since my Rheumy discovered I have two fractured vertebra, she is insisting I take AA. At my Dexa scan last summer AA was suggested but left to my decision as it showed ostopaenia not osteoporosis. I took AA last weekend and experienced heartburn, indigestion and difficulty and some pain swallowing. I found these can be side effects of AA and am worried because I had two recent episodes of diverticulitis. AA can evidently lodge in a diverticula and cause serious problem.
I’m trying to decide whether to take AA again this weekend and see if the symptoms recur, or is this too great a risk? Don’t want to overreact, but certainly don’t want recurrence of diverticulitis! Grateful for any help this wise forum has to give!
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Japsquar
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Hello Japsquar,I had the same reaction to AA tablets so my GP suggested an infusion of Zooendroic Acid which I can have once a year for 3 years. I have had 2 infusions. This forum helped me a great deal during the pandemic. The side effects of the infusion were as described by other people. I too have diverticulosis and I had no gastric effects. Good luck - there are options. PickyQ
Have you seen an improvement in your BMD (have your T-scores improved) since taking zoledronic acid? Also did your doctor test your BTMs prior to starting you on bisphophonates and is s/he monitoring your BTMs after starting bisphophonates?
I don't seem to have any monitoring.The local hospital that gives the infusion has no follow up neither does GP . I had a bone scan before the treatment started so will push for another after my 3rd infusion in October.I've recently had to push for a cholesterol blood test since coming off statins!
Many ppl quit alendronate because it causes digestive tract issue—I did
Before you take any more osteoporosis meds, have your doctor order BTM (bone turnover marker) labs. These tests need to be done prior to starting meds (I doubt the one alendronate pill you took will alter your results too greatly if you haven’t already had BTM labs). BTMs should be done prior to starting meds so you have a baseline. Then about 3 months after taking meds you can retest your BTMs to see if the meds are doing what they are supposed to do.
I'm in the same position as you but my rheumy immediately offered a choice of tablets or an infusion. I took the infusion! He says the main downside of the zolentronate infusion is that 1 in 5 patients experience a reaction very like flu for a few days after the infusion.
In your position, I would not take the AA, and would speak to the doctor, asking for an infusion or at the very least a trial of risendronate which is also tablets but seems to have far fewer gastric effects. I think the GP could help with the risendronate trial - not sure about infusions.
Rheumies are somewhat perturbed at the resistance to taking bisphosphonates amongst patients. I think they aren't really aware of how many patients do have gastric problems with it, and that is what other patients remember rather than DL and her like who took it for years with no problems. But when you take it and have a bad experience - that is 100% experience it is unpleasant!
Thank you for prompt and helpful response. That’s decided me. Will message Rheumy and GP and tell them and ask about infusion. Why didn’t Rheumy notice? She knew I’d had diverticulitis!
Mine did nothing about the infusion until a year later and then lost the paperwork. Couldn't take AA but she knew it. I now have 9 vertebral fractures. Insist on the infusion. Had it this October. I had no side effects, but Osteoporosis specialist (rheumy lost the paperwork for the referral as well) did say it takes 5 or 6 months to start being effective.
Just looking closer at your post. Gathering alternatives as everyone I speak to seems to have one agenda to get me on AA. How is zolentronate different from alendronate?
There are weaknesses in this analysis of several studies but it presents a lot of info.
In real life, BPs need to be taken consistently to work well. Weekly tablets that patients perceive as complicated or inconvenient to take don't result in good compliance - but an injection or infusion works for longer so reliably.
And as I said - money talks. AA tablets are cheaper than the alternatives,
No idea - it will be amongst the bloods I have done next week. But the reason I am having it is because there is x-ray evidence of compression, possibly a fracture.
Understandable. I didn't have any major issues with my one and only zoledronic acid infusion. I followed what the infusion center told me to do: drink plenty of water before and after, take tylenol before infusion with plenty of water and before bed, after having the infusion, with plenty of water. No NSAIDS. Also the infusion needs to be administered over at least 15 minutes--for some ppl they can make this longer, which is supposed to help with potential side effects, but I don't know how they determine this is needed.
I decided not to have another dose because I'm not convinced that it is the right med for me but I know that for many, bisphosphonates are very helpful.
I am one of the 1 in 5 who suffered a reaction to the infusion but it was less for the second one. I would still prefer the infusion to my limited experience of the tablets which I tried for a short time. Rather an annual-ish reaction for a day or so than more regular gastric effects on the tablets. They really did not agree with me.
Don’t forget bloods! My infusion was delayed as I had the nurse from hell who didn’t read the info logged on my record so she didn’t request the correct blood test. It’s quite the palaver seeing the dentist, getting all ducks in a row prior to the infusion but worth it I’d say.
You may be one of the 4/5 who’s ok. I was told 1/3 get a reaction and to take paracetamol before you go to bed. I ignored her and assumed I’d be one of the 2/3 who’d be ok. Rookie error - I took the paracetamol for the second infusion. It wasn’t as bad. Don’t book your car in for service the day after infusion 1 which is what I did. Just get food in as you say and plan a couple of easy days. You may well be fine.
I haven’t had a DEXA scan since before the first infusion. The DEXA scans I’ve had were in response to fractures I’d had - of the wrist 2017 and humerus 2021
Pro, can i ask why you went for the infusion as opposed to Prolia? As im in this quandry! I havent sorted it with recovering from surgery, etc. It all fills me with dread as ive said before. Rheumy pushing Prolia but then orto surgeon saying its not the bone builder wonder drug once being hailed as.
Because the rheumy didn't actually offer Prolia. The downside of Prolia that has rather clouded its reputation is that there is often rapid rebound loss of bone density in the spine in particular when you stop it resulting in spinal fractures.
That can be dealt with in one of two ways: either you continue on Prolia indefinitely OR you switch to oral/infused bisphosphonates when you stop Prolia to stabilise and maintain the bone density gains due to Prolia.
It remains a pretty effective bone building option if you need bones to be stabilised quickly as the effect is thought to be evident after as little as 10 days. Infused bisphosphonates take 2 to 3 months. Not sure about oral bisphosphonates. Your ortho surgeon has half a story - no doubt he has seen the spinal fracture patients. There is a remedy.
Yeah, i feel im being shunted into Prolia. I'll see how i go, for safety i'll have to take one or other. Good luck with your infusion hopefully you will escape the fluey issues, though that wouldnt be the end of the world for couple of days.
The infusions are used for 3 times (so over 2 years) and that is often it. If you have Prolia, you have however many injections every 6 months, then start the 2 years of infusions so it goes on longer.
I don't know - feeling fluey when you live on your own is rather different to when someone is around to make cups of tea ...
Thanks for posting that link. It never mentions checking BTMs. Most doctors don't check them either. Why are they so bent on prescribing bisphosphonates when they have no idea if the patient has elevated bone turnover?
I had AA for a year before the GP decided it was causing some of my gastric problems, and was switched to 6-monthly Denosumab injections. Much more pleasant!
That’s interesting, thank you. An alternative to add to possibilities. Can I ask why you didn’t have AA by injection instead? Each nurse I speak to seems to have the one agenda to get me on AA and I’m resistant but know of no good reason why I should avoid the injection. More gut feel - no pun intende!
AA doesn't come as an injection - a different substance, zolendronate, is given as an annual infusion. The injection is every 6 months and is a monoclonal antibody (a biologic drug) that also changes how bone develops.
AA is the cheapest - which is why they are so keen on it.
PMR has given you the answer then. Just as well, because I didn't know it! I don't know how much the denosumab injection costs, but it's only twice a year. Besides, how can it be cost effective to give you a drug that makes you ill?
Denosumab is likely to be the most expensive as it is a monoclonal antibody - same class as tocilizumab.
NHS Dorset says £366 per year for denosumab. In Advice for Prescribers, it says that based on the Drug Tariff price for alendronate 70mg, a year of treatment would cost £50.83 compared to £283.74 for zoledronic acid. A 15 minute infusion may also need to be undertaken in a secondary care setting which would invite an additional charge for service delivery.
So actually, denosumab and zolendronate are similarly priced. And AA is far cheaper - no wonder they prefer using it! Most people do actually get on with it OK - you only really hear from the ones who don't.
Oh?! Tell me more. Why has the Rheumy not said anything? What would you expect her to do next? She’s offering Leflunomide. And what is IL-6? I feel foolish not knowing more but I don’t take these things in very well!
IL-6 is the inflammatory substance that causes most of GCA and PMR. There are other inflammatory processes that play a minor role in about half of patients. Tocilizumab/Actemra works on IL-6 by stopping it attaching to the receptors that allow it to do its evil work and that stops the inflammation developing, But the biologic drugs like tocilizumab are very specific, only working on that single substance. So the fact that tocilizumab didn't work for you also suggests there wasn't a lot of IL-6 involved in your inflammation.
Did it not do anything? Over what time period?
Leflunomide is a DMARD (a disease modifying anti rheumatic drug used in RA) and seems to work for some PMR patients. It works in a more general way unlike a biologic but doesn't work for everyone.
My rheumy, very experienced in PMR and using it for PMR, says it can take at least a few months to start working before you can taper, Had you been able to reduce the pred dose at all?
I believe Tzmab and Lef can cause gastro issues so perhaps not the best for patients with pre-existing Diverticulitis. A few folks on this forum had posted about their experiences with these medications. I paid attention to those posts as a diverticulitis sufferer who was stuck at a moderate pred dose and being offered a steroid sparer.
Advice as above. Do you mean that you have some sort of an unusual pouch/ divertiicle in your oesopahus???. But if its bowel diverticulitis you are referring to then any tablet would be long since dissolved by the time it reached that far.
Exactly. However AA remains famous for oesophagitis as others have emphasised. FWIW I am pro treatment and prevention of osteoporosis if one can tolerate the medication. You dont give your Dexa T scores for your hip and spine. But if I had already Osteoporotic fractures of my spine, as your Rheumato must think, ( Osteoporosis of the spine can be v painful and disabling) then I would want to have something to improve the situation if possible.
After being diagnosed with Osteopenia, I too was prescribed AA and also have diverticular. After 1 tablet I experienced the same as you plus all my teeth ached! I did not take another. The pharmacist called me to check as it was a new drug for me and agreed it was ok not to take any more. A dreadful drug. I take calcium and Vit D plus tumeric . I will discuss when I next see my GP but will take my chances rather than AA. I have PMR and now tapered down Prednisolone to 2mg per day and intend to be off these by Spring. I am convinced Covid jab and or having Covid in 2022 caused it but interestingly since having Covid again pre Xmas, PMR symptoms have almost gone! Fingers crossed.
Being picky here - but you can't be diagnosed with osteopenia - it isn't a PATHOLOGICAL state, it merely means reduced bone density compared with when you were 30-ish! I was in the middle of the osteopeneic range on the dexascan taken within 3 months of starting pred and it didn't change significantly in 11 years on pred. I think you were quite right to stop the AA. I was recently told I have a small compression fracture of a lumbar vertebra and I will be getting an infusion of bisphosphonate in a couple of weeks - I always said that I would accept them if they were needed but I wasn't taken by the idea of "just in case"!
What I was trying to say is that 1) A normal status shouldn't be a diagnosis, a diagnosis is for a pathological status which osteopenia isn't. And 2) since it isn't a pathological status, why are they so determined to dish out bisphosphonates like sweeties?
My 82 year old mum has osteoporosis, diverticulitis and numerous intolerances- she’s been on 6 monthly Denosumab and has had no reactions and has seen improvement with her bone density. I too have osteoporosis and am on yearly zolendronic infusions. I pushed for these instead of the weekly AA tablets. I have had no side effects. Hopefully I will avoid the terrible pain my mum had with fractured vertebrae.
So glad you and your mum have satisfactory results from these drugs. The infusions may be the way to go for me but I’d prefer to go without! Did your mum get any help in managing the fractured vertebra and helping them to heal?
No help as such, but she wears a lumbar support on occasion. She’s pleased to see progress following the infusions. She was in terrible pain with the fractures and they went undiagnosed for quite some time. Unless you have awful side effects I don’t really see why you wouldn’t take medication for your osteoporosis. My mum was diagnosed quite late in life. I really didn’t want to take meds either but I really don’t want to be in my mum’s position when I’m in my 80’s.
Hmm! Food for thought. I’m in the osteopenia range and I think the fractures were caused by a specific trauma, rather than by weakness. But if the infusion would help them recover anyway, then it is certainly to be considered.
I was prescribed Alendronic Acid because I have Osteopenia and am on long term steroids. They immediately gave me terrible stomach and abdominal pain ( as do a lot of pills) so I take Densiboost (available from Amazon) which contains the vitamins and minerals needed for healthy bones. My GP agreed that I should stop AA and take these instead. ( I previously improved my T score by taking supplements. That was before I was on steroids.) We will check my bones at next Dexa scan. Good luck sorting something out. It's so frustrating that the cure for one thing gives us another problem!
It is frustrating, a minefield and you can’t tell which is going to be the answer and which a disaster! Densiboost sounds a good solution, but I suspect I may be a step further on as I have fractures. Do hope that continues to work for you!
I couldn’t tolerate AA in tablet form so I was given Binosto, effervescent tablet which dissolves in water and equivalent to 70g AA. Been taken it for 1 year and no problems. I don’t know of anyone else who has tried this but I do have a very attentive rheumy.
I was prescribed AA fairly early in the process - after seeing the rheumatologist for the first time last January, very probably but was instructed not to take them until I'd seen a dentist and had any necessary work done.
My final extraction was in December (other things happened to delay the dental treatment) so I'm due to start taking AA in mid March - 3 months after the last dental appointment, as instructed.
I've been taken Adcal for almost 20 years after being diagnosed with osteopaenia in my early 50's. I also have diverticulitis - so it'll be interesting to see whether the AA has any effect.
It rarely is but before starting AA you should be told to have a dental checkup, have any potential INVASIVE work completed before starting the AA and while on it to be scrupulous about mouth hygiene. Especially important in the UK where many dentists won't touch a patient on bisphosphonates.
That's exactly what happened: my rheumatologist was obviously on the ball in that respect. I haven't seen him since my January 2023 appointment, but I've been impressed that his staff have been at the end of the phone line for advice in the meantime and call back within 24-36 hours of a query.
He wanted me on methotrexate - I've told this story before - but again before doing that wanted to check my lungs because methotrexate can of course affect them. As a benign tumour was found (and removed), there's no chance of me going on that!
It's an ill wind that blows no good!!! And you have to have a cloud to get the silver lining ...
Alendronic Acid, presented in a tablet as sodium alendronate trihydrate, when taken with 500ml water should dissolve in the stomach in PMR people who take a proton pump inhibitor drug such as omeprazole. The drug should then pass through the gastrointestinal tract in a dissolved and not particulate form.
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