Alendronic Acid

[FirstSoprano]

I have had 2 doses of alendronic acid and am currently experiencing a first painful, now vision- impairing inflammation in my right eye (steroid drops prescribed).. I see this mentioned as a possible side-effect of AA. Has anyone else experienced this?

[Fruitandnutcase]

My vision was one of the things that wasn’t good when I was taking AA for four months. It was blurred and I just felt as if I couldn’t see properly - although I could see. That probably sounds odd but it was one of the many things that didn’t feel right.

I was able to cope by using masses of preservative free eyedrops then after four miserable months I stopped the AA altogether - but I think you need to talk to someone - an optometrist or the rheumatologist or whoever it was who prescribed the AA.

If your eye drops weren’t prescribed by an optometrist who has had a good look at your eyes then I would start with that.

Do you wear contact lenses? It could be anything - dryness, a corneal ulcer, anything. It could be caused by the AA or it could be caused by something completely different.

[FirstSoprano in reply to Fruitandnutcase]

Thanks! Saw two optometrists. Second one arranged an emergency hospital appointment resulting in steroid eye drops with another appointment arranged for tomorrow. Have asked each one (and also GP) if connected to AA but no interest shown. Will take photos of NHS website and ROS website lists of side effects as evidence tomorrow!

[Fruitandnutcase in reply to FirstSoprano]

Well done to your optometrist - at least you know you are getting the best of care.

It’s peculiar isn’t it when there is ‘something’ odd happening to a part of your body but your doctors show no interest.

Found these papers if they’re of any help

medsafe.govt.nz/profs/puart....

modernod.com/articles/2019-...

[FirstSoprano in reply to Fruitandnutcase]

Thanks so much!

[Frodoles in reply to Fruitandnutcase]

It's sad but quite honestly a lot of doctors don't actually know enough about some of the side affects.

[MWZ3]

Another good reason not to take this drug. I have macular degeneration and enough issues with that. I need a needle in the eye for the wet macular which is bad enough without anything else affecting my eyes. These must be the worst drugs on the market because many people can’t tolerate them and they are often counterproductive.

[Mavary in reply to MWZ3]

Hi! I’ve got macular degeneration too. My eyes have deteriorated but I can still see to drive. I know they are getting worse because I can’t read small print. I’m on Denosumab and I don’t think that has affected my eyes. I’ve been on it over three years now with no problems.

[MWZ3 in reply to Mavary]

That’s Prolia, you can’t just go off that now as you’ve been on it for three years. My sister tried it for six months and couldn’t tolerate it and it was the longest six months of her life. At least you can tolerate it. Hopefully, your numbers were bad enough to warrant it but I’ve heard of people who’ve been put on these drugs without justification. You need to have another one of these drugs if you go off prolia as there could be rebound fractures if not.

[Mavary in reply to MWZ3]

At the time I wasn’t aware of it at the time as I was an emergency in hospital when my T12 went and I couldn’t even bear my own weight. I put my trust in the Drs but to be honest my bones have improved for taking Denosumab so it’s not a problem. I have already been told I’m on it for life. I haven’t had any problems with it so I’m quite happy to continue. I have a cousin that’s been on it for about five years now. With no problems. Yes my bones were very bad and I couldn’t take AA. My spine was -5.5 and my hips were -3.4. My spine was on the last Dexa scan -4.1 and my hips are -2.6. So still not good but has improved with treatment. That was in 2020 so I hope it’s improved even more now. The treatment has been good for me but I know it doesn’t suit everybody.

[Raleigh59]

speedy recovery wishes!

Was this from the tablets ? Like 70 mg tablets? Possibly also try drinking a lot of water to help wash away the medicine and detox your body.

[FirstSoprano in reply to Raleigh59]

Thanks! Yes - tablets. Have stopped pending a chat with GP.

[Raleigh59]

I think though a rough road we all will make it through this journey with the best medicines for each of us.

[Raleigh59]

I am a Soprano One too. My chorale is not meting again til August.

[Sowen59]

hi firstsoprano

Yes I had a very bad allergic reaction to AA. I took it for 3 weeks and stopped …. It cause muscle spasms cramp my jaw came out of its socket my teeth became loose…. I struggled to walk upstairs and pain in all my bones and joints was dreadful. I too had blurred vision and bloodshot eyes …. I would get yourself checked out immediately.

I took me nearly 9 months to get over it … good luck

[FirstSoprano in reply to Sowen59]

Good grief. How awful. I had a second hospital appointment yesterday and doc agreed AA likely cause of eye inflammation, although he had to look it up and this side effect was news to him! Advised to stop (which I have) and go back to GP for discussion. A further 2 weeks of steroid drops now.

[Sowen59 in reply to FirstSoprano]

Good Luck to you….. Since dec 2021 and all this carry on I had to retire, I was lucky we had some savings and went away for a few months, during which I changed my diet to a high calcium in take one, continued with my Adcal d3 meds. I have kept this up since then, when the sun shone I would sit in my deck chair and read, went for long walks ect. Yesterday I got my dexa results and my osteoporosis is now osteopenia!!!! Only just but it means I am doing what is right for me I also returned to work only 3.5 days a week but at least I can work again, as I was physical wreak in December 2021. So don’t give up research your options see what works for YOU. Oh also if I had listened to doctors I would have been on Prolia infusions now, which after AA scared me.

Again Good Luck on your journey🙏

[FirstSoprano in reply to Sowen59]

that’s great news. Thanks for sharing!

[MayGodBlessYou]

what's first soprano? i love soprano singing,

i don't/ can't sing soprano myself,

used to sing snippets of tunes here and there

x

[FirstSoprano in reply to MayGodBlessYou]

I sing in the top soprano section of my choir, known as ‘first sopranos’. Lower soprano voices are ‘seconds’.

[MayGodBlessYou in reply to FirstSoprano]

super ☺

and i should've said, sorry for your difficulties with treatments