Side effects to Risedronate, pain in hips, sore white spots on tongue, numb mouth, dry eyes, swollen stomach. Clearing up now stopped taking it. Referral 4 months away and feel like giving up. Any suggestions? Would really prefer not to take the meds but don't want a painful fracture or loss of mobility either.
Feel like giving up: Side effects to... - Bone Health and O...
Feel like giving up
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Nanaedake
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Sorry you are feeling so rough. I don't know if I ever shared my story with you. Here is the link, apologies if I am repeating myself.
healthunlocked.com/pmrgcauk...
AND were you ever properly checked for secondary causes of osteoporosis?
americanbonehealth.org/bone...
Thanks for the information. I'd like to believe that I'm doing everything right and don't need the Bisphosphonates but I feel worried about risking it since DEXA scans are 5 years apart and in the meantime you've no idea what's happening. I do all the things you've suggested and lots of good exercise including resistance, jogging and various other kinds so feeling very demoralised. If I knew things were improving I'd go without the meds.
That's why I asked if the docs had made sure there was nothing going on which needs correcting before either medication or natural means will work?
Yesterday I was talking to a woman who had been on Fosamx for five years. She stopped a couple of years ago, but started again when she got a spontaneous vertebral fracture. Doesn't sound to me as though the meds work all that well as we know the bisphosphonates stay in your bones for the rest of your life. She should not have had this fracture. I told her to take Vitamin K2. Of course like most people she had never heard of it.
I've been taking K2-MK7 for a few years along with D3 before I found out I had a problem. Lots of checks done but all bloods good. Healthy heart, lungs, nothing autoimmune, no parathyroid problem. No idea why bones not good. Maybe lack of vitamin D at some point in my life, who knows? It's depressing.
That is depressing. I think I mentioned before that it looks like you are doing everything right. Have you had more than one DXA scan? If so, what were the changes noted?
No, only one DEXA and the next one in 4 years. It all seems very ridiculous, taking medicines that make you unwell, not knowing if they will prevent deterioration and in the meantime no way to know if they are helping either. It does seem a very stupid approach to improving health.
Sounds like you should be given another one much sooner than that. I guess I'm really lucky because I was given two, a year apart, and the recommendation after the second was that I have another in 3 to 5 years. The reason to have the first two relatively close together was to see whether the bone loss was happening quickly, or if I took medication whether it was having any effect.
I find the approach to this disease extremely unhelpful, demotivating and tonight it's really annoying me. I feel as though in this day and age of technology there should be better ways to monitor and better ways to treat.
And yes, another DEXA scan would be better than nothing.
I agree with you. I feel this is one of those situations where it was found that money could be made from a vulnerable population. In order to correct this there needs to be a change in medical culture and a real reining in of big pharma. What we really all needed much earlier in our lives was the kind of public information we all got regarding things like exercise, not smoking, ways of looking after our cardiovascular system, etc. I never heard a thing about looking after my bones, only that we gained bone mass to about age 35 and then began to lose it. Nothing about how we could preserve it. I think I was very lucky that in my late 40s I started working a library and this meant a lot of lifting, carrying, bending and stretching! I also a few years before that had taken up walking to deal with midlife depression. But that was sheer luck. Otherwise I'm sure I'd have been much worse off by the time I had that first DXA scan at age 68.
Yes, women's endocrine and bone health has been sadly neglected, I feel. And I agree about Big Pharma. Perhaps women should get together and arrive at better solutions for women's health, not to exclude men of course. It just seems to affect more women. And you're right, nobody ever told young women about needing more calcium rich food at menopause or ensuring adaquate vitamin D3. Or the need to maintain weight bearing exercise. In fact being slightly overweight is protective of bones for women and the NHS advice on low fat diets might be a travesty for women who need the fat content in dairy products to absorb the calcium efficiently. So it could be years of misinformation. Anyway, none of that is going to solve my dilemma. And the waiting list to find out what the options are is 4 months and I really wonder what they will suggest.
in reply to Nanaedake
I'm sorry you are feeling very down with the dilemma of what to do for the best for your bones. It's just a thought, but remember your recent post about the possible effects of anxiety and bone density? And did you read HeronNS' link to a connected view on that subject? I wonder if you had thought it could help you to see your GP and tell him how this is affecting your mood. It may serve to set your doctor to help with the anxiety and get some alternative or faster means of monitoring your bone resorption. You are not alone. We all feel doubt at times, and need reassurance and re-focus.
Nanaedake in reply to
Thank you for your suggestions. But I'm not suffering with anxiety. I'm fed up and angry that this treatment for bones is really, really bad and no sensible alternatives being discussed. I think the whole health machinery has gone horribly wrong. I don't think my doctor is interested in hearing my rage.
I want to walk away from all their horrible suggestions and never, ever see a doctor or hospital again.
Better means to monitor bones would be good but it's not up for discussion referral is 4 months away. All the doc can do is arrange a referral which has been done.
I wouldn't touch those awful bone meds with a 10-foot pole...they should all be taken off the market in my opinion...
What do you advise to prevent serious bone loss? I'm doing all the things advised and live a healthy life, never smoke, hardly ever have alcohol, maybe twice a year in very small amount with a celebratory meal. Do the right exercise get all the right vitamins. Live a contented life, do yoga to keep stress away. So what do you advocate I do?
You will get a lot of good advice on this sight, Nanaedake. I do HRT (Hormone Replacement Therapy) and am 71 years old. My doctor prescribed it for me last year...that will help build back bones...you'll get other suggestions here, though, that might be more conducive to your lifestyle or whatever. I tried a couple of the bone meds...never again. I'll take my chances....
I don't think I can take HRT due to breast cancer in the family and being 10 years or so post menopause. At least I was advised against it. Maybe things have moved on though and new kinds are available? I hope so.
I know doctors still hesitate to prescribe HRT, but my doctor is allowing me to take it. the big study that was done years ago that scared all of us off of HRT, is flawed in so many ways...it has been debunked pretty much...anyway...if you have breast cancer in your family, I wouldn't advise that you take it....
So sorry about the woman on fosomax. All it does is harden old bone which then becomes brittle and can snap at any time. The infusions are just as bad and what the heck do you do if you have a really bad reaction to having 6 or 12 months of the stuff pumped into you in one hit. No antidote that's for sure.
Surprisingly, in the UK, Prolia is still being prescribed despite the FDA warning given out in January 2017 that it has to be a lifetime commitment as leaving it off also can cause rebound fractures. On one of the OP groups I am on with FB, one poor woman didnt know this, left it off last September for a "holiday" and has subsequently sustained 8 vertibrael fractures. My rheumatologist knew of this surprisingly but in any case I would not risk it. Most people are still ignorant about vitamin k2, boron etc. Not that it has done me much good, nor the low intensity vibrating plate I paid an arm and a leg for two years ago. I recently had a dexa scan, actually organised by an endocrine surgeon as he was prettty appalled that five years had passed. Spine has deterioriated 11 percent and hips 6 percent. But just have to press on and hope for the best.
Have you been tested for "secondary" causes of osteoporosis?
americanbonehealth.org/bone...
I have primary hyperparathryoidism so gradually the calcium is being leeched from my bones. So I have been messed about for the last four years and told not to take any kind of calcium supplement. The GP then didnt even notice my calcium was over the range and was encouraging me to chew on those useless Adcal D things which are cheap rubbish, calcium carbonate. It was only when I wrote to a guy in the states who was an olympic runner but developed many fragility fractures so devised his own supplements. He was so helpful and wouldnt take any money but went through all my blood tests each time, told me not to take any of his supplements that had vitamin D (D, calcium and PTH all work together) and to get properly tested. Oh boy that was interesting, found who I thought was a decent endocrinologist, turned out to be the worst plus all the overpriced Spire swindling tests and scans ended up wasting nearly £7k.
Hyperparathryoidism is virtually ignored in the UK, they are so ignorant here. The best place to go for operation is the US where they go by blood test results. Here all that want is positive scans and it is not always possible that a growth shows up on a scan. I have an appointment on Monday with a local surgeon but I hold out little hopes. Even though it is a fairly new private hospital, they just dont have the equipment there or the expertise. There are some clinics in the uk where they do but too far away. Thanks for the link, will have a look.
It mentions having a parathryoid test in the list. I also noticed on their next page this list of lethal stuff, again so many gps dont know about the effects of the ssri's and snri's and in particularly ppi's like omeprazole which taken over any length of time are lethal for osteoporosis.
Have you been in touch with the ROS? I live in Canada so not much use to you, but the ROS is your osteoporosis organization and should be able to give you information to help you. If it is parathyroid my understanding is as soon as that issue is properly sorted the bones start to regain their density.
Have you had a fracture? I have not luckily although tscores are not good. Have given up having the scans because they seem pointless to me when I won’t take the drugs which likely cause the fractures anyway.
I can’t see where you have said you have had a fracture. If no fracture, why take the drugs? What were your last tscore results?
the point of the drugs is to protect bones from fractures in the future -not to repair damaged bones
Yes I agree with you. My mother had various health issues but at the age of 89yrs was still managing to live independently and to be the 'matriarch' of the family. It was after
she had a hip fracture that her health detiorated rapidly and she died a few months later.
I am determined to do all I can to keep my bones as healthy as possible, although having allergies and an illness which makes it hard to exercise doesn't help. We do all we can as individuals. For me that includes supplements and so far two infusions of zolendronic acid. What works for some doesn't work for others.
By the way my mother would go for a walk every day - in spite of partial blindness - until she fractured her hip.
One vertebra, L3 or4 is - 3.5, fractures are atypical, not in spine despite low density, overall score - 2.5 in spine, normal in hip.
I feel for you. Don't be afraid and don't give up! There is so much helpful info from people here(thank you HeronNS!) I went through all the bad side effects of the meds with my Mom and it got pretty bad. She never took HRT and some people here are seeing the hormone related connection now. It certainly is a roller coaster ride. I'm starting Chinese medicine to deal with the hormones and I'll share how it goes here. I definitely went quickly down hill during menopause.
Maybe Traditional Chinese medicine is an option but it's a bit of a lottery as far as OP goes since no one knows for sure exactly what works. Still it's better than doing nothing at all.
Thanks for this, please keep us posted about the TCM. I used it for a couple of years or more and thought it got rid of my OP related aches and pains. I only gave up because of the cost. I didn’t have another dexa though as it was too stressful going to my GP about OP! I now just use diet/exercise/supplements. Would still use TCM if it was less expensive.
Please make sure you are getting genuine product. Chinese medicine is a bit pf a minefield as there can be ingredients not declared. For example some contain steroidds which, of course, give wonderful pain relief, but are not a great idea if you don't know that you're taking them, nor in what dosage.
Have you lost height ?- it was explained to me that when you lose height you stomach becomes squashed and you get what is called osteo tummy - and my loss of height -was 5'1" and I have now lost 4 inches - explains my digestive issues
Ah that must be hard. Is the discs between the vertebra which hade worn or is it bone loss?
Definitely digestive issues can occur from loss of height especially so much.
I am also waivering about giving up Risedronate too. It is affecting my gut ( suffer with IBS anyway) even with a good diet and supplements. I have felt very tired, depressed and anxious. I had an allergic reaction to Alendronic Acid and had to stop that and the only other alternatives left are the bisphosphonate injections or infusions (or Prolia). If you have bad side effects with either of them you can't stop taking them like you can a tablet you just have to live with the side effects. I am really beating myself up over this, I have now ordered Natural Progesterone and I think I will give up Risedronate for a couple of weeks to see if the side effects clear up. It seems that all practitioners are going to tell you is that you have to take these drugs regardless of how bad the side effects are (for some of us).
Thanks, at least I'm not the only one who gets side effects. I can't afford the disabling side effects while working full time. Painful dry mouth, thirsty all the time, unable to sit for more than a few mins due to pain, painful hips, legs, feet, dry eyes affecting vision, migraine its just too much.
I sometimes think that 50 years ago when there were no scans people did not know what was happening to their bones. Horrible for those who suffered bad breaks, but how many of us are worrying or suffering side effects of drugs who would have got by?
in reply to Nanaedake
Have you been tested for Sjogren's Syndrome?, it is an autoimmune rheumatic disease. Dry mouth and dry mouth are the two main synptoms. I have Sjorgen's Syndrome and know exactly how you feel. I only learnt recently that for some of us, that have op, we get dry eyes but like me I had Sjorgren's Syndrome then got op. I understand this condition lowers your immunity and I think that is why we get the awful side effects that other people just don't get.
Nanaedake in reply to
Yes, no sign of Sjorgrens as far as blood tests go but I did read up about it. My mouth and thirst is better since stopping risedronate although the numb mouth returns when I exercise. But last time it went completely when I came off Bisphosphonates but it took a bit of time.
in reply to Nanaedake
How have you been tested for Sjogren's? Unfortunately sometimes the blood tests can read negative. The rheumy I first saw said I was negative, then the next time I saw him he said I was positive.
Nanaedake in reply to
They did all the IG antibodies tests and ordered ANA but the lab didn't do them because no other antibodies present. Is that right or has something been missed?
in reply to Nanaedake
Have you had a Schirmer's test done - that is the end of a filter paper is hooked over your eyes' lower lid. It is a test to find out what your tear flow is, if you don't produce enough tears it is suggestive of dry eyes. Are you under a dry clinic for your dry eyes? When I had this test done that showed I had SS. When you see the rheumy he might say you should have it if he thinks you might have SS.
Nanaedake in reply to
OK, well, the optician advised some very expensive treatment for dry eyes that I couldn't afford but an eye specialist advised self help with eye drops etc. I have got dry eyes but it's not the tears according to the opticians tests. It's the oil production that is lacking. However, it has improved since I stopped taking Bisphosphonates. So the Optician at the dry eye clinic didn't think it was Sjogrens, based on their tests. So, neither blood tests nor tear tests have revealed an autoimmune etiology.
in reply to Nanaedake
Can you tell me the name of this very expensive treatment for dry eyes?. You can have an oil gland obstruction which exacerbates your dry eye condition. If your optician doesn't think you have SS, all the tests have proved negative and your dry eyes have improved since you stopped Bisphosphonates it must be a relief.
Nanaedake in reply to
Yes, it's a relief. I can't remember the name of the treatment but it clears the meibomian glands and its not available on NHS. I still need to use night time eye drops but my vision is much better and during the day my eyes seem a lot less dry and not getting the blurry patches. So I'll just see if it comes back again or not. There could be some other reason entirely other than Bisphosphonates.
Certainly do not consider Prolia, so many in this country are still not aware of th FDA warning given in January 2017 that it has to be a lifetime commitment as leaving it off can cause rebound fractures. I already explained above, this happened when lady left it off for a break last september and has sustained 8 fractures since. Ironically, it was the only thing my rheumatologist was aware of and I laughed when he said at 69 which I was then, that I was too young!! I wouldnt have considered it anyway. I cannot find the original FDA notice which was 2017 but this is a year later and already there are law suits suggested fiercepharma.com/pharma/con...
I have been taking Risedronate for five weeks after having a bad reaction to Alendronic Acid. At first all seemed to be okay but over the past week I have been suffering stomach pains after meals. I enjoy my food and want to eat but suffer after. Have decided to stop the Risedronate to see the difference. In France at the moment will make a GP appointment on return in a couple of weeks.
Your gp might decide to refer you to a rheumy to either have a bisphosphonates (same drug group as AA and Risedronate) injection or infusion, (which would by-pass your gut, if you are having gut probs). I understand that is the next step. I am sure my hair is starting to thin and I am sure it is because of Risedronate as it is listed as one of the side effects, but I am a very small eater so may be that is the reason. If you do have side effects and you are taking a tablet you can stop taking them but if you have an injection or infusion you can't which concerns me. Good luck with your gp, will you let me know how you get on.
I keep on banging on about hydrotherapy, but it works for me. I have found without my weekly sessions in London, I had increased pain - when I moved from London to Oxfordshire, my pain increased because there is a post-code lottery here and cutting hydro is one way to save money. Give it a go - it can't do harm, and you might find it helps enormously with pain.
I do swim once a week but also do adapted yoga, jog gently, dance and do resistance exercise, and back strengthening and have two rest days weekly. I walk 10,000 steps or more every day and my heart and lungs are in excellent health. It made no difference to my pain whether I exercised or not but the pain has cleared up 4 weeks after stopping the risedronate. I always have some lower back pain and had this before starting the Bisphosphonates but the pain on the tablets was constant, more intense and all up and down legs, feet, hips.
Swimming is healthy but not weight bearing, so its good you do all those steps and exercises. Sorry about the pain from the bisphosphonates but good job that you left it off as I doubt it will help you.
I don't know, I'm very concerned about not being able to take them. If lower spine gives way, I could lose mobility, become incontinent, be in great pain and it really doesn't bear thinking about.
It is a difficult one I know, but I have to take that chance. By the way, have you ever had a parathryoid blood test? This should be carried out along with calcium and Vitamin D, all three from the same blood draw. Symptoms list included mayoclinic.org/diseases-con...
Was on Risedronate (Actonel) for 11 years and the heartburn was killing me so I stopped it. My doctor was unhappy and wanted me to go on Prolia. After reading all the side effects I said no way. I quite medication six years ago and feel better but I know I am taking a chance. But I feel like we are all guinea pigs for the drug companies.
I know they've done lots of tests before it's released but I don't think they monitor the side effects people get subsequent to release properly. They can change the excipients once it goes to generic production so side effects from those in combination with the active drug are not properly tested.
I'm worried they'll suggest prolia which I will refuse.
Glad you have had no repercussions in the last six years from the actonel so that is good. and Good that you refused Prolia as evidently your doctor hasnt a clue about it fiercepharma.com/pharma/con...
I wanted to add to my message above that you should not give up. It's easy to feel that way though. The doctors don't seem to know much about osteoporosis and what we need is doctors that specialize in it and guide you in the right direction. You have to do talk to your doctor and get the facts and then do what you feel is right for you. It's hard but we are basically on our own with this disorder.
Hi sorry to hear you are feeling so low.
I have to admit that I myself have been suffering also with very low mood.
Fortunately for me though I am just beginning my 2nd week of a month away in the sun spent with our son and family.
I am wrighting to you because what you are describing in your mouth sounds like oral thrush.
I had this for 3 whole years whilst on ibandronate, then again when I went back on ibandronate 2 years ago.
In between these times I was free of it.
Recently I have been treated yet again for it whilst on Prolia.
These treatments compromise the immune system, and I am convinced that they were responsible for my oral thrush.
Oral Thrush can get into the Gullet (I had the camera down and was diagnosed with invasive thrush)
Oral Thrush can make you feel depressed and you need to get it treated by your GP as quickly as possible.
I suffered miserably with it.
Like you I am fed up with the treatments, 15 years I have been round the treatments and now it looks like I am going to have to have ibandronate yet again.
I feel very much like not continuing with more treatments, but am very afraid of more fractures, the pain is the worst I have ever felt.
For now till the end of October I am off any treatment, a good diet, plenty of sun and great company is my best medication nothing else beats it.
Try to find quiet time for yourself doing the things that make you feel good.
Above everything else for now make an appointment and speak to your GP about how you are feeling.
Take care x
They ruled out oral thrush, they are tiny ulcer like painful white spots. I get one at a time but with the general tongue pain and numb mouth it's pretty horrible. I didn't have a camera down my throat though so maybe somethings been missed.
I have just been prescribed Risedronate. Initially on Alendronic Acid I had such a bad stomach reaction that I asked for it to be changed. Decided not to start taking until system is back to normal (10 days so far). My stomach is swollen and physio said that my spinal fracture is affecting the stomach muscles. I know I have lost height so maybe stomach is squashed. Feeling very unsure of everything. The only face to face appointment so far has been with physio. We are in France at the moment but will certainly book a face to face appointment on return.
How does a fracture affe t stomach muscles I wonder?
in reply to Nanaedake
If you have a compression fracture, as I understand it inside your body (putting it very basically) gets compressed and that is why people get digestive problems. You can have silent fractures that you don't even know you have until you have a bone density scan which shows the fractures.
Nanaedake in reply to
I suppose your stomach wouldn't go back to normal when you stopped taking the OP medicine then. My stomach has nearly returned to normal, just still a bit sensitive but no longer swollen now I've stopped the meds.
I don't think I can deal with a swollen stomach. I can't exercise comfortably and maybe the swelling is what's causing all the joint pain. Pressure on my hips and top of legs putting pressure on nerves. It's too horrible because I can't sit in a chair with comfort when all swollen with painful hips.
When you say your tummy is swollen is that the same as being bloated? Sometimes my gut is so distended it looks like I am 6 months pregnant. My gut is intolerant to many foodstuffs and stress. If I were you I would go back to your gp and tell her/him about your side effects. I know how debilitating the side effects can be.
Redwind in reply to
I get bloated after eating but at other times my stomach just feels solid and I can’t pull it in.
in reply to Redwind
When I am stressed, which seems like all the time at the moment, my gut just flares-up. My tum gets very bloated and the last time I saw the gastroenterologists, I showed him a picture of my bloated tummy (not a pretty sight) because it isn't always like that. I didn't want to have a colonoscopy, and opted for tummy scans, because the gastro said he would be very surprised if they found anything, because of the symptoms I was displaying. Do you have IBS or any other gut condition or is it since you've had op? I don't know whether it is stress or bisphosphonates
Redwind in reply to
I do have IBS so it could be that although since being told I have OP I don’t get the pain with it that I used to. My stomach makes horrendous rumbling noises at times. Will probably start the Risedronate after the weekend. Hopefully less side effects than the Alendronic Acid. As I said in a previous post, I haven’ had a face to face appointment with a GP only a telephone call. Will book an appointment on return from France and have lots of questions ready.
in reply to Redwind
My gut also makes some terrible noises, grumbling, spluttering, gurgling and it feels as if it is churning. When it flares up I just don't want to eat anything - it really is a vicious circle because if I don't eat properly I get more run down. I had an allergic reaction to AA, tried it twice and got an allergic reaction both times. I think probably Risedronate is the best of the op drugs bunch. Will you let me know what your gp says to you pls.
Redwind in reply to
Will do but will be a while as we are in our mobile home in France until 9th November. In the meantime just hoping my stomach will settle down. Thankfully I can still eat although get full quickly.
Yes, I told the GP and they've referred me to the hospital but I'm not at all confident about our hospital and don't think I'll get good care judging by previous experience. The GP checked bloods and sent me for X-ray but nothing showed up to give me any pain. No arthritis of any kind.
Yes, I would describe stomach as bloated, it sort of sticks out at an angle and then is swollen right down to the tops of thighs but it probably wouldn't be noticed by other people.
They'd just think I had a bit of middle aged spread.
youtu.be/4P5caS0xf20 Hope this works
That’s a good watch ,I’m still debating about taking op drugs. To me a bone is a living thing like skin hair and nails, they are growing and repairing all the time so why not your bones if they are fed the right food. Vitamins and supplements .
I don't think it entirely works that way for women post menopause due to the drop in estrogen. All the vitamins and calcium in the world might not restore lost bone. It could be simply impossible.
Normal aging bone loss is one or two percent a year even with healthy diet. With exercise it might be possible to reduce the loss somewhat but if bone density is already very low then it might be physically impossible without the help of bone building drugs.
Thanks. If only everyone knew how dangerous these drugs are.
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