from each other. Here is a great example and then we follow up on that.

Debates on gluten, dairy, fats, etc can be researched and argued after individual research.

If we have a symptom we can research that.

Yes, we do not know what we do not know, but we are learning, and our descendants are going to know a lot more.

Sunscreen and fear of UV and skin cancer = Vitamin D deficiency

Totally agree. Have worried for years about malignant melanoma. Always used factor 50. Look 30, with bones of a 90 year old.

I'm sorry, I had to laugh when I read your comment!.  Funny because it is true - but tragic too.

Hi Juno, The rhuematologist just looked the scan and read the diagnosis line : 'high probabilty of fracture' ​, when I queried that he didnt really know the answer. i will definintely do the FRAX assesment but doesnt it need all the different scores (spine, hips etc) ? all i have is that my score is -2.86.

My sister has OP (early menopause and no HRT or other meds presribed)

​I havent had any fractures. I am 64 yrs old and excericise about 5 times a week (most weeks) I am dont have a small frame and not underweight or a coeliac ..however at the time I was precribed the ZA, I was on PPIs  at the time (for GERD and Barretts Esophagus) but have been taken off them, and the rheum had also put me on predisolone (swollen painful elbow, knucles and wrists due to Sjogren's ) so i suppose he was justified in precribing ZA...but I think that was mainly due to to the prognosis on the dexa report. 

My fracture risk is deemed high, with a risk of fracture greater than 20% within ten years.  Which means I have a "risk" close to 80% that I will NOT have a fracture within ten years.  Risk assessment also acknowledges that this risk can be ameliorated by various therapies including exercise, vitamin D and/or OP meds.

Hi Shaq, A few points:  First it's good that you've had no fractures. Aim to keep it that way. Based on your T-score, that's probably why your doc. wanted to prescribe some bone med. and, because of your stomach problems, the one he picked was ZA because it's method of administration (infusion) obviously bypasses the stomach. It's a very strong medication and you should discuss side-effects with him. . . And maybe get a second opinion also.

Your past history of taking PPIs for the same stomach problems are a cause of bone loss in many patients but would depend on how long you've been using them. Some doctors recommend taking Ranitidine (Nexium) instead.  Long term use of Prednisone (>5.0mg. for over 3 months) can also cause bone loss, although people have no problems here. . .

When trying out the FRAX assesment of risk, it only asks for one T-score. . 

Finally, I left out one other lifestyle risk factor for OP (in fact this one appled to myself!) - dietary issues. I am vegetarian and, looking back with wisdom, I had a woeful diet with FAR too little protein and calcium.  .. . . .

Kind regards, J

PS. I'm also 64!!

 

 

Anhaga, " risk of 20% for fracture means that I have 80% risk of NOT having a fracture" . . 

True, but you could turn this on it's head and also say - " risk of ONJ when taking a BP  is 1 in 10,000 so I have 9, 999 chances of NOT having a problem at all - and it could well protect me from fractures"  . . .  

Just sayin'    J

Juno, ranitidine isn't Nexium; Nexium is also a PPI. Ranitidine is Zantac, a different class of meds known as H2 blockers. They aren't as powerful as PPIs, so it's thought they may not be as harmful -- "may not" being the operative phrase here, since their mechanism of action is similar to that of PPIs in that they reduce or eliminate stomach acid. It's the elimination of acid that is thought to set the stage for a host of ills, including C. difficile colitis. How they might contribute to osteoporosis is somewhat unclear, though the accumulating data pointing to that result are very troubling. I think it'll be awhile before the relative safety (or lack of same) for H2 blockers is better documented. One strategy is to take H2 blockers or (if they're insufficient) PPIs only as needed and not on schedule, routinely; my GI dr has said they might still be effective if taken in that way, and I've read in a number of places that medical opinion is shifting toward as-needed use. That said, I found PPIs to be nearly impossible to stop taking, as the immediate effect of cessation is rebound acid reflux. So I'd be very hesitant to take PPIs again, ever, even just as needed.

Re: T scores that would be used for a FRAX assessment, the medical folks I've talked with have said that one must use their worst T score, between hip and spine, to get an accurate result, not their best score, which is what one might tend to gravitate toward doing.

Sorry to be contentious, but each time I see ONJ or atypical femoral fracture being cited as extremely rare, either using that exact phrase or in numbers, as you're providing, I feel compelled to jump in and offer the view that it is likely these catastrophic effects are being UNDER-reported. Why do I say that? First, the data continue to accumulate as follow-up on the hundreds of thousands of people who were routinely given these drugs for decades, not only for osteoporosis but also (it turns out inappropriately) for osteopenia, continues over a longer,and therefore more meaningful time-period. Second, if the risk is truly that low, it seems unlikely that FDA in the U.S. would have recently issued guidance suggesting that doctors reevaluate the use of the meds past a few years in patients who are taking them. FDA also admits that the optimal period over which the meds can be administered both safely and beneficially is unknown. Third, if the figures are truly so low, why are the online forums riddled with accounts of patients who incurred one or the other of these problems? Unless one suspects that the accounts are fictional (which I highly doubt), it defies credibility that one would come across a SINGLE account of ONJ or atypical fracture if the risk was so astronomically low.

True enough.  Although I don't actually believe the ONJ statistic.  The fracture risk stat is also suspect, and they admit it, as it does not take into account any mitigating behaviours (like taking Vitamin D).  Says so right on my report!

My wording "between hip and spine" seems potentially confusing on second reading. What I meant is "whether in the hip or spine."

I have mentioned a few times that it would be interesting to hear from someone who has experienced ONJ or atypical fracture. So far, no one has responded. I obviously read the same websites as Juno. Also, my understanding is that these drugs should only be given for 3/5 years and a further scan should be done to assess any progress. I will be delighted if, like Juno, my density increases by 11%. It appears to be that, where we live, plays a huge part in how long we are advised to take the meds and also, how we are monitored. 

Sorry sorry, I don't know WHY I had Nexium on my mind (maybe it's because my husband takes it) I MEANT ZANTAC!!  (brand name). Again mea culpa. 

I also know my oral surgeon operates here in Australia and also volunteers overseas on people with ONJ. I have no figures or numbers but I got the impression that 'rare' was certainly not the case.

i think that's a good way of looking of things ..half empty/half full..and i would do that also 

I was on 10 mg of prednisone for over 3 months..and like yourself I am mainly vegetarian and have been all my life...i only choose chicken/beef in a restaurant when i dont have a tasty veggie option and I dont like cheese , though in the last few months (after diagnosis) i have started to eat cheese (cheese with  cummin or jalapenos) . I will do the FRAX asessment and find out the risk factor..

​i will be 64 tomorrow ...missed Feb 29 birth by about 5 hrs....

Today must be the Big Day then, so  HAPPY BIRTHDAY  from all of us here!!!!    May this coming year be the best one ever and may all your bone problems be be resolved ( or, at the very least - properly treated!).

Now go and spoil yourself today.  . . . 

J  

 

Thank you Juno ..it's been good so far..huge bouquet of flowers from hubby waiting for me in the kitchen at 5 a.m and then cakes waiting on my desk at work..and family coming round this evening for a glass of bubbly.

​BTW  I did the FRAXA and my chances of getting OP r neglible...1 score was < 4%="" (="" ithink="" the="" overall="" fracture="" chance)="" and="" the="" other="" was="">< 9% (i think that was the spine/hip fracture chance) so my decision not to take the za infusion was the correct 1...i will go and re test sometime this year just to make sure i am on the right track. 9%="" (i="" think="" that="" was="" the="" spine/hip="" fracture="" chance)="" so="" my="" decision="" not="" to="" take="" the="" za="" infusion="" was="" the="" correct="" 1...i="" will="" go="" and="" re="" test="" sometime="" this="" year="" just="" to="" make="" sure="" i="" am="" on="" the="" right="">

Shaq, print off this result and bring it with you  when you next see your doc.  That's a very good result (my risk of fracture was somewhere more than 25%)  but you're right to  get a another dexa scan in 18 months or so just to keep an eye on it. . . . 

Delighted you had a great day, mine was in mid. Feb. (also 64) my husband was a pet but my son didn't even send a card, was upset at this).

Kind thoughts,  J

I'll definitely take the result in at my next consultation . Thanks Juno.

​I have 2 daughters (and son in laws ) who are all exceptionally kind thoughtful people. I am truly blessed .

​Maybe your son has his own issues going and forgot the date. Next yr is our semi big 1 (65) and i am sure he will make up for this yr's forgetfullness.