First dose of AA

[Joey2013]

I took first dose (70g) and 48 hours later can hardly walk with acute rib, hip and chest pain. Cant believe how debilitated I am and the pain is intense, does this settle down ? Low vit D and iron levels too which are being addressed by GP however cant go on like this. Any advice gratefully received!

[Fruitandnutcase]

I had similar - everything hurt even my teeth I pretty much lost the will to keep going and felt so awful that I gave up after four months.

I’ve since been offered infusions, I wasn’t keen because I felt that at least with a weekly pilll I had bern able to stop - there was nothing I could do once a whole years worth of infusion was in. The doctor who suggested I had the infusion at least grace to say that she couldn’t guarantee that I wouldn’t feel just as bad with infusions so I declined.

I suppose a lot of it depends on your T scores. If you don’t mind you could post them and see what people say.

The thing to watch out for if they offer you alternatives such as Prolia - is that if you don’t get on with that then to avoid rebound fractures you must go onto a relay drug as soon as you stop it and that will most likely be a bisphosphonate like AA.

I should add that my physio and my Pilates teacher who is also a physiotherapist and the two rheumatologists I’ve seen were shocked that I’d stopped the bisphosphates and all disapprove of what I’ve done. I also have a couple of friends who have infusions and are perfectly well on them - one has just started a ‘drug holiday’ after taking them for three years and can’t wait to get back on them again - if they have any side effects they don’t notice them.

[Joey2013 in reply to Fruitandnutcase]

Thank you so much for your reply. I truly appreciate it and note your comments. I’m with the GP on Friday so I’ll see what she recommends but like you, I can’t cope with this! Thanks again

[Joey2013 in reply to Fruitandnutcase]

I also have secondary fibromyalgia so that may have impacted on the severity of the side effects.

[MWZ3]

I’d address the low vitamin D level and other vitamin and mineral deficiencies before I took the drug. It depends on your tscore results too. What are they?

The cause if fixed might mean you don’t need the drug.

Magnesium and vitamin K2 are also important. The latter aims the calcium into the bones. There are also foods that help like yoghurt, leafy greens, prunes, avocado, basically a healthy diet in other words. Make sure you getting enough calcium as well.

Walking is good too if you can manage it because it’s weight bearing.

You need to know your tscores.

[Joey2013 in reply to MWZ3]

Thanks all for your kind replies. It's really great to know you're not alone. My T levels are as follows: AP Spine L1-L4 = T -1.5 and Total Hip = T- 1.4 . Apparently translates to 17% chance of major osteoporosis fracture and 3.5% of hip fracture in next 10 years. Does any of this make sense? I am baffled by T levels!

[HeronNS in reply to Joey2013]

My T-scores were not as good as yours and my risk of fracture was calculated as 10% within 10 years. This included other risk factors. Do you have other risk factors, because your t-scores are not bad at all, assuming you are not a young person!

By the way I never took any bone medications. Nearly 8 years since that first DXA score I seem to be fine. I did improve my t-score in the first year but haven't had a third DXA scan. Risk factors included age, previous fracture (I dispute it was a fragility fracture) and taking low dose prednisone for a chronic condition.

healthunlocked.com/pmrgcauk...

[Joey2013 in reply to HeronNS]

Thanks. I have osteoarthritis but control it without meds. that's about it really but heartening to hear you're stable. I've had a vertebrae fracture on T12 with no known cause so I think that's why they're being cautious.

[HeronNS in reply to Joey2013]

Yes, that makes perfect sense. If you'd had some sort of accident which could have caused the injury that would be another matter. But I hope they have also assessed you for "secondary causes of osteoporosis". That's important to do before taking any meds as the treatment may not work if there is something else going on which needs to be attended to first. Good Luck! 🍀

osteoporosis.ca/medical-con...

[MWZ3 in reply to Joey2013]

You don’t even have osteoporosis so you should not be on drugs for a disease you don’t even have. Unbelievable!

Just go the natural route and there’s plenty of good advice for doing that on here.

[Zumbablue]

I had the same problem with mobility. It does improve over time but the effects were so debilitating I refused the second infusion and now give myself a daily injection. Apart from weight gain, no adverse reaction. Hope you improve sooner rather than later.

[Joey2013]

Thank you, much appreciated, back at GP tomorrow so hope to get some resolution/suggestions.

[Ludovic4]

Hi, your scores don't seem that bad. Like many others I have declined drug treatment as already take several drugs that I have no choice in taking. Diet and exercise I hope will help me. My spinal score was - 2.7. I thought generally above - 2.5 didn't necessarily mean drug intervention but I know there are many different approaches. I am sorry you have had such a bad reaction and I think that you have probably made the right decision in stopping the drug treatment. Hopefully you can find a more satisfactory solution.

[Joey2013 in reply to Ludovic4]

Thank you

[Sowen59]

yes exactly the same reaction as me…foolishly on GP recommendations I continued with next dose of AA…..that nearly killed me. It took me nearly 12 months to recover and I still get breathless walking up stairs. I never use to. Think very carefully before you continue.

[Joey2013]

goodness I’m so sorry to hear this . Thank you for sharing and I hope you feel stronger soon.

[Joey2013]

Hi all

Thanks for your replies and support, it was invaluable to know that what I was experiencing wasnt unique to me. I went to GP on Friday , took three days to get back to normal after 1 tablet, who told me to stop taking the AA immediately as I clearly had a severe reaction. Think infusion may be the way to go with me which I am advised may leave me feeling 'flu' like for a week or so but it will ease, then its over and done with for a year. Also identified low in magnesium and folic acid so on prescribed supplements for this now as well as vit D and calcium. GP contacting Rheumatologist to determine next steps. Thanks again and keep you posted.