Alendronic Acid and very achey legs and hips

My dentist knows I am on AA and that has not affected my dental treatment in any way, but generally I do not need more than the occasional filling.

My osteoporosis score was close to the boundary with osteopoenia and the two fractured vertibrae, were high in my thorax and relate to a very bad fall I had 15 years ago, when my feet went from under me when I was walking down a grassy bank and I landed on my back so hard, I was momentarily winded, but felt OK and could move everything when I got up, so although I was excruciating pain for some weeks I didn't go to the doctoe as it all felt muscular and I knew that all the doctor would do would be to tell me keep rested and take paracetamol for the pain

Dolly mixtures. Vit D / calcium is not going to reverse osteoporosis.
I had quite low scores on my first dexa. My rheumatologist repeated it after 2 years on AA and there was a marked improvement in the hip area.
Ihad to stop it last year because of gastritis and moved onto the infusion which is a step up. It's not an infusion of alendronnic acids as some have said it's another drug called Zolendronic acid. The risks are slightly higher but I weigh up the risks associated with broken bones, especially hips in older people and taking the advice of my doctor who specialises in osteoporosis.
My dentist was very helpful, he did say many dentists are nervous about treating patients on AA but he had experience and was happy to treat me.
Is your dental work essential or cosmetic? I wouldn't risk any non essential work myself.

Following a DEXA scan, I was diagnosed with osteoporosis. I’d had no symptoms and any idea although I have lost height. I’ve now been on it for 18 months. I have had two teeth removed and an implant last year and nothing was raised about my taking Ibandronic acid. I need another implant now and the specialist said I should come off it if I possibly can, that it is a ‘nasty’ drug, explained about the osteonecrosis possibility and that it stays in your system for ten years. I’m waiting to see my GP who says I can’t have another DEXA scan yet but she will change the drug. I have a chronic constipation problem so reading your posts, I don’t want anything to make that worse. Injections are worse than the tablets so what can I accept? I take vit D daily but that’s all. I don’t know what to do at all. Any advice?

No, I am the one with osteoporosis. Found by chance, I have yet to suffer any kind physical effect of it, but DH suffers from heart failure and has a heart pacemaker and other problems and takes a veritable 4 course meal of drugs each mornig. Some could have quite serious sideeffects if he didn't take them, and some could have serious side effects if h does take them. But the advantages outweigh the disadvantages, so he takes everything.

My take on Aledronic Acid, is that it is probably doing me more good than harm, so I will take it. I see the dentist regularly and of there is any sign of a problem developing I will go back to her, but it is highly improbable.

I was first prescribed adcal 15years ago by my Rhuematology consultant. I’ve taken disease modifiers since my mid 40’s , 30 years ago. For the past 12 years, injectable biological treatments. Inflammatory arthritis brings other auto immune conditions and osteo arthritis . I have osteo arthritis and osteo pina.
All the meds have endless possible side effects, all listed in detail on the information leaflets enclosed in the packets they arrive in.
I decided 30 years ago that I’d take the disease modifiers because without them the impact of inflammatory arthritis was awful. I’m grateful to the nhs for my care

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?

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 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!,

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 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.

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!

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.

@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.

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

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

Magnesium helps with constipation.

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.

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.

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.

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.

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.

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 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.

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.

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 ❤️