Help! Is it the AA?

[Blue-skies]

Hello everyone. What a great forum!! I am a 56 year old woman. I have recently been diagnosed with osteoporosis after breaking my elbow last December. I suspect that this is from my menopause (I was 43). I’ve had a horrendous menopause but was starting to feel much better last year but then I fell. My GP has prescribed AA and I was quite happy to take it. I don’t take other meds but vitamin D B12 and evening primrose oil. I’ve always had a good diet, rarely drink alcohol or fizzy drinks. ( I love chocolate 😜) I walk, go to the gym and do some light/ moderate weights. I’ve alwzys been very relieved that I have never suffered aches and pains. My problem?? Since taking AA ( I’m six weeks in) and the past week I am in considerable amount of pain in my hips and legs in particular. So much so it’s keeping me awake. I feel like I’ve been battered with a sledge hammer. Could this be the AA? Any thoughts would be greatly appreciated Thank you

[Met00]

One of the possible side effects of AA is bone pain so, yes, it could be due to that. However, you also need to rule out other possible causes. I suggest you stop the AA for a couple of weeks and see if the pain subsides. If it doesn't, you definitely need to see your GP. If it does, it could well be a side effect of the AA, but you could start taking it again just to see if the pain returns. Alternatively you could skip all that and go direct to your GP! There are other drugs they can prescribe.

[Blue-skies in reply to Met00]

Thank you for taking the time to reply😀

[t1gernidster]

You sound very healthy! Have you been tested for hyperparathyroidism? It is so often missed and medication will not help your osteoporosis until this has been treated, in fact some sources deem it to be detrimental.. A simple blood test for calcium level from your GP will given an answer.

[Pinklady45]

Agree with Met00, try a months break and see if hip pains subside. Have a chat with the Nurses on the ROS helpline, they are always a source of good advice. I have recently changed from AA which I took for 20 months to Risedronate and although only five weeks in on R am feeling less pain in my hips and lower back. Even though I have started more exercise!

As I am 75 I had kind of accepted that aching bones was part of general ageing but perhaps not! I am also on EPO so that may be helping as well. I am afraid that like a lot of these things and life in general we just have to try and find out what works best for us.

Do keep the Forum updated on your progress, good luck. Keep positive.

🌞

[Pinklady45 in reply to Pinklady45]

EPO is Evening Primrose Oil Supplements, sorry should not have used shorthand.❤️

[Nuthatch in reply to Pinklady45]

As a keen fan of pro cycling especially the Tour de France my eyes did pop a bit at EPO - till I realised what you meant 😂

[Pinklady45 in reply to Nuthatch]

As someone who loses my Husband for at least three weeks each year with Le Tour, not to mention the Giro and all the others I should have been more careful! The living room cutains are shut for most of the summer whilst he gorges on what ever cycling is available! At least I get peace and quiet! 💗

[Blue-skies in reply to Pinklady45]

Thank you for your reply.

[veriterc]

I am only a patient, but I found hydrotherapy very soothing and helpful with joint pain - no idea how I got this but it seems parr for the course! If you live in Europe etc. its probably very easy to find hydro pools and give them a try. Not so easy in UK - but there are some NHS ones so good luck!

[Cappuccinobaby]

Get your GP to check your calcium. I tell everyone diagnosed with osteoporosis to get their calcium checked...........possible hyowrparathyroidism but calcium needs checking 1st x

[Fruitandnutcase]

Boy do I know that sledge hammer feeling!

I didn’t get in with AA at all. The bone pain in one hip and in the bones I broke were the worst, I was so tired,I used to sleep all day the day I took it, gradually my teeth all hurt, my mouth felt awful, my eyes hurt, my vision was blurred, one ear hurt, my sinuses hurt, you name it and it felt awful, finally after I had four prescriptions for antibiotics for sinus infections in the four months I took the AA for I decided I just had to stop for a break, I just wanted my body to feel better because I had felt so bad for so long. I had had what I we are pretty sure was covid over all Christmas and New Year 2019/2020, it was before it was widely known what it was and we live in an area where there are a lot of Chinese visitors and workers. I had only just got out of bed a week after New Year having recovered from that, in fact it was the night of the first walk I’d had since December 20th when I broke both bones in my wrist, then when the plaster came off I discovered I had developed CRPS which was just SO dreadful. By this time I had started in AA and I was really miserable and a shadow if my former self - up until then I was very fit and active and very outgoing.

I’m 72 but I felt like a very elderly geriatric, I could barely walk outside without clinging to my husband, the whole ‘gloom and doom’ talk all about co morbidities etc when I met the fracture liaison nurse and the awful prospects for me if I didn’t take the AA made me feel as if my life was as good as finished. I felt ill and scared taking AA and scared to stop.

In the end I stopped taking it to give my body a break and try and get myself feeling better again but I felt so good when I stopped - I was back to my normal old self with an interest in life again and loads of energy - that my husband asked why on earth was I even thinking of re-starting something that had been making me feel so awful and I realised he had a point so I haven’t gone back on it. Weirdly enough the only thing I didn’t have was the gut problems I half expected.

The fracture liaison nurse said at my annual phone consultation I should have contacted them and they could have given me something with fewer side effects but to be honest I’d had enough by then. I just can’t see why they start you off on something that is very likely to be so hard on you.

So now I’m on weight bearing exercises,a bone friendly diet and vitamins and minerals.

However there are two sides to every story and you’ll find a lot of people on here take AA with no problems at all and would tell you a totally different story. I’m sure if you contact your fracture liaison nurse or whoever prescribed the alendronic acid for you they will be able to change you onto something else.

[Blue-skies in reply to Fruitandnutcase]

Thank you for your reply. I’ve only been taking it for 6 weeks. First 4 no problems but last week and this my hips and legs are screaming at me. It’s no joke when I work full time and not slept at all some nights. I get some heartburn and I’m so constipated!! I’m also so worried about not taking it. I’m going to stop taking it and ring my GP in a couple of weeks. It’s bonkers that something that is supposed to help your bones gives you excruciating bone pain!

[Fruitandnutcase]

Yes, it’s amazing isn’t it that something designed to help your bones can make your bones hurt.

You could speak with the ROS nurse on their helpline. If you are getting heartburn then that’s not good, neither is the constipation.

Are you taking calcium and vitamin D? I started on one called Acrette the week before I started AA and I discovered it really upset my gut - I tend towards IBS - I spoke to people on here and discovered that calcium carbonate can do that.

My GP changed me onto Ad-Cal which tasted nicer ti take but had the same effect. In the end I worked out along with my fracture liaison nurse that I was pretty much getting enough dietary calcium not to take any more. I did but some calcium citrate tablets and I take one a day just to boost my intake but I eat an awful lot of kale and other calcium containing green leafy veg. I also eat oranges, almonds, figs and other calcium containing foods from the ROS calcium containing foods list - you can find that on their very good website.

I was just lucky that I started calcium and vitamin D a week before I started the AA or I would have blamed it. Like I said the side effects I had with the AA were everything but heartburn.

[Blue-skies in reply to Fruitandnutcase]

Thanks again. I think I’ll have s chat with the nurses as you suggest. My mouth is sore today. Ulcer and tender areas. I have a fairly good diet. I have milk, yogurts, cheese, almonds, lots of veg, fruit and salads. I do like the naughties though chocolate (it’s got milk in, hasn’t it!?) and the occasional cake and biscuits. I don’t drink much alcohol....would like to but since my menopause I find it just doesn’t agree with me!! Thank you for taking the time to reply. It’s like having my own therapist lol

[Blue-skies in reply to Fruitandnutcase]

Oh yes and I do take vitamin D

[Fran57]

Hello.I would definitely recommend you have a blood test to check your parathyroid levels….nothing to do with the thyroid.

Mine were high and the doctor told me that no amount of medication for osteoporosis would have made a difference, whilst I had hyperparathyroidism.

I have not taken any medication at all and will have a repeat DEXA scan in the next few weeks to see how things are since being treated for the hyperparathyroidism.

Stay safe,

Fran 😉

[Hidden]

I was started on AA following a diagnosis of osteoporosis and a fracture in one of my vertebrae in my spine. Within one month I was suffering from horrendous hip pain, elbow and wrist joint pain and finger joint pain. It was so bad I could not function properly, needed help with everyday tasks and could not sleep.I stopped taking the AA and those joint pains disappeared. I’m currently waiting to be seen by the ‘Metabolic Bone Clinic’ at my local hospital to see what alternatives there are.

I hope you get the help you need and feel better soon.

[Blue-skies in reply to Hidden]

Thank you for your reply. It it very much appreciated