Alendronic acid for osteoporosis caused by parathyroid tumour

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I've been diagnosed with significant osteoporosis due to this parathyroid tumour, my consultant has advised me to take anedronic acid tablets once a week but the side effects are quite worrying and I'm not convinced totally it will help, I've not had a date for my op as yet and have been told it could be several months, has anyone else taken this and has it helped with the constant aches & pains? I've got to the 'weepy point' and totally fed up with myself, really not much fun all this is it? I'm a 53 year old woman and diagnosed March this year, I'd really appreciate any advice ūüėü

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  • Posted

    Hi Karen,

    I am so sorry to read this.  Actually we are in the same boat almost but I am 15 years your senior.  I was diagnosed with advanced osteoporosis a year ago in the spine and femoral neck, was really shocked as I have always been active (was widowed with a 3 year old and had to carry on renovating our house etc) and have always had a healthy diet and was only after I broke my wrist that I was sent for a DEXA scan.  It has taken me since May to realise that I have primary hyperparathyroidism and now am awaiting a sestamibi scan as the ultra sound showed something up.  I still have to wait another 3 weeks even though I am going privately.

    I personally would not entertain any of the bisphosphonates, like Fosomax etc. The GP I went to after my Dexa scan results was eagerly pushing a prescription of this to me without even bothering to read my history of inflammation of the food pipe and suspect ulcer in the past.  Just so that you know some people who take it have no ill effects but you should know that it does not create new bone growth and hardens old bone, so Merck, having had many law suits against them in the U.S. have had to add another side effect, ie hip fracture.  Apparently when the bone becomes so hard and brittle, it can just fracture without you even doing anything.

    Because the medical profession in this country are so ignorant about hyperparathyroidism (an example another GP was encouraging me to chew on those awful Adcal D3 calcium tablets - 3000mg per day) when she hadnt even noticed that my blood calcium was higher than it should be.  My surgery do not do PTH tests either, some stupid excuse about the sample going off in the van, so the hospital sending the Dexa scan to them October of last year where it recommended blood tests including eliminating Primary and Secondary hyperparathyroidism was ignored and so a year on I am now in this predicament and had to go down the private route.  I have been managing and not feeling well and very achy for quite some long time before I broke my wrist and didnt know why. The last two months have been horrendous with rapid heart beat going all day and night and worse the dreadful nausea so I have lost over half a stone in almost 8 weeks.  I cannot go on like this, even if I have to use one of those equity property companies to raise the money to have it done privately.

    You need to Google about bisphosphonates, there are also youtube videos about it.  I registered with the National Osteoporosis Foundation who are in the U.S. the equivalent of the National Osteoporosis Society in the U.K. who I found to be about as knowledgable as the U.K. GP's!!!   I picked up lots of things about osteoporosis, sent away for a dvd and also a very helpful book called Walk Tall.  The latter is written by Sara Meeks a physiotherapist who specialists in osteoporosis (we have nothing like that in this country).  She is also on youtube.  In her book she explains just simple things, how to get in and out of bed without breaking anything, how to bend (never from the waist) and different exercises.  Unfortunately I am too poorly now with this hpt to do anything much and can barely walk over to the supermarket to get a bit of shopping.  I dont drive which is a drawback and have no support except from a very nice girl who now does my cleaning.  I have four cats, so you can imagine how difficult that is, I have to use grabbers to put the food down and have made wire handles for carrying water bowls and also long wire handles for their litter trays.  I thought I was doing my best for myself and buying supplements from the U.S. and eating even more healthily until I happened to notice the blood test results last May.  I have everything printed off as I dont trust their competetancy.

    Sorry you are feeling weepy, we all go through that, I sobbed for four days solidly when I found I had OP.  Just take care of course and do some investigating before you commit to alandronic acid/bisphosphonates.

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    • Posted

      Oh my goodness Elaine, you poor thing! I know my bones are important but it's not the only symptom in all this, nausea & being sick  is also a big problem, I've been told by my GP to do 40 star jumps a day to help with the Ostio, I can barely get my legs & hips to move in the same direction first thing & by the end of the day I'm exhausted! I have googled so much this last few months & there are so many different views, mostly anti taking these drugs, I thought I would ask someone who actually knows how it feels to be in this situation, I hope you get your operation done very soon & get your life back, look after yourself & thank you 
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  • Posted

    Once you have your op you will start rebuilding bone, I wouldn't be taking anything until after your op and then let your body heal itself. The symptoms disappear so quickly once the tumour is removed and weight bearing exercise is the best for bone rebuilding. I hope it doesn't take too long before you get your surgery, in the mean time, take care.
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    • Posted

      Thank you for replying Lynette, I try to do exercises every morning, things I have found on the internet rather than the 40 star jumps my GP recommended, that actually did make me chuckle as the thought of jumping makes me exhausted, the consultant did say once I've had the op the bones will recover but there doesn't seem to be any rush in doing it, at the moment I was told it could take several months so I don't know what to do for the best but thank you for replying & confirming how I really feel about it all 
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    • Posted

      I think you younger ladies have a much better chance of bone rebuilding than me. Last year my spine was -3.6 goodness knows what it is now. I was advised by several people not to jump ot even do the toe to heel exercise. I even thought of buying a rebounder which is a special low and small trampoline specifically for OP or a vibrating body plate but was advised against it. Not by anyone in the UK as they haven't heard if these things. Now I'm just crawling about doing nothing.
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