Bone protecting medication: After being on... - PMRGCAuk

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Bone protecting medication

Emerlad_70 profile image
32 Replies

After being on prednisolone since December my GP has decided to give me some medication to protect my bones one being alendronic acid to be taken one day a week she said I need to sit up straight for 30 mins after taking because I can cause acid problems with stomach

I have already got gastric reflux so a bit concerned about taking it

Does anyone have the same problem ?

And how does it affect them

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Emerlad_70 profile image
Emerlad_70
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32 Replies
Soraya_PMR profile image
Soraya_PMR

You’ll find many threads regarding this if you put Alendronic Acid into search.

Basically it is not a given that you will succumb to osteoporosis while on steroids, no matter that most GP’s think you will. My GP was a bit of a bully trying to get me on AA, my response was ‘prove I need it and I’ll reconsider’ but he declined to give me a dexa scan, so I declined to take it! Six months later I had the same discussion with my rheumi, and she ordered a dexa scan, which showed I had good bones (after 7+ months on pred) and the AA discussion was dropped. I’ll have another dexa scan next year.

The single most important thing to do is to keep active and weight bearing. Then add calcium (diet or supplements), vit D3, vit K2, magnesium. Here’s a thread which will help: healthunlocked.com/pmrgcauk...

What’s the plan for your gastric reflux? Is it because of pred or long standing? Are you on coated pred?

Emerlad_70 profile image
Emerlad_70 in reply to Soraya_PMR

My gastric reflux is long standing I take omeprazole twice a day

Soraya_PMR profile image
Soraya_PMR in reply to Emerlad_70

Take omeprazole twice a day and still have gastric reflux? Or does it manage it well?

Personally I wouldn’t want to be on a PPI long term, as constantly reducing the acidity of your stomach in itself can hinder your absorption and IMO is likely to cause more osteoporosis than pred!

When does the reflux become a problem? Night time?

Emerlad_70 profile image
Emerlad_70 in reply to Soraya_PMR

Yes it manages it very well

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

First question, do you actually need it? Have you been offered a DEXA scan to check if it is really necessary.

It’s one of the “add on” drugs that is often prescribed alongside Pred. Many people don’t need it, but you should have been prescribed a Vit/Calcium supplement.

As you have gastric problems already please double check if AA is necessary.

I took it for 3 years no problem - you just need to take with plenty of water and ensure you don’t lie down or eat or drink anything for 30 mins. Standing or sitting is not a problem - have a shower, read a book, check your emails!

Emerlad_70 profile image
Emerlad_70 in reply to DorsetLady

Thanks I have been prescribed a calcium tablet

SnazzyD profile image
SnazzyD in reply to Emerlad_70

Has your Vit D blood level been checked? It works with calcium and without good levels your bones won’t be getting it. People are often deficient and if you do have a deficiency you’ll need an initial course of extra Vit D. Docs don’t seem to know about K2 but there is a lot written about it. I buy my own Calcium with added Vit K, partly because the prescribed dose caused me acid indigestion, so I take a smaller dose.

Emerlad_70 profile image
Emerlad_70 in reply to SnazzyD

I have taken vit d for quite a few years as I’ve got older

Whippetygirl profile image
Whippetygirl in reply to Emerlad_70

Check Ad Cal if you have kidney problem s, I developed two kidney stones on them.

yogabonnie profile image
yogabonnie

Do not take AA unless you have severe osteoporosis as shown in a dexa scan. I have osteoporosis and do not take it but have improved my bones this year on prednisone by taking calcium D3 Vit K M7 and doing heel drops.. and TAP! (but heel drops suffice!) and doing some weigh bearing exercises.. I need to do more. the AA medication has some serious side effects the esophageal ones especially. AND my dentist said absolutely do not take. there are lots of opinions and you can find lots more information in a book called Your bones by Lisa Pizzoleti (?) But put it in the Search and you will find many posts! Good luck with all this. It IS daunting but the site is invaluable.

Mrs-CJ profile image
Mrs-CJ in reply to yogabonnie

Yogabonnie.....could you please explain “heel drops”?

I am always looking for ideas to help with my osteopenia!

Thanks 😊

yogabonnie profile image
yogabonnie in reply to Mrs-CJ

sure. You just go up on your toes a big and bang drop your heels. I do it while I am doing dishes. in my shoes.. or slippers or bare foot. It is like tap dancing with a bang to the foot which reverberates up and tells your bones they need to be stronger. (I made that up) but something like that. There are several you tube videos. If balance is a problem definitely use a chair. Here is a video. youtube.com/watch?v=tZ8gy_V...

Mrs-CJ profile image
Mrs-CJ in reply to yogabonnie

Thanks for this! 😊

scats profile image
scats

I couldn't take AA because I have difficulty swallowing whole withoug food. I was told to have Zoldronic Acid infusion as alternative. This avoids the gut and is stronger. I can only reinforce what the others have said don't take unless you really need it, check first with a DEXA scan. Iwas refused a scan and told at my age I would need it, so gullable to the end I had it. Now I have it in my system my dentists refuses any extraction and has referred me to hospital just to have a tooth out. Dentists worry that it can result in osteonecrosis from infection in the wound.

Emerlad_70 profile image
Emerlad_70

Thanks for all your advice very helpful I don’t think I am not going to take it

piglette profile image
piglette in reply to Emerlad_70

I should get a Dexascan done for your bone density before making a decision.

Baileyw06 profile image
Baileyw06

I had to stop taking it because of the muscle pain side effects. I am using calcitonin which is a nasal spray that is working.They don’t want to prescribe it because it is more expensive.

Longtimer profile image
Longtimer in reply to Baileyw06

Haven't heard of that before, I am being told because of Osteoporosis to take something...have tried a couple over the years....painful!.....infusion terrifies me....but a nasal spray might be worth trying.......have you been on it long......and any side affects if you don't mind me asking?

.......thank you....

Baileyw06 profile image
Baileyw06 in reply to Longtimer

Yes , I have been on it for several years and haven’t had any side effects

Longtimer profile image
Longtimer in reply to Baileyw06

Thanks for that...will suggest that to my doctor...I am struggling with the "caplets" of Adcal...still gives me stomach ache as did the ones we suck.....certainly can`t take 4 a day as instructed... I have gallbladder issues so think they are irritating that.....

PMRpro profile image
PMRproAmbassador

If you have gastric reflux it is a contraindication for AA. For the moment accept calcium and vit D only (which you should be on anyway having had your blood levels checked before being put on AA). You should also have been told to have a full dental check so anything can be got out of the way BEFORE taking AA.

And while you are sorting all that out - you will have plenty of time to have a dexascan done if you haven't already to be sure you need any such measures.

No dexascan, no AA.

yogabonnie profile image
yogabonnie in reply to PMRpro

THAT is the way to say it! No Dexascan No AA. should be at the top of the page!!

Meggsy profile image
Meggsy

Don’t take the calcium at the same time as your prednisone as one inhibits the absorption of the other.

polymy profile image
polymy

Constant gastric reflux is a contraindication for AA. Does the Omeprazole keep your reflux in control? Even on Lansoprazole long term didn’t help mine and Ibended up with stomach ulcers,acute gastritisand oesophagitis and Barrets oesophagus. Am on 40mg Omeprazole twice daily and ulcers and inflammation have gone. I have been recommended to have an annual infusion of AA as it is felt the oral is contraindicated. The cause according to the medics is steroid induced although my reflux predates PMR. Don’t ignore acid reflux from whatever cause.

yogabonnie profile image
yogabonnie in reply to polymy

Did you have a dexa scan? Is the Osteoporosis really bad? I worry personally about a yearly or bi yearly shot. (Of anything!) I always wonder what if it is not for me. You can't get it out or stop it!

polymy profile image
polymy in reply to yogabonnie

I did have a dexa scan and my bones were fin e but my GP still wants me to have protection to keep it that way. She said it was in the guidelines but a PMRpro printed the guidelines and it says no such thing. GP said the last thing I need is a fracture. I think she is very caring and fears for my health with all my add ons.

in reply to polymy

She may be caring etc but as yb says, once something like that is in your system it's in.🌻

yogabonnie profile image
yogabonnie in reply to polymy

Boy. She is just plain wrong. And it is not good to ever prescribe a drug someone doesn't need especially one that one can only take for so long and never leaves your system. You are so kind.. but refuse it. and WONDERFUL that your bones are fine. You can keep them that way. I have been on prednisone for 18 months starting off with osteoporosis and after a YEAR on prednisone my bones were NO WORSE!!!! do some heel drops and exercise as best you can and take calcium and vitamin MK7 and get a book: Your bones by Lara Pizzonoro SO great you have good bones to start with!

Cally55 profile image
Cally55

Are you GCA or PMR? I have both for more than 3 years, so I have had a massive cumulative dose of prednisolone. The total amount of prednisolone seems to be the problem with fractures. I took AA and adcal D from the start.

I had a rheumatologist appointment recently where I queried whether a DEXA scan would have predicted my fractures, I have multiple thoracic and lumber fractures, and she said that with the sort of dose I have had fractures were highly likely anyway.

I was unaware of my osteoporosis until I had 2 very painful fractures last April in spite of plenty of weight bearing exercise. Now had several more after a bout of bronchitis.

Now waiting for infusion of zolendronic acid in spite of needing a possible root canal because I have been waiting 4 months for the dental hospital appointment, now put off to end of June! With all these treatments it seems to be a balance of risk and harm, I am aware that zolendronic acid only reduces the chance of fractures.

I did have reflux to start with from prednisolone but it has got better and I have been able to reduce my dose of omeprezole.

It takes a while for the AA to work so I think that is why they want one to take it from the start, since no-one can predict what your cumulative dose will be.

I also think that treating people like me whose life has been completely changed by the fractures may influence GPs to do what they can to reduce the risk.

yogabonnie profile image
yogabonnie in reply to Cally55

I am so sorry you have gone through all of this. Even though I am always (broken record) saying do not take AA to everyone I do not mean to diminish your experience or decision ..or anyone's.. I don't actually KNOW anything and just want to say good luck with your teeth and all of it!

HeronNS profile image
HeronNS

Personally I would avoid any bone med unless there is a genuinely serious situation. There are forms which can be administered through injection of infusion, thus avoiding the gastric issues. But they, of course, come with their own lovely suite of side effects.

Consider adding Vitamin K2 to your supplements. It will assist calcium to go to the bones. Magnesium also important, and can be absorbed through the skin, as in Epsom salts, or other special preparations, also avoiding the gut route.

Dream21 profile image
Dream21

Yes. I am the same as you. I have acid reflex and take Alendronate. I asked my General Practitioner if I should increase my medicine to treat acid reflex with the addition of Alendronate. He said, “Yes”. I have not had problems with it.

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