Osteoporosis/alendronic acid

Do you take Fosamax or similar or just use vitamins and mineral supplements?

Thanks for this Carol!  Yes, I did check on the recommended daily amount of K2 and it pretty much said that three slices of Gouda cheese covered it, but it's also in the Immunase that I take, and I checked on the Magnesium i take too, but you're so right that we need to keep an eye on all this.  You've got me wondereing if I should take magnesium supplements as well - I think I'll check it all out again!  Thank you!

I take mega calcium and it had magnesium in it.

Hello Kathleen, I was diagnosed 18 years ago with borderline spinal OP, refused to take meds for 4 years, BD went down to T score -2.8, then about 7 years ago was lucky enough to be offered a place on Guys 6 month research programme into Forsteo (normally only offered to those with severe OP and fractures who don't respond to any other treatment) Responded well to this anabolic treatment and T score zoomed up to -1.8. I was then put on Fosamax and stayed on this med for 4.5 years. No side effects but sadly in spite of or because of (just don't know!) I lost all those density gains I had achieved between 2013 and 2015.!! Very upsetting! ! Hospital wanted me to go on zolendronic acid - too scared to do that with the ONJ and atypical femur fracture cautions. My dentist told me that it was possible that I would need four extraction's over the next few years and would be very reluctant to operate if I was on zolendronic acid. The hospital suggested that I had these teeth extracted prior to zolendronic infusion to be on the safe side!!! Far too drastic!!!! So I refused this med and this was what kickstartedd my research into what felt right for me. ie. Nutrition, exercise, supplements and possible alternative OP medications. Fortunately, my GP, whilst not knowing much about OP, is willing to listen and encouraging and have had regular blood tests which have been very useful in showing up any inadequacies in my system. I was prescribed Strontium Ranelate for a short time but found the procedure of taking at least 2 hours away from any calcium too awkward. I am now taking Evista but not every day as prescribed as I am a bit worried about the blood clot aspect.

Sorry to be so long winded. By the way, I found the NOS helpline very helpful when looking into the various medications available.

Carol, thank you - I checked on the magnesium and have ordered a magnesium citrate supplement today!

Hi Carol, a T score of -2.8, while diagnosed as OP, is not especially worrying. OP is diagnnosed as a score of > -2.5 - so you're just outside of that. My rheumatologist distinguuished between bone strength and bone density. If this is the case, strengthened bone is less likely to break regardless of T-scores. And avoiding fracturing is what it's all about really. AND avoiding falls - no falls, no fractures. I took Forteo also for one year, and am now taking Actonel for a few years. No big problems with either. Am having a dexa scan shortly to check on progress . .. Kind regards, J

Juno, HOW did your doctor distinguish between bone strength and bone density?

When I was going on about ' bone density' this is what she said. Seeing her next month and I'll ask again.  . . . J

 

Thanks Juno - I'll be interested to know.

That has just reminded me Carol - is it normal to have a calcium test when told you have osteoporosis?

Hi Juno - yes I realise that bone density is only one indicator for bone strength but unfortunately it's all we have and I'm nervous about my next scan In October (I get them yearly) having such losses last year. Re your comment - no falls no fractures. Sadly, not necessarily the case . People with very fragile spines have been known to fracture through coughing or sneezing! Ghastly!! I wish you the very best of luck for your coming scan.

All the best

Carol

Hi Chris, not sure that I had a calcium test when I was first diagnosed but I now request comprehensive blood tests twice a year which include calcium, Vit D, and I also ask for thyroid and parathyroid to rule out any possible secondary cause for OP.

All the best

Carol

Hi Does anyone know how you discover how strong your bones are in relation to having osteoporosis? my second fracture was a result of lifting something too heavy. This was before I was diagnosed and I was alway lifting the heavy stuff as my husband has a sore back!! A friend fractured 2 vertebrae when a wave hit her. But we need to live our lives and not wrap ourselve in cotton wool. 

Phew, that's a bit shocking that bones can break so easily!  It was something Juno said about the difference between weak bones and bones not so dense, that made me wonder.

Yes me too. I build up muscles easily and I am vegetarian. I get most of my protien from cheese and such like. I would have thought I would have strong bones, with all the exercise, and have more of a problem, building muscle.

I'm missing some posts somehow (finding some in junk and some in inbox, varying from the same person - my computer!) but hope you BOTH get on well at your next scans!  That's alarming about the fractures from coughing or sneezing.  I do know a neighbour with a lung problem who has fractured ribs through coughing - nasty!

They are happy to do this on the NHS?  When I asked I got shown the door.

I struggle to build up muscle!  I was on statins for some time, getting weaker and weaker, thinking it was a thyroid problem (was already on levothyroxene) and by the time I got sent anywhere I could barely walk without the help of my husband and getting up from the sofa took everything I had, and I was only about 50.  They took me straight off statins but I never regained the muscle strength.

Hi Chris, as far as I'm aware, fractures from coughing, sneezing etc. (called' fragility fractures') have always been known to  happen on occasions -  esp. in elderly people with or without (known) osteoporosis. Very occasionally in younger people. . . . J

It sounds nasty Juno.  May be of interest to folks - just been looking up the effect of oxates etc. on calcium and stuff like spinach, cashews, almonds, green beans, etc. that I thought were all healthy are actually blocking absorption of calcium.  Also read up on Fibogel and macrogel, used for constipation and wonder if they have an effect too, but decided since I have to take them, it may be better to not take them at the same time as any calcium supplement? Oh my brian hurts LOL!

Chris, I've just lost a long rambling reply (perhaps just as well!) so I'll keep this one brief!  Yes, I'm lucky with my GP and he puts me forward for blood tests (sometimes without me asking) and is willing to consider OP medications other than fosamax even though they are more expensive.  Expense, I feel, can be a key word when looking at what GPs are willing to prescribe.  Fosamax seems to be the first choice but it is also THE CHEAPEST med and I think this fact is significant.

Re:CALCIUM ABSORPTION : are oxates and phytates a similar substance.  I have heard that the phytates in nuts/beans/grains can inhibit calcium absorption.  I know of someone who will only have nuts (for their good protein)as a snack and well away from calcium meals! 

Something else to think about!!!!!

all the best to you all

Carol

Carol, yes, oxates and phytates are similar (different, but have a similar effect) but the more I looked into it the worse it got so you shouldn't eat apple along with cheese (which I do every day thinking it was healthy!) and there are so many things to avoid eating together that a meal time would last all day, especially if you can't absorb the full daily calcium in one meal and supplements have to be spread apart too.  Then the laxatives I take can stop some absorption so that has to be a couple of hours apart from calcium and so it goes on.  I'd done a meal of turkey mince in a tomato, onion, garlic and mushroom sauce, with cheese on top, and using spiralised sweet potato instead of pasta, but sweet potato stops some of the absorption of calcium in the cheese!  So while I'm taking a bit of notice of it all, there is a limit to it if you try to eat a balanced meal, I've found.  It's no good just concentrating on the calcium at the expense of fibre and iron and other stuff in fruit and veg.  I've been having strawberries and yoghurt every evening but strawberries stop the calcium in yoghurt being absorbed!  No hope LOL!

I have decided finally on whether to take or not take fosamax. My final decision is not to but take every possible natural source of help for my bones. I have ordered magnesium. I have made home made jelly using gelatin. I am looking at foods with vitamin k in them. Keeping up my dairy and calcium and vitamin D. I will have fish at least twice a week. 

I have been researching fosamax and there have been many class and individual actions brought in America. 

People have had broken femurs. So, while fosamax helps the back, you could break your femur and need rods.

Knowing my luck I would,not escape!

researching bone food now!

I'm still spending hours researching all this Kathleen LOL!  I'm taking magnesium, Vit D3, and some calcium but I'm worried about taking calcium without taking extra Vit K2.  I got some K2 Mk7 but then passed that on to my husband when I realised it was soy based, so got some MK4 but the studies show horrendously high amounts are needed to affect bone density which some sources have said would be dangerous to take because of clotting, so I think I'm going to take 100mcg a day and hope for the best.  I felt the Gouda cheese was the safest but was gaining weight on it!  I'm just hoping the combination of it all will be the best I can do.  My husband was in a panic at the amount of MK4 that was used and suggested as a minimum in the studies, so phoned round various places and most said to ask a GP - not going to happen - mine wouldn't be interested, or even know the answer, I'm sure.  But  he has found a national health advice place in a hospital so we're hoping they might phone back with advice when they've researched it.

Just replied but forgot about the broken femurs.  Yes, that was my main concern too especially since they said my spine was normal but it was the femur that was heading towards osteoporosis.  What fish are you having and what are you hoping that might provide.  Talking of that, I read that fish eggs are high in K2, so I'm just wondering about cod roe - think I might look that up!  Thank you for mentioning that!

I am making home made jelly too with gelatin. That way you can use natural juice and add pineapple or similar. I think you can get enough K 2 in your bit of cheese so I am not taking that one in tablet form. Yoghurt is good too. I have ordered magnesium. Tinned fish is another recommended one. Salmon and tuna are named ones. 

Apparently there have been court cases in America brought by people with severe side effects from  Fosamax. Not just a few but many!

Many people take it without doing any research like my sister.

I could  take it to help my back and suffer a broken femur! What would be the good of that?

Here's hoping that these natural remedies work! My gut feeling was to avoid the present medications.

UK is in the second year of testing a new drug.

 

That would be my route too Kathleen.  Hope it works out well for you too:-))))

It isn't that the fish are tinned that makes them potentially useful for bone density but rather their calcium quotient. The top-recommended fish is sardines, but they must contain the bones, which must be consumed, as that is where the benefit resides. The bones are round and crunchy -- easy to chew -- and do not resemble the thin, sharp bones that one needs to avoid when eating other fish. Salmon is also high in calcium. However, tuna is not high-ranking in this regard, which is too bad, as it's the tastiest among the three (in my opinion).

That said, there is some controversy as to whether calcium is actually beneficial in combating osteoporosis and if so to what extent. I believe it is Japan that has high rates of osteoporosis yet consumes very little calcium. In the provocative book "The Myth of Osteoporosis," by Gillian Samson (whose last name I may be misspelling, but if I leave the screen to check I may need to log in all over again!), this controversy is considered.

Ok. I agree with that. It is interesting about the Japanese and their lack of calcium something I did not know! 

Do you have dairy, Allison?

I am going to concentrate on having everything I can that may improve my bone density and then check it again via a bone density check.

I have not been very mobile because of vertigo and some surgeries I have recently had.

I was doing Aqua and will get back to that when I can.

Off to see the grandkids soon so that should get me going lol! They are two and three so they are very young.

 

I think I partially misstated the Japanese situation. It isn't that they have high rates of osteoporosis but rather that they've historically had low rates, despite the absence of dairy in their diets, while one would expect the opposite. And recently their rates have been on the rise, which it's been hypothesized goes along with the growing Westernization of their diets, including a greater prominence of dairy.

I eat both dairy and calcium, the latter in the form of foods fortified with calcium and vitamin D, such as orange juice; sardines and salmon; and cheese. While I've made more of an effort to do so since my osteoporosis diagnosis, I don't expect this will necessarily translate into improved bone density.

Re: your mention of vertigo, which I've had a few times myself (very unpleasant), maintaining balance through targeted exercise is often cited as key to preventing falls, which might result in fracture, with or without an osteoporosis medication. I'm still unsure as to what such exercise should consist of, however. Vertigo would certainly be a risk factor for falling. My instinct, should it (or any other type of dizziness) recur, would be to try and lie down. Have you had any useful advice on what to do when vertigo strikes?

I have heard that fish is a source of Vit K too.  I'm not sure if this is just the eggs in fish, or any fish, or oily fish, but it does mention fish along with fattier meats like chicken thighs and salami etc.

It might be useful - we do Tai Chi for Arthritis by Paul Lam and it's so gentle that you wonder how it can do anything but it's improved our balance and core strength hugely.  I stopped after the hysterectomy (and so did my husband as we do it together) but we both noticed the difference when we got back into it.  I know it sounds strange but it's also helped me with slight weight loss too.  It seems to get the metabolism moving if it's slowed down a lot.

Just another thought - has anyone noticed how the amount of calcium in bottled water varies?

Yes Chris, enormously. I live in Portugal where the tap water is very hard so I always check the content of the bottled water. As a general rule, spring water tends to be lower in calcium than mineral water. I wrote to the society for advice. if you take AA, better swallow with spring water but if you want to boost your calcium with water, I would imagine you would need to drink an awful lot. Almost all bottles do give the amount on the label.

 

We've got a reverse osmosis water filter here that's been going for 32 years, and I'm sure it's reduced the calcium in the water!  So I started buying bottled and checking labels.    The advice on AA actually says not to take it with mineral water and I always wondered why.  Not that I'm taking it now, anyway.  I only took it for 6 weeks and stopped about a month ago.  I am having a minor panic though because I've got a gum infection that isn't responding to antibiotics and the dentist thinks I may even lose the tooth!  Anyone know if it could be due to taking the AA?

My vertigo started very suddenly. I tried to get up to go to the bathroom at 5 a.m. and kept falling back on the bed. My husband had to assist me to the point he could not let go of me. 

It has eased since then but not completely gone. Cutting a long story short I use a wheeled walker for safety reasons and have a few exercises from a physiotherapist. If further trouble I intend to see a neurologist/octologist because I have already seen a neurologist. The latter checked me to rule out anything life threatening and diagnosed BPPV. It could become Menieres as well. It makes me anxious and less confident.

I have had facial surgery recently as well so the year has been slightly traumatic. My gastroenterologist performed a gastroscopy and stretched my esophageas at the bottom as I have been having difficulty swallowing.

 Next year will be better! I have also had some oral surgery this year.

I am 70 years old and probably older than others on here but not sure.

That vertigo happened to me when I took AA Kathleen.  I hope they can sort yours out though.  I really don't know if it would help, but one of the Tai Chi exercises for balance is to put one foot forward just a little and gradually put your weight on it from the other foot, bring it back and then do the same with the other foot.   I wonder if you could do this holding on to the walker.  Not trying to push you into anything but only offer suggestions that might help, I just don't know.  Yes I hope next year is better for you.  My dentist told me last night that he thinks I might lose the tooth where the gum infection isn't responding to antibiotics but to give it a few more days in case the antibiotics are slow kicking in.  I'm still wondering if it's alendronic acid that caused the problem, even though I only took it for 6 weeks?

Thank you Chris. I will try that. I am much better than I was but anything can set it back. My husband and I are about to drive 800 kms to our daughter's place and am expecting that will be a challenge. Hope things get better for you too. We are in this together.

Sounds like an awful ordeal. My first experience with vertigo was following an ear irrigation at the GP's office (by a resident, i.e., junior, physician), which I think was botched. Too much water in the ear canal could have caused it.

I turned 65 two months ago. It would be interesting to know the average age on this site, as osteoporosis tends to be diagnosed in those who are in late middle age or beyond.

Well it was a bit ironic that what they'd given me to 'save me' from breaking a bone gave me such vertigo that I was likely to fall over and possibly break a bone LOL!  Then when I told them they gave it to me under another name.  I'm 65 too (November).

Hi. Im 60 but had my first indication of osteoperosis at 47. Interestingly, AA, started 9 weeks ago, has not made my vertigo worse. During my radiotherapy for the braintumour, the vertigo was awful. It is on my balance nerve so the combination could not be worse. I pratice balance exercises x2 daily and its improving. Keeping your central core toned, helps balance.

Alison I'm so sorry to hear about the brain tumour.  I'm glad the balance exercises helped.  I keep meaning to get my Wii sport thing out because that's got balance exercises on it (you balance on the board to send a bubble down a river).  But just having gone back to the Tai Chi for a week now I can tell the difference.  

Thats great Chris. Tai chi is excellent. It helps you focus too. We just need to keep at it and not give up. Remember too, weight bearing excercises and resistance exercises, also help strengthen bones and muscles.

Yes, you're right Alison.  I stopped when I had the hysterectomy in November but am glad to have started again.  My husband does it with me so it's easier to keep in a routine with it.  We're waiting for an exercise bike to arrive to help with cardio and doing more walking for the weight bearing bit too.  Doing my best LOL!

You certainly are and remember, exercise realeases all these endorphins. The happy hormones. And we can all do with some of them. I loved my bike, but stick to the exercise bike now. Was always falling of the real one. Now I know why!!! My husband now realises I wasnt doing it on purpose ha ha. I wish you lots of luck and enjoy getting fit. We are still in control Chris

Thanks for the encouragement Alison!:-)

I'm still having problems with a gum, despite doses of Metronidazole, and have the threat of the dentist saying the tooth may have to come out but that's got it's own problems (as well as me not wanting to lose it!) after having taken the AA for 6 weeks recently.  I'm upping the dose of the Metronidazole since there is a slight improvement but it's not cleared it completely, and hoping that might do it (managed to get hold of a few tablets from someone).  Does anyone know if it was the AA that was likely to have caused this?  My  gums are all in very good condition - I look after them well so it was out of the blue.  And if he did have to take the tooth out would it be a horrendous risk because of the AA I used?

Hi again. Know a bit about this because I spoke in detail to my dentist, before getting radiotherapy into my head and how it would affect my teeth and also the AA risk. I have an inplant so did not want it working loose. It is still solid. Mouth and teeth problems can result from many factors including minor infections and smoking. (Lack of oxygen in to the gums) in my old days working in hospitals, we used salt a lot. Try using salt disolved in warm water as a mouthwash, x3  daily. It usually works well.

Thanks Alison.  I'm going to do that right now!  I remember that from the old days but had totally forgotten it!  I don't smoke (never have, not once) but I do wonder if my immunity is low since the hysterectomy because I seem to have had a number of issues, including shingles.  Thank yo uso much for the salt idea!!!!

These ops do take time for the body to recover compleatly. I still feel tired after my treatment in December, then my dad went into hospital and we were told on Christmas day he had cancer. Then a coulple of months later I got the osteoperosis diagnosis.  Not a good year for me either, but staying positive and being determined helps and also kick starts the immune system. Everyday, I feel stronger and more positive. Life throws at us different things, but we are luckier than some. It sounds like you have a supportive husband too!!!

Oh so sorry it's been such a tough time for you too Alison.  You are so right and I need to count my blessings that I was under the treatment line for osteoporosis and that my husband is brilliant.  I'd better tell him I've just said that now LOL!

You would be fine for an extraction Chris according to my oral surgeon. You were not on it long enough to jeopardise your jaw.

Kathleen, you have no idea how much this reassurance means.  I've been in a total panic - thank you!

ps - should have mentioned - I've upped the dose of Metronidazole and am also doing the salt water rinsing, so hoping I won't need the extraction!:-)))))

Your on the right track. Keep it up and good luck.

Thanks Alison:-)  I emailed the dentist a picture of the tooth from two days ago and today and he agrees there is an improvement!  So fingers crossed:-)))))

Great news