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Crohn's Disease Forum » Extra Intestinal Manifestations » Treatment for bone pain/osteopenia? Alendronic Acid?


08-18-2013, 02:21 PM   #1
valleysangel92
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Treatment for bone pain/osteopenia? Alendronic Acid?

Hey all.

I've been diagnosed with osteopenia for 2 years, and at first I never had anything for it, I'm not allowed calcium supplements so my doctors decided to leave it and see if it got worse.

The last few months, after a fairly long course of predisolone, I started to get severe joint ache, especially in my back and my hips. My GI thought that it was side effects from the pred but its never really gone away and recently its been much worse and has spread to my neck and wrists.
I had blood tests and xrays to look for any signs of arthritis or AS but they were all normal, so my GI referred me to an endocrinologist to see what they could give me since he's concerned the steroids made the osteopina worse and thats whats causing the pain..

The endocrinologist has given me Alendronic Acid, which I'm pretty unsure about. At first, she filled out the prescription wrong, she failed to say how long she wanted me on the tablets and had put down a dose that doesnt exist in tablet form (35mg). When we went back to get this corrected, she simply doubled the dose. All the information I've seen says they are only for post-menopausal women (im 20) and not to take them if you have a mineral deficiency (im almost constantly aneamic), it also says not to use if you have ulcers, and the last time I had a scope i was covered in them!

The endocrine dr seemed just to focus on the osteopenia and not take much notice of any thing else, so she didnt really fill me with convidence. Im also not totally sure the osteopenia is even the cause, I havent had a repeat DEXA scan and know I'm currently aneamic, which has given me terrible joint ache before, I am on Iron tablets but not tolerating them very well.

Has anyone used this before? What was your experience like? Does anyone have any alternatives to suggest to my GI tomorrow?
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Nicola
coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
08-18-2013, 03:24 PM   #2
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In your signature you write that you have high blood calcium, was the reason found?
08-18-2013, 03:30 PM   #3
valleysangel92
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Yeah its a genetic condition which stops your body recognizing when your calcium starts to get too high, so you keep absorbing it. Its generally harmless provided you have it checked every so often, but its not advisable to take supplements because your body would get over loaded.
08-18-2013, 03:37 PM   #4
nogutsnoglory
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I started off with osteopenia as well and recently had a repeat DEXA scan. I now am diagnosed with osteoporosis (just what I need). My rheumatologist prescribed 50,000 IU of Vit D for 6 weeks. Based on how I am at the time he said we will probably proceed to an osteoporosis medication.
08-18-2013, 03:43 PM   #5
valleysangel92
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I hope it makes a difference for you, based on my calcium issues my drs are saying they dont really want to use vit D either due to the increased calcium absorption, hopefully i'll get referred to a rheumy this time...
08-18-2013, 03:56 PM   #6
SarahD
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Hi Nicola,

I started taking Alendronic acid about 6 weeks ago as I have osteopenia (most likely caused by pred, I'm 25) diagnosed with a DEXA scan earlier this year. I take one 70mg tablet on the same day each week and have had no problems with it so far. You're supposed to take it on an empty stomach with plenty of water, and stay upright for at least half an hour so that the acid doesn't cause damage to your oesophagus. Crohn's-wise I haven't noticed any adverse effects from it and I tend to be sensitive to a lot of things.

Given that you're young it's probably better to get on top of the osteopenia rather than leave it untreated, as bone density naturally decreases with age. I'm not sure if there are any alternatives to Alendronic acid but perhaps it's worth giving it a try, and if you find that you don't get on with it you can always stop taking it and search for something else.

When you're taking a preventative medication, as opposed to taking a medication for something that's currently a problem, it's easy to think that it's not so important. Weak bones can cause a lot of problems later in life though and if you do something about it now then perhaps you can save yourself from having to go through all that trouble and suffering in the future.

Can you discuss your concerns with your doctor? Whether the bone pain is due to the osteopenia or not it still aught to be treated, or at least monitored closely in case it gets any worse. Maybe then the doctor can help you weigh up the pros and cons so you can make a more informed decision about what is best for you.

Sarah
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Symptoms from the age of 12. Mis-diagnosed with UC at the age of 13, and later diagnosed with Crohn's in January 2012 at 24 years old. Disease mainly in terminal ileum.


Current meds:
Azathioprine, Allopurinol, Calcichew D3-Forte, Fortijuice, Alendronic acid, Ranitidine

Previous meds:
Augmentin, Doxycycline, Lansoprazole, Asacol, Pentasa, Prednisolone, Entocort, Cipro, Flagyl, Elemental Extra 028
08-18-2013, 03:59 PM   #7
Honey
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Hi there,
I am on Alendronic acid 70m.g. which I take once a week, on an empty stomach. I was diagnosed with osteoporosis, long before my Crohns was. My bone density has improved by 6%. I hope all goes well for you. Best wishes.
08-18-2013, 04:15 PM   #8
valleysangel92
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Hi Nicola,

I started taking Alendronic acid about 6 weeks ago as I have osteopenia (most likely caused by pred, I'm 25) diagnosed with a DEXA scan earlier this year. I take one 70mg tablet on the same day each week and have had no problems with it so far. You're supposed to take it on an empty stomach with plenty of water, and stay upright for at least half an hour so that the acid doesn't cause damage to your oesophagus. Crohn's-wise I haven't noticed any adverse effects from it and I tend to be sensitive to a lot of things.

Given that you're young it's probably better to get on top of the osteopenia rather than leave it untreated, as bone density naturally decreases with age. I'm not sure if there are any alternatives to Alendronic acid but perhaps it's worth giving it a try, and if you find that you don't get on with it you can always stop taking it and search for something else.

When you're taking a preventative medication, as opposed to taking a medication for something that's currently a problem, it's easy to think that it's not so important. Weak bones can cause a lot of problems later in life though and if you do something about it now then perhaps you can save yourself from having to go through all that trouble and suffering in the future.

Can you discuss your concerns with your doctor? Whether the bone pain is due to the osteopenia or not it still aught to be treated, or at least monitored closely in case it gets any worse. Maybe then the doctor can help you weigh up the pros and cons so you can make a more informed decision about what is best for you.

Sarah
Hi sarah, thankyou

I do understand the improtance of stopping the osteopenia now, but when I was first diangosed it was very mild, so I'm just not sure that its bad enough to be causing all the symptoms I'm having. The doctor that gave me the medication seemed very.... disengaged... she ignored my crohns, my history and my other medications, and doubled my dose without any apparent thought.. when a doctor cant complete a basic prescription, it doesnt give you a huge amount of confidence, you know? I'm also concerned about monitoring, Ive had no real follow up for it at all.

Its good to see it doesnt seem to have an affect on crohns though, so its one less worry. I do get a lot of heart burn though and it has been mentioned that there could be upper GI ulcers, so that's one reason I've held off until i see my GI.

I will definitely be telling my GI all my concerns, hes pretty good, but Ive not seen him since being given this medication. I have two different GIs and this one is the more attentive of the two. ( I have seen and told the other, and they said to wait till after my surgery and they'd look at it again)


Honey, thankyou, its good to see it made a difference
08-18-2013, 04:18 PM   #9
valleysangel92
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Sarah, do you have any idea why they say not to take it if you have any mineral deficiencies?
08-19-2013, 01:19 AM   #10
SarahD
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Sarah, do you have any idea why they say not to take it if you have any mineral deficiencies?
I'm not sure, I didn't know it was a problem. I was told not to take my calcium supplement on the day when I take Alendronic acid as it won't be absorbed, but the rest of the week I'm allowed to take it as normal - so perhaps it's something to do with that? Also if someone has osteopenia or osteoporosis due to mineral deficiencies then it's probably sensible to address the deficiencies first.

I completely understand where you're coming from with not having much faith in the doctor who prescribed the medication for you, some doctors don't seem to worry about the knock-on affects that some medications can have. I suffer from reflux too and it hasn't been any worse since I started the Alendronic acid. Bare in mind though that everyone is different, so what suits one person may not suit another. I don't think there's much harm in waiting to speak to your consultant if the osteopenia is mild. Perhaps if you've got a long wait you could phone and leave a message with the doctors secretary asking the doctor to call you back so that you don't have to wait so long to discuss your concerns with them.

Do you know what your T score was from your DEXA scan? I think my hip was -0.8 and my spine was -2.4 so I'm right on the borderline, but due to my age my GP thought it best to start treatment now.

I'm going to be away until Thursday and not sure if I'll have internet access where I'm going, but I'll check in when I get back.

Have a good week,

Sarah
08-19-2013, 05:26 AM   #11
valleysangel92
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I just got back from the appointment with my GI. He says that he doesnt think there's any urgency to the treatment, and wants me to wait until I see the endocrine again, as he's not sure what dose I'm supposed to be on, and he would rather them see if there's something they can do to help my body use the calcium I already have to restore bone strength.

I don't know what my T score was, I was only 18 when I had it though and at that stage they just wanted to use calcium but that wasn't an option so we couldn't. Its back to waiting now.

Anyone got any ideas regarding the joint pain?
08-19-2013, 10:42 AM   #12
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I have osteoporosis (was diagnosed in my teens) - osteoporosis and osteopenia do not cause pain. They're "silent" illnesses. The only way they'd cause you pain is if they have already led to a break or fracture.
08-19-2013, 10:46 AM   #13
valleysangel92
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I didnt think they did.. maybe i need some new doctors...especially since they can't make their minds up if I even have crohns -_- .. trying to not get stress about it, my joints are on fire . Sorry, feeling a bit sorry for myself today.
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