update on my Mom

[Guest guest]

That Kyphoplasty sounds like the thing for me . I had the fusion and I still need more , but this other procedure sounds like it would take less healing time

Update on my Mom

OK, so she's been going through both (so-called) 'low-dose' chemo once a week and radiation 5 days a week, this 'should' last for 3 weeks,....after that....I'm not yet sure what the next regimen will be nor when.

We also found-out that she has some compression-fractures in her spine,most-likely 'caused'-from her osteoporosis.

They will (soon) be doing a procedure called a Kyphoplasty, it lookslike an interesting procedure which 'seems'-like a 'good-bet' forhelping her with this (newly-found) problem.

(especially when compared to past techniques)

It's basically where a 'small'-incision is made in the back, a tube isput into the fractured/collapsed vertebra/e and a balloon/s is/are inflated in order to reshape the 'semi'-collapsed vertebra, deflated, then a 'high-viscosity' (acrylic-?) bone-cement is pumped in at low-pressure to fill-in the space and the procedure is 'done'.

The cement 'cures' in around 10-15 minutes, so, one can usually go home'same-day' or for a one-night stay.

Here's a link about the Kyphoplasty procedure, if anyone's interested in those types of things.

http://orthoinfo.aaos.org/fact/thr_report_pows.cfm?Thread_ID=470 & mailname=Amir%20M%20Khan%2C%20MD & patientpage=patient_info2.cfm & webid=3725

I am on no-mail on my lists.

So, If people wish to respond to me, please reply toDUG853ATsbcglobal.net(replace "AT" with @)

Catcha all later and thanks for 'listening".

[Guest guest]

Yes, I think it's extremely dangerous to skip all her meds. People who

" stop " Prednisone do it very, very slowly, with frequent blood tests monitoring

the process. Many other medications also require a slow taper.

She needs to talk with her doctor about the nausea, not try to deal with it

herself by stopping medications. I hope she'll do it right away.

Unfortunately, as yet there seems to be just one way to treat AIH: with

Prednisone and, usually, with an immune-sparing immunosuppressant. Different

people require different immunosuppressants. Perhaps there is one that will

leave

her feeling less nauseated.

It's good to be aware that Prednisone has quite a few possible side effects.

One is short-term memory loss, which seems to affect older people more than

younger ones. Mood swings are another possible result.

She also should be taking something for her bones -- calcium citrate with

Vitamin D, for starters, and probably something along the lines of Fosamax or

didronel. Didronel is good for people with digestive tract problems, and those

who can't sit up for very long.

Could her nausea be due to celiac disease, which is another autoimmune

disease? Sometimes people develop that after they develop AIH. Has she become

lactose intolerant? (Lactose intolerance sometimes develops after CD comes

along.)

She should be checked occasionally for glaucoma, cataracts, hypertension,

diabetes, and osteoporosis. My doctor insisted that I receive vaccines for

other forms of hepatitis and for pneumonia. When fall comes, she should get a

flu

shot.

You ask whether she should see a hepatologist or a gastroenterologist. I

think the important point is not the specialty but which person has substantial

experience with AIH. Some hepatologists have seen few cases of AIH, and some

GIs have a lot of experience. The other important point is whether she or he

communicates well and is willing to be responsive to difficulties that may

arise. (My previous GI said he usually had about a dozen patients with AIH.

An

insurance change forced me to leave my HMO. Then I found a hepatologist who

specializes in AIH!)

I'm not so far from your mother's age, just eight years younger. I developed

AIH in 2000, followed by CD. Seven years ago it seemed likely I wouldn't

survive long. I'm still here! I have minor difficulties, some of which I think

are due to Prednisone, some of which are probably due to blood pressure

medication. I keep working on it.

Best wishes.

Harper

In a message dated 6/11/07 7:10:45 PM, cynelliott@... writes:

> She has been doing well on Prednisone & Mercaptopur but now has

> tapered off the Pred and is naseous...today she didn't take any meds

> at all and said she felt better. This seems dangerous! Are there

> other meds she should try?

>

**************************************

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[Guest guest]

Hi everyone,

Well it's been a year since my Mom (age 71) was diagnosed with

AIH...and I am hoping to pick your brains again with a few

questions. I apologize, but maybe one of you can help.

She has been doing well on Prednisone & Mercaptopur but now has

tapered off the Pred and is naseous...today she didn't take any meds

at all and said she felt better. This seems dangerous! Are there

other meds she should try?

She is also on Fosomax and had to take Tylenol with Codeine recently

for a fractured pelvis.

She needs to change doctors. Shouldn't she see a Hepatologist

rather than a Gastroenterologist?

How would I find a good liver doctor in Indianapolis?

Lastly, I was googling, and came across PBC info? What if my Mom was

misdiagnosed and had that? Would it matter?

Any help is appreciated,

Cyndi

[Guest guest]

Hi Cyndi,

You may want to call the Indiana University Medical Center (Hospital) in

downtown Indianapolis. Tell them you are looking for a Hepatologist who

specializes in autoimmune disorders. They may even have someone who does

research on

liver diseases.

There are many other hospitals and local area doctors, but if you don't have

a doctor to refer you, then you might want to start at the top of the pack!

We had good experiences at St. 's Hospital on W. 86th Street (for

cancer treatment) but I don't know if they specialize in liver disease. I

didn't live in Indianapolis when I was diagnosed with PBC.

I guess it takes some calling around. Good luck!

Nina in Bellevue, WA

Leave your organs here on earth,

HEAVEN knows we need them!

SUPPORT ORGAN DONATION

**************************************

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[Guest guest]

Dear Harper, Sharon and Jaana and everyone who responded to my post,

Thank you VERY MUCH for all the information and personal experiences. I really

appreciate the time you all took out of your busy days to answer my questions. I

sent the letters to my Dad in the hopes that he will print them out for my Mom,

and I also sent a list of doctors, with another member's help. Mom doesn't

e-mail. Argh!

Anyway, I just want you to know I am so grateful I can turn to this group for my

Mom. I have benefitted greatly from other for my own health

problems, and I just think these communities are great.

Best,

Cyndi

Re: [ ] update on my Mom

Yes, I think it's extremely dangerous to skip all her meds. People who

" stop " Prednisone do it very, very slowly, with frequent blood tests monitoring

the process. Many other medications also require a slow taper.

She needs to talk with her doctor about the nausea, not try to deal with it

herself by stopping medications. I hope she'll do it right away.

Unfortunately, as yet there seems to be just one way to treat AIH: with

Prednisone and, usually, with an immune-sparing immunosuppressant. Different

people require different immunosuppressants. Perhaps there is one that will

leave

her feeling less nauseated.

It's good to be aware that Prednisone has quite a few possible side effects.

One is short-term memory loss, which seems to affect older people more than

younger ones. Mood swings are another possible result.

She also should be taking something for her bones -- calcium citrate with

Vitamin D, for starters, and probably something along the lines of Fosamax or

didronel. Didronel is good for people with digestive tract problems, and those

who can't sit up for very long.

Could her nausea be due to celiac disease, which is another autoimmune

disease? Sometimes people develop that after they develop AIH. Has she become

lactose intolerant? (Lactose intolerance sometimes develops after CD comes

along.)

She should be checked occasionally for glaucoma, cataracts, hypertension,

diabetes, and osteoporosis. My doctor insisted that I receive vaccines for

other forms of hepatitis and for pneumonia. When fall comes, she should get a

flu

shot.

You ask whether she should see a hepatologist or a gastroenterologist. I

think the important point is not the specialty but which person has substantial

experience with AIH. Some hepatologists have seen few cases of AIH, and some

GIs have a lot of experience. The other important point is whether she or he

communicates well and is willing to be responsive to difficulties that may

arise. (My previous GI said he usually had about a dozen patients with AIH. An

insurance change forced me to leave my HMO. Then I found a hepatologist who

specializes in AIH!)

I'm not so far from your mother's age, just eight years younger. I developed

AIH in 2000, followed by CD. Seven years ago it seemed likely I wouldn't

survive long. I'm still here! I have minor difficulties, some of which I think

are due to Prednisone, some of which are probably due to blood pressure

medication. I keep working on it.

Best wishes.

Harper

In a message dated 6/11/07 7:10:45 PM, cynelliott@... writes:

> She has been doing well on Prednisone & Mercaptopur but now has

> tapered off the Pred and is naseous...today she didn't take any meds

> at all and said she felt better. This seems dangerous! Are there

> other meds she should try?

>

**************************************

See what's free at http://www.aol.com.