Re: Digest Number 458

[Guest guest]

Re anti-GBM and anti-TBM Nephritis: I was diagnosed with acute nephritis

when I was 19, hospitalized, put under the care of a urologist, and given

every test imaginable, even at night and when I was so sick it was torture.

They never discovered a cause. I had very bad kidney pain and blood in the

urine. I was hospitalized when I was too sick to keep an appointment with

the doctor who was treating me for " kidney problems " . I don't know enough

about 's anti-GBM and anti-TBM nephritis to know if either of those

was involved, nor, of course, would anyone have known back in 1969. I

logged on to the AARDA site but couldn't figure out where she got the

GBM/TBM stuff - ?

I did find this info - of interest to me at least, and I hope to others:

" Although autoimmune hepatitis has been recognized for more than 40 years,

only the advent of diagnostic tests for infections with hepatitis B and C

viruses has permitted it to be reliably identified. Even so, up to 5 percent

of patients with autoimmune hepatitis have false positive tests for

antibodies to hepatitis C virus, and about 10 percent of patients with viral

hepatitis have autoantibodies. Nonetheless, it is clear that autoimmune

hepatitis and hepatitis C are completely distinct conditions. There is no

evidence of a link between infection with one of the hepatotropic viruses

and autoimmune hepatitis. Like other autoimmune conditions, autoimmune

hepatitis is a disease of unknown cause that occurs in persons with a

genetic predisposition.

Diagnostic uncertainty is probably the main reason so few trials of

the treatment of autoimmune hepatitis have been performed. The earlier

studies probably included some patients with hepatitis C who had autoimmune

markers, since tests for hepatitis C virus were not available. With a better

understanding of the pathophysiology of autoimmune hepatitis, a better

definition of its target autoantigens, data on its immunoregulatory control,

the availability of experimental models, and more accurate international

diagnostic criteria, there are now firmer grounds for complementary studies

of the natural history and treatment of autoimmune hepatitis.

The short- and long-term efficacy of immunosuppression in patients

with autoimmune hepatitis has been demonstrated unequivocally. In many

cases, however, patients are not treated or treatment is begun too late

because the diagnosis is missed. Autoimmune hepatitis has been considered a

disease occurring predominantly in young women, but up to one third of the

patients are men, and the disease can develop in all age groups. Although

the clinical findings can vary substantially, a chronic fluctuating course

is most common. Up to 40 percent of patients present with acute hepatitis,

but either a fulminant presentation or a long subclinical course with only

minimal elevations of liver enzymes may be seen. Almost all patients have

autoantibodies, but only about two thirds have one of the classic autoimmune

markers: antinuclear or anti-smooth-muscle antibodies. Tests for

autoantibodies to soluble liver antigen, liver cytosol antigen, and the

asialoglycoprotein receptor can help identify most cases.

Hypergammaglobulinemia with a selective increase in serum IgG

concentrations is a characteristic laboratory finding. In addition, HLA

typing should be performed, since most patients are positive for HLA-B8,

DR3, or DR4. If the findings are suggestive but not definitive, a prompt and

complete response to immunosuppressive therapy may confirm the diagnosis. It

is estimated that in Western countries 20 percent of patients with chronic

hepatitis have autoimmune hepatitis, but many cases remain undiagnosed and

thus untreated. Considerable progress in therapy could be made by

considering the diagnosis earlier and more often.

Initial therapy usually includes corticosteroids. Unless the disease

is very mild, therapy should be started at about 1 mg of prednisone per

kilogram of body weight daily. When serum aminotranferasc concentrations

start to fall, the dose of prednisone should be tapered (at a rate of 10 mg

per week, down to a dose of 30 mg per day, and then at a rate of 5 mg per

week, down to a dose of 10 to 15 mg per day). Adding azathioprine can help

keep the required dose of corticosteroids low. Azathioprine takes several

weeks to work and should therefore be initiated as soon as the diagnosis is

certain. Reports from King's College Hospital in London, in particular the

report by s on et al. [October 1995] Journal, have helped define the

role of azathioprine in the treatment of autoimmune hepatitis. The

superiority of azathioprine over corticosteroids in maintaining remission

and its efficacy as long-term maintenance therapy have been clearly shown by

these studies.

The rate of steroid withdrawal and the increased risk of cancer with

long-term and high-dose azathioprine therapy in the study by et al.

merit discussion. The researchers used 1 mg of azathioprine per kilogram

together with prednisolone to induce remission and maintain it for one year.

The dose of azathioprine was then doubled, and the prednisolone was

withdrawn fairly rapidly in decrements of 2.5 mg per day every two weeks.

Why was the dose of azathioprine doubled, and why was the prednisolone

withdrawn over such a short time? More than half the patients in the study

by et al. has arthralgias - presumably a symptom of corticosteroid

withdrawal - which required the use of analgesic agents in about 40 percent

of the patients. In our experience, withdrawal symptoms can generally be

averted by tapering the prednisolone much more slowly (usually, 2.5 mg per

day every three months).

The relatively high dose of azathioprine was probably chosen because

of concern about frequent relapses after the withdrawal of corticosteroids.

After remission, the goal of therapy is to prevent relapses, with minimal

side effects. The risks of osteoporosis and obesity, the most serious

dose-dependent adverse effects of corticosteroids, have to be weighed

against the risk of cancer due to relatively high doses of azathioprine.

Many patients remain in remission with a dose of 50 mg of azathioprine per

day. If this dose is insufficient, it may be safer to add 5 to 7.5 mg of

prednisone per day than to increase the dose of azathioprine to 2 mg per

kilogram per day. Of the 72 patients described by et al., 5,

including 4 who died, had tumors. The risk of cancer is of particular

concern in treating young patients, most of whom require lifelong

immunosuppression.

Other questions remain. First, can this experience in treating

patients with the classic type of autoimmune hepatitis be extended to

patients with autoantibodies to soluble liver antigen or

liver-kidney-microsomal antigen or to the few patients with

autoantibody-negative disease? We believe the answer is yes. Second, which

drugs should be given to the minority of patients who cannot tolerate

azathioprine or who do not have a complete remission? We have had favorable

results with cyclophosphamide. Cyclosporine has been used successfully by

other investigators. Third, should the goal always be complete biochemical

remission, and should mild disease be treated? We believe the answer in both

cases is yes, because fibrosis can develop rapidly, even serum

aminotransferase concentrations are not very high. In the early clinical

experience with this disease, many patients already had cirrhosis at the

time of diagnosis. This is still true today.

Finally, how long should patients be treated? Most patients with

autoimmune hepatitis have to be treated throughout their lives, but 10 to 30

percent remain in remission without medications after a minimum of four

years of maintenance therapy. Before immunosuppressive therapy is stopped, a

liver biopsy should be performed to confirm that there is no inflammatory

activity. After therapy has been stopped, patients should be monitored

closely. Relapses usually occur during the first year but are still possible

after many years.

Two other things - well, I guess I am the only non-neatnik in the group; I

loved things that way but my PRIORITIES were always elsewhere, so if I

couldn't afford to make it happen, it didn't.

Second thing - just MY 2 cents! (And this is from my experience and my

reading only, and obviously flawed as such.)

I believe the fatigue and pain are part of the disease ONLY, and not a

result of prednisone. I have had absolutely NONE of the fatigue and pain

from prednisone, even when I was taking 40 mg. My belief (mine only) is

that because my disease was caught so early (even if 4 years after it

actually began) that I never had those problems, and prednisone certainly

never created them. For those who don't know, I have had two biopsies and

have AIH and PBC. I have been on pred for 4-1/2 years. I believe the

fatigue and pain are due to the severity of the disease, and not to the

prednisone. But this is only my experience and my opinion.

Geri, I have thought about emailing your son too. I won't without your

permission, however.

To all (sorry, ) I have to share my excitement: next week, hopefully,

I will meet in Florida. I have never met anyone with AIH in my life,

despite every effort to find someone in Austin. This means everything to

me.

Night all!

KayK

[Guest guest]

Kay,

Autoimmunity seems to affect every other organ, so why not the

kidneys? Medical science is learning so much but autoimmune diseases are

relatively new to them compared to other diseases that they've been able to

identify for decades and longer. When our son was diagnosed with Lou

Gehrig's Disease in 1995, I don't believe they knew it was an autoimmune

disease. Now they know. And, now I know that I have an autoimmune disease

too and I have a sick fear in my heart that I somehow gave it to him.

One of the doctors I've seen said that my Mom's kidney disease was probably

autoimmune but we may never know. Her HMO screwed up her care and

treatment so badly, I would have to either get a court order or pay

hundreds of dollars for copies of her records. Yet, I was Executor of her

estate and they can't deny my access. They can just make it very

difficult. I'd like to have the information because I suspect a common

thread between my AIH and the many strange kidney problems among the women

in my Mom's family.

Our 22 year old granddaughter has already been hospitalized twice with

kidney stones. Two of my daughters have been treated for them, both while

in their 20's. One of my first cousins on Mom's side almost died from some

rare kidney disorder when she was in her late teens and one of my aunts has

had surgery to correct a condition related to her kidneys. None of that

counts my Mom and aunt who both died from kidney disease, and my

Grandmother who had a kidney removed when she was in her 40's. Not hard to

see a pattern here.

The problem is, I was medically ignorant (and still am, relatively

speaking) and believed that I was invincible so none of this was pertinent

to me. Not enough for me to ask questions that it's now too late to

ask. I have no idea if there is a 'common thread' here but it sure looks

like it. Nor do I have any reason to believe that I have a kidney

problem. I don't really feel sick and kidney disease makes you feel

sick. I don't count pain and blood in my urine ???? I wouldn't have known

about it if it hadn't repeatedly shown up in urinalysis. The left sided

pain could be anything including muscular and the sporadic problem with

being almost unable to pass urine could be caused by fluid build-up in my

abdomen causing pressure. I don't need or want more medical problems but I

also don't want to find out when I hit critical stage that I have a disease

that should have been detected.

Do you still have kidney problems? Strangely, the blood in my urine had

disappeared for the first time in 5 years after I'd been treated for AIH

for nearly a year. I haven't been tested for it again until recently and I

don't know the results. My Internist wouldn't have called me if it's there

because he knows that I've had it for years without diagnosis. I don't

know if that is partly why he referred me to a Urologist or if it's only

because of the left sided pain.

I've also been tested and tested. IVPs and ultrasounds and every other

possible test and no one can find any apparent abnormalities. One doctor

even told me that " some people have blood in their urine and we don't know

why. " Yeah. But, shouldn't we try to find out why? Nothing happens for

no reason. The first time I was ever sent to a Urologist was in 1972 and I

agree, back then they didn't know a lot of things they know today. I don't

even remember why I was referred, but they gave me that dumb test where you

stand on a board, more or less, in a dark room filled with medical people

(about 4 of them) and try to piddle into a bottle you're holding

conveniently at the ready. Needless to say, I couldn't do it. Not that

I'm shy. When it finally started, it ran past the bottle and all over my

feet and the floor. One of the more humiliating experiences of my

lifetime. Someone should have said, " Smile! You're on Candid

Camera. " That's how I felt.

Maybe one days these medical mysteries will begin to unravel.

Take care,

Geri

[Guest guest]

Nevil Burns,

I have lived alone for 7 years with this illness. During the worst

bedridden episodes I had to be taken in by family and friends for months

at a time. But now I have some state-funded services which allow me to

hire a personal care attendant (PCA). This has worked out wonderfully and

given me back my independence. My PCA can help with any personal needs as

well as light house cleaning, all groceries and shopping, cooking,

driving me to drs. appointments, walking the dog. Lifting things I can't

lift, helping out if I end up in the hospital. It has made a major

improvement in the quality of my life. My program is unique to my state

in the US but I know other states and other countries have something

similar. The PCA help allows me to live at a better level at illness and

with fewer severe and drastic downtimes. It is very stabilizing. Without

this service I couldn't manage alone. best, E.

>Hi Everyone,

>

>Does anyone have CFS/FMS and live alone ? If so how are you managing

>by yourself..

>

>Nevil Burns

>South Australia

[Guest guest]

> I only remember getting Personal Dragons from you and that was fine. I

> remember giving you permission and it was printed perfectly. In fact, I

used

> your printing of it as an example to the other party that not everyone is

so

> offended by the word " vegetable " that they won't even let it be used to

prove

> a point. I don't know of any other stuff of mine that you have used.

Hi Sue;

I also used " have you ever seen a miracle " (I am going by memory so that

title might be slightly wrong). With this one I asked permission and sent

you a copy....you e-mailed me after you got it. It was the June 2000 issue

with Judi's boys on the covers. Remember?

[Guest guest]

In a message dated 9/25/00 1:10:37 AM US Mountain Standard Time,

egroups writes:

>

> Will you please provide the website address that talks about canine cancer?

>

> Thanks.

sure....let me gather it.... I belong to Wellpet (animal list)and they are a

list of very intune people who have saved ...extended ....the quality of life

for their animals. It is amazing to see what can be done in a blind trial

type of situation. Due to the fact that these critters don't know how you

want them to respond. Actions and reaction are fast . I have learned much

from our wonderful animals.

karen

A NEW ERA ON THE HORIZON...Bush J Bush J Bush J Bush J Bush

Ch.CopperCreeks Natali and Ch.EJ's Amazing G-Force just got married.....think

pink!

<A HREF= " http://www.coppercreekminiaturedachshunds.com/ " >CopperCreek

Miniature Dachshunds A loving collection of the fabric of my life</A>

<A HREF= " http://www.coppercreekminiaturedachshunds.com/wsn2AEC.html " >COPPERCRE

EKS HOME BRED CHAMPIONS</A> J <A

HREF= " http://www.zing.com/cgi-bin/album.cgi?album_id=4294918411 " >COPPERCREEK

MINIATURE DACHSHUNDS</A>

<A HREF= " http://www.zing.com/cgi-bin/album.cgi?album_id=4294850633 " > </A>

[Guest guest]

Good morning! Hope this isn't a dumb question, but where can I find mica

powders? Thanks in advance!

in NJ

[Guest guest]

Gail, I have to say that " A Special Kind of Hero " was the very best book I

have ever read. And I mean dealing with Down Syndrome or otherwise. It

touched my heart like nothing before. I laughed, I cried, and I got mad.

The book was recommended to me when the boys were about 4 months old, and I

had to buy it in a used book store because it was the only place I could find

it. I have since passed it around to members of my family, and friends as

well.

I felt a little silly, because when we went to the Buddy Walk last October, I

asked to sign it for me. I'm not sure how appropriate that was, but it

was an awesome experience for me. The courage he showed, and the steps his

parents and family went through to get him on the right path were a definite

inspiration to me, and gave light to a very dark period. I suggest it to

anyone, whether they have experience with Ds or not.

VERY GOOD READ

BETH, MOM TO AUSTIN DS AND DAKOTA, 4

[Guest guest]

Re: Drooling:

I am behind reading all the posts.

Can't remember who mentioned this concern.

Our son used to drool all the time, lots of other problems

as well.

I took him to a wonderful D.O. and had Cranial Sacral

therapy for a sold month. Many things changed

with our son. But the drooling stopped, his face and

head shaped changed as well, ulcers were gone as well.

I do want to mention, not all D.O.'s are created equal

I took on a big search to find one so talented

(traveled 1500 miles)

I would not want to give a small child the medicine

either, and if worst comes to worst after years

of all else failing; have the surgery.

Allie

[Guest guest]

I mean part of a chrom...not a gene...

[Guest guest]

Jessie,

It seems as though the Portland Soup Night has disappeared. Meetings used

to be the third Wednesday of the month, but nothing was posted this last

time around. There is a group that meets for lunch in Vancover, but is

hard to get to during work hours. I'm always available via email.

Shana

02/25/2003

220/187/150

[Guest guest]

The Portland evening soup night has not disappeared completely. I

was on vacation this month and was gone on the 3rd Wed. We will have

one in the 3rd Wed. in August. Hope to see you there.

- Chris

> Jessie,

> It seems as though the Portland Soup Night has disappeared.

Meetings used

> to be the third Wednesday of the month, but nothing was posted

this last

> time around. There is a group that meets for lunch in Vancover,

but is

> hard to get to during work hours. I'm always available via email.

>

> Shana

> 02/25/2003

> 220/187/150