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writes I’m sorry I just can’t understand why they’ll give you a line for the bisphosphonate & not give you some TPN aswell. It surely is worth asking them about it seeming though you’ll have a line in.

Well, I actually couldn’t have TPN or SPN through the same line — the bisphosphonates are hugely reactive and have to be given through a dedicated line. I agree with you, though, that if my ortho is happy to stick a line in me, then it’s illogical for the gastro to be so paranoid and reluctant about it. But there’s not much I can do about it, as each consultant has to use their own discretion, and the gastro refuses to give me TPN because he says it’s too risky. <shrug. It doesn’t really matter anyway, IMO, since I’m doing okay-ish on the elemental feed via NG tube. (Actually I ended up at the hospital again last night because my GI tract jammed up completely in response to a slight reduction in my domperidone dosage. I also vomited my ng tube, but that’s just a minor annoyance, it happens often and I just insert another tube myself.) I would have to say "go for it" though – can’t really do you any harm & the benefits would outweigh the risks I should think.

Yep, I agree. I’m going for it, despite the risks. Anything that might ease this damned bone pain that I get would be wonderful. The treatment should start within the next 1 to 2 weeks, I’m told. love from Julie (Natalie). Julie_A (Natalie in real life) Julie’s Anorexia Pages:    http://www.dawnmist.demon.co.uk/ed00.htm

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I’m sorry I just can’t understand why they’ll give you a line for the bisphosphonate & not give you some TPN aswell. It surely is worth asking them about it seeming though you’ll have a line in. Also I think the particular drug you are talking about is always given via IV & one of the main side effects occurs around the site of the cannulla so you’ll want to make sure they use a larger vein for access maybe even a sub clavian??? Again, while you have the cannulla in why not see if you could have some TPN. I would have to say "go for it" though – can’t really do you any harm & the benefits would outweigh the risks I should think. Sonjia

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Dear Julie – I’m afraid that with no medical knowledge I cannot begin to offer advice. But, I wanted to wish you well. You are in my thoughts… let us know what you decide. Take care, Reenie Share what you know. Learn what you don’t.

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Hi, Natalie!  Took a fast look at MEDLINE

(snippo) Thanks for doing that, Connie — much appreciated. I was interested to note that Aredia  (Pamidronate)  is one of the biphosphonates, since I’ve been taking Fosamax, another member of that same chemical "family" for several months now.

That’s right. Fosamax is the one that is licenced for (postmenopausal) osteoporosis, but as you say it often leads to GI side effects, and my consultant says I probably wouldn’t even absorb it given the state of my digestion (or lack of digestion, I should say). so  – why not try it? From the way you have described your condition, certainly it couldn’t hurt to take the risk and follow through with this experiment.

I think you’re right. I doubt that my orthopedic consultant (one of the doctors I *do* trust) would be advocating something experimental and drastic if I didn’t really need it. So, unless I suddenly hear something truly alarming about it (which I doubt), I’m taking a deep breath and going for it. Thanks also to the others who responded with their thoughts and support (Jodie, Kevin…). love from Natalie (Julie). Julie_A (Natalie in real life) Julie’s Anorexia Pages:    http://www.dawnmist.demon.co.uk/ed00.htm

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Julie A- My fingers are crossed for you as well.  Your situation is almost unfathomable to me, and I feel for you.  The best of luck from the bottom of my heart. Jodie

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Hi, Natalie!  Took a fast look at MEDLINE and I see what you mean about the risk factors, but it sounds to me as though this experimental infusion of disodium pamidronate could really help more than hurt.   One of the abstracts on MEDLINE mentioned administering calcium simultaneously, so it sounds as though your doc is on the right track with that suggestion, too. I was interested to note that Aredia  (Pamidronate)  is one of the biphosphonates, since I’ve been taking Fosamax, another member of that same chemical "family" for several months now.  I had not heard of Aredia, so was not sure whether or not it is approved for use in the US, but in checking MEDLINE, I found that indeed it is, for therapy of the same situations  you mention: Paget’s and bone CA.  Again, there was no specific indication of clinicians having used it in the way which has been suggested to you, but it sounds like a reasonable approach based on good scientific evidence of success in almost-similar situations, so  – why not try it? From the way you have described your condition, certainly it couldn’t hurt to take the risk and follow through with this experiment.  The literature seems to report good results for pamidronate therapy for  osteoporosis stemming from other causes (liver transplants, etc.) and so why not try it in your particular situation? Definitely by having the IV infusion as opposed to oral intake, you will avoid the gastric distress that sometimes accompanies such meds. That will make it a little easier to tolerate, I’m sure. As you’ve said, you’ve got little to lose…so, I say, go for it! –Connie — "Starving the flesh wastes the spirit." –Kandis Elliot

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Hi Julie, I’m always interested in hearing what is happening with you, as a.s.e-d is a place for support which we all need.  I’m glad you put up your web page with the updates.  Maybe a detailed update there with some sharing here too? My thoughts are as you say: OTOH I’m inclined to feel that I haven’t got a lot to lose at this stage in my life.

If it were me (and its not, and I couldn’t really say unless I were actually in the situation) I think I would be inclined to go ahead with it.  If nothing else, it might be of benefit for others suffering from osteoporosis if the doctors learn some things. Anyway, I really wish you as much peace as possible, and glad that you have some companions during this phase of your life.  Please feel free to write anytime, although I know you already have lots of support. Kevin K trusting the process…..

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Hi ASED, I’ve just been offered an experimental treatment for my osteoporosis, and after reading up on the medical side of things, thought I’d ask if anyone else here has tried it. The treatment in question is an intravenous infusion of a drug called Aredia (disodium pamidronate), which is normally used for cancers of bone and for Paget’s disease. Because of the extent of my osteoporosis and also malnutrition, my consultant feels that something drastic is required, and says that in some cases this drug has been helpful in treating otherwise-intractable osteoporosis. Because of my wrecked digestive system I don’t absorb a lot of drugs too well by mouth, including the usual estrogen/calcium combo that I’ve been taking for years, so she is also proposing to give me estrogen implants and possibly even intravenous calcium. Anyway, since Aredia is not licenced for osteoporosis and this is all rather experimental (I feel like a guinea pig here!) I wondered if by any chance anyone else here had been offered, or tried, this treatment. The list of risks, cautions and possible side effects is enough to intimidate even a thick-skinned medical person like me, but OTOH I’m inclined to feel that I haven’t got a lot to lose at this stage in my life. Most of my long bones are visibly curved nowadays, I’m three inches shorter than I used to be, and confined to a wheelchair from a combination of bone pain, fibromyalgia, arthritis and muscle depletion. And in constant pain. I’ve lost a further quarter of my bone density in the last year alone, and my consultant feels that unless something is done now, my bones will almost literally fall apart Assuming that I do indeed go ahead with this treatment — I expect to go into hospital in about 2 weeks time — I’ll report back on what happens here, if anyone is interested. Crossing my fingers and worrying… Love from Julie A. Julie_A (Natalie in real life) Julie’s Anorexia Pages:    http://www.dawnmist.demon.co.uk/ed00.htm

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