Anyone having NO side effects from Alendronate?

[DianeA1]

Hi, my Dr wants me on it tho my Dexa was normal. Please advise if you have had no side effects from it. Thank you!

[DorsetLady PMRGCAuk volunteer]

Hi Diane,

Personally none - as far as I know.

Was on it for four years, been off it for two years. What the future holds who knows! But then, that could be said of many medications.

Your body, your choice.

[SheffieldJane]

Please do not misunderstand, the objection to the routine prescribing of a powerful drug without evidence that it is actually required, is the point. In fact I believe that it is possibly contraindicated for healthy bones. My bone scan should no sign of impending Osteoporosis, so my doctors didn’t prescribe it. Had it been necessary I would have taken it.

[SheffieldJane in reply to SheffieldJane]

Can’t edit for some reason,for should, read showed. 🙂

[Hidden]

Why does he want you to take it if your dexa was "normal"? My Dr and rheumy backed down once the scan showed the same and prescribed adcal- vitd3 and calcium. I took AA 5 times which caused hip pain. Adcal SEEMS to have no unwanted effects. Which I realise what you asked. It just puzzled me.

Every drug has some unwanted effects so you are asking right kind of questions. If you put alendronic acid in a search you will find lots of discussions about it. Good luck making your decision. It is hard when Dr tells you you need it. Without knowing your history I hope you find some answers that help!

[Alliand]

Hi DianeA1,

Personally, I would not take a medication for a condition that does not seem to exist; I had a recent similar experience where Dr. wanted to prescribe Reclast for the most marginal osteopenia with report saying 0% risk of fracture for next 10 years. I said, no, Thank you, and I will stick with my daily calcium supplement.

At least in the USA where I am, I know there is a lot of horse trading ( to be polite) between doctors and sales reps of pharmaceutical companies. You might ask your doctor what is his / her reasoning. But personally I would refuse.

Good luck.

[Insight329 in reply to Alliand]

And let’s not forget that the term osteopenia was a word made up by drug company to sell their product.

[PMRpro Ambassador in reply to Insight329]

And the choice of figures was purely arbitrary - no basis for a given figure at all.

[Alliand in reply to Insight329]

And, yes, I suppose the reason that there are new norms for blood sugar levels, and now blood pressure levels here in the US is so the drug companies can promote "new and better" drugs for what were once normal conditions. One size does not fit all.

A good read on this subject is Blood Medicine, available as an ebook on Google play, and I imagine on the Amazon Kindle app. True expose, but reads like a novel.

[Insight329]

healthunlocked.com/pmrgcauk....

Taking AA or not is a personal decision, as it should be. Here is a link I posted previously on how I came to the decision to stop taking it. I think the nail on the coffin to continue taking it was the statement by the head of osteoporosis research for NIH stating ‘it makes sense to wait until you actually have osteoporosis’. (Referenced in my explanation,)

[whitefishbay]

I had no side effects from Alenandronic Acid. I did hate the fact that I had to wake up take the big pill, drink a huge glass of water and then I had to sit up. No reading in bed. Otherwise no problems.

[Jillbowles]

On it for 18 months. No side effects. Have mild osteoporosis so I decided to take it.

[Hindags]

I'm taking it because I have ospteoporosis. No side effects to date. If I didn't have osteoporosis I probably wouldn't be taking it. I'd bebargaoning with my MD to wait six months and get another Dexa to compare to current status. If no change, I'd continue without.

Quite a few people on this forum without osteoporosis have had no bone loss on Pred.

[Janstr]

I had Osteoporosis for 15 years before my PMR/ GCA diagnosis 3 months ago, I refused to take the recommended AA mainly because of the potential hidden side effect of osteonecrosis of the jaw after a tooth extraction. I instead opted for a drug deemed not to be as effective, started walking 25 to 40 km per week & started vibration training that was developed for the astronauts who lost bone density in space. And something worked as my bone density started to increase!

Then 9 months before the PMR diagnosis there was an unexplained decrease, and now with the wonderful steroids have decided to take it. I have had no visible side effects in the 3 months I have been on it.

Personally I wouldn't take it unless your bone density is reduced

[PMRnewbie2017]

Hi. Insight 329 has given you all you need in the above post. In the UK, doctors now follow the NICE guidelines almost to the letter. My gp and Rheumy wanted to prescribe AA with my first pred script and didn't consider doing a DXA scan first. I refused on both consultations. My Rheumy said under his breath " you can always see another rheumatologist if you won't do as I say". I heard him and gave him a suitable response! A private scan showed my bones are not just OK, they're exceptionally good for my age. At my second consultation the hot topic was raised again and I took my scan results to show him. He wasn't interested in them at all, neither was he interested in what I am doing to preserve my bone heath!! He just trotted out the same NICE mantra and said " you're on long term steroids you will lose bone. This is not an osteoporosis clinic."

Biphosphonates inhibit normal bone remodelling. That means old bone is broken down and new bone is formed. Bone created under the influence of these drugs is not good quality normal bone. It contains micro cracks. Bone is also laid down over existing old bone which may be of poor quality. So, to me it makes no sense to take these meds if there is no evidence of osteoporosis. Please do what you feel is right and be prepared to fight your corner using the quality evidence this group provides.

[DianeA1 in reply to PMRnewbie2017]

Yikes!!

[Hidden in reply to PMRnewbie2017]

A perfect overview of the bone growth issues pmrnewbie2017.

And yikes indeed dianeA1

[Hidden]

Hi Dianne

I took it as prescribed but found the getting up early difficult, to take it before l had anything to eat or drink!

l had a Dexa Scan & was found to have Osteopenia so it was justified.

The drug has a bad press & there are many people on here who can explain further but if your bones are good & you get regular Dexa Scans why would you take it?

On a Personal Note, l’ve had breast cancer (while being treated for PMR) & one of the new protocols on my type of BC is a three year course of Zolendronic Acid Infusion, every six months, to prevent BC spreading to the bones, so personally it’s been good for me in two ways.

At my last Dexa Scan, no sign of the Osteopenia & my Oncologist was happy l was already on it but he changed me over to the six monthly infusion which by chance l’m having on Wednesday. We do however have a range of blood tests done before which l’m off for now.

Best Wishes

Mrs N 💅🏼

[Hidden]

I have been taking it for three months with no side effects that I am aware of.

[AvisF]

I have osteoporosis and a family history of it too. Have been taking AA for 14 months with no problems apparent.

[Lyn_seaside]

I had no side effects whatsoever. Took it from age 45 - 50ish, 53 - 55 and then 57 - 61 as on steroids. Now off Pred and off AA. In that time my osteopoena (spelling?!) was stopped in its tracks so for me, it was well worth it. Each to their own but I'm pleased I took it and would do another stint if necessary. Make sure you tell your dentist if you take AA as they get very het up about what it can do to your jawbone! Mine was quite relaxed about it so long as I took breaks from it which I did.

[9lives]

Hi DianeA1

Yes I have recently started the dreaded AA. End of February, it think it was. Due to my dexa scan . It picked up osteoporosis in my lower back. But quite a low score though.

I am wondering why they put you on it if your dexa scan was normal.

Well so far taking the AA not problem, apart from trying to swallow it !! I heard all sorts of scary stuff but have to say it’s ok a the moment.

I have a friend who was on it a few years ago and I remember saying to her that I would never take that. !! Well here I am swallowing my words. !!

I tend to take it on a Sunday morning with plenty of water, then I go off and feed me Guinea piggies, buy then the 30 mins is up and I can carry on as normal.

Some times we just have to do what has to be done.

I’m sure others will give you their experience too .

Best wishes

Carole x

[Marijo1951]

I took AA for 5 weeks and it played havoc with my oesophagus. I had terrible pain and soreness and food kept getting lodged. I was offered an intravenous version, but read such worrying things about the possible side effects that I decided not to take it up.

[FSP25]

I have been on Alendronic Acid for five and a half years. It was prescribed when I started on Prednisolone. I had Dexa Scan shortly afterwards and another one after 3 years which showed an improvement so GP said medication was working and to continue. I stopped taking it for 6 months after reading somewhere that it stayed in your body for 10 years. Another reason was the connection to Osteocrenosis of the jaw which my husband has following radiotherapy. I started taking it again after seeing my Rheumatologist who is an expert in PMR and said to continue taking it while on steroids. I had my 3rd Dexa scan recently and things had deteriorated significantly and I have Odteopaenia. I am being referred for further advice about what further medication I need. Whilst taking AA I have had no side effects that I am aware of. Hope all the answers to your post help with your decision.

[HeronNS in reply to FSP25]

Osteopenia is not osteoporosis, and it is no longer best practice to prescribe osteoporosis medication to people with osteopenia. The potential bone thinning effects of steroids are not inevitable and can, even if they occur, often be controlled simply with supplements, diet and exercise.

[HeronNS]

Osteopenia is not osteoporosis, and it is no longer best practice to prescribe osteoporosis medication to people with osteopenia. The potential bone thinning effects of steroids are not inevitable and can, even if they occur, often be controlled simply with supplements, diet and exercise.

[Jeanfkelly]

Hi Diane

I was given Alendronate as a "matter of course" when I was prescribed 60mg Prednisolone for GCA. I took it with no side effects for 2 years, until I was diagnosed further with refractory GCA. It was only then that we discovered my kidney function had been steadily reducing. My 2nd opinion Rheumy was of the opinion this could have been due to the Alendronate and stopped it when I hit a low of eGFR 29. He stepped up the Adcal. My kidney function returned to 60s within a very short time.

Recently I was admitted to ICU with pneumonia and the consultant there, when hearing of my GCA & associated problems was very quick to ascertain if I was taking Alendronate. He, too, was of the opinion that it was unsuitable, unless there was a clear reason for taking it, as it affected kidneys in many patients.

Hope this gives a bit of background to your query.

All the best

Jean

[PMRpro Ambassador]

I would tell my doctor he may take it if he likes - bisphosphonates shouldn't be used in patients with normal bone density. The correct procedure is to check the dexascan in 2 years. My bone density hasn't changed significantly in over 7 years on pred, my t-scores were about -1.3 or better at the start, now it is -1.5 and better. All I have taken is calcium and vit D supplements from the start.