Re: Newly diagnosed with Autoimmune Hepatitis and PCS

[Guest guest]

Hi Karey,

I agree with most of the last email but disagree with the "Liver Cleanse, No such thing. Don't waste your money or further ruin your health. The liver doesn't need a cleanse, neither does your bowel. Beware of these foolish hoaxes". I have many reasons I believe that liver cleansing does help but you must see the right person. I don't believe it is a cure all but it can be helpful. Taking herbs also very helpful (but at safe levels) and acupuncture I believe has really helped my Dad. Taking care of your self with eating very healthy, exercising, staying happy will all help, however putting are full trust in these things is not good but putting are full trust in God is! The reason my Dad is doing so well is due

to prayer!!! The author Jordon Rubin has many books out on diets that help disease and prevent it.

Lori A.

"Aggressively Pursuing Solutions To Your Real Estate Needs!"

First Weber Group

Cell:

1507 E. Sunset Drive

Waukesha, WI 53189

LoriUSA@...

www.Lori.FirstWeber.com

Newly diagnosed with Autoimmune Hepatitis and PCS

Hello,I was just diagnosed a month ago with autoimmune overlap which means Ihave both autoimmune hepatitis and PSC. I am 33 years old and have 5year old twins and a 20 month old. I have been trying to process allthis information and I have so many questions so I was hoping some ofyou could help me.My biggest question is from what I read on the internet most peoplewith PSC need a liver transplant within 10-12 years of being diagnosedwith it. Is this true? My doctor put me on prednisone and immuran and my liver enzyme levelsare going down, but I'm not sure if it's helping with the PSC. I'veread about Actigall and wondered if you all would recommend it to helpwith PSC.Have anyone been doing alternative medicine along with medicinal. Suchas liver cleanses? master cleanse? acupuncture? Has this helpedanyone? Any suggestions?Also, how is everyone's cholesterol levels. Mine are in the 400's

andthey say it's from the liver? I eat very well and exercise so it isn'tthat.Thanks for listening!Karey

[Guest guest]

Lori,

I don't know how to put this properly. These

therapies might have been to be helpful to you, and they might be of help to

Karey. But! Generally speaking the results of alternative therapies like these are

dubious at best, and sometimes even harmful. If liver cleansing appeared to be

helpful for you, that is very good news indeed. I myself though would never

advise anyone to try it, or tell anyone to start taking herbs. Definitely not to

someone who just wrote a first mail to the group. Also, now is not the right

time. We just found out the hard way that the " golden standard " of

PSC therapy (high dose UDCA) appears to be harming the liver as well. The liver

is a very complex organ and much is still to be understood. In my humble

opinion the placebo effect is at work in the therapies you are referring to,

but that is an opinion, and I can't substantiate it.

Jordon Rubin lost a few court cases for

making unsubstantiated claims in the last few years

http://www.quackwatch.com/11Ind/rubin.html

And yes, I know that quackwatch itself is

not perfect either. But if they won a court case against Jordon Rubin it

appears that in this case their claims were substantiated.

Regards,

Chaim Boermeester, Israel

From: [mailto: ] On Behalf Of Lori

Sent: Tuesday, July 01, 2008 04:42

To:

Subject: Re: Newly

diagnosed with Autoimmune Hepatitis and PCS

Hi Karey,

I agree with most of the last email but disagree with

the " Liver Cleanse,

No such thing. Don't waste your money or further ruin your health. The liver

doesn't need a cleanse, neither does your bowel. Beware of these foolish

hoaxes " . I have many reasons I believe that liver

cleansing does help but you must see the right person. I don't believe it is a

cure all but it can be helpful. Taking herbs also very helpful (but at

safe levels) and acupuncture I believe has really helped my Dad. Taking care of

your self with eating very healthy, exercising, staying happy will all

help, however putting are full trust in these things is not good but

putting are full trust in God is! The reason my Dad is doing so well is

due to prayer!!! The author Jordon Rubin has many books out on diets that

help disease and prevent it.

Lori A.

" Aggressively

Pursuing Solutions To Your Real Estate Needs! "

First Weber Group

Cell:

1507 E. Sunset Drive

Waukesha, WI 53189

LoriUSA (AT) Yahoo (DOT) com

www.Lori.FirstWeber.com

Newly diagnosed with Autoimmune Hepatitis and PCS

Hello,

I was just diagnosed a month ago with autoimmune overlap which means I

have both autoimmune hepatitis and PSC. I am 33 years old and have 5

year old twins and a 20 month old. I have been trying to process all

this information and I have so many questions so I was hoping some of

you could help me.

My biggest question is from what I read on the internet most people

with PSC need a liver transplant within 10-12 years of being diagnosed

with it. Is this true?

My doctor put me on prednisone and immuran and my liver enzyme levels

are going down, but I'm not sure if it's helping with the PSC. I've

read about Actigall and wondered if you all would recommend it to help

with PSC.

Have anyone been doing alternative medicine along with medicinal. Such

as liver cleanses? master cleanse? acupuncture? Has this helped

anyone? Any suggestions?

Also, how is everyone's cholesterol levels. Mine are in the 400's and

they say it's from the liver? I eat very well and exercise so it isn't

that.

Thanks for listening!

Karey

[Guest guest]

Karey,

I am so sorry to hear about your diagnosis. I was just recently

diagnosed with PSC as well. I am 34 with two children (3.5 and 8

months). When I first read the material online and saw the " 10-12-

year prognosis " , I was very upset and scared, mostly at the thought

of leaving my children orphaned. But I see things differently now,

largely thanks to this group and what's I've learned from people

here. For some people the disease progresses very slowly. And then,

even when you reach that end state where your liver no longer

functions, the outcome is rarely death, but a transplant. My

dermatologist (of all people) told me last week that these days a

transplant is like falling off the bed. I doubt it's that easy, but

my doctor (Dr. Lindor, at Mayo Clinic) did say that transplant

outcomes for PSC patients have been very good. So there is lots of

reason to be optimistic.

For me right now my biggest fear is the onset of symptoms and

uncertainty about how that will affect my quality of life. But I

suppose I'll cross that line when I get to it. We are not aware of

what we are capable of until we get there. For example, in the past 9

months I had a baby, I had major abdominal surgery (colon removed), I

was on the job market and found a job, I finished my dissertation,

and I was diagnosed with PSC. All with a husband who, though very

supportive, works 14 hours a day. If you told me a year ago that I

would go through all those things I wouldn't think it was possible,

and it was a little nutty, but I did it.

As for alternative therapies, I have been seeing a Chinese doctor

(who is also an MD) and he has been helping me mostly with non-PSC-

related problems. The major one has been sleep. Since the diagnosis I

can't sleep. He does acupuncture and gives me herbs and it really

helps. In fact, I'm seeing him tomorrow and I can't wait, because the

past few nights have been sleepless again. He also gives me advice

about diet, which helps my digestion post-surgery.

I would also really recommend taking care of your soul/psyche.

Especially as a mother to young children, you are doing a lot of

giving. You should make sure that your needs are met too. A

therapist, rabbi/pastor, friends - somebody who will help you process

and give you a safe space to talk about issues that people don't

normally feel comfotable talking about. I try to spare my parents

talk about my own death, because they are having a hard time dealing

as it is (and my dad is dealing with his own health problems), so

it's good to talk to someone who isn't as invested. Otherwise, yoga,

massage, running, reading - whatever rejuvinates you, make sure you

fit it into your life.

Good luck,

Ruth

UC - 2000, Colectomy - 2007, PSC - 2008

>

> Hello,

> I was just diagnosed a month ago with autoimmune overlap which

means I

> have both autoimmune hepatitis and PSC.

[Guest guest]

----Original

Message-----

but disagree with

the " Liver Cleanse,

No such thing. Don't waste your money or further ruin your health. The liver

doesn't need a cleanse, neither does your bowel. Beware of these foolish

hoaxes " .

It might be helpful for

the group to know that the person who wrote “beware of these foolish hoaxes”

is a doctor and not just your run of the mill family doctor. He has PSC, he has had a liver transplant

(and is back at work), he now has rPSC and stays on top of all the latest

medical news. Not to mention he is

married to a doctor. He knows what

he is talking about.

Barb in Texas - Together in the Fight.... Whatever it

Takes!

[Guest guest]

I agree with Chaim regarding taking herbs & supplements or doing a liver cleanse. However, people keep pushing herbs on me, so I politely tell them I'll ask my hepatologist, which I do. And my hepatologist then tells me that herbs & supplements are not rigorously tested like other prescription meds are, so it's hard to know what harmful effects there may be (or if there are any positive effects). And now it turns out that even our trusted Urso isn't necessarily a good thing. Just remember that when there's a difficult disease, there are plenty of "snake-oil" salesmen out there who will take your money and make promises they can't keep. I'll admit that I'm jaded since my father listened to one of them (a quack listed on quackwatch) when he was diagnosed with prostate cancer, and in my opinion he died needlessly from prostate cancer. His medical doctor had given him an excellent prognosis. But my dad didn't want conventional medicine (surgery or radiation).I would also like to add to the orginal e-mail that prednisone & imuran are specifically used for autoimmune hepatitis, and not for PSC. The pred. & imuran will NOT help the PSC. Prednisone is a god-send in that it acts quickly to control an autoimmune response, but it has very wicked side effects (osteoporesis, increased risk of cancer, cateracts, increased risk of diabetes). Your doctor will try to wean you from this medicine, and hopefully that will work w/out causing the AIH to come back in full force. You should probably have your bone density checked, and possible start taking calcium & boniva or fossimax to strengthen your bones, as taking prednisone will weaken your bones, and possibly cause very painful bone fractures. WHATEVER YOU DO, DON'T SUDDENLY STOP TAKING THE PREDNISONE - you need to be weaned off the prednisone or you could permanently shut down your adrenal glands.Also, when taking 10 mg of prednisone (or more) for a month or more, your adrenal glands will temporarily shut down, since your adrenals see all the prednisone and figure they don't need to produce hydrocortisone (prednisone). Your body normally produces 5 mg of hydrocortisone a day anyway. But during stress, your body can produce much more. If your adrenals have shut down temporarily (called adrenal gland insufficiency), then when under stress you probably need an extra dose of hydrocortisone. You MAY need to double your dose of prednisone when under stress (ask your doctor before doing this). If you go to the ER, be SURE to mention that you are taking prednisone so you can be given an extra dose of prednisone. If you are unconscious you can't tell them, so you should be wearing a medic alert bracelet that will alert them to your medical conditions (such as steroid induced adrenal insufficiency). I have a medic alert bracelet for the adrenal gland insufficiency, as well as another medic alert bracelet for the j-pouch I have (recommended by a j-pouch surgeon). You should be able to get all your medical conditions on one medic alert bracelet. You can check the internet for various vendors of these bracelets. I would then call to talk to someone when ordering the bracelet or necklace or other product.Marie

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[Guest guest]

I agree with Chaim regarding taking herbs & supplements or doing a liver cleanse. However, people keep pushing herbs on me, so I politely tell them I'll ask my hepatologist, which I do. And my hepatologist then tells me that herbs & supplements are not rigorously tested like other prescription meds are, so it's hard to know what harmful effects there may be (or if there are any positive effects). And now it turns out that even our trusted Urso isn't necessarily a good thing. Just remember that when there's a difficult disease, there are plenty of "snake-oil" salesmen out there who will take your money and make promises they can't keep. I'll admit that I'm jaded since my father listened to one of them (a quack listed on quackwatch) when he was diagnosed with prostate cancer, and in my opinion he died needlessly from prostate cancer. His medical doctor had given him an excellent prognosis. But my dad didn't want conventional medicine (surgery or radiation).I would also like to add to the orginal e-mail that prednisone & imuran are specifically used for autoimmune hepatitis, and not for PSC. The pred. & imuran will NOT help the PSC. Prednisone is a god-send in that it acts quickly to control an autoimmune response, but it has very wicked side effects (osteoporesis, increased risk of cancer, cateracts, increased risk of diabetes). Your doctor will try to wean you from this medicine, and hopefully that will work w/out causing the AIH to come back in full force. You should probably have your bone density checked, and possible start taking calcium & boniva or fossimax to strengthen your bones, as taking prednisone will weaken your bones, and possibly cause very painful bone fractures. WHATEVER YOU DO, DON'T SUDDENLY STOP TAKING THE PREDNISONE - you need to be weaned off the prednisone or you could permanently shut down your adrenal glands.Also, when taking 10 mg of prednisone (or more) for a month or more, your adrenal glands will temporarily shut down, since your adrenals see all the prednisone and figure they don't need to produce hydrocortisone (prednisone). Your body normally produces 5 mg of hydrocortisone a day anyway. But during stress, your body can produce much more. If your adrenals have shut down temporarily (called adrenal gland insufficiency), then when under stress you probably need an extra dose of hydrocortisone. You MAY need to double your dose of prednisone when under stress (ask your doctor before doing this). If you go to the ER, be SURE to mention that you are taking prednisone so you can be given an extra dose of prednisone. If you are unconscious you can't tell them, so you should be wearing a medic alert bracelet that will alert them to your medical conditions (such as steroid induced adrenal insufficiency). I have a medic alert bracelet for the adrenal gland insufficiency, as well as another medic alert bracelet for the j-pouch I have (recommended by a j-pouch surgeon). You should be able to get all your medical conditions on one medic alert bracelet. You can check the internet for various vendors of these bracelets. I would then call to talk to someone when ordering the bracelet or necklace or other product.Marie

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[Guest guest]

Marie -

Great information - thank you! And I second your thoughts on carrying list of medications and/or wearing the medic alert bracelet.

One other thought on herbs, cleanses, etc - when a large review of studies are done, like a "meta analysis", herbs, cleanses, etc. almost never accomplish the stated goals. Tiny studies, often are only "case studies" - do not stand up to rigorous scientific review.

Joanne H

(, Ca., mom of , 18 UC/PSC 2-06, JRA 1998)

I agree with Chaim regarding taking herbs & supplements or doing a liver cleanse. However, people keep pushing herbs on me, so I politely tell them I'll ask my hepatologist, which I do. And my hepatologist then tells me that herbs & supplements are not rigorously tested like other prescription meds are, so it's hard to know what harmful effects there may be (or if there are any positive effects). And now it turns out that even our trusted Urso isn't necessarily a good thing. Just remember that when there's a difficult disease, there are plenty of "snake-oil" salesmen out there who will take your money and make promises they can't keep. I'll admit that I'm jaded since my father listened to one of them (a quack listed on quackwatch) when he was diagnosed with prostate cancer, and in my opinion he died needlessly from prostate cancer. His medical doctor had given him an excellent prognosis. But my dad didn't want conventional medicine (surgery or radiation).I would also like to add to the orginal e-mail that prednisone & imuran are specifically used for autoimmune hepatitis, and not for PSC. The pred. & imuran will NOT help the PSC. Prednisone is a god-send in that it acts quickly to control an autoimmune response, but it has very wicked side effects (osteoporesis, increased risk of cancer, cateracts, increased risk of diabetes). Your doctor will try to wean you from this medicine, and hopefully that will work w/out causing the AIH to come back in full force. You should probably have your bone density checked, and possible start taking calcium & boniva or fossimax to strengthen your bones, as taking prednisone will weaken your bones, and possibly cause very painful bone fractures. WHATEVER YOU DO, DON'T SUDDENLY STOP TAKING THE PREDNISONE - you need to be weaned off the prednisone or you could permanently shut down your adrenal glands.Also, when taking 10 mg of prednisone (or more) for a month or more, your adrenal glands will temporarily shut down, since your adren! als see all the prednisone and figure they don't need to produce hydrocortisone (prednisone). Your body normally produces 5 mg of hydrocortisone a day anyway. But during stress, your body can produce much more. If your adrenals have shut down temporarily (called adrenal gland insufficiency), then when under stress you probably need an extra dose of hydrocortisone. You MAY need to double your dose of prednisone when under stress (ask your doctor before doing this). If you go to the ER, be SURE to mention that you are taking prednisone so you can be given an extra dose of prednisone. If you are unconscious you can't tell them, so you should be wearing a medic alert bracelet that will alert them to your medical conditions (such as steroid induced adrenal insufficiency). I have a medic alert bracelet for the adrenal gland insufficiency, as well as another medic alert bracelet for the j-pouch I have (recommended by a j-pouch surgeon). You should be able to get all your medical conditions on one medic alert bracelet. You can check the internet for various vendors of these bracelets. I would then call to talk to someone when ordering the bracelet or necklace or other product.

Marie

Use video conversation to talk face-to-face with Windows Live Messenger. Get started.

[Guest guest]

Marie -

Great information - thank you! And I second your thoughts on carrying list of medications and/or wearing the medic alert bracelet.

One other thought on herbs, cleanses, etc - when a large review of studies are done, like a "meta analysis", herbs, cleanses, etc. almost never accomplish the stated goals. Tiny studies, often are only "case studies" - do not stand up to rigorous scientific review.

Joanne H

(, Ca., mom of , 18 UC/PSC 2-06, JRA 1998)

I agree with Chaim regarding taking herbs & supplements or doing a liver cleanse. However, people keep pushing herbs on me, so I politely tell them I'll ask my hepatologist, which I do. And my hepatologist then tells me that herbs & supplements are not rigorously tested like other prescription meds are, so it's hard to know what harmful effects there may be (or if there are any positive effects). And now it turns out that even our trusted Urso isn't necessarily a good thing. Just remember that when there's a difficult disease, there are plenty of "snake-oil" salesmen out there who will take your money and make promises they can't keep. I'll admit that I'm jaded since my father listened to one of them (a quack listed on quackwatch) when he was diagnosed with prostate cancer, and in my opinion he died needlessly from prostate cancer. His medical doctor had given him an excellent prognosis. But my dad didn't want conventional medicine (surgery or radiation).I would also like to add to the orginal e-mail that prednisone & imuran are specifically used for autoimmune hepatitis, and not for PSC. The pred. & imuran will NOT help the PSC. Prednisone is a god-send in that it acts quickly to control an autoimmune response, but it has very wicked side effects (osteoporesis, increased risk of cancer, cateracts, increased risk of diabetes). Your doctor will try to wean you from this medicine, and hopefully that will work w/out causing the AIH to come back in full force. You should probably have your bone density checked, and possible start taking calcium & boniva or fossimax to strengthen your bones, as taking prednisone will weaken your bones, and possibly cause very painful bone fractures. WHATEVER YOU DO, DON'T SUDDENLY STOP TAKING THE PREDNISONE - you need to be weaned off the prednisone or you could permanently shut down your adrenal glands.Also, when taking 10 mg of prednisone (or more) for a month or more, your adrenal glands will temporarily shut down, since your adren! als see all the prednisone and figure they don't need to produce hydrocortisone (prednisone). Your body normally produces 5 mg of hydrocortisone a day anyway. But during stress, your body can produce much more. If your adrenals have shut down temporarily (called adrenal gland insufficiency), then when under stress you probably need an extra dose of hydrocortisone. You MAY need to double your dose of prednisone when under stress (ask your doctor before doing this). If you go to the ER, be SURE to mention that you are taking prednisone so you can be given an extra dose of prednisone. If you are unconscious you can't tell them, so you should be wearing a medic alert bracelet that will alert them to your medical conditions (such as steroid induced adrenal insufficiency). I have a medic alert bracelet for the adrenal gland insufficiency, as well as another medic alert bracelet for the j-pouch I have (recommended by a j-pouch surgeon). You should be able to get all your medical conditions on one medic alert bracelet. You can check the internet for various vendors of these bracelets. I would then call to talk to someone when ordering the bracelet or necklace or other product.

Marie

Use video conversation to talk face-to-face with Windows Live Messenger. Get started.