Alendronic acid

[UnXmas]

An edited version of my post on the How Are You Feeling Today thread:

I've had back pain getting worse for well over a year so confirming it was from a fracture was neither here nor there to me in that respect. It has spurred my GP into taking all sorts of new measures to fight my osteoporosis. I've got a prescription for Alendronic acid. My GP said it's terrible for reflux, gastritis, and stomach or throat inflammation (of which I have lots). She said I didn't have to try it as I can see my rheumatologist for twice yearly injections instead. I can't see the downside of that, but I get the feeling my GP is under a lot of pressure to avoid referring me for the injections - I can only imagine it's a cost thing and the NHS doesn't want to fork out for it. So I'm trying the acid, with the understanding that if it destroys my stomach I'll give up and get the injections.

Has anyone else had Alendronic acid with Crohn's, and with GERD, stomach reflux, bile reflux, gastritis, oeasophagitis or any combination thereof?

 

[24601]

For what it's worth, I don't think you should take the risk of jeopardising your digestive system further. In your situation, I definitely think it sounds like going straight to the injections would be the right thing.

 

[UnXmas]

Thanks for your reply. The acid is only taken one day a week so it might not be so bad. I haven't worked up the courage to try it yet. If it's awful I don't have to continue with it. I think my GP is trying to get round NHS funding issues, because I'm so young I don't qualify for certain treatments or something. She wanted the X ray to check for fractures, not just because it's useful to know but because with the fracture confirmed I can try different treatments (that was written in a letter from the rheumatologist to my GP - that treatment depended on whether I had a fracture).

 

[Muppetgirl]

Sorry to hear about the fracture unxmas. I was given (but did not take) alendronic acid as my GI tract was (and still is) reacting strongly to less potent meds that can affect the GI tract. I have since found out I cannot take it at all thanks to gastroparesis. I believe this is something you have too? Alendronic has cautions listed for the kind of things you mentioned like gastritis and esophageal disorders, but for gastroparesis it is contra indicated entirely. If ulcers and erosions can occur in those with normal gastric emptying then I would not want to imagine what it can do in someone who has delayed emptying - with something so acidic just sitting in your stomach. Please check with you GI for their opinion. Also some dentist won't treat folks who are on it, so to a lesser extent it pays to check with them too.

With a spinal fracture at your age - and the other health problems you have to think about - you are more than entitled to explore the full range of meds out there. Have your estrogen levels been checked? Do you mind me asking what the back pain felt like? In my case my hips are worse than my spine but I have always been afraid of fracturing particularly the spine and not realising. You hear of people with it just sitting down and it causing a fracture.

 

[UnXmas]

Hi Muppetgirl - doctors diagnosed me with gastroparesis just by my symptoms (extreme fullness and reflux). I had a gastric emptying study last December but the results were lost! Endoscopies have shown I have inflammation in my throat and stomach from acid reflux and bile reflux.

I have a lot of dental problems due to dry mouth. I didn't know about the effects on teeth until I read the info leaflet yesterday, and that's made me make my mind up not to take it. My dentist and I are already fighting a losing battle with my teeth (including all sorts of things like prescription toothpaste) and I don't want to make that any worse. Do you know what it actually does to teeth? My leaflet just says something about making sure to have dental exams while on Alendronic acid. I suppose it's the acid eroding your teeth or something?

My oestrogen levels are fine now but only because I'm on hormone medication. I had premature ovarian failure, which was likely one of many factors that worsened my bone density.

The back pain began as spasms around my tailbone area. The first time was when I lifted something. Then after that first time, I'd lift something fairly heavy, or jolt my back (e.g. jumping down from a stile) and then for days afterwards I'd have the spasms when I moved, or with even slight jolts to my back like sitting down too heavily. After a few days the spasms would stop again. Then in the last few months or so the episodes of spasms got more frequent, more severe and lasted longer. I also got a slight pain higher up my back whenever I lift or stretch, and episodes of pain in either leg (top of the bone in my thighs) with movement, though I'm not sure if all these pains are due to fractures too. I'd assumed spasms were more likely to be due to a muscle problem, but my doctor says they can be caused by a fracture.

 

[Muppetgirl]

It sounds like there are too many things that increase the odds of making things worse by taking it. I'm not sure if there may be other secondary concerns, but I think the main dental concern is the rare side effect of the jaw bone dying (osteonecrosis). I believe the risk is elevated where there are problems maintaining dental health anyway and with invasive dental procedures. My dentist just said he was glad I wasn't taking it, we didn't discuss it further. However, I think if invasive dental procedures are required while on it, then they have to take place in hospital rather than a clinic. To be honest I'm not sure this risk is removed when taken by another route. But maybe the injections would be a different drug group?

I don't know about you but I found my rheumatologists view on medications was sometimes at odds with my GI and other specialists. I think it's worth getting a 360 take on it. I know there are other drugs like selective estrogen receptor modulators (SERM's). I hope you can find something that helps prevent further fractures. Do you have to have any treatment for this fracture? Or is it just a case of rest and pain relief? Thanks for explaining what it's like. I think if I have doubts in future I will get an x-ray to be on the safe side.

 

[UnXmas]

Thanks - I might talk to my doctor, and dentist, and find out exactly what the risks are, and find out why my doctor doesn't seem keen on the injections. I just found this site: http://nof.org/articles/22 I haven't read much yet, but there obviously are a lot of options.

There's no treatment for the fracture, just pain relief. I've read physiotherapy can help so I might ask about that.

I hope you don't have a fracture. I definitely noticed the first time I got back pain. I didn't realise at the time it was a fracture, but it wasn't a case of a fracture occuring without me noticing anything at all. Do you know how bad your bone density is? (T scores or Z scores.)

 

[SarahD]

I'm on alendronic acid, and have been for a couple of years now. I've had no problems from it at all. I had GERD pre-dating the alendronic acid, and I haven't noticed any correlation between the two.

 

[Muppetgirl]

Thanks - I might talk to my doctor, and dentist, and find out exactly what the risks are, and find out why my doctor doesn't seem keen on the injections. I just found this site: http://nof.org/articles/22 I haven't read much yet, but there obviously are a lot of options.

There's no treatment for the fracture, just pain relief. I've read physiotherapy can help so I might ask about that.

I hope you don't have a fracture. I definitely noticed the first time I got back pain. I didn't realise at the time it was a fracture, but it wasn't a case of a fracture occuring without me noticing anything at all. Do you know how bad your bone density is? (T scores or Z scores.)

Yeah I think there are a lot options. It seems like alendronic is still the first line tx, but I really think that having a fracture is a game changer. I think it usually opens doors to more expensive treatments. My rheumatologist was almost blase about it "until your first fracture" despite my age. I hope the pain is better managed and the physio helps if you go for it.

I'd be interested to know whether any of these treatments are successful in preventing more fractures, given the other influences like nutritional and hormonal status which may be somewhat uncontrolled.

Oddly enough I have been dealing with awful tailbone pain for a while, but I'm 99% it isn't a fracture. Mine is sent crazy by weight bearing when sitting. I have an MRI coming up though so will check to be sure! I don't have my scores but I did see the graph at the time, my spine was only just within and my hips a line beneath that (possibly one standard deviation). I haven't had any real treatment though. Did yours worsen rapidly or has it always been quite severe?

 

[UnXmas]

Do you need an MRI to check for fractures? I just had a normal X-ray (actually two - one for the top half of my spine and one for the lower.)

I've had osteoporosis a long time, I think I had a DEXA scan in about 2005, and at that point I had osteoporosis in my spine but osteopenia in my hips. By 2007, I had osteoporosis in my hips as well. The T scores were - 2. something I think. I don't remember the Z scores. Then I didn't have another DEXA scan until this last one, and now my T score is - 4.0 everywhere. They didn't include Z scores in my tests results this time.

I don't know quite how to put the figures into context. I know - 4 is very bad, but I'm not sure whether the rate of deterioration is considered fast.

 

[Muppetgirl]

Some spinal fractures are not spotted on plain x-ray, but I'm sure that would have been my starting point if it had been flagged up. The MRI is a routine one, so it's just that it's handy for ruling it out entirely. It interests me that the tailbone runs parallel to the rectum and has pelvic floor connections; these are more likely sources in my case.

Oh dear, your scores are pretty awful I'm surprised your rheumatologist hasn't arranged regular treatment sooner. Were they waiting for a 'break'? I hope you can get your bone density higher. Exercise can help but that's easier said than done with multiple illnesses.

 

[UnXmas]

I have received treatment before, I've had vitamin D and calcium on and off, in various forms for a while. I'd been talked to about Alendronic acid before too but turned it down because I didn't want to risk the stomach problems. For various complicated reasons I also turned down a referral to an osteoporosis clinic (I'd had issues previously with the doctor running it) and I hadn't bothered asking about repeat DEXA scans for a few years because I was prioritising other health problems and already felt like going to hospital was a full-time job. So I really can't accuse my doctors of neglect. Do you know if declining from - 2 to - 4 over seven or eight years or so is fast?

I've also had a lot of pelvic floor and rectal issues. I hadn't thought they might be conneted.

I do some walking, usually about thirty minutes a day. I've also been seeing a physiotherapist about other things, but I'm going to see about physio for osteoporosis related issues too. For one thing my balance is declining, which obviously isn't good, but I've read physio can help you improve it.

 

[Muppetgirl]

I can sympathise with your reasons for prioritising other health problems. I think it's also difficult to prioritise a 'silent disease'. I don't know if that would be considered rapid. My rheumatologist did make a quip it would be ten years till I had fractures but I don't know if that was based on clinical data, my situation or what. I guess it maybe right for older ladies, which all the data is based on. They give examples of being dx in late 50's or 60's and getting fractures in there 60's and 70's.

Yeah the pelvic floor muscles and the those involved in fecal (in)continence attach to the coccyx. I've also have a lot of inflammation and nerve damage ifrom my disease in that area, so I wonder if this is the cause.

I'm glad you have access to physio. The reduction in mobility post hip or spinal fracture is something I'm afraid of. Anything that helps with that has to be a good thing. I understand the risk of you having another fracture soon is really elevated now, and that can make things really hard. Would you have to wait long to go to the clinic? I hope not.

 

[UnXmas]

I'm not sure how long the waiting lists are, my GP's written to the rheumatologist about it. Does having one fracture make you more likely to get more? When is your MRI?

 

[Muppetgirl]

Fingers crossed you get seen soon then. It does increase the risk of more several fold as the bone is already fragile (Perhaps why your GP has been so spurred into action). They do fracture risk assessments now, but I don't know how useful they are once it's severe. I just re read your original post; a year seems like a long time. I wonder if it's to do with how the bone healed. Did they say what level of the spine the fracture was at?

MRI should be within the next few weeks. It's been ordered but I don't have a date yet.

 

[Muppetgirl]

This article is quite long but it cites some research about increased risk post fracture at the end.

http://emedicine.medscape.com/article/330598-overview#showall

 

[UnXmas]

I haven't got a copy of the X ray report yet, my GP told me over the phone. She did say the level of the fracture, but I've forgotten. I've had pain for over a year but it started getting a lot worse and the episodes of pain became more frequent the past few months.

Thanks for the article, I'll have a look. I hope your MRI results will be ok.

 

[UnXmas]

Sorry to hear about the fracture unxmas. I was given (but did not take) alendronic acid as my GI tract was (and still is) reacting strongly to less potent meds that can affect the GI tract. I have since found out I cannot take it at all thanks to gastroparesis. I believe this is something you have too? Alendronic has cautions listed for the kind of things you mentioned like gastritis and esophageal disorders, but for gastroparesis it is contra indicated entirely. If ulcers and erosions can occur in those with normal gastric emptying then I would not want to imagine what it can do in someone who has delayed emptying - with something so acidic just sitting in your stomach. Please check with you GI for their opinion. Also some dentist won't treat folks who are on it, so to a lesser extent it pays to check with them too.

With a spinal fracture at your age - and the other health problems you have to think about - you are more than entitled to explore the full range of meds out there. Have your estrogen levels been checked? Do you mind me asking what the back pain felt like? In my case my hips are worse than my spine but I have always been afraid of fracturing particularly the spine and not realising. You hear of people with it just sitting down and it causing a fracture.

Hi Muppetgirl, it turns out I got things a bit wrong when I described my pain to you before. My doctor told me the X ray results in detail the other day. It turns out my spine is fractured midway up my back, where I have only minor pain. The spasms at my tailbone are actually from osteoarthritis.

 

[Honey]

Hi there, sorry to hear you are having all these problems. I have been on Alendronic acid for years and even though I have a Hiatus Hernia, it does not bother my tummy. I do have Osteoporosis and my meds have helped, increasing the bone density. I have had a number of falls in the past and broken bones because of balance. I have just found a great relaxing exercise routine!!! Try Tai Chi classes, it is helpful for improving strength and balance too. Most relaxing too!!!

 

[UnXmas]

Thank you for your reply, Honey. My GP has just referred me for physiotherapy, so I'm hoping that will help with my pain and balance too. I haven't tried the alendronic acid. I still have it so I might do if I work up the courage for it. It's encouraging to know your stomach doesn't suffer from taking it.

I've also now had the results of my gastric emptying study I mentioned earlier in this thread, which confirmed I do have gastroparesis.

 

[Honey]

Hi there good luck Remember swallowing a pill once a week,staying up for half an hour then having breakfast, is much easier on you than injections It is important to take this med to avoid bent over back in later life. I had a fall and should have broken my hip but emergency doctor at E R said my med had prevented this!!

 

[UnXmas]

Do the injections have side effects? The injections seem far less harmful thanthe stomach problems and other side effects of the pills.

 

[Honey]

I have a friend who has injections as tabs did not work. I do not know the interval but I have the impression it is unpleasant. However we are all individuals in our treatment so you have to make up your own mind I have been on tabs for years no problems!!

 

[Muppetgirl]

Hi Muppetgirl, it turns out I got things a bit wrong when I described my pain to you before. My doctor told me the X ray results in detail the other day. It turns out my spine is fractured midway up my back, where I have only minor pain. The spasms at my tailbone are actually from osteoarthritis.

Bummer :thumbdown: that really is no good. There seem to be a few people with the two together. I hope it does not dissuade you from getting the osteoporosis treated though.

I still do not know the origins of my tailbone pain, though I'm certain it's not good either.

 

[Muppetgirl]

I have a friend who has injections as tabs did not work. I do not know the interval but I have the impression it is unpleasant. However we are all individuals in our treatment so you have to make up your own mind I have been on tabs for years no problems!!

Just to reiterate, alendronic has cautions listed against it for most upper GI diseases such as gastritis, so it's fine to take as long as the patient is educated about possible risks and responds should they occur. And many patients will find they are fine. Alendronic is contra-indicated entirely for those with gastroparesis. It should not be taken.

Unxmas, please do not try it, it could be dangerous. Your docs did not have confirmation of your gastroparesis dx when it was prescribed. Wait till you have their input.:thumright:

 

[UnXmas]

Thanks, Honey - I think I remember my GP saying it's only two injections a year. I will ask if the injections have side effects too though. I think they're infusions rather than injections, but I've had infusions of other things and didn't find it bad.

Muppetgirl - are you still waiting for tests to diagnose your pain? Did you have an MRI?

 

[Muppetgirl]

Sorry for late reply. Have been dealing with other health issues. Had to postpone MRI. Of course now it's worsened. Story of my life.

I hope you have some good luck with your treatment.

 

[Bunty]

Hi. I've not been on here for a while but am having my first flare up after being diagnosed with ulcerative colitis twelve months ago...which now turns out to be crohns!!
Anyhow, yes, I used to take alendronic acid, for about four years, after being diagnosed with osteoporosis, but stopped last year due to the overwhelming amount of pills I had to take, and the fact I'd never been entirely happy taking it anyway. It never caused me any problems, ever, I took it exactly as directed once a week.
I now take calcichew forte and am happy enough with that, can't see myself ever taking alendronic acid again, my GP hasn't even commented that I stopped it.