Alendronic Acid and very achey legs and hips

Hi Monica,
Have had osteoporosis since I was in my early 50s 66yrs now. I found out by accident really had a dexa scan while being checked over for something else. I have been on AA for a few years but came off it as I did not find it very helpful. Now on Denosaumb 6 monthly injections, which seems better. I found it was actually the Adcal +vit D that were giving me the aches & pains in my legs. I buy the vitabiotic ones now and feel much better.

Yes JoanH my legs feel like concrete. I have emailed ROS today about the leg pain and will see what they say.
Its so strange some people have no side effects and then others say the same as I do.

I dont want a fracture of course, but I dont want to spend my last years in pain especially as AA may not be doing any good anyway. What a b****r it all is. I have a lot of problems anyway in my life and could do without this on top!

hi - I've been taking it for several years, I take it orally - need to tae with lots of water otherwise quite nauseous, but, excellent news, bone scan recently revealed bone density had improved. Just a wee word of warning to anyone, dental extractions are v problematic if you take AA, partic if you are having injections rather than oral - apparently bone healing is an issue. Never had any joint pain, just nausea, which passed.

I took Alendronic Acid for only 5 months and then was changed to Risendronate. Reason was my gastritis and aching legs and feet that felt as if were made from concrete. I think Risendronate is not as effective as Alendronic Acid but as I have ospteopaenia, not osteoporosis, I am happy to take it. I stopped the Adcal x 2 per day due to the constipation and the fact that it was also a faff to take it. I am on thyroxine so cannot take Adcal within 4 hours so it meant one at midday ( had to remember to take it with me when out) and another at night. Even if I chewed it well it seemed to just "sit" in my digestive tract. Changing to the dissolvable version was no help as I hate fizz so had to beat it well to get the bubbles out. The ROS do not seem to recommend Adcal or similar but a high Calcium diet along with Vit D supplements- which I now follow.

Cardashian123

I’ve stopped taking alendronic acid. The admittedly rare complication of affecting the jaw and needing to see a dentist to monitor it was enough to put me off. I’ve told my consultant.

Exactly. I took Alendronic acid but stopped as my mum took it for years and the bones in her spine were "shot to pieces" according to the dexa scan she had 20 months before she died. If AA didn't work for her, I had no confidence it would work for me.

Cardiac unit apart, they treat my DH and are superb, I do not want to go near my local hospital for any reason if I can avoid it. Over the last few years I have suffered from a major misdiagnosis that the doctor dealing with it, was totally obsessed she was right and would not refer me on. I only got the correct diagnosis - and correct treatment - when I went privately, plus DH having a major heart problem dismissed by A&E, when he finally got to Cardiac, everything went right but it was six months and further serious illness and further deterioration before ambulance men bypassed A&E and took him straight to the cardiac department.

Sorry,all the above is irrelevant to the thread, but explains why I am not chasing anything up at my local hospital. I will wait until the move to somewhere a considerable distance away from were we are now, is complete and I can start with a new practice and hospitals. My osteoporosis is not the only medical problem I have that is mean to be being monitored and isn't.

Considering osteoporosis seems to be so common and there must be many in our age group who have never had a Dexa and probably have osteoporosis currently without knowing, the advice seems so sketchy and variable.

Monica You can request a DEXA scan via your GP. It’s usually every 2-3 years depending on your DEXA scores

I used to have a Dexa Scan every 3 years, but some years ago they stopped doing them and I haven't had one for years .
I think it's part of the cuts the NHS are always doing .

On the subject of Vit D3 you aren't supposed to take it all the time, only take it until your D levels are normal then stop because you can overdose on it . I can't take it because it causes me problems and I need it with being deficient

I’m on CalciD and Raloxifene for osteoporosis and I’ve cut back on the the Raloxifene (not yet informed gp) it’s seems to affect me in the same way, just achy legs rather than hips. I did ask about how I would know if anything was fractured ( A lot of upper back pain) I was informed that you generally can’t tell by pressure on the bony area you suspect.

PS the 1st youngish GP I saw to discuss the Dexa result knew absolutely nothing about osteoporosis, Dexas and treatment. He didnt even say "let me make an appt to discuss with someone who knows a bit more". I had to make another appt myself. He did refer me for a blood test but that is all he did.

The second GP was much better informed to discuss Dexa and b.ood test results, but didnt mention very severe leg pains...which I can read about now on line. But she did say come back if they dont suit you. So I will do that.

Cardashian123. How long were you on AAcid before you stopped?

The ironic thing is, had I not requested a Dexa last year (which was recommended by the cancer nurse following my chemo and then immunotherapy treatment and having leg pains then) I would not be aware I had osteoporosis and needed AA. So I sort of brought all this worry on myself!!!
A cousin of mine resists all medications for any complaint and I rather now agree with him! He is 84.

Monica You can request a DEXA scan via your GP. It’s usually every 2-3 years depending on your DEXA scores.
In fairness I have never seen anyone at hospital re my osteoporosis - and in fact the only reason it was discovered was that one of the side effects of taking Anastrazole was thinning bones so it’s recommended that you have a DEXA scan before starting and then at regular intervals thereafter. The Consultant however, said that it wasn’t necessary and that it was unlikely that I had osteoporosis so refused! You really have to read up on treatments and their contraindications and then fight your corner. Not great when you’re going through cancer treatment. Anyway I saw my own GP and he agreed that I should have one before starting the last stage of my treatment - especially as I had to take it for 10 years and because I was slightly under 2 year post menopausal, Zoladex injections for 6 months. Sorry for the long post - but sometimes you’re just better off seeing your GP. Good luck with everything and I hope your move goes smoothly x

SunshineSally My osteoporosis was discovered when I had a Dexa scan as part of a research project. The local hospital repeated it, when I was referred to them. but as I said I have yet to see a doctor and once the diagnosis was made and prescription had been given, it was 'Thank you and goodbye'.

That was 2 years ago. I am deeply dissatisfied with my local hospital on so many fronts, but we are moving house and out of the area at the moment, so I am hoping that when we complete our move and change GPs I can get several of my supposed medical problems reassessed and monitored.

M0nica

I am on alendronic acid. prescribed for 10 years with no further prescription or advice on anything. I haven't even been seen by a doctor throughout the whole diagnostic and prescribing process. 1 letter, 2 brief phone calls, and an appointment with the hospital physio, who spent the whole visit filling in an online questionnaire. mainlyinformation they already had, then 'Thank you and Goodbye'

I already take Vitamin D and I 'prescribed' myself 2 low fat babybels a day to boost my calcium consumption. Calcium is better absorbed as food.

Blood calcium levels are no guide to osteoporosis levels, as the body prioritises blood calcium over bone calcium. Or so I was told during one of my brief phone calls.

I am not aware of having any side effects from alendronic acid.

Hi Monica
Have you had any DEXA scans at all? If not then I would request one from your GP. I had been on AA which was picked up whilst going through treatment for Breast Cancer 13 years ago. I have had several DEXA scans since to monitor my bone density. On my last recent one my spinal osteoporosis was downgraded to osteopenia so my GP has said I can stop AA and I’ll be reviewed again in 2 years. If I had needed to continue with AA then the GP said he’d need to refer me to rheumatology for a different medication. I still have to continue with Calcichew tablets though. I would definitely seek another bone scan if I were you - just so any changes can be picked up. Take care.

Re the OPs question on achey legs and hips whilst taking AA - I don’t know! They’ve been achey from when I was taking Anastrazole (for 10 years) for BC and I put it down to that. They are still achey now though and I stopped taking them 3 years ago. I’ve only stopped taking AA for 2 months and I’m not sure how long they stay in your system! On my really bad days I just dose up on Zapain. Sorry I can’t be much help.

HelterSkelter1

Mt61. Co codamol does cause constipation. So together with AdCal if that is what she is taking I am not surprised she is constipated. A double ŵhammy.

Did her GP tell her to stop the AA because of her jaw or did she just stop it herself. Has she had any advice from a dentist? All these medications to help one thing and then cause another. In the end you feel like stopping everything!

No she didn’t tell the Gp, much to my annoyance. She just decided to stop taking them, although has the combined cal/vit D, & takes those most days.
I think she has only just told the Gp that she stopped taking the AA & that why she is going for a dexa scan as her hip is sore.

My GP switched my AdCal for CalciD which seems to do the same thing but is only one tablet per day. Neither has ever made me constipated but that may be due to my vegetarian diet. I think I am due for a bone scan but the last one didn't show any problems.

I took AA for two years but stopped after it caused gastritis. I now have infusions.
The risk of fractures and the memory of my grandmother who was crippled by osteoporosis means I want to do all I can
Calcium tablets do cause constipation, I also take two other drugs which cause it. I've learned to manage it with lots and lots of fluid, fibre, all bran and prunes juice.
As to calcium we need a lot more as we get older and even more with osteoporosis. The Royal Osteoporosis website is very informative. It's much more difficult than I expected to get enough calcium in your diet. There's a calculator to work out your daily intake.
Protein is often overlooked, you need more than normal if you have osteoporosis.

I took AA for five years after a scan along with Adcal. Yes constipation a problem and I was prescribed far too much. I only found out when I went on a trial for Vitamin K. The care from my GP was nonexistent after I finished the AA. I now take Vitamin D and calcium citrate. I have no idea if I can get another Dexa scan

I had to take AA for two years when I had Polymyalgia, also calcium and vitamin D because AA can thin your bones.
This was during Covid. I diagnosed myself and never saw a doctor, they just prescribed the drugs and nobody ever suggested a scan so I have no idea what state my bones are in.

I’ve stopped taking alendronic acid. The admittedly rare complication of affecting the jaw and needing to see a dentist to monitor it was enough to put me off. I’ve told my consultant.

Mt61. Co codamol does cause constipation. So together with AdCal if that is what she is taking I am not surprised she is constipated. A double ŵhammy.

Did her GP tell her to stop the AA because of her jaw or did she just stop it herself. Has she had any advice from a dentist? All these medications to help one thing and then cause another. In the end you feel like stopping everything!

HelterSkelter1

Anyone taking AA and having very achey legs and hips.? Apparently not a symptom of osteoporosis in itself, but would be a symptom of a fracture....which I dont think is the case.

Also was prescribed AdCal to take. Caused horrid constipation and I now just continue to take my high dose vit D which I have taken for years and plenty of calcium rich food. Blood test shows vit D and calcium levels normal. Do GPs take any notice of patients saying Adcal is awful I wonder.

Is that those vit D/Cal combined 4000?
My mum has osteoporosis, stopped taking the AA because her jaw was sore that was two years ago. Funnily enough her hip is very painful. Gp has booked her another dexa scan, plus she is very constipated but has blamed the co-codamol (which can cause it). Maybe a combination of the two?

I had an allergic reaction to Alendronic Acid so was taken off it and was prescribed Adcal-D for Osteoporosis. I also take Vit D B12 and Glucosamine. After my last Dexa scan I was diagnosed with Osteopenia which is an improvement.

I am on alendronic acid. prescribed for 10 years with no further prescription or advice on anything. I haven't even been seen by a doctor throughout the whole diagnostic and prescribing process. 1 letter, 2 brief phone calls, and an appointment with the hospital physio, who spent the whole visit filling in an online questionnaire. mainlyinformation they already had, then 'Thank you and Goodbye'

I already take Vitamin D and I 'prescribed' myself 2 low fat babybels a day to boost my calcium consumption. Calcium is better absorbed as food.

Blood calcium levels are no guide to osteoporosis levels, as the body prioritises blood calcium over bone calcium. Or so I was told during one of my brief phone calls.

I am not aware of having any side effects from alendronic acid.

I know it is the Adcal causing constipation. My husband was prescribed them in January by the dietician as he is taking omeprazole as he is on a high dose statin and also steroids for COPD. He also is a very very low weight. So his bones must be like egg shells.
He suffered badly from constipation after taking adcal which just added to his general misery. Poor man. So like me he has reverted to takng a high dose vit D supplement instead.
I am interested in what others say.