Anyone had experience with thinning bones?

[Hayleymariex]

Hello everyone! I haven't been on for a long time, lack of internet and lots of college work to do (take btec law they said! It'll be easier they said! Ha!)

Anyway, this isn't about me. Joe's getting better at caring for his stoma, and so am I, so we take turns to change the bags now. He went to the doctor a while ago, and there's an inflammation in the collagen mesh, so he's been having pains in his chest and stomach (basically where the mesh is) and what also showed up was that he has a low bone density. Has this ever happened with anyone else on here? It's caused by one of his med's, I'm not 100% on which one. He now has to have injections 3 times a week for a few weeks, starting next week, and then onto having them every 12 weeks, and he'll hopefully be able to do them himself after a while. The injections are vitamin D so I assume they'll be to help his bones (and who doesn't need extra vitamin D!)

Be nice to hear of other people with the same experience, feels like we're a little alone at the moment.

Aw, missed you all!

 

[muppet]

Yep, I have low bone density from long term prednisone use. I take Actonel once a week, or rather, I'm supposed to...

 

[Hayleymariex]

Yep, I have low bone density from long term prednisone use. I take Actonel once a week, or rather, I'm supposed to...

Prednisone is the steroids isn't it? Or am I confusing it with something else? Has the actonel helped at all?

 

[Ihurt]

My SIL has suffered Lupus for 16 years. She has had to have multiple surgeries on her shoulder, legs and feet and now need both knees replaced due to long term prednisone. She is it completely wrecked her bones. She said she will not touch steroids ever again no matter what. It sucks, I mean steroids are like the blessing and the curse. You need them, but then they make more problems. I am sorry for what Joe is going through. Hope he gets better soon..

 

[Hayleymariex]

Thank you, that seems to be the case with so many treatments though. Although the help they give is great they often have very severe side effects. Wish they'd work on a drug that wouldn't ruin every other part of their body as well as helping the parts that need it. Doesn't seem like that's on the cards for now though!

 

[steve55]

vitamin d injections are somewhat controversial from what Ive read. It seems that they use D2 rather than D3 which is deemed more effective and not subject to the same overdose risks. Also, the injections are for very large doses which can have an adverse effect on bone density since the body can't use the quantity effectively. I think you should ask the doctor why pills were not tried first prior to initiating injections and what evidence there is to say the injections are effective at increasing bone density.

http://www.ncbi.nlm.nih.gov/pubmed/22369905

 

[UnXmas]

I have osteoporosis. It doesn't cause any symptoms in itself, just makes it more likely that you'll get a fracture. I was advised to be extra careful of situations where this could happen - not to take part in contact sports, for example. One doctor told me not to jump down steps and not to go out in icy weather, but I thought that was a bit extreme. You have to live. I'd rather risk a fracture than limit myself excessively.

As for treatment, it's a bit different if your female. Even though I'm young I'm on hormone treatments for an endocrine condition, but this helps my bones too. I don't take the main osteoporosis treatments because of the side effects they have on the digestive system. I am prescribed a calcium/vit D. supplement. Even though I'm not deficient in calcium, my doctors seemed to think it a good precaution. A lot of people with low bone density improve their diet to include more calcium and vit. D (I think you need the vitamin D to absorb the calcium or something...) - I eat a lot of dairy.

Mostly I wanted to let you know that this hasn't been a terrible condition for me. It can vary hugely it how much it effects each individual. Low bone density is a scale from mild osteopenia to severe osteoporosis, but even then the amount of pain and disability it causes seems very much down to luck - one unlucky fracture can cause a lot of problems, or you can go for years without even knowing you have low bone density at all if you hadn't had scans to tell you. There's every chance this won't end up being a major issue for you. It hasn't been for me and I got it really young, and as I said, I've not gone overboard on treatments or trying to prevent injury, I've just tried to be sensible and take a balanced approach.

 

[muppet]

Oops, sorry, didn't mean to abandon this thread!

Yes, Actonel seemed to help, but it also gave me an odd an unpleasant clicking in my joints, which I think is because the way it works is that it prevents osteo...clasts? ...blasts? from removing "old" bone tissue as it normally would, and the bones get microscopically misshapen, but that's just my layman bedtime story about what's going on, not real science or medicine (as far as I know).

I didn't stay compliant long enough for a follow up bone scan, because I am a jerk who doesn't remember to take once daily pills, let alone once weekly pills.

 

[Susan2]

I was on Prednisolone for 25 years in varying quantities, but have been off it since 2000. I have osteopoenia, but have never had a fracture and as UnXmas says, it hasn't, so far, affected my life. I am currently due for another scan (the referral is travelling around in my handbag). I take vit D in winter and magnesium and, after I have the scan and get the results, my GP and I will probably have our usual discussion about whether I should be on HRT. I'll resist and again he'll end up by saying Ok, let's leave it and we'll review it in 12 months.