Did anyone else react to AA

[Sowen59]

Hi I am 62 with osteoporosis, this was diagnosed due Hyperparathyroid problems. Had op successfully removed offending anadoma. Took 4 Lots of AA since then my body seems to consist of a different severe pain every few days, hip, neck ect my Jaw came out the socket and couldn’t eat drink nor speak properly for 2 weeks and still not right but greatly improved. Has anyone else experienced this. No more AA for me. At the moment it’s my hip and back can’t sit nor stand for long, have to lie flat.

[Fruitandnutcase]

I didn’t do well on AA and stopped after four months, I felt very, very tired, I slept all of the day I took it then next day my bones and whole body started to ache, by the time I gave up I had had four horrible bouts of sinus pain - I had antibiotics three times, twice from GP once from the dentist, had a sore right ear, sore eyes, blurred vision, swollen glands below chin and under tongue in my mouth, mouth ulcers, my teeth hurt all through my mouth and my hygienist is always telling me that I have very good dental hygiene I couldn’t walk either without clinging on to my husband and I just didn’t have the strength to do the weigh bearing exercise I needed to be doing for my bones. I felt terrible all the time and just didn’t feel like ‘me’ at all. I was 70 but felt like 170.

The only side effect I didn’t have was problems with my stomach / oesophagus which was the one I would have expected. I hadn’t expected any of the other side effects at all.

I just stopped and told my GP to remove it from my repeat prescription, the assistant at the pharmacy was shocked when I said to keep it because I was giving it up!

Anyway after I should have been on taking it for a year the fracture liaison nurse rang to see how things were going and said I should have contacted them rather than just give up and they would have offered me something different with fewer side effects but it was too late by that time. I felt better and back to my ‘old self’ within a short time of stopping. I really don’t know why they start with the cheapest and probably nastiest of drugs but they seem to do.

I was recently offered a Risedronate infusion and I know it is an awful dilemma, I feel between a rock and a hard place, I wouldn’t take an infusion because if I feel like that again I’m stuck with it for a year. As well as my rheumatologist my physio and another friend who is a physio both think I should continue so it’s a very difficult decision to make.

So yes, I didn’t do well with AA but the other hand lots of people take AA and there are other osteoporosis drugs that are an option so it’s probably worth speaking to your prescriber or phoning the ROS support nurse helpline - the link is on here somewhere on the right - and speaking to them before you make a decision. Good luck, it’s very tough,

[Sowen59 in reply to Fruitandnutcase]

Many thanks for this info, I immediately had upset stomach which lasted 3 days after taking the AA. But the pain in my jaw was horrible and then it just popped out I couldn’t talk eat or drink for 2 weeks it’s slowly returning and I can now close my mouth a little bit. No chewy food though just mashed up stuff. But my hip and back are torture pins and needles in the legs everything I walk like a 90 year old. When I asked if this was connected toAA they said no but can’t give me a reason why I am in so much pain. I gave taken today off work in the hope it’s gone tomorrow as I couldn’t walk around for 15 hours today can just shuffle to bathroom. I also had some of symptoms with my mouth as you did a lot of teeth pain earache which still comes and goes. All my lower jaw and neck was swollen and infected . All very strange . Thank you

[Fruitandnutcase in reply to Sowen59]

I started calcium carbonate and vitamin D a week or so before I started taking the AA and I didn’t feel good with that. I discovered from on here that calcium can upset your system, my GP changed me onto Adcal which tasted ok but we’re just as bad so the fracture liaison nurse and I decided I was probably getting enough dietary calcium and I didn’t need to take it. I bought calcium citrate online and now take 300mg as a daily top up.If I had started the AA at the same time I would have assumed that was what caused my gut problems.

I was originally only stopping the AA until my body felt better - I had had a nasty covid like virus, then the night after I had been out for my first walk I broke my wrist, the plaster came off and I developed CRPS, then I had a shoulder problem where I couldn’t lift my arm.

So after a horrible few months with an awful lot of pain and problems I thought I’d stop the AA and see if I could get myself better - I intended to try again once I felt well and my husband said he couldn’t understand why I wanted to take something that made me feel so ill.

You could try stopping for a while and see if your health problems go away. I’m not sure why you were told your problems couldn’t be caused by the AA- take a look at the side effects mentioned on the patient information leaflet

[Sowen59 in reply to Fruitandnutcase]

I did look at the side effects after I became so ill and could associate with a lot of them. Thanks for your input it’s been a big help

[MWZ3]

I won’t take those drugs anyway. I thought this was about AstraZenica at first lol. I did react to AA for covid but I avoid the drugs for osteoporosis altogether.

[t1gernidster]

After a successful parathyroidectomy you should give your body a couple of years to allow the calcium level to be replaced naturally in your bones. There is every chance that your osteoporosis T scores will improve. This is what I am hoping for. It is my choice not to take the medications offered.

[Sowen59 in reply to t1gernidster]

No ones suggested that to me at all… sounds a good idea I am eating a calcium enriched diet at the moment….. so no more pills for me.

[t1gernidster in reply to Sowen59]

parathyroid.com/

Have a read of this - lots of good information. I wish you well.

[Sowen59 in reply to t1gernidster]

Wow loads of info for post surgery people, MASSIVE thank you I shall read and digest. 👍

[Garfby]

I took five before I gave up with ghastly bone aches and muscle pains. Now trying nutrition and weigh bearing exercises. At least life worth living again!

[Sowen59 in reply to Garfby]

I felt so much better after my parathyroid op, I had energy, could think clearly and focus on things it was a new me. Then came AA and I went downhill fast….. hope to turn the corner soon and get back on top.

[MaggieSylvie]

Hi, I'm 76 with no osteoporosis! However, I do have four spinal compression fractures. When they were finally diagnosed and the painkillers became insufficient, one of the doctors at my surgery put me on AA and Vit D. Very quickly, my pain grew much less, with no side effects, but now, some nine months later, my teeth have become sensitive to cold. I haven't seen my dentist for three years and only found out many weeks after starting AA that we are supposed to tell our dentists before we start taking it. That is my only symptom, but should I bother my dentist?

[Sowen59 in reply to MaggieSylvie]

Yes get a good checkup with your dentist…..I have had loads of problem in the last 12 months..before that I had only had one filling and was repeatedly told I had good strong teeth for my age.

[MaggieSylvie in reply to Sowen59]

Thank you for your advice. I have overbrushed my teeth all my life so they are yellow. I have to take more care of my gums. I will see if I can book a check up. They usually send me a reminder but Covid has changed everything.

[NewBloom]

Hi Sowen59, Sorry to hear you experienced these side effects with AA.I took 3 doses and had to stop, had the sickness, tiredness but also migraines with eye socket and eye pain. Was told it was a severe reaction.

[NewBloom]

I've just read the replies saying about dental. I'm new to this and just undergoing dental treatment. After years of no dental problems and life time good hygiene. It started the week I stared Risedronate. Had a few if the other symptoms some if you mentioned but didn't think it could be connected. Forgot to mention AA also caused me double vision and made my vertigo much worse.

[Sowen59]

I think it’s more the things doctors do not want to admit to with AA . I am sure these ailments pains ect are related to AA and my body’s reactions. I have never taken anything stronger than Ibruefen in my life, now I takeing all sorts to counter the pain ect and I can definitely say it’s not nice.

[Cappuccinobaby]

All of you who are post parathyroidectomy with osteoporosis have a look at hyperparathyroidukaction4change. They offer lots of support for pre op and post op hyperparathyroidism sufferers

[Elaiworthy]

I had a list of side effects caused by AA. I only lasted 4 weeks and it took a few weeks to recover. I had extreme tiredness and fatigue which lasted most of the week, i only felt an improvement the day before the next dose. When I stopped my husband told a a friend “she just starting to get her life back” and that’s how it felt. I do intend to try Risedronic maybe next month.

Other symptoms were, headache, earache, sinus pain, teeth pain, pain across shoulders, ribs all across and down back, hips, elbows, wrists, ankles and calves. Sharp shooting pain in spine and in front of my ear. Sore eyes. Brain fog and vertigo.

My mam had osteoporosis and she used a wheelchair when we took her out and two sticks or Zimmer frame indoors, she struggled to get into a car and struggled to sit in a car but we managed with the help of cushions and pillows. This is in my mind but it’s hard to continue with meds if the side effects make you unwell.

[Sowen59 in reply to Elaiworthy]

Hi so sorry to hear of your terrible reaction. It has taken me nearly 6 weeks to almost get over the AA. Whilst my back, hip and left shoulder is ok, I still get aches in my knees , but at least the swellings going down, but my right shoulder is still painful. My jaw is still out of line and I am waiting to see Maxillo Facial specialist so I still have jaw,ear, teeth pain. I will never take AA again, I have had to give my notice in at my Job as I was constantly ill and unable to walk properly which is no good in the hospitality trade. I still take the adcal and vitd3. After my parathyroid surgery I felt so well, energetic was taking walks playing with my granddaughter going out to the pub life was great again!!! Then AA seemed to just bowl me over completely I get tired easily again now too. You have my deepest sympathy with your ailments as I reacted to AA just like you. AA Should be banned. Or at least closely monitored.

[Elaiworthy in reply to Sowen59]

I’m sorry to hear about your issues with AA.

I’d had a year of exacerbations due to my lung condition and had just started to feel good a few weeks before I began AA it’s was so frustrating.

I want to try Risedronate hopefully there’s less side effects for me. I felt if the breathlessness (which I missed from the list) tiredness, fatigue and vertigo hadn’t been so bad I could have coped with the others.

Hope you get sorted soon xx