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Keeping bones healthy and knowing what is best for me?

Posted , 7 users are following.

kathleen65757
kathleen65757

How can I know if I am doing the right thing or I am being influenced by a push by big Pharma or scare mongering which I may even be doing myself?

Everything is open to interpretation or persuasion and I wonder if I will regret not taking my doctor's advice by taking fosamax nearly a year ago now.

How important are the t scores anyway? Isn't it more important not to fall?

My back has issues and that is scary because it is affecting my life.

If I go out, sit for even a little time on hard chairs, my back causes me pain and disables me.

It is very difficult to make a decision on whether to take the drugs or not.

Can natural vitamins and exercise replace the drugs or just help?

That is all I am doing for the present and water exercises not walking or other exercises because of the back.

How far off is the new drug? So many of us are waiting to see if that will be safe and effective.

Our bone health affects our quality of life into our old age.

 

2 likes, 43 replies

43 Replies

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  • Anhaga
    Anhaga kathleen65757

    Posted

    Kathleen, is there an organizstion or medical service near you where you can get proper advice concerning safe exercise for you?  I can look on google and see all sorts of suggestions but as you have back problems you really need to see a specialist, like a well-informed physiotherapist or similar speciality.  To my mind there are a number of things to consider.  Which physical effects are least likely to affect your future quality of life?  I know many people have taken the OP drugs apparently without problems, but unfortunately many have also suffered serious side effects that seem to wipe out the benefits - and the longer the drugs have been used, the longer that list gets and the more people have suffered.  Any regimen you follow, whether drugs or so-called natural, is going to be a lifelong committment.  The thing is, once you take the drugs there is no turning back.  Even if you stop treatment, the medication is in your system for at least ten years, maybe forever.  On the other hand, lacking secure support from a medical professional regarding supplements and exercises it seems almost as risky to go the natural route.  Except that the natural route will do no harm, other than possibly by delaying drug treatment.  I don't know why some people respond really well to the natural route and why some people fail.  Is it a lack of commitment?  Is there a key component missing?  Is it really not enough because there is some other factor causing the bone thinning which hasn't been identified?

    I've found the summary (all I have) of my bone report and I am apprently at greater than 20% risk of fracture within ten years.  Sound scary.  BUT I am by the same token nearly 80% likely not to have a fracture.  So I take that 80% and I do what I can to make that number bigger and the fracture risk smaller by exercise, diet and supplements, especially calcium, D3, K2.

    I've heard that a vibration plate is an effective tool for building bone strength in those who are for whatever reason unable to walk enough to get a good benefit.  It could be that once you find a way to start to rebuild strength in your back some of your back issues will resolve and you'll be able to start a little walking, or some similar exercise that will help you do even more.  I think if you can find a therapist or some one really knowledgeable to get you started on a safe track towards restoring back health that will make a big difference to you.

    • kathleen65757
      kathleen65757 Anhaga

      Posted

      I have done all those things you mentioned. I am seeing a surgeon soon who may know the cause of the problem I am having with the left lower back. When it catches I cannot do anything and it does not take much to set it off even going to the pool yesterday caused it to spasm or whatever it is it does. Painkillers do not work. The only thing that helps is resting until it subsides which has taken longer lately.

      I have tried a tens unit to no avail.

      I cannot exercise because it reacts and then I am useless again.

      A physio tried to fix it with no luck. It is not an ache, it is acute, and debilitating.

      The idea above was to open up the debate on natural versus drugs and general bone health for people to toss around. 

      My back issue is apart from the general debate. It just controls my ability to deal with bone health as it consumes me.

      Maybe it will just settle like the vertigo I had last year that disappeared after eight months.

      I don't agree with taking the drugs, not yet at least!

    • Anhaga
      Anhaga kathleen65757

      Posted

      Here's a thought.  I've mentioned this in the past so if I'm repeating myslef to you, please forgive me.  I go to a physiotherpist who gives me low intensity laser light therapy.  She also does what is called dry needling, which is a technique by which she puts a needle into the muscles on either side of my spine.  This is supposed to release bad tone, which I guess I am totally unaware of but which has over the years been causing my back to be in a state of perpetual spasm.  The needles are supposed to cause the muscles to reprogram themselves.  I have to say that each time she does it, it seems ot hurt more, but I also feel that something is loosening up.  Lest you think this totally weird, studies are now being done that seem to support the idea that when people get, for example, a cortisone shot in a knee or shoulder it is the needle itself that does as much or more good than the steroid medication!  I'll private message you the link my physiotherapist sent me.  
    • sue86530
      sue86530 Anhaga

      Posted

      Bone report predictions can be scary, can elicit fear.

      I like your way of turning this around :-)  quote: 

      " I am apparently at greater than 20% risk of fracture within ten years.  Sound scary.  BUT I am by the same token nearly 80% likely not to have a fracture...."

    • kathleen65757
      kathleen65757 Anhaga

      Posted

      Thanks Anhaga. That's a thought! I have had acupuncture in the past many years ago so that is worth a try. It needs something to interrupt the spasms or whatever it is that is happening!
  • Aristotle13
    Aristotle13 kathleen65757

    Posted

    Hi Kathleen,  The sort of decision that you are trying to make doesn't seem to have a right answer.  All you have is a series of options with probabilities of success which are largely unknown.  Whichever way you fially go down, I suggest that you must have complete certainty in your own mind that it is the correct riute. It is quite amazing what a belief that you have chosen correctly can do for your brain and its healing potential.  It doesn't always work but if you are doing all the right things for your chosen route, it's unlikely that you wold be any worse than doing nothing and if it works than you'll be an all round winner.  It is unfortunate that there is no certain route and those routes that do exist are full of interventions from people who have debatable agendas.  I can't really offer you anything but hope but I'm putting my all into my chosen route which begins from a better level than yours.  Good luck with whatever you finally decide upon and be wary of those who aren't really interested in your well-being.
    • kathleen65757
      kathleen65757 Aristotle13

      Posted

      Aristotle, you are happy with your choice? You have not posted for a while. 

      At the moment I just need relief from the pain at the left side which is preventing me from doing much.

      I have decided to have Bowen therapy so here's hoping that helps.

    • Aristotle13
      Aristotle13 kathleen65757

      Posted

      Hi Kathleen - No, I am not happy with my choice!  I have had several reactions to the AA but I don't see any other viable options at the moment.  One of my reactions was the triggering of an imune system problem which I had many years ago and had forgotten about (Lichen Planus).  It causes incredible itching on my arms & legs and also messes up your fingernails.  AA caused me to lose two of my lower jaw teeth crowns only one of which could be replaced.  I am also losing hair on my head, not very quickly because there isn't as much there as there used to be. I have flatulence which I never used to be bothered with. My blood pressure has risen and so has my weight.  I think that the weight increase is due to water retention caused by intolerance to the lactose in the AA tablets. I have requested a lactose free variety so hopefully that side of the problems will go away.

      As regards the efficacy of the medication, it is likely to be another 10 months before my GP will allow another Dexascan to find out how things are progressing. This is probably reasonable since progress is slow anyway.  The information that I received from these forums has been invaluable and as far as I can tell, I am taking the correct vitamins (D3 & K2), and calcium. The vitamin D3 that I take has 5,000 IU and I have reduced my intake to every other day to avoid over-dosing because the Adcal also has 400 IU as well. I am getting plenty of exercise, three 90 minute sessions a week at the gym and a couple of five mile walks with sundry other exercise type activities as well. The gym exercises are now concentrated on strengthening the supporting leg, thigh and hip muscles and obviously, the walking is generally good for most other muscles. I have been rather cautious about any activity that could result in falling or putting undo strain on any of the bones and joints affected by the OP and believe that I have everythig covered. Only time will tell.

      I think that I am having things fairly easy compared with some of the forum contributors whose stories of pain and disabilities caused by OP are quite distressing. OP seems to be mush more widespread than I imagined and yet very little progress is being made towards finding a real answer to it. Most of the women at the gym who are over 60 are taking AA which quite suprised me. Having mentioned to a female friend about OP in answer to a query about why my exercise regime had changed, several other ladies came to me and chatted at quite some length about AA and side effects. It seems that they hadn't come across a male with OP. I never thought of OP as being a social activity before!

      At the moment, I shall keep exercising, taking the pills and reading as much as I can so that I can at least talk to my doctor from a position of knowledge. Neither OP or AA has affected my ability to burble on at length when given the chance.

    • kathleen65757
      kathleen65757 Aristotle13

      Posted

      That is interesting Aristotle. Did the ladies at the gym mention if they had side effects from taking AA? What kinds of side effects if they do?

      You sound like you are doing everything you can to help your osteoporosis.

      If others are experiencing side effects I have to wonder why it is still being stated that side effects are rare.

      I hope you manage to find answers to your side effects. Some are a bit disturbing especially the teeth one.

      LP is a nuisance for you. I have some knowledge from my own issues but mine has been part of my life for many years.

      All the best and keep posting!

       

    • alison28608
      alison28608 Aristotle13

      Posted

      Hi. There are a few things I would like to comment on, in you post. You are doing great re the exercise. There is some train of thought that exercise may be more benificial to keeping your core strength in tip top reflex and therefore should stop you falling, rather than actually strengthen the bones. I am keeping an open mind on this but it has certainly been my experience.

      The only side effect I had to AA was falling asleep at lunch time on the day I took it. My GP said, although these med all do the same thing, people can experience different side effects to one and not the other. I changed and have had no side effects to risedronate.

      Itchy skin, hair loss and fingernail changes are all common, leading to and during,  also, after menopause. I certainly experienced all of them, a couple of years before my diagnosis and certainly before taking the meds.

      As for the teeth. My dentist explained to me, in great detail, how these meds affect the teeth. He says, because the healing rate is affected with bisphosphonates, due to the change these meds make to the blood supply, but they have no effect on teeth until an extraction takes place. However OP can apparently cause teeth to loosen and fall out. Therefore, on the meds, oral hygine is essential not to get into this bracket in the first place. Food for thought. I am at the OP open clinic tomorrow, so I will have a sack load of questions.

    • alison28608
      alison28608 Aristotle13

      Posted

      I have just re read your post. You lost 2 crowns, or 2 teeth?   I Want to be clear on this. Both my husband and the dog suffer flatulance. None of them take any meds!!!!
    • kathleen65757
      kathleen65757 alison28608

      Posted

      Alison, he is saying that those things happened after he started taking the Meds. Aristotle is intelligent. He would know the changes coincided with th commencement of AA.
    • alison28608
      alison28608 kathleen65757

      Posted

      I am not questioning anyones intellegence. But coincidences do happen and part of learning more about our condition is asking questions and not just accepting the posts,  that fit in with our beliefs. I believe I am keeping an open mind and value everyones contribution, on this forum.
    • alison28608
      alison28608 Aristotle13

      Posted

      Also, forgot, I too have Lichen Planus. No flare ups for several years thank goodness.
    • Aristotle13
      Aristotle13 kathleen65757

      Posted

      At the time of talking to the ladies at the gym, it didn't occur to me to ask them about their experiences - I was rather surprised at being approached and them showing interest.  I'll try and remember to ask them when I next see them - their attendances are a bit erratic.  One thing that I did remember after I'd sent the post, was that I have a side effect which has decreased with time and that is vertigo which was quite bad on the first day that I took AA but it has decreased since, usually being worse on Wednesday afternoon after the pill in the morning.  It isn't life-threatening but I prefer not to drive when I'm not in full control of my faculties.
    • Aristotle13
      Aristotle13 alison28608

      Posted

      I actually lost two crowns and some tooth material.  The dentist said that the part of the tooth to which the crown was bonded had dissolved and so the crown came away.  One of the crowned teeth had sufficient material left to re-attach the crown but the other one had gone below the jaw-line and could not be used to support the crown because there was too much risk of the roots splitting apart.  Regarding the flatulance, it had never been a problem previously and only lasts for a couple of days each week after taking the AA.
    • Aristotle13
      Aristotle13 alison28608

      Posted

      It was in the 1970s when I last had flare-up of LP and I had totally forgotten about it until a week after taking the AA. An article that I read suggested that the immune system could play tricks the first time that AA is introduced.  Guess that I was one of the tricks.  It is subsiding slowly and hopefully normality will resume in a few more weeks. Have always had the peculiar swirls and lines on the nails since the first attack of LP and it causes flaking when it reaches the top of my nailbed.  That is particularly bad at the moment but using nail-envy strengthens and glues things so that it doesn't bother me.
    • alison28608
      alison28608 Aristotle13

      Posted

      having a few internet problems here, but I find your post very interesting. I need more time to reasearch the effect AA has on crowns before I can make an informed coment. But,  nothing I have seen so far, tells me this is a problem with AA. Did you suffer from healing problems after the tooth was removed? I have an implant done a few years before my diagnosis and its holding firm. 
    • Aristotle13
      Aristotle13 alison28608

      Posted

      The crowns were unaffected when they came out within a couple of days of each other and a few weeks after beginning AA.  The dentist could find no other reason for the rejection and both crowns had been in for around 18 months and 21 months.  I'd be interested if you come up with some thing different and more believable but at the moment I have to believe the opinion of the professional - not NHS any more. Note that I have just had to reset my PC clock - something set it 3 hours slow for not the first time.  Hope that you get your internet sorted.
    • alison28608
      alison28608 Aristotle13

      Posted

      The time scale is all wrong for the teeth deteriorating as a result of any meds. perhaps the crowns were put on teeth which already had problems. I would get a second opinion, but I cant see anything that would suggest this is the cause, even after long term use of AA. As for LP. Yes it is an auto immune disease and it can affect the nails. Most people who have underlying medical conditions, react more to most meds. I have balance issues and frequently had dizzy spells. This was found to be a brain tumour and I received radiotherapy. It is shrinking slowly but I have had no dizzy spells since starting my OP meds. I would think I would be a dead cert for this happening if it was connected. Do speak with someone if you are finding you are having problems because another brand may suit you better, as it did me. Good luck and keep exercising!!!
    • Aristotle13
      Aristotle13 alison28608

      Posted

      Agree that the timescale seems short but the dentist wasn't at all surprised and thought it quite normal. He replaced the feasible one with no charge.

      Will report how I get on after a while.

    • alison28608
      alison28608 Aristotle13

      Posted

      I have several crowns an implant and a couple of veners. Had no problems and the dentist told me today, there should be no problems with my teeth and the meds. Only a slight risk, if I need an extraction. Then I would need to take antibiotics before and after the treatment, as a precaution. He explained how the bloodsupply to the wound would be comprimised because of the meds and therefore,  healing was not as efficient. This all made sense to me. Keep us posted on how things go.
    • kathleen65757
      kathleen65757 alison28608

      Posted

      Actually after three years Alison should you need an extraction get your doctor to prescribe the following blood test which will show the risk. I would make a note of it ......  3Y CTX .... If CTX is lower than 150 then safe.

      Also, my oral surgeon said he would not pull the tooth as such but cut down the side and take it out that way.

      A dentist cannot predict only the blood test can show the risk.

       

    • alison28608
      alison28608 kathleen65757

      Posted

      I will do Kathleen. Thank you for that. But it is a bit like trying to prevent a fall. Try to avoid needing any extractions in the future by looking after our teeth. No one can predict if I will need a tooth extracted, or if you might break something, but we must do what we can to prevent these risks happening.
    • kathleen65757
      kathleen65757 alison28608

      Posted

      I know my teeth will eventually come out as quite a few already have. 

      I am a bit paranoid about falling.

      But here's hoping!

      I went to the Bowen practitioner today and I am hopeful she will be able to help me. It seems to be a nerve in the sacroiliac so similar to sciatica.

      You are welcome about the info for teeth extracting and blood test.

      All the best.

    • alison28608
      alison28608 kathleen65757

      Posted

      I hope the Bowen partitioner can help you. Pain is very tiring where there is no end in sight.

      i am going to the walk in OP clinic today with a sack full of questions. They have this every 2 months and anyone can go along and find out whats new, discuss their condition, make new friends and there are always at least 3 medical staff on hand. They are based in the OP centre. We discuss all kinds of things from diet to exercise from drugs to side effects to smoking. The more I learn, the more questions I ask. I am lucky to have this facility

    • Aristotle13
      Aristotle13

      Posted

      One of the ladies mentioned above was at the gym and I asked her if she had had any side effects from AA and would she mind telling me.  This caused an immediate change in her demeanor and with some anger informed me that the AA had robbed her of her sense of taste and she believes that she will have passed on before it comes back.  Apparently she now only has the four basic tastes and for one who used to enjoy fine dining, this has not been an amusing experience.  I don't know if she has been back to her doctor, the reaction was so hostile that I didn't like to pusue this further!  I'll talk to a couple of the other ladies when I see them.
    • Anhaga
      Anhaga Aristotle13

      Posted

      Aristotle - Oh my goodness, what a shame.  Was the hostility directed at you for asking, or at her situation?
    • kathleen65757
      kathleen65757 alison28608

      Posted

      I think you are safe from the jaw dying til after three years on AA but that does not mean you are safe from lesser side effects. Some people are reporting minor side effects straight away.

      Minor issues do not feel so for the people experiencing them however.

    • Aristotle13
      Aristotle13 Anhaga

      Posted

      Definitely hostile at her situation.  Before retirement she was a pharmacist and is now in her early 80s. She has been super-fit and didn't even suspect OP until about three years ago when she fell and broke her hip while playing table tennis.  I get the impression that at this stage of life, in hindsight she would rather have taken her chances without AA and kept her sense of taste.  She wasn't given much in the way of information at the time and surprisingly had never had to find out about AA as part of her employment..
    • Anhaga
      Anhaga Aristotle13

      Posted

      It's possible, given her age, that AA was simply not on the horizon during her career.  But really I think there needs to be a lot more involvement of the patient in making life-altering decisions like this.  There is still a sort of paternalism emanating from the medical profession whenre they know best.  Well, they may know MORE, but what is BEST has to be decided by the patient, using information from the medics of course, plus their own knowledge, intuition, life situation, etc.
    • Aristotle13
      Aristotle13 Anhaga

      Posted

      Quite like your philosophy and agree with your opinion of the medical profession although there are still some really good doctors out there who aren't afraid to learn and try something new. The problem is, finding them!
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