Alendronic Acid and very achey legs and hips

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.

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.

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.

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 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.

Alenronic acid didn’t suit me. Izvestia 6 monthly self injections. Bit pain at first. Took paracetamol and inbuprofen. Now settled. No side effects and injection very effective. Good luck ❤️

I mentioned ROS before. The have a helpline staffed by specialist nurses. I've rung them a couple of times because, like others I wasn't given much information despite being diagnosed by my rheumatologist.
They were exceptionally helpful and knowledgeable. I would recommend anyone with questions to ring for a chat.

I have had three alendronic acid annual infusions, I was just told to take calcium tablets. I take a calcium supplement, vitamin K2 which helps calcium absorption, vitamin D3 and boron daily.

HelterSkelter1

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!

I am just wondering if you are on Anastrozole? I was put on it after a lumpectomy to remove a tumour in my breast, it caused terrible pains in my legs and feet and although I was supposed to take it for five years I came off it after two and a half years. I honestly think the Anatrozole which is an oestrogen blocker contributed to the osteopenia I was subsequently diagnosed with.

If you have such generalised aching speak to Dr to make sure your symptoms are not caused by Polymyalgia Rhumatica. I'm in remission now having tapered Prednisolone and being maintained ache free on Methotrexate. I take AdCal too with no side effects. I wish you well.

Jane43

HelterSkelter1

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!

I am just wondering if you are on Anastrozole? I was put on it after a lumpectomy to remove a tumour in my breast, it caused terrible pains in my legs and feet and although I was supposed to take it for five years I came off it after two and a half years. I honestly think the Anatrozole which is an oestrogen blocker contributed to the osteopenia I was subsequently diagnosed with.

I have wondered that, too Jane43
Funny that no-one ever mentioned that Arimidex could cause problems all those years ago.

No I am not on Anastrozole. It's Alendronic Acid.
I am waiting for ROS to reply to my email.
Strangely 5 days after the 2nd AA tablet my limbs and hips are not so achey.
I wonder if this is how it will be pains for 3 to 5 days then none till the next tablet.

No I am not on Anastrozole. It's Alendronic Acid.

Anastrozole is a different medication altogether. It's an oestrogen suppressant and we are wondering if it has been the cause of osteoporosis or, in Jane43's case, osteopenia.

I have been taking Alendronic acid for two and a half years following a Dexa scan which diagnosed osteoporosis. I used to feel fit and healthy and would do a regular four mile walk without any aches or after effects. Since then I have added targeted strength training to try and help with my bone density (as a result of independent research as NHS advice non existent). I now ache a lot in the hips and legs, especially when just pottering around, but not usually when actually walking or exercising. I persist with the exercise as I think it is necessary, but I am also wondering whether the aching could be a side effect of the drug, as I used to feel so much better. I also take the calcium and Vitamin D supplements; no problem with constipation, perhaps because I also try to 6-8 prunes daily, which is advised for osteoporosis.

Magnesium helps with constipation.

Granpammy As my Tai Chi instructor said this week, if any regular exercise you do causes you constant aches and pains, then your body is telling you not to do it. The reason I do Tai Chi is that it is a gentle form f exercise and as the late Dr Michael Mosely measured and showed is as good for our heart and bodies as a Zumba session

I am not sure why you think NHS advice on exercise is non-existent. I have just looked at their 'help sheet' on osteoporosis and it quite specifically refers you, with a clickable link to the extensive advice to be found on the Royal Osteoporosis Society site

I have had a very helpful email back from ROS.

They basically have advised to give AA a little while longer to see if it calms down. It can do after 6 to 8 weeks, but if still a problem go back to the GP who may prescribe Risedronate one of many osteo treatments as although it is the same family as AA it has slitghly different ingredients.
They said as I am going to be on something for several years, it's best not to "put up" with discomfort. They said the more common problem with AA is gastric problems.
I had to wait a couple of days for the reply but that was fine. It was synoathetic and helpful.
I also joined ROS and as a member and get regular newsletters and a very informative
book.
Also on their site I watched an information video about possible dental problems. The upshot being problems are pretty rare.

Thank you for your replie.s
Thank you for your replies

@helterskelter.
ROS do a very good telephone helpline as well. I spoke to them before deciding whether to take bisphosphonates. I also went to see my dentist who was very knowledgeable and reassuring .
I already had joint pain as I have osteoarthritis and rheumatoid arthritis so I don't know if I had and extra pains from AA. I did however, get gastritis,but not until I'd been taking it for a year.

Interest discussion! I was prescribed Alendronic acid this week by my GP as I have polymyalgia rheumatica. I’ve been taking prednisolone for three weeks. Reading the leaflet on AA , I am quite worried about taking it so soon after my diagnosis of PMR. I haven’t had a bone scan so presumably the AA is in anticipation of steroid issues. Feeling confused and worried as I have GORD already and don’t relish anymore gastric issues.

This has been the most informative thread, Why, oh why, don't doctors tell us about the s ide effects of their prescribed medication.

I take Letrozole (similar to the Anastrazole mentioned earlier). I can barely walk due to the muscular pain in my legs. It is absolutely excruciating - I can't even get to the other side of the garden. I read the leaflet in the Alendrolic Acid packet and refused to take it. I have so many other side effects from other medications, I really could not cope with any more. I accepted AdCal!

I could not understand why my oncologist was asking me about AA and AdC. Now I know why. Any reason why he could not tell me?

I also read on the NHS website that these inhibitors should not be taken if the patient has cardiac issues, as they can cause a heart attack or stroke. Er, um - I had a heart attack two years ago!

I don't know who to believe any more. I think I get more sense from GN than the flipping medical profession!

I also get achey legs & hips. It does improve with excercise, worse at night & deteriorates during the day.
The upside is that I've recently started horse-riding again, which used to make me ache the day after specially if the horse was a bit broad in the beam. Now I never get "saddle sore". I expect the pain receptors for my leg muscles are burnt out!
The weird thing about mine is that it's pollen dependant - in the coldest, barest days of winter I have no problem. Now - despite anti-histamine it's pretty constant. Anyone else with this, I would love to hear from you. The GPs are stumped & as it goes away in the autumn, I'm not keen to be taking steroids. Paracetemol doesn't touch it, ibuprofen takes the edge off, turmeric does help.

Steroids and breast cancer drugs which suppress oestrogen can have the effect of thinning bones.
You have to balance risk.
My breast cancer was not ER+ so I avoided the tamoxifen and anastrazole but I had to take steroids for a while for rheumatoid arthritis. I have a huge family history of osteoporosis and didn't want to take steroids but was desperate during lockdown. Of course it's easier to start them than to stop. Probably took me a year to wean off them.
By the time I had a dexa scan I had osteoporosis. Of course it could have happened anyway.
The gastric problems with AA came on slowly but escalated after I took ibuprofen. Eventually I was switched to Zolendronic acid which is the infusion version of AA. It's a slightly higher risk of jaw problems but obviously kinder to the stomach.
I take the view that it's worth a small risk compared with the potential risks of broken hips etc

I was on alendronic acid for over a year, until I found out a possible side effect condition where the jawbone loses its blood supply and the bone tissue dies.

NHS site says: “ Can cause flu-like symptoms, such as aching muscles, generally feeling unwell and sometimes with a high temperature – this is more likely to happen when you first start taking alendronic acid
a loose tooth, mouth sores, or swelling or pain in your mouth or jaw – contact your dentist as well as your doctor, as this could be a sign of damage to your jawbone
pain, weakness or discomfort in your thigh, hip or groin – this happens rarely but may be an early sign of a possible broken thigh bone.”

Suffice it to say I’m no longer on it!,

Cardashian. If the risk of this jaw problem, which is very very rare is enough to stop you taking Alendronic Acid, I assume that you do not take any drugs at all, not even paracetamol, or any cough medecine because all of them have the most terrible very rare side effects.

My DH takes many drugs, many of which have very rare side effects just as nasty as the one that comes with Alendronic Acid, yet he keeps taking the tablets, without ever suffering from these rare side effects, because if he didn't take them he would die from his heart problems.

M0nica

*Cardashian*. If the risk of this jaw problem, which is very very rare is enough to stop you taking Alendronic Acid, I assume that you do not take any drugs at all, not even paracetamol, or any cough medecine because all of them have the most terrible very rare side effects.

My DH takes many drugs, many of which have very rare side effects just as nasty as the one that comes with Alendronic Acid, yet he keeps taking the tablets, without ever suffering from these rare side effects, because if he didn't take them he would die from his heart problems.

I know there are risks with all drugs and I do look them up when they’re prescribed. I’m on a lot of medication believe me, because I have interstitial lung disease.

I also want to come off steroids due to weight gain and increased appetite and my medical team have okayed this and have put me on mycophenolate instead and I’m weaning off steroids.

My consultant had no problem about me coming off alendronic acid because I find that admittedly rare side effect unacceptable. Instead he’s given me calcium tablets.

Is your husband suffering from osteoporosis then, because that’s why they were prescribed for me?