A Few More Weeks: I’m struggling with... - Bone Health and O...

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A Few More Weeks

Elaiworthy profile image
23 Replies

I’m struggling with the side effects of Alendronic Acid, the hardest to cope with is the tiredness it’s overwhelming. I take my tablet on a Wednesday ( I’ve just taken my 4th) and I just sleep. I spoke to my GP the previous two weeks, shortness of breath - given steroids and then stomach pain. Today spoke to GP again due to the tiredness which lasts 4 days. Each time I’m told a few more weeks and symptoms may ease. I’ve decided this is the last few weeks, I may not manage that. Has anyone else’s symptoms eased.

I’m at the point where it takes me half an hour to persuade myself to take the tablet.

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Elaiworthy profile image
Elaiworthy
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23 Replies
Kaarina profile image
Kaarina

That is no life carrying on like that with the AA. It is fine for your GP to say that but they are not the one taking the medication and suffering. If it were me, I would definitely take no more of that medication. Nothing is going to happen if you do not take it for a few weeks. Get yourself back to how you felt before taking the AA.

Also what is the point of taking an OP drug and then having to take steroids which I understand are not good to take, on a regular basis anyway, if one is diagnosed with OP and then you mention getting stomach pain.

You will probably be prescribed Risedronate which some people can tolerate if they could not tolerate the AA. I quickly gave up on them both.

Take a break from the AA Elaiworthy. :)

Elaiworthy profile image
Elaiworthy in reply to Kaarina

This exactly how I feel. Ive decided to tell my GP I’m not taking it any longer. He did say Risedronate would be next choice. Think I need a break.

X

Kaarina profile image
Kaarina in reply to Elaiworthy

Definitely, you do need a break. :)

veriterc profile image
veriterc in reply to Kaarina

Before you give up, have you tried taking some exercise? Best is Hydrotherapy if you can get it, but if not have a walk, or take up cycling. Sounds counter-productive, but I can assure you hydrotherapy and swimming really helped me - but the water must be warm. I wrote about this on aftercancers.com

Elaiworthy profile image
Elaiworthy in reply to veriterc

I’m struggling to walk up a flight of stairs so exercise is out of the question. I’m totally exhausted and my balance is also affected.

Kaarina profile image
Kaarina in reply to Elaiworthy

Is this because of the AA or are you like this normally?

Elaiworthy profile image
Elaiworthy in reply to Kaarina

It must be because of AA. I usually walk my dog everyday often twice a day and care for my grand children twice a week and pick up the older ones from school, but since I started AA this has been impossible. I have lung problems but have never suffered with balance issues. The balance issue we’re yesterday and today and feel slightly dizzy from time to time. Ito I’ve had some dizziness and brain fog since starting AA.

Kaarina profile image
Kaarina in reply to Elaiworthy

You poor love. Sounds like AA is like poison to your body.

veriterc profile image
veriterc in reply to Elaiworthy

You shouldn't have such extreme reaction. Have you asked R. Osteoporosis Society for advice. Their Helpline nurses are very helpful. And I would suggest you demand to see a Consultant; a GP is a General Practitioner and can't know everything - Consultant is a Specialist just for one condition. I got much better care when I insisted on seeing a Consultant.

Fruitandnutcase profile image
Fruitandnutcase

I was like you. I stuck it out for four months. I never got to dread taking it but I felt really, really awful. I had expected gut / oesophagus problems but that was probably the only side effect I didn’t have. Unfortunately my symptoms didn’t ease, I just got more and felt worse. By the time I’d had enough I’d had three lots of antibiotics for sinus infections, earache, swollen glands, all of my teeth hurt, my bones ached. I just felt exhausted all the time and very depressed. I had so many things wrong and I just felt so ill it was like I was a very elderly shadow of my former self, I was just utterly miserable and couldn’t see any sort of future for myself.

Eventually I stopped taking it - originally to give myself a break and to try and get myself back to feeling better but as my husband said why did I want to keep taking something that made me feel so awful? I really was feeling very bad. Especially as it was stopping me taking the weight bearing exercise I was needing to take for the OP - well to be honest it was stopping me living a normal energetic life. I certain,y didn’t feel like the me I used to be.

I’ve been fine since I stopped. I read a lot of books about bones and OP and I’m taking bone friendly vitamins and minerals and getting lots of exercise and I’ve got a weighted vest. I like the Margaret Martin website and exercise for Osteoporosis books and I’ve got a couple of her DVDs online that I do if I can’t get out for any reason.

Have a look at Met00 ‘s posts and see what she takes - I take more or less the same.

When a fracture liaison nurse phoned me a year after I started I confessed that I had stopped and was told I should have contacted my prescriber and I’d have been given Risedronate instead. Seems that is less likely to cause problems but it was too late by then for me by then as I’d been so put off. It seems unfortunate to start with a cheap drug that can cause some people unfortunate symptoms.

On the other hand there are lots of people who are perfectly fine taking AA. and you could feel great on Risedronate. Good luck, it’s a hard decision to make. I suppose a lot depends on your age and T scores too. It’s a horrible decision to have to make.

Blue-skies profile image
Blue-skies in reply to Fruitandnutcase

You give excellent advice. I’m new to OP and have been struggling with the meds AA and Ibandronic Acid….my next is Risedronate. I will be looking at the Margaret Martin website and also invest in a weighted vest. What a great idea! Thanks 😀

in reply to Blue-skies

Hi thereAlso check out "Save Our Bones" website. It gives you lots of info on AA. Why is that drug still being prescribed. Why put something that is used in the laundry and oil and detergent business into your body? It's a scandal. I read only 1 in 6 are still taking it after a year. It takes a year to "work" if you can call it that. Very hard to decline advice of the medical profession, Royal Society etc but armed with relevant info it gets easier. Good luck!

JulDeb7374 profile image
JulDeb7374 in reply to Blue-skies

I like you was new to OP and my doctor gave me three month supply of Ibandronic acid tablets, after reading and researching this drug my tablets are still in the box I am to scarednto take them. He gave me no information about my T scores so asked for a copy, and find that my right hip is -2.6 which puts me into OP all the rest are ostopenic, my spine wasn't recorded for degenerative changes, whatever that meant, no explanation at all. So going down the vitamin rout. Fortunately I have never broke a bone so I am doing excersizes and walking. I am 77 now and can't understand the point of taking a tablet that stops you losing bone but ending up with old bones that are then more brittle and break, and as for the dental problems don't fancy my jaw bone collapsing and my teeth falling out. So I shall take my combination of bone vitamins and hopenfor the best. Good luck to all. X

Elaiworthy profile image
Elaiworthy

I feel like life has stopped. I usually have my grandchildren twice a week but can’t do that at the moment. I just lie on the sofa for those really bad 3-4 days. The other days are better but not great. The best day is the day before I take the next tablet. I can’t see the point of taking a tablet that prevents me doing exercise and the usual stuff.

X

Kaarina profile image
Kaarina in reply to Elaiworthy

Exactly. You know your own body more than anyone else. Please do not take another AA tablet. Have your grandchildren over twice a week, feel well. If you did take a tablet on Wednesday, you are not going to be feeling well now. Think forward to next Tuesday when as you say you should be feeling much better and do not take the tablet on the Wednesday. Let your body start to heal. Enjoy feeling so much better. Nothing drastic is going to happen except you will feel good in yourself and the second week without the drug you will feel more in control too. You should also feel proud that you have been proactive and done what your body is telling you to do. Gentle hugs to you.

Garfby profile image
Garfby

I stopped after five weeks. Don't regret it. Now going the nutritional and exercise route and feel fine again. Why tolerate the cure (ho,ho) being worse than the disease?

MaggieSylvie profile image
MaggieSylvie

I take it and suffer from fatigue but that's due to blood cancer. No problems with AA except having to stay upright for so long (I do chores for an hour and it helps make the time fly; I now have to inject myself once a week, so that will be another chore). There are other forms of these bisphosphonates, so you could be prescribed something else if you tell your GP you are worse off taking AA.

Pinklady45 profile image
Pinklady45

I struggled with AA and the same side effects you have for 20 months before switching to Risedronate. This did not effect me as badly and hopefully if you switch to R you will cope better.But, and this is a rather big but, after a long chat with my Dentist !!!!!and more research on the ROS and NICE wesites have now this week given up with Bisphosphates and am going to rely on exercise and diet to protect me.

( I felt in my heart of hearts that the very cheap medicine handed out by my GP was not really for me.)

Recommend both those websites for honest down to earth information. The NICE website really opened my eyes!

Much recommended is Margaret Martin Exercise for Better Bones and her website which gives good diet information .

All good wishes for your future.

💗💗💗 Pinklady45

babayaga profile image
babayaga

I didn't like it either and I stopped after taking it for a bit less than a year. My side effects weren't as serious as yours but I wasn't feeling very good. That was about 10 years ago. Recently I have developed back pain, and I asked to take it again. But they said No, and gave me calcium and magnesium and Vit DThe back pain has got worse, and I am still waiting to see anybody about it. I would rather not take the alendronate but I will ask them if there is something else, or if I can do something physical to make it better.

Elaiworthy profile image
Elaiworthy in reply to babayaga

I’ve stopped AA. I’m going to try Risedronate but I’m having a break first. My 5th tablet would have been due yesterday and I’m feeling better already. Good Luck x

babayaga profile image
babayaga

Thanks, good luck to you too. x

townlands profile image
townlands

Just read your post about AA . It was so good to see from it, and all the replies that I'm not alone in finding problems with this drug. I've taken it for 12 weeks but finally stopped last week because of the really bad muscle and joint pain and tiredness it was causing. I have a phone call with my gp next week ( after having to wait 4 weeks for one !) and it's stupid I know but I feel as if she'll think I'm not doing the right thing giving up on AA. At the moment I just feel like a break and see what happens with exercise suggested by the OP society

Elaiworthy profile image
Elaiworthy

It’s 4 wks since my last AA tablet. I felt much better after 10 days but I was still getting sinus pain which turned out to be an infection, almost finished a course of antibiotics and a steroids nasal spray so I’m actually now feeling back to my normal self.

Im going to try Risedronic.

Fingers crossed this works for me.

Hope you get sorted x

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