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Re: Aumesh - bones

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In a message dated 12/31/00 5:09:53 AM Pacific Standard Time, janetelmes@... writes:

If anyone in the group has experience of biphosphonates I would appreciate

hearing from them please.

I don't know how to get around the problem you have with swallowing pills, unfortunately. I also was a bit put off by the restrictions on taking the those pills, but I've found it to be pretty easy. I was told that they can be taken two hours after eating, with water ONLY, and not to eat for at least half an hour, preferably an hour, afterwards. Those requirements are to make sure the drug is effective. The other requirement is that you not lie down for an hour afterward, to avoid (chemical) damage to the esophogus. I haven't found that it makes me at all nauseated. I usually take the tablet as soon as I get up, and by the time I'm ready for breakfast, an hour has passed -- no problem! If I were working, I could certainly find a three-hour period when I'd have an empty stomach during the day, and I'd probably time it for a period during work.

The thing you must remember is that the bones don't improve for two years after you begin taking the medicine, so don't put it off. And YES, you have to take the calcium! YES, it's important! Be sure not to get the sort that contains oyster shells; my doctor says it's very hard on the stomach.

Harper

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Hello Aumesh

Firstly, having a bone scan is no problem at all, just lay on the couch and

think beautiful thoughts while the machine overhead makes a little whirr.

Very restful.

As you may remember, I have been taking prednisolone since 1967. Around the

1980s I asked the specialist I had at the time if I needed to think about

possible osteoporosis and he replied that on the dose I was on (cannot

remember exactly what it was then) I need have no worries about osteoporosis

and need take no preventive measures.

In 1996 I decided to have a bone scan (I did it privately, not through the

UK's Health Service) and, surprise, surprise, I had osteoporosis in both

areas scanned - spine and hip!! Of course, as well as being a long-term

prednisolone user I am also a female at that 'interesting age' (55yrs) and

not on hormone replacement therapy (even though the doctors have advised me

to take it) but even so, I am young to have the osteoporosis.

My doctor put me on calcium plus vitamin D tablets (which I must admit I

did not take regularly - I hate taking medication if I can help it -

probably stupid of me).

When I was referred to a hepatologist recently he said he wanted me to take

biphosphonates (instead of the calcium tablets) as these drugs were very

good for strengthening the bones. He said that osteoporosis is serious in

liver patients as the liver disease causes bone weakness and because, if I

needed a hip replacement for instance, I would have a problem with a general

anaesthetic as this was a problem with a damaged liver. I have looked up

the internet for biphosphonates and they seem a bit scary to me - a lot of

'can and cannot do' regarding actually taking them plus I am afraid they

will upset my stomach and make me more nauseous than I am already. It says

you must not take them with food and that is the only way I can swallow

tablets so, what to do? Last week I had another bone scan (again at my own

expense) and the osteoporosis has got worse.

Sorry to ramble on. My advice to you and your son is to make sure his diet

is rich in calcium foods and to check up on the vitamins and minerals needed

to make sure the dietary calcium is absorbed. Also to make sure he has

plenty of weight-bearing exercise - check both my views on diet and exercise

with his doctor first of course. Anyway, I would advise 'think bones'

whatever the " You have no need to worry " advice you may get from his doctor.

If anyone in the group has experience of biphosphonates I would appreciate

hearing from them please.

Janet

UK

Re: [ ] Doctor visit, Clyde

> Encouraging news. Things seem to be moving in the right direction. One

> thing I would like to know more about is the background of your Bone

> Density Tests. How many have you had since having had AIH? And what have

> they shown? Also, I would be interested in learning about your Calcium

> (with or with out vitamin D) in take during this time. The reason I am

> asking this is because my son Raj has not had any Bone Density Test so

far

> (has had the disease since May of 99) and I am wondering if it is time now

> to have one. Last time we talked to Raj's doctor he did not think it was

> going to be useful. Are there any harmful side effects of the test?

>

> All comments are welcome on this topic.

>

> Aumesh (son 17 has AIH)

>

> -------

> At 12:09 PM 12/28/2000 -0500, you wrote:

> >I went for my monthly check-up yesterday. AST 22 ALT 17 :-) Catscan

> >shows liver still enlarged even with the good blood work. Doc said my

> >nagging dull pain located by the liver is normal because it's enlarged.

> >Asked him again about my sweat smell of vinegar, he said that was

> >normal. Dosage of prednisone decreased to 7mg. 1 weeks and 6mg for 3

> >weeks. He wasn't too happy about my bone density test, so I have to get

> >another one next week, probably more medicine!

> >

> >-Clyde

> >--

> >Help save a life, become an organ and tissue donor today.

> >

> >

> >

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