Hello. I was diagnosed with Osteopenia and Osteoporosis in 2022. I have had several appointments with a consultant who has now discharged me saying there is nothing they can do. I was supposed to have foot surgery (it’s in both feet but one is worse) but now she has said it’s too late as the bone has already disintegrated. The appointments were sporadic to say the least. I feel a bit lost to be honest and I’m just looking for support from other sufferers – as well as (hopefully!) being a support to other people. I have been recommended to take Alendronic Acid. I’m not one to read “side effects” but without doing so, the one that was pointed out to me by my doctor was osteonecrosis of the jaw. I know this is extremely rare but….! I’ve spoken to a few people who have been on Alendronic Acid and they have really felt very unwell and had to stop taking it. I also realise I may not react in the same way but I’m just feeling extremely nervous about taking this drug.
Osteoporosis: Hello. I was diagnosed... - Bone Health and O...
Osteoporosis
So sorry to hear about your feet. That sounds painful and debilitating. I can't share anything about that but do have experience with alendronic acid. It is so difficult to know the best thing to do, isn't it. It was quite a shock to me when I was diagnosed 4 years ago. After much deliberation I decided to take the alendronic acid but with some trepidation. I had a dental check up beforehand as a safeguard. The first time I took it I experienced a lot of pain in my bones and joints, the worst of it passing after a couple of days. It may well have been coincidentally. The second time I took it there was no pain. I did feel generally stiffer and an underlying ache in my knuckles. This persisted for quite a few months but was a nuisance rather than debilitating. Eventually I stopped noticing it. Again , no idea if it was the alendronic acid. I think you do become highly attuned to your body's aches and pains but you have just been diagnosed or start new medication and may sometimes incorrectly attribute it. Anyway, I took it for three years after which my density had improved by 7% moving me out of the osteoporotic range to the oesteopenic range in all bar my lower spine. I did other things to help to but was pleased with the result of the combination. I have now come off the alendronic acid. I have to say I settled into taking the medication within a month and stopped worrying so much about the affects and diagnosis after about 6 months when it became my new norm. I never had stomach problems, although religiously followed the guidelines for drinking the pills with lots of water and remaining fully upright for half an hour so this may have helped. Good luck with whatever you do. I wanted to share my experience as I too had many worries and an initial bad start but settled into an easy routine and a good outcome. Thinking of you. Good luck, Amanda
Hi Amanda, thank you so much for your response. I genuinely found your experience really helpful. I have a telephone consultation with the doctor on November 1st to discuss going on the medication. I turned it down in February (and last year!) because of the reasons I mentioned but also because I knew so little about it and, as none of my friends/family have osteoporosis, I didn't really have anyone to talk to who would understand my concerns through experience. I thought I was told I would be on it for 5 years and then have a check up - but I may have misunderstood this as it seems a very long time to not be checked. He has referred me to the bone clinic to discuss medications but, of course, 8 months' on I still haven't heard from them. I run my own business and I am on my feet quite a lot. The advice from the consultant was "stop walking" which I didn't feel was particularly helpful but I have tried to rest as much as possible. Some days the pain is horrendous and some days it's manageable. I do Google things to try and find out what is best but I find it quite confusing and nothing beats actually having conversations with people who know what you're going through. At least I found this website by Google, so that is a massive positive. I do feel a little more confident having read your reply, so thank you. Sue
I'm glad it helped. I was told that you have to have a break in the medication after 5 years and then they check every year to see if you need to go back on. They do however scan you after you have been on for 3 years to see how you are getting on and review your meds. That is when they said I was doing well enough to come off.I also changed my diet to help when I was diagnosed and read The Healthy Bones book by Kelly and Kelly for some recipe ideas and information on bone development, plus started weight bearing exercises.
One final thought, consider recording your conversation with the doctor (you can use yoyr mobile to do that) so you can go back and listen to it at your own pace, or get someone else to listen with you to take notes. I have done this before and found it really helpful., along with writing down my questions beforehand so I can tick them off.
Good luck to you. I'll be thinking of you on the 1st November
Why don't you read up about supplements? I was diagnosed like you some years ago, and turned it around with supplements/vitamins. Take a look at Dr Mercola, he makes wonderful vitamins, perfect for your problem and mine.
Hi Margo, thank you for your reply. I really appreciate it. It's something I will definitely look into. I'd never heard of Dr Mercola - I'll have to look him up.
I have his blogs sent to me daily, he really is brilliant, and probably ‘saved my bacon’ Good luck!
hi Livingunderthesea
I have found this on NHS site
“Osteonecrosis of the jaw is a rare side effect linked with the use of bisphosphonates, although most frequently with high-dose intravenous bisphosphonate treatment for cancer and not for osteoporosis. In osteonecrosis, the cells in the jaw bone die, which can lead to problems with healing”.
Hope this helps a bit it understanding the difference between the treatment levels for different conditions.
I have had problems with Alendronic acid with bad headaches and feeling flu like symptoms for about 3 days. So 3 days out of each week i was in pain and took co-codamol which made me very heady. After talking to the Rheumatologist I was changed to Ibandronic acid which is monthly. This was Ok and I tolerated it better.
I think that everyone reacts differently to these medication and I was told to give it 6 weeks to see as often things settle down.
Having a foot with bone disintegrated sounds very severe I guess that you can not walk then?
Hi Mongoose, I've been Googling the jaw problem on and off for a while but, as I'd sort of decided not to take the medication at the start of the year, I'd stopped looking it up. Thank you so much for the info on what mainly causes the jaw issues. Maybe I'm fretting about nothing really! I'm also going to look up Ibandronic acid. You're so right, everyone does react differently and I suppose I'm looking at the negatives rather than the positives. I can walk but most days it's horrendously painful. My left foot is worse than my right but both have their painful days. I broke the middle toe on my left foot and the problems have stemmed from that. The consultant mentioned Freibergs Disease and Bone Edema but now says the bottom of my toe (and something about the metatarsal) has disintegrated. I think I get blinded by the words and information sometimes and so it isn't until I actually have a conversation who knows what I've got, that things become clearer. The consultant spoke quite quickly and seemed keen to move on during our final telephone consultation last week that I didn't really take everything in. Thank you for the information you've found for me, I'm honestly so grateful!
I'm a retired nurse, and am also in the danger zone for Osteoporosis.
I would suggest you buy some Codliver Oil Capsules (high strength), A Glucosamine and Chondroitin supplement, to help your bones also. (I get mine from Tesco or Wilko). I won't pay out the extreme money for the stuff advertised on TV or in Magazines, they are just trying to separate you from your money.
If you can get outdoors during daylight for about half an hour daily it would also help. Daylight helps to convert Vitamin A to Vitamin D, which is essential for bone health. You may also need a Calcium supplement as well. Needless to say, your diet needs to be good. Check with your water Company to see if your local Water supply is hard or soft. Hard water is calcium rich as it is usually filtered though Limestone, so if you have Chalky soil or Chalk Downland you are probably in a good place. Where I live (Wales) the water is soft, not so good. (If your kettle furs up with a chalky deposit, you get hard water!)
These help me to avoid fractures, as I fall often. Exercise is important to keep what bone strength you have. As, if you sit around your body will think 'Aha! Here's some Calcium not being used, I'll grab it for support of another part' .
I also use a four wheel Rollator, which helps me get around, although I am hopefully going to be using a Mobility Scooter soon to get my shopping..
Your local hospital may have a Falls Group attached to Physiotherapy. It's worth going to, if you can get in.
It may also help to join the Healthy Eating Forum here on Health Unlocked.
Unfortunately, It can be exceedingly difficult to get GP appointments; Here I haven't been able to get an appointment in the 5 years I've been here, so I have been using Pharmacists, and opticians for information and treatment options.
I hope this elongated screed may be of some help to you.
Cheers, Midori
Hi Midori, you have given me a lot of very useful information that I hadn't even considered. I'll definitely join the Healthy Eating Forum too. I only joined last night and I'm still struggling to find my way to all these fabulous replies! I've made a note of the suggestions you've made and will speak to a pharmacist on Monday. I spend most of my day outside so, if the sun shines, I make sure I'm out there - not that there's been much of that lately. I wasn't aware of the water difference with calcium. I think we're hard water, but that's something I'll check when I've finished this reply. I've read that weight bearing exercise is good and I'll be looking that up too. Thanks Midori, I really hope that you stay safe and that you get the mobility scooter to help you with your shopping.
It's easy to check if you have hard water. If your kettle grows a white crusty substance, it's hard; if not, ask for a calcium supplement (for yourself, not the kettle! 
)
I was brought up on chalky soil, so I've only this last year lost my first two teeth and my bones are also pretty tough, even at 76!
I'm not in a hard water area any more, so I supplement.
Cheers, Midori
Hi,I was a bit worried about taking alendronic acid for the same reasons as you, but my os was quite severe so had to be realistic, I took it for 5 years with no effects other than a bit ache......I had some dental extractions as well,with no problems.....unfortunately it didn't change my dexa scores so I have to now try teriparatide, lots of people take a a with good results so worth a try.....good luck.
Thank you so much for your reply, I must admit I feel a little less apprehensive about taking it since reading these helpful posts. I am going to look up teriparatide - all these names/words I'd not taken much notice of until now. I'm not very good at swallowing tablets, so I hope they're not huge. A liquid was mentioned if I'm struggling but I think I'd rather get the tablets down if possible. Good luck - I hope your dexa scores improve soon.
Hello Livingunderthesea, I have read the supportive and informative responses to your post and will not repeat them. I just wanted to say that I can really appreciate your anxiety and it is something that many of us experience, often due to the abysmal lack of service provision in the NHS for osteoporosis. I have my own theory about that which I think has to be linked to osteoporosis usually being linked to the older generation of women usually and our profile in the medical profession is diminished. Keep asking and do not give up. I have been waiting 11months for an appointment with the metabolic bone unit although experiencing spinal fractures. I do hope that you get the support and treatment that you deserve.
Hi Ketchican, thank you for your reply. It has been an immense help to be able to talk to people on here who can relate to how I feel. The abrupt parting words from the consultant were "just take the medication"! I'm hoping to have a lengthy chat with the doctor, rather than feeling rushed through the conversation. I was toying with signing up to the Osteoporosis Society and still might but it's been so helpful to chat to people on here who are speaking from their own experiences and who aren't taking a "professional" line of what to do, with no gain other than trying to help. I will ring the bone clinic again, even though I know what their answer will be! I have appreciated all the suggestions and ideas everyone on here has given me - and really thank everyone for the support. I do hope you get your appointment soon, spinal fractures sound awful - and very painful.
Hi Livingunderthesea ,
Welcome to our community, thank you so much for joining us here 
It is so understandable feeling a little lost and uncertain, as you mention, especially when we're trying to consider our options moving forward. It's really important to feel informed when making any decisions about our health, so we wanted to let you know that we have information about Alendronic acid, including the potential side effects here: theros.org.uk/information-a...
We also have specific information on osteonecrosis of the jaw: theros.org.uk/information-a...
As you noted, it can help to be able to chat to people who understand what we're going through, so we really hope you find the support you're looking for in our community
Wishing you all the very best,
Lulu
ROS Moderator
Hi Lulu, thank you! Honestly, coming on here has just been the best thing. I realise medications can have a different impact on individuals, but it's been so good to be part of this community and read everyone's experiences. I'm so glad I found this. I feel more relaxed about things now; I realise that the medication might work and I also realise it might not, but that there are people on here who have been through those scenarios. Thanks for the links, I'll certainly look at them. Thank you again.
Like you I didn't have a clue about the different medications,in fact I was diagnosed and left to get on with it ( different doctor now) this forum is brill with lots of people with great knowledge, the osteoporosis society are also very supportive.....hope you get on OK.
Hello living under the sea,I have just joined the community and don't want to add much,just to say I have had to follow up appointments, phonecards, drugs that didn't happen .you have to be very proactive to get started on treatment nowdays.I hope you are fine on alendronic acid ,I was for 5 years. The follow up scans are key. I think that's where it went wrong for me ,I should have chased it up. All the best .
Hi Freshair24, you are so right. If we don't chase things up for ourselves, nobody else bothers to. We don't like to be a pain or appear to be difficult but I think nowadays we have to be in order to get treatment. I'll give the Alendronic acid a go - I'm still apprehensive but the support and advice on here has been brilliant. Thanks for taking the time to reply - very much appreciated.
Hello Livingunderthesea
Just a comment on the necrotic jaw thing. As you say its rare but worrying. I was very concerned about it as I have a history of having a lot of heavy duty dental work including 3 implants over last 6 years. My dentist was very helpful and reassuring and said its very rare. He also said that risks or even lower if you take Alendronic acid in tablet form and higher for injectable forms (though still rare) I am on the tablet form so that was reassuring. However he did advise continuing high focus on dental hygiene - I do quarterly check ups and am obsessed with teeth cleaning😊 - if at all possible plan to avoid further implants. Incidentally I have no problem with Alendronic tablets - easy to take - no bigger than a paracetamol - not everybody gets side effects. My only concern is having to wait half an hour before I can have a cup of tea!
Hi Narajto, thank you. I found your post reassuring. I have a telephone consultation with the doctor on the 1st November and had already got a check up booked with the dentist on the 4th so they follow nicely. I have serious issues with dental work! I have to have sedation just for a filling! You have also reassured me with the size of the table as I struggle to swallow pills and the doctor told me that the tablet is quite large - seriously nothing positive from him at all!! But.....I can swallow paracetamol so that's such a relief as that was also a huge concern for me. Like you, I might find the hanging around for half an hour a bit tricky 😀. Thanks again.
I too was very nervous of starting alendronic acid tablets, I read up on everything, which can be helpful and scary in equal measures. Now, 2 months on from starting them , I have settled into the routine and am coping OK with them. Whether some of my general remaining aches and discomfort are due to tabs or existing condition I can't tell. I had this level of discomfort before tabs, so I think it's just the life I have to live now. I walk in the mornings, sit in the afternoon, and lie down in the evening to manage my discomfort. I regularly re read downloaded leaflets and information from the R.O.S., these provide me with much needed ongoing perspective. Best wishes on your journey through this.
Hi Again Livingunderthesea
my GP also did big number on 'large pills and some find hard to swallow' but as I say the ones I am on are not hard for me to swallow - 70mg alendronic. Just swill down with a big glass of water. I recognise some people may have bigger tablets or have issues with swallowing anyway but if you don't have that and ever take paracetamol tablets I don't think you will have a problem. I think GPs sometimes prime us to think its going to be harder than it is
Re the dental thing my GP was at fault in not alerting me to the jaw thing in the context of dental work. For all they know I could have been in the middle of implant treatment - I had been a couple of months before! I only found out about it on google. Overall its important to keep dentist in the loop on this I think
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