I have a telephone consultation with dr to review my medication. I have not notified dr that I had stopped taking bisphosphonates a few months ago because of terrible side effects I had with both types of tablets. I don't want to have a bisphosphonates infusion or injection as I am concerned about the side effects. Anyone else told their dr that they were not going to take op meds because of the side effects pls?. Also any advice on taking strontium citrate pls.
will I be offered another dexa scan a... - Bone Health and O...
will I be offered another dexa scan as I have stopped taking bisphosphonates because of side effects? any advice on strontium citrate pls
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karmel
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I did several years ago. I had been on three-monthly intravenous Pamidronate infusions for about seven years and was switched to Zolendronic Acid - I had one infusion of that. I suffered some side effects that I wasn't happy with so I asked for a drug holiday and my consultant gave me a year. When I went back I told him that I didn't want to go back on any of them so he offered me Denosumab but I refused because I had heard about the awful side effects. We left it that I didn't want any more drugs for osteoporosis and that I would try to control it by diet. He did say that if I wanted to go back on to the drugs, to get referred back via my GP.
I stopped taking meds over 5 years ago, after being on risedronate for a year, because I wasn't happy with all the side effects. I didn't bother telling my GP at the time, but can only assume she would have known as I stopped the repeat prescriptions. I changed GP surgery a couple of years ago, and my new GP did say that I may need to go on meds for a year or two, but I'm not sure what he thinks would be suitable, as bisphosphonates don't suit me, which means Prolia is ruled out too (because you need to take a bisphosphonate if you stop Prolia). I've been trying to eat healthily, get plenty of exercise and have taken a range of supplements for the past 5 years and seem to have slowed down my bone loss. I'm having another scan later this year (but a REMS scan, not DEXA). I'm now also taking strontium citrate, but only take half dose, so will be interested to see whether that makes any difference to my bone density. It isn't advised if you have existing heart or kidney problems, as it can exacerbate these, including raising blood pressure. I'd had a range of tests done before I started taking it, including for heart and kidney health, so had no reason to think there would be any risk from taking it. Some people say it doesn't pose the same risk as the prescription form, strontium ranelate, but they also claim that it works the same way and, therefore, builds bone density and reduces fracture risk in exactly the same way, in which case I would assume it also carries the same risks.
Thank you for a very helpful reply. I will find out where I can have a REMS scan if I am not offered a Dexa scan. I have found that any supplement that contains silica, aggravates my gut so I am also taking half a dose of strontium citrate but on alternate days. You made a very good point about when you stop Prolia you then have to take bisphosphonate -thank you for reminding me about that. 🙂
• in reply tokarmel
Check out "Save Our Bones" "Better Bones" and Algaecal supplements. That's what I'm doing after GP tried to prescribe AA for me.
Hi,Obviously your doctor needs to know that you have stopped taking the treatment prescribed to you.
Follow up dexa scans are given to monitor the results of the treatment.
This makes sense so as to see how bone strength is increasing.
If not on treatment then the hospital consultants will not repeat dexa scans ( they do not see any benefit)
If you do not want treatment that is recommended to you then you will be left on your own.
If in the future you fracture then you will be asked again to consider the different treatments and if you agree then scans will commence again.
Your other option will be to periodically pay to have them done.
If your GP has prescribed your treatment and not the hospital he may take a different view and agree to send you for regular scans.
At the end of the day it is all down to cost, scans cost money, and not meaning to sound harsh but they will only generally give them to people who listen to their advice and take the treatment offered.
If you are deciding to manage your own bone health the natural way then I wish you all the best and hope it is the right choice to make for yourself.
Not knowing your current T scores makes it difficult to comment further.
Take care and the best of luck.
Good reply I agree totally with what you have said and your reasons.
Thank you.
Yes scans are expensive and bisphosphanates cost pennies.......!!
A very salient point.
Have you ever had a blood test to check your calcium levels? I have osteoporosis caused by hyperparathyroidism. A blood test showed high calcium high parathyroid hormone levels and low vitamin d. I am now awaiting surgery which will improve my bone density maybe back to almost normal levels my surgeon says If you want to know about your calcium ask your gp for a blood test. But get him to test calcium vit d and parathyroid hormone from the same blood draw..bisphosphanates are of no use to someone with primary hyperparathyroidism. Just a thought......
Hello. Have a look at my responses from 3 years ago, when I had my parathyroidectomy.I am due to have a repeat DEXA scan in the next couple of months... covid permitting. I can’t wait to see if I have any improvements.
🤞🏻
Good luck.
Fran 😉
I realised it was 3 years ago after id posted. Let us know how the dexa is once you've had it. Good luck for a great improvement x
Thank you 😉
• in reply toCappuccinobaby
Nice I just got some vitamin k for my aunt..she didn't have low d...but high which can cause hypercalcemia in blood so the k is supposed to help balance that out . and magnesium so the body doesn't need to draw calcium from bones to restore pH ...not sure how we will know if it helps or not. But worth a try. I suppose if calcium goes down we will maybe know.
Cappuccinobaby• in reply to
When you say PH do you mean parathyroid hormone? If so have you aunts vit d calcium and ph levels bedn measured from the same blood draw so the 3 can be seen at the same time as they are relevant to each other
• in reply toCappuccinobaby
I actually meant pH as in alkalinity. The body if it gets acidic has to find an alkaline to neutralise and keep everything at the right pH so it can use calcium from the bone if it doesn't have anything else to use ...it cosntsntly takes from the bones because pH is so important it has to stay level so it will take any stores and use them hoping that later it will put them back I guess..like money in the bank...but then if the debt isn't repaid... But thank you for that info. there's a place called osteoclinic here in Ireland...the lady is a nutritionist but she has councellers and phsyiotherapists who are all specializing in osteoporosis so I'm hoping my aunt will get in touch and they will do tests. she's had many tests from her gp over the years but not got a copy of anything. When I have been tested my doctor told me lots of things were fine but when I got a copy of it she hadn't done some of the tests like iron she said my iron was fine hadn't even done the test. And she failed to tell me the marker for dehydration was high which could be a cause of my symptoms. So I don't nessisarily trust their saying everything is fine. My mom has diabetes and she was told her glucose levels were normal at 8_11 which is in fact high. So I just trust nobody at this point. But I've been wondering what tests she might need she also needs a test for lead because she grew up as did I drinking from lead water pipes which when we teisted the water was 10,000 times higher than the acceptable amount. And it leaves the blood very quickly but can settle in the bones for years. My mom who grew up there too also has osteopenia and as a kid I lived there so I wouldn't mind getting tested myself. But it may need a bipopsy to even test for it I'm not sure. My aunt had menopause at 35/@!$ and osteo a decade or so later. They never really told her anything about it. Need for excersise or hrt ..she got prescribed everything over the years but she stopped taking many of the meds as they were inconvineient or unpleasant side effects. And didn't tell her doctors so her doctors think she's done all of that and can't offer her to go on them again. I can't really cope with the medical side for her so I can only hope she will ring that lady doing the clinic because she seems really good. Even for the sense of support and positivity it will give her. But you can only drag the horse to the watering hole you can't make them drink. I kinda have to step back for my own sanity really. But thanks very much for the info. Its great that people on here are really proactive she might join here herself and find some inspiration.
Cappuccinobaby• in reply to
I have osteoporosis it has been caused by hypercalcemia as a direct result of too much parathyroid hormone. The parathyroid glands work like a thermostat telling your bones to release calcium from your bones as your body needs it then switches off when calcium has reached its optimal level and so it goes on all day every day. With hyperparathyroidism, a benign growth or enlarged gland doesnt switch off and continues to make thd bones release calcium eventually leading to kidney stones or in my case osteoporosis i have low vit d too and just wondered if your Aunts GP may have looked at this as a cause fot her osteoporosis
• in reply toCappuccinobaby
Honestly she's had a few different gps since she was diagnosed but I know at one point her gp put her on thyroid hormones but when she tried to get the script refilled by a colleague (she worked as a medical secretary) the colleague said her tests showed she didn't need it so she never took them again. And her present gp has not been very helpful she had a broken spine and she didn't send her for x rays...gave her pain meds that made her constipated and spent a year referring her for colon scopes and scans... Eventually got the x ray by which time she had too more factures and the way some docs treat her ..like even lying down could break her spine and they don't have a special x ray thing for people with a broken spine...it uosets me a lot to even talk about it I get really angry and feel helpless....she does have fibroids which is a symtoom of high calcium and catteracts as well as high cholesterol all of which seem to be related to high calcium. But she was told her d was normal. Do you make vitamin k with d? I have stopped taking d till yesterday when I got my vitamin k finally ... Thanks so much for the support.
Cappuccinobaby• in reply to
I take vit d vit k boron and magnesium glycinate. Your Aunt could have a parathyroid problem ( different to thyroid ) these gland control release of calcium and can cause osteoporosis. It might not be the cause of your Aunts osteoporosis but i would want it checking out if it was me. The GP needs to check calcium levels and parathyroid hormone levels from the same blood draw. If both levels are high then its hyperparathyroidism and can be cured by a small op. Im amazed how many people arent tested for hyperparathyroidism when they are diagnosed with osteoporosis and how many are found to have it when they eventually get their bloods done!!!
• in reply toCappuccinobaby
Thanks first the heads up. I mainly joined this for my afib issues and magnesium sorted them out within hours....four magnesium tablets and that night nothing .....im amazed they don't test for the things they know can cause afib and people end up on meds for years having multiple surgeries without Ever being checked for a simple magnesium deficiency.!! Or other possible causes. The whole system is very messed up and irrational. I think there will be huge pressure to change when people have access to information as they now do and can demand better. Hopefully. I will make sure my aunt gets a thyroid panel and a full blood work done. I think in america people get an anual check up. Not here in Ireland you have to ask.
Cappuccinobaby• in reply to
Parathyroid
• in reply toCappuccinobaby
Oh OK is it a different panel...parathyroid panel. OK I will email myself to remember that and google it too. Paragliding parathyroid I will hopefully remember that thanks.
Cappuccinobaby• in reply to
Thyroid is a butterfly shaped gland and 4 parathyroid glands sit either side 2 at the top and 2 at the bottom they act as your calcium release mechanism and if one is faulty your body continues to leak calcium from your bones leading to osteoporosis. The calcium could then get deposited in your kidneys causing stones or calcification and even worse be deposited in your arteries. A simple blood test will enable a diagnosis. High calcium high parathtroid hormone means hyperparathyroidis and even if your calcium in only raised slightly it needs investigating especially if your parathyroid hormone is high. Also remember the calcium and parathyroid hormone MUST be tested from the same blood draw !
DizzyD• in reply to
Hi gonnamakeit this is the first time I have replied to on a post on this community. Came to this one because I was in a dilemma as to whether I should get infusion next week for osteoporosis. Defo not going to get the infusion (injection) because I was bedridden with severe bone pain for 6 days after taking one dose of aldrenic acid in pill from over 5 years ago. Good grief it fills me with dread to think what side effects would be like after a injection that lasts for a year. Doc wants me to have this so called treatment, despite the fact that my bone density has improved greatly due to my own interventions.Like yourself, I am baffled as to why medical doctors do not investigate the cause of a persons medical condition. You AFib condition which you resolved is a classic example. My AFib has improved too (I reducing heart meds now). I also self medicate for my thyroid problem (I have no thyroid) and believe it or not my cholesterol and pre-diabetic levels have gone right down to normal.
If I'd have left my health care in hands of GP My health would be going in a downward spiral.
I did not intend waffling on about myself. Want I to say is that I suggest your aunt gets a private thyroid blood test online and post the results on thyroid UK site via HU. NHS thyroid tests only look at TSH number and likely say her results are fine. They do not look at freeT4 and freeT3 levels which are the most relevant markers when it comes to determining how the thyroid is working or under performing. I
Sorry my reply is a rather rushed.
• in reply toDizzyD
I'm trying not to waffle back in return. Anyone comes within two meters of me gets my babbling because I haven't had a proper waffle for over a year. Lol. I will make a note of those. Thanks very much and well done you for increasing your score that's fantastic!! Have you a post about what you did yo achieve it? Might be worth sharing your story. And message me any time for a waffle!
I had an allergic reaction to AA tablets twice and stopped taking it and was put on another bisphosphanate tablet, which I got side effects from. I asked the doctor (a locum)about side effects if you had the infusion or injection and he said that if you have the tablet you can stop taking it if you have side effects if you have the injection or infusion you can't. I should add he was a locum and I wonder if a doctor that wasn't a locum would have been so refreshingly honest.
Sorry for my late reply karmel and Thank you for your imput. I have reached the same conclusion as the locum you spoke to re: once you have the infusion you are stuck with side effects for a year. Personally, I am prepared to face the consequences so I not having the injection. I am not going to risk being laid up in bed in pain, being a burden to my family with no quality of life. Don't think the locum was being honest though, it's down to common sense really based on one's experience of side effects when treated in the past with same chemical formula. At the end of the day we are complex individuals in our own right and no doctor on this earth can tell anyone whether they are going to get side effects of not. There are no guarantees at all. It's always down to individual choice.
On the subject of bone health, years ago I was prescribed adcal (calcium supplements really)and I am still prescribed it today but don't take it. Why! The calcium deposits from adcal, can build up in your arteries and cause them to fur up contributing to blocked arteries. I drink lots of milk and take K2 supplement along with vit d, magnesium complex and plenty of exercise.
My bone health is in the hands of the God
No problem with a late reply 🙂. I think it is a case of one size fits all re op meds. I don't think I fully understand the point of taking op meds, because they are not going to stop you having fractures, but make the bones more dense (not stronger) on a DEXA scan. I do not take the calcium supplement the dr prescribed for me as it aggravated my gut but I do take a stomach sensitive calcium citrate supplement as my I cannot tolerate milk products.
I had a calcium test last year and was in the normal range and then paid privately to have a Vitamin D blood test - very important to have them checked - thank you. 🙂
Absolutely
Don’t know about a follow up DEXA but I spoke with my fracture liaison nurse earlier this year and broke the news that I had stopped taking alendronic acid because it was making me feel so ill - not gut problems, just the rest of my body.
She did say that I would need she would contact my GP to have my vitamin D checked and I though ‘good Luck with that’ but I got a call from them asking me to come and have it done. So it looks like I’ve not been completely written off so maybe I’ll get a DEXA when the time comes - I don’t think I was due to get one for five years which was when they were going to review my case. Like Met00 I’ve had a REMS scan because I can pay and have one done annually.
I told my GP that I just couldn’t go on taking the alendronic and feeling so ill and asked her to take it off my repeat prescription - I couldn’t cope with the pharmacy assistant’s response when I said I didn’t want it. Boy was she shocked and disapproving!
I’m afraid I cheated and wrote to my doctor giving the extensive list of reasons why I felt that alendronic didn’t agree with me. I was a bit surprised that I had no response from her - at least I didn’t need to argue my case in person - I knew she would have received my letter because my husband posted it through the surgery letterbox - then when I looked on my repeat prescription form AA had disappeared.
I ordered strontium citrate then returned it when I read about side effects etc but I know it’s not like strontium ranalate so I still wonder about taking it. It’s all so difficult isn’t it.
Strontium ranelate is a manufactured form, citrate occurs naturally. I flippantly have said ranelate was invented so a cheap supplement could be turned into an expensive medication. Colour me cynical. 
Ah, my husband is always saying I’m cynical and I don’t think it’s a flattering comment, last time he mentioned it he said I was getting worse as I got older. I’d say that’s true but hey, where would the world be without us cynics?
Haha. however I've just read a post in another thread from someone who had missed Prolia dose, had vertebral fractures, and has since prevented any more fractures by taking certain supplements. Quite impressive, I'd say.
H/She wrote: "In 2016 I skipped a Prolia injection and suffered from compression fractures like dominoes collapsing from T 6 to T 12. Thus my own research. I did know that Prolia works RANKL inhibitor and found using Horsetail herb and Black Cohosh supplements, in addition to all other healthy lifestyle routine has kept me off Prolia without additional compression fractures. It is my own results, no formal clinical testing has proven me right or wrong."
Just looked them both up, black cohosh looks like it could cause liver problems so I think I’ll skip on that but horsetail looks as if it has more health / bone benefits so I might do a bit more research and give it a try.
Is horsetail one of those things that provides plenty of silica?
Think it must be - seems to cover hair, nails and bones. It can have nasty side effects too but then lots of things have nasty side effects so who knows.
healthline.com/nutrition/ho...
• in reply toFruitandnutcase
Doesn't say there are any nasty side effects. says non toxic ..and its pretty inert as a vegetable. Only thing they mention is one person who got pancreatitis from drinking it...same as things like comphrey one person one time drank quarts of it and got liver damage which reversed when she stopped...one person who took copious amounts in pill form and one person who had permentant damage. And that's it. Three people in as many years and its considered dangerous. Whereas people taking medications can have their bones spontaneous femur frastures extreme bone pain and all manner of side effects and that's acceptable. But one person does something insane with a herb sticks it up their bum and punctures a bowel and suddenly its unsafe for everyone. Very different rules depending on who's getting paid.
HeronNS• in reply to
Reminds me of the woman who was eating swordfish every day for two years (those were the days) and got mercury poisoning. Moderation in all things!
• in reply toHeronNS
Wow she must have been very wealthy!! Swordfish so spensive! People hear something is good for you and lose the plot with it. I had a poster at the foot of my bed as a kid with lots of hippos ia boat and it said "more is not always better" to be fair I did think one of the hippos name was more and that he wasnt always in the best of health so I totally missed the point. But I get it now. Lol!
Yes or when I dyed number one son orange when he was a baby because he loved mashed carrots - health visitor said he looked great apart from the jaundice. I just thought it was a nice healthy glow, he was born early March 1976 - a really hot year. Turned out it was the carrots. I agree some of the most widely used and heavily prescribed drugs can have dreadful effects on people. I might try some horsetail tea - although after my problems with too much green tea I’ll be a bit careful.
I think its something we get from eating salad, but not really sure...
• in reply toHeronNS
Yes some people eat it as a vegetable it has to be used when its very young though if you use it later in the season when it gets bushy the crystals become large and can cause things like stones in your body. Joints etc ...I've bought herbal tea once that had the older leaves in it and decided against it ..it grows everywhere her and people hate it so I pick it...right now is a good time. It looks brown and speccy and has no hairy leaves ..if a few more weeks it will have hair leaves and then its too late to pick and use. So maybe some of these supplements use the hairy leaves.
I can understand completely how ill you felt when taking AA, all the time I was taking bisphosphonates I had problems with my gut. I have made some notes listing all the gut problems I had when taking them for the dr's telephone consultation. I will have to find out where I can have a REMS scan if I am not offered a DEXA. I am taking strontium citrate on alternate days and a half dose only, as everytime I have tried taking any supplement with silica (to strengthen my nails) it aggravates my gut.
• in reply tokarmel
Could be that it isn't good horsetail. Silicea itself doesn't have the qualities of hrotail which stimulate new bone growth osteoblasts and inhibit osteclasts...silica itself is an irritant ..its what causes silicosis...if it gets in your lungs. If its picked early the crystals of silicea are tiny and absorbable...if picked later when its hairy the systals are large and if they get in your system past your gut they can irritate. They also need to be cooked and some people make tea from them. So when you drink the tea or cook water you're not eating the silica that hasn't dissolved. In don't known what kind you were taking but I wouldn't write it off silica is essential in tiny amounts. Large amounts might irritate but you moght be able to drink the tea from the young shoots without any trouble. And you really need such small amounts. You can also poir the water or tea onto food to not have it on an emoty stomach and use things like osyllium husk to give some mucalage. When you eat the fresh shoot it is quite squidgy and a lot of plants have mucalage and other elements which pair will with each other but alone and extracted aren't as good. Like vitimin c without the bioflavanoids...we grew and evolved eating whole plants not elements alone. I go to the whole food store here and everything is a bloody extract. A powder an isolated companont...not a single whole food among all the packages. But you will get silicea from other foods. Its the osteoblast activity of horsetail that make it different. As I remember squeeky vegetables have silicea like green bean mange touts... If you can get it from green beans I wouldn't bother paying for expensive supplements. More isn't going to give extra benefits and enough is ..well plenty.
Well they're not going to offer you a scan if you haven't told them. You should definitely tell them. My aunt had a similar problem..stopped taking one of the emds if not a few different ones she stopped and then when she went back they said oh you've been on that for two years we can't give you that...and actually she hadn't taken them for two years...so they also thought it didn't work and there was no point trying again ...and because she hadn't informed anyone its down as two years officially and she can't change that or prove she wasn't taking them. So tell your doctor. Seriously if you in the future need something it could really mess it up for you.
karmel• in reply to
I have a telephone consultation with a dr to review my medication and I will tell her then my reasons for stopping taking bisphosphonates. I personally think that those of us with op stops taking op meds because we have terrible side effects.
• in reply tokarmel
Well thats good, do be careful, my aunt was basically fobbed off after she refused one...which is why she didnt tell them about the other one she stopped ...i dont know what shes like, your doctor but most dont like being told anything. Maybe you can work it so she comes up with the idea herself somehow. I Just know my aunt found it difficult after that and the guy was very cold with her afterwards. She has nobody now regualrly and has tried a few private places and they get annoyed because she goes public to get the aftercare for free and not with them. So i dunno how it works for you but ill cross my fingers for you that she will be understanding and give you some options. Hope it goes well and that they find something to help that doesnt make you feel dreadful on top of it all. 🤞
I am a bit worried because I may have to undergo infusions, what are the side effects?
Hi Musicl last year I had spontaneous multiple thoracic and lumber fractures. I cannot take oral biphosphonates because of reflux annd tummy troubles so I was offered the injection denosumab, (Prolia) or zolendronic acid infusion.
I chose the infusion a few weeks ago and I was very poorly, with hallucinations, vomiting, incontinence, severe chills, muscle spasms and not being able to lift my head up to even sip water and long periods of which I cannot remember. My poor husband was frantic and at his wit's end, but his phone calls to the unit, and trying to get medical advice did not offer any help or respite.
Blood tests 2 days after revealed almost no calcium and very out of range of other renal and liver tests.
Fortunately or unfortunately, I am not sure which, (!) these blood results were found a week after I had them done.. My results had been sitting on someone's desk without being followed up for a week and the phone call from my gp that I had an emergency ambulance on it's way came completely out of the blue. I was admitted with suspected heart problems. By this time all my levels were going in the right direction, and repeated ECGs were improving so luckily I was/am okay.
I saw a bored registrar at the rheumatology/osteoporosis clinic last week and told him of these side effects and also my worry of my left hip and femur fractures as I am still waiting for a total hip replacement after two years. He looked at my results which was -3.4 and said what a shame as if they had been -3.5 I could have had Forsteo, (tereparatide injections).
I was amazed, my hip is so painful and very unstable, and yet the decision was made on .1 of a degree.! Surely this should have been taken into account. Then he said the most revealing thing of the whole appointment, I wasn't offered it because it is too expensive!
I have had the infusion and the side effects have gone except sometimes the blurry eyes and it will be another year before I have to make a decision to have it again, so I really have to let go of my anger and disappointment.
One thing I do know I will definitely not have Prolia and if my only choice is the infusion I will make clear I will need to be looked after very closely. It was not fair on my poor husband to be my sole carer during that awful time.
I know the NHS is busy etc etc but surely something is going wrong here. It sounds like I am not the only one to be let down. Even e-consults are now taking a week, that can't be right.
My side effects of the infusion should not be your deciding factor, apparently it is quite rare and not everyone suffers like me. Just do your research, I thought I took the best option offered to me but I should have asked what my DEXA scores were and then argued my case depending on the results.
Good luck!
Hi bluebell99 considering your adverse reactions to infusion and many fractures you have had, I would stand my ground and request the treatment that doctor claimed was too expensive for you to have. Don't settle for anything less if you think the "expensive" treatment will be of benefit to your health and well being.Personally, I have only ever dosed with one AA pill, about five years ago, the side effects were dreadfull. That was it for me, but now bone clinic wants me to have infusion next week. I have never had a fracture but was diagnosed with osteoporosis. My last Dexa scan revealed my bone density has improved so diagnosis now back tracked to osteopenia??
In all honesty, I suspect medical folk want to give me infusion far too soon so I will not be cancelling appointment for next week.
I sincerely hope you get your hip replacement surgery very soon.
Yep , I told my GP that I wasn’t taking anymore Alendronic acid tablets after starting them and feeling very dizzy and having horrendous heartburn all night and today and she totally understood . Then she suggested a couple of other options but one was zelindronic acid which has loads of side effects and the other was Prolia injections which has far fewer side effects but as soon as you stop taking it the risk of fracture increases more than before you took it so I’m leaning more toward parathyroid hormone therapy injections now which have fewer side effects than the bisphosphonates . It’s our body at the end of the day not the doctors and it is our right to take or not take a medicine if it doesn’t agree with us .
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