What Osteoperosis meds do you take?

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nogutsnoglory

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Since prednisone kicked in Osteoperosis for me I need to start a biophosphonate to help rebuild my bones and prevent further degradation. I know zero about this stuff.

Can anyone advise on what they take? I'm sure my rheumatologist will present me with a drug but I want to come to him educated about my options.
 
I don't know much about these treatments. I know my mother wanted me to look for Prolia as it had been suggested for her. It's not a biophosphonate, it's a bone "humira". I just mention it, maybe you want to give a look at that drug too before your appointment.
 
i heard a pill once a month. not sure of the name. i use calcium, vit d, magnesium, looking into different types(chelated) lots of stretching,walking. it has helped me tremendously!
 
I have osteoporosis and take nothing (except oestrogen, which I take primarily for other reasons, but it helps with osteoporosis, at least in females). The usual osteoporosis meds I can't take because I already have terrible heartburn/reflux and the last thing I needed was to make that worse - it's an almost unavoidable side effect of the meds they wanted me to take, which I can't remember the name of so sorry that's not very helpful! I did get prescribed a vitamin D/calcium supplement for a while.
 
I have osteopenia but I can't take calcium supplements so I was given alendronic acid to take. I'm not currently using it as there is some confusion over the dose.

You take it once a week and there are lots of rules for taking it, you have to have it first thing, before eating or drinking, you cannot lie down after taking it, you have to drink a full glass of water with it, then not eat or drink anything else for at least half an hour. It's a pain but others here take it and say it's not that bad when you get into a routine.
 
I also take Alendronic acid, 70mg once weekly, for osteopenia. I've been on it for a few months now and I haven't any problems from it. As Nicola mentioned there are a few rules for how it needs to be taken which are annoying, but since it's only once a week it's not too hard to put up with. I'd rather the slight inconvenience of taking the AA than ending up with weak bones if left untreated.
 
My osteopenia was never treated and now I wonder if my doctor was negligent and could have prevented or delayed the onset of Osteoperosis.
 
I've been on pred so many times but my GI never even suggested I have a bone density scan, and if I hadn't asked for one I doubt it would have been offered. I don't understand why doctors don't automatically consider these sorts of things for us - poor absorption, avoidance of dairy products, plus likely use of steroids puts us at risk. Did you have a bone density scan where you were diagnosed with osteopenia NGNG, and then a second one where you were diagnosed with osteoporosis? When I had my bone density scan my T score in my hip was -2.4 and in my lower spine was -0.8 if I remember correctly. -2.5 is the cut-off for diagnosing osteoporosis so I'm not far away, hence why my doctor recommended treatment for me. I'd be concerned if I'd been diagnosed with osteopenia and not given medication unless I was right on the borderline of normal/osteopenia.
 
You take it once a week and there are lots of rules for taking it, you have to have it first thing, before eating or drinking, you cannot lie down after taking it, you have to drink a full glass of water with it, then not eat or drink anything else for at least half an hour. It's a pain but others here take it and say it's not that bad when you get into a routine.

This sounds like the treatment I was talked to about, but didn't take due to the reflux and heartburn issues. But my reflux is so severe that it causes my stomach and oesophagus to become inflamed and bleed, and it's one of the reasons why I find it so difficult to eat enough to maintain weight.

I have osteoporosis that's apparently very severe for my age, but it's really the lesser of two evils for me to go without treating it. I've never had any type of fracture, so it seems I'm making the right call, at least so far.

My osteopenia was never treated and now I wonder if my doctor was negligent and could have prevented or delayed the onset of Osteoperosis.

They might have thought you didn't need treatment due to being young and male. There may have been other factors such as why my doctors didn't offer me all the treatments - they might have thought that with Crohn's they didn't want to aggravate your digestive problems. Were they not expecting you to need so much prednisone earlier in the course of your illness? Bone density loss is dose-dependent I believe (i.e. the length of time you're on pred and the strength of the dose affect the severity of bone loss).

It doesn't sound right though, if you were officially diagnosed with osteopenia, they should at least have talked to you about your treatment options. Did they even discuss lifestyle changes with you? I was talked to a lot about avoiding contact sports (not that I'd ever have played contact sport no matter the state of my bones!), including calcium in my diet and in supplements, monitoring bone density with DEXA scans every two years, etc. etc.

Maybe you could ask to see a rheumatologist? They'd be the experts to advise you on this. Bone density can be reversed in some cases, I believe even once it's got to the osteoporosis stage, it can be improved, especially if you're young. You can certainly slow down any further deterioration, so don't be too discouraged, it might not be too late to improve your bones and minimise future fracture risk.
 
If you are also suffering from excess acid, GERD, heartburn... then it may be adding to your osteoporosis condition. There are a couple of conditions (I don't trust my memory) possibly hyper-acidosis or lactic-acidosis... fueled by diet, where the body tries to remedy the condition by taking calcium from anyplace it can. Pred is known to cause osteo... I had to have a density scan... there I was, in a hospital gown in a room full of women waiting for their scans.. and all of them giving me the evil eye.. I don't look like I would be a candidate... but I digress. Thing is... with the disease, the meds, and the pred... if you complain about stomach acid, heartburn, etc., a doctor might just think it is from those ... AND not look to see if there is another, underlying issue. I think you can... curb.. the acidosis.. thru diet. I really don't know enough about it to offer any real insight... but I do know these conditions can/do exist, and trying to treat the osteoporosis IF you also have one or more of those conditions.. would be an uphill battle. I 'think' that dairy products.. can actually make these condition worse, yet often people will try to combat acid stomach by drinking extra milk, eating ice cream, etc.. It might be worth your while to investigate it further, or even ask a doctor for info.
 
Hi there , I take Alendronic acid once a week, following the instructions others have mentioned. As well as Crohns, I have also had a hiatus hernia for years. I take Cimetide daily and have no problems with reflux. So take the meds for osteoporosis as it wil help. Do not worry. Your bone density can improve by 6%; minds did! Best wishes.
 
My GI at the time ordered the DEXA scan which came up as osteopenia but he never suggested medicine nor did he suggest seeing a rheumatologist. Fast forward 3-4 years I figured I should get a DEXA scan and this time with a rheumatologist and the diagnosis was Osteoperosis. I am angry now that the original GI did nothing. He made me get a test for nothing and I didn't know about the consequences of non treatment.
 
Last October, I had a Dexa scan and was diagnosed with osteoporosis. In March, I took Reclast, which is a once a year infusion to treat osteoporosis. I also take one Calcium pill a day. I will be getting a follow up Dexa scan this October to see how I am doing.
 
I'm really sorry about that NGNG, in my opinion the doctor is responsible for discussing the pros and cons of treatment with you. Even if they thought the osteopenia was mild enough to justify not treating it they should have at least said so. Do you have any idea what you T scores were from your DEXA scan? The only thing I can think of is perhaps you were at the milder end of osteopenia so your doctor thought it didn't necessitate treatment at the time, but things progressed faster into osteoporosis than expected.

It's awful knowing that it could have been treated sooner to stop you reaching this stage. However as UnXmas said it's not too late to start treatment which could improve the situation greatly.
 
Thanks Sarah I really have no clue on the T scores and I'm not sure I can obtain the report since the place I went to is now closed.

Id love to do an annual infusion of Reclast but think the doctor will say I need a daily pill to reverse it more quickly. I don't know but an annual would be so much more convenient.
 
Talk to your rheumatologist and make sure your insurance covers Reclast. My rheumatologist chose Reclast for me because many of the oral meds for osteoporosis are rough on the stomach. The one side effect I had with Reclast is that I felt slightly feverish 24 hours after the infusion, but it wasn't a big deal.
 
Id fight the hell out of insurance if they don't cover it. I would have a strong appeal if those other meds irritate the stomach.
 

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