Aches

[Guest guest]

Hi Amy,

I stopped taking pred. in June and am doing fine. I'm 2 yrs. into this

and will have a second boipsy in Jan. My first was really not that

bad. I hope the second goes as smooth. My pred. was lowered slowely and

I was monitored closely.

Nice to meet you.

Joan Claffey

NJ

daveamycrazykids@... wrote:

>

> Does anyone have leg aches and back aches towards the end of the day. Second

> question, how long has everybody been diagnosed and thirdly what is your

> doses of prednisone and my doctor thinks I am going to go off the predisone

> anybody have any luck with this? I hear usually relapse so why should I even

> try it. Anybody have bad nightmares about Biopsy? Awful help answer

> questions soon

>

> AMY

>

>

[Guest guest]

Hi Amy,

Muscle and joint pain is very common in AIH. I was dx'd about 5 years ago. I'm in the process of tapering prednisone. For me, the side effects were too bad, not to taper. A percentage can stop prednisone after the liver function returns to normal without relapse. It is certainly worth the attempt. It is also possible that other medications can keep the disease in check after prednisone does it's work. I've had two biopsies. The first one gave me a dull ache in the shoulder for about a day. The second was a piece of cake. No discomfort at all.

Don

Terradon Unlimited

http://www.TerradonUnlimited.com

"People who ask me how we can still have such a positive attitude after all we’ve been through, have it all wrong…We’ve been able to get through all that we have BECAUSE we have a positive attitude". Don Hanson 8/2000

-----Original Message-----From: daveamycrazykids@... [mailto:daveamycrazykids@...]Sent: Monday, October 09, 2000 4:29 PM egroupsSubject: [ ] achesDoes anyone have leg aches and back aches towards the end of the day. Second question, how long has everybody been diagnosed and thirdly what is your doses of prednisone and my doctor thinks I am going to go off the predisone anybody have any luck with this? I hear usually relapse so why should I even try it. Anybody have bad nightmares about Biopsy? Awful help answer questions soonAMY

[Guest guest]

I think the pain and aches must be common to all... they were pretty bad

in that they were chronic before I was diagnosed a month ago...I was

started on 40mgs of prednisone and the good thing was the disappearance

of pain.... already they`ve got me down to 20gs. as my functions

improved dramaticaly but now the joint and back pains are

reappearing...

I`m to go to 10mgs next week followed by a visit to my doctors at the

clev. clinic in 2 weeks after that.......

the problem with any procedure is anticipating and projecting something

that hasn`t happened yet....I`ve had 4 biopsies and none have been

painful , most were quick and none had any pain afterwards...

I suppose a lot has to do with who is performing them..... worrying

about something that isn`t yet a reality, is counter-productive.....

think good thoughts..

love and serenity jerry

Does anyone have leg aches and back aches towards the end of the day. Second

question, how long has everybody been diagnosed and thirdly what is your

doses of prednisone and my doctor thinks I am going to go off the predisone

anybody have any luck with this? I hear usually relapse so why should I even

try it. Anybody have bad nightmares about Biopsy? Awful help answer

questions soon

AMY

[Guest guest]

In a message dated 10/11/00 5:12:21 PM Eastern Daylight Time,

shireen42@... writes:

<<

Are the aches and pains that go with aih in the joints or muscles, or both?

Shireen >>

Both. Muscles do not respond as well and there for do not heal as well from

overuse or strain.

Ginger-gehud119@...

[Guest guest]

Hi all,

Are the aches and pains that go with aih in the joints or muscles, or both?

Shireen

>From: gefox@...

>Reply- egroups

> egroups

>Subject: Re: [ ] aches

>Date: Tue, 10 Oct 2000 00:40:51 -0400 (EDT)

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>

>I think the pain and aches must be common to all... they were pretty bad

>in that they were chronic before I was diagnosed a month ago...I was

>started on 40mgs of prednisone and the good thing was the disappearance

>of pain.... already they`ve got me down to 20gs. as my functions

>improved dramaticaly but now the joint and back pains are

>reappearing...

>I`m to go to 10mgs next week followed by a visit to my doctors at the

>clev. clinic in 2 weeks after that.......

>the problem with any procedure is anticipating and projecting something

>that hasn`t happened yet....I`ve had 4 biopsies and none have been

>painful , most were quick and none had any pain afterwards...

>I suppose a lot has to do with who is performing them..... worrying

>about something that isn`t yet a reality, is counter-productive.....

>think good thoughts..

>love and serenity jerry

>

><< Message5.txt >>

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[Guest guest]

Both.

Don

Terradon Unlimited

http://www.TerradonUnlimited.com

"People who ask me how we can still have such a positive attitude after all we’ve been through, have it all wrong…We’ve been able to get through all that we have BECAUSE we have a positive attitude". Don Hanson 8/2000

Re: [ ] aches>Date: Tue, 10 Oct 2000 00:40:51 -0400 (EDT)>MIME-Version: 1.0>Received: from [208.50.99.198] by hotmail.com (3.2) with ESMTP id >MHotMailBBABE8D2006E40042A12D03263C64B7B38; Mon Oct 09 21:41:10 2000>Received: from [10.1.10.35] by hm. with NNFMP; 10 Oct 2000 >04:40:55 -0000>Received: (EGP: mail-6_1_0); 10 Oct 2000 04:40:54 -0000>Received: (qmail 30831 invoked from network); 10 Oct 2000 04:40:54 -0000>Received: from unknown (10.1.10.27) by m1.onelist.org with QMQP; 10 Oct >2000 04:40:54 -0000>Received: from unknown (HELO mailsorter-105-2.iap.bryant.webtv.net) >(209.240.198.118) by mta2 with SMTP; 10 Oct 2000 04:40:53 -0000>Received: from storefull-297.iap.bryant.webtv.net >(storefull-297.iap.bryant.webtv.net [209.240.198.50]) by >mailsorter-105-2.iap.bryant.webtv.net (WebTV_Postfix) with ESMTP id >E50262CE35 for < egroups>; Mon, 9 Oct 2000 21:40:51 >-0700 (PDT)>Received: (from production@localhost) by storefull-297.iap.bryant.webtv.net >(8.8.8-wtv-e/mt.gso.26Feb98) id VAA26715; Mon, 9 Oct 2000 21:40:51 -0700 >(PDT)>From sentto-165537-23573-971152854-shireen42 Mon Oct 09 21:43:54 2000>X-eGroups-Return: >sentto-165537-23573-971152854-shireen42=hotmail.comreturns (DOT) onelist.com>X-Sender: GEFOX@...>X-Apparently- egroups>X-WebTV-Signature: 1 >ETAsAhRLW0t2SQ1wyJ/d2d9/azjZ8ykjDgIUTndV1j/w7TxHssgRuXezdugfGNA=>Message-ID: <29743-39E29DD3-8603@...>>In-Reply-daveamycrazykids@...'s message of Mon, 9 Oct 2000 17:28:48 >EDT>X-eGroups-From: GEFOX@... (GERALD FOX)>Mailing-List: list egroups; contact > -owneregroups>Delivered-mailing list egroups>Precedence: bulk>List-Unsubscribe: <mailto: -unsubscribeegroups>>>I think the pain and aches must be common to all... they were pretty bad>in that they were chronic before I was diagnosed a month ago...I was>started on 40mgs of prednisone and the good thing was the disappearance>of pain.... already they`ve got me down to 20gs. as my functions>improved dramaticaly but now the joint and back pains are>reappearing...>I`m to go to 10mgs next week followed by a visit to my doctors at the>clev. clinic in 2 weeks after that.......>the problem with any procedure is anticipating and projecting something>that hasn`t happened yet....I`ve had 4 biopsies and none have been>painful , most were quick and none had any pain afterwards...>I suppose a lot has to do with who is performing them..... worrying>about something that isn`t yet a reality, is counter-productive.....>think good thoughts..>love and serenity jerry>><< Message5.txt >>_________________________________________________________________________Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.Share information about yourself, create your own public profile at http://profiles.msn.com.

[Guest guest]

Hi Debby,

I am wondering if what you are experiencing is related to the

withdrawal of your Celcept, didn't I read someone say that when they

went of some of their meds they had major joint problems. That must

be draining your energy levels in a major way. The stiffer you are

and pain in joints makes every effort much more difficult. I have a

dear friend with Rheumatoid Arthritis and she said she felt like she

was carrying heavy weights on her body, and it was exhausting to lift

or even walk across the room. I'm sorry you are having such a hard

time. I hope you can get the answers you need and relief.

Love & Hugs,

Ruth

> Hi everyone. I have been somewhat quiet recently, because I just

hurt all over. I have read Dr. Palmer's book forward and backward,

but cannot find a specific reference to the joint stiffness, although

I thought I had read it at one point. Indeed, this book has MUCH

information. It has been a great guide for how the liver works

exactly.

>

> But what I am experiencing is extreme stiffness. SInce I stopped

the Cellcept (with the doctor's approval), I have gotten stiffer and

stiffer like I have arthritis in each and every joint. It began with

my finger joints swelling and a couple of them getting red. But the

redness went away. The middle finger is still somewhat stiff (but

that gives me reason to well.....best stop there!). At night, each

time I move I waken cause it just darn hurts to move.

>

> Getting up, from sitting, or sleeping, I look like an old old

grandma until I get " revved up " and am able to move. Sometimes I

wish there was a WD40 ointment to use! Oh well....I have Celebrex,

but have read about it and think it should not be taken...at least

for me. So that is another thing to talk to the doctor about.

>

> Now, I have another question....do any of you have this extreme

stiffness? My doctor once told me she feared that I might have

a " flare " but I have no clue what it would be like...unless THIS is

a " flare " . Whatever the cause is, I DONT like it very much.

>

> I am still on prednisone, but am certain that we are going to have

to try something else in addition to the pred....

>

> Any input would be helpful.

>

> Time to go to bed.....work tomorrow!

> debby

[Guest guest]

Dear Debby,

Just about all the painful symptoms disappeared once Randy was tx'd. Exercise seemed to help him alot. We were walking alot towards the end and he was eating on a regular basis. I know he always wanted something warm to drink ie coffee, tea, hot chocolate. If I remember correctly, once we had the encephalopathy and the water retention under control more, the pains subsided. Also, he was eating bananas to help with leg cramps. But I do remember him just saying he hurt all over and when he got up in the morning it seemed like it took about 5-10 minutes before he was moving around easily.

A change in meds..... let me think on this one... they added inderol towards the end which seemed to help with the esoph. bleeding but not too much more. They had him off pred. the last six months prior to the tx but he still took the imuran and diuretics and of course he took lactulose as needed. The only other change which stands out is that we were both eating alot of oatmeal -- for breakfast and again sometime during the day. I was trying to lower my cholestrol count and we both love it so it was easy.

Hope this helps you some....

Cheryl & Randy

[Guest guest]

Dear Debby,

Sorry to hear you are feeling bad and

stiff all over. Hope you feel better soon. Is this all the time?

[ ] aches

Hi everyone. I have been

somewhat quiet recently, because I just hurt all over. I have read Dr.

Palmer's book forward and backward, but cannot find a specific reference to the

joint stiffness, although I thought I had read it at one point. Indeed,

this book has MUCH information. It has been a great guide for how the

liver works exactly.

But what I am experiencing is

extreme stiffness. SInce I stopped the Cellcept (with the doctor's

approval), I have gotten stiffer and stiffer like I have arthritis in each and

every joint. It began with my finger joints swelling and a couple of them

getting red. But the redness went away. The middle finger is still

somewhat stiff (but that gives me reason to well.....best stop there!).

At night, each time I move I waken cause it just darn hurts to move.

Getting up, from sitting, or

sleeping, I look like an old old grandma until I get " revved up " and

am able to move. Sometimes I wish there was a WD40 ointment to use!

Oh well....I have Celebrex, but have read about it and think it should not be

taken...at least for me. So that is another thing to talk to the doctor

about.

Now, I have another question....do

any of you have this extreme stiffness? My doctor once told me she feared

that I might have a " flare " but I have no clue what it would be

like...unless THIS is a " flare " . Whatever the cause is, I DONT

like it very much.

I am still on prednisone, but am

certain that we are going to have to try something else in addition to the

pred....

Any input would be helpful.

Time to go to bed.....work tomorrow!

debby

[Guest guest]

Cheryl, did Randy's ache's cease when he had his liver transplant or when he was on different meds? Just curious.

debby

Re: [ ] aches

Dear Debby, So sorry to hear that you are hurting so much. I remember Randy hurting so much the covers on the bed hurt him. Hopefully your doctor will be able to bring you some relief. Take care, Cheryl & Randy

[Guest guest]

Debbie, I just wanted to say I hope you get to feeling better soon. Better than somewhat better.. LOL

Take good care of yourself. Lyn In Ark.

tdcc2000 <tdcc2000@...> wrote:

Cheryl, thank you for your input. I feel somewhat better this AM. I did not go to work because I was just so totally stiff. I called my daughter to teach for me today and then called the school to confirm she was going to sub. It is expensive to me because I have used all of my sick leave. However, I just need to do this for my own well being.

Thanks again.

debby

Re: [ ] aches

Dear Debby, Just about all the painful symptoms disappeared once Randy was tx'd. Exercise seemed to help him alot. We were walking alot towards the end and he was eating on a regular basis. I know he always wanted something warm to drink ie coffee, tea, hot chocolate. If I remember correctly, once we had the encephalopathy and the water retention under control more, the pains subsided. Also, he was eating bananas to help with leg cramps. But I do remember him just saying he hurt all over and when he got up in the morning it seemed like it took about 5-10 minutes before he was moving around easily. A change in meds..... let me think on this one... they added inderol towards the end which seemed to help with the esoph. bleeding but not too much more. They had him off pred. the last six months prior to the tx but he still took the imuran and diuretics and of course he took lactulose as needed. The only other change which stands out is that we were both eating alot of oatmeal -- for breakfast and again sometime during the day. I was trying to lower my cholestrol count and we both love it so it was easy. Hope this helps you some.... Cheryl & Randy

[Guest guest]

Kathy & Debbie,

They are tapering my Prednisone also. I am now down to 2.5 daily. from 7 to

5 and then 5 one day and then 2.5 the other days, I felt the same aches and

dragginess you are describing. Now that they have me down to 2.5 every day I

feel much better. I still do have aches but I think I just got use to not

feeling normal aches and pains when I was on higher doses. That's just my

feeling don't know if there is any logic behind it or not. Hope you both

feel better soon.

[Guest guest]

Ruth, maybe I should call poison control and see what the withdrawal symptoms would be from cellcept....good idea.

thanks for making me think!

debby

[ ] Re: aches

Hi Debby, I am wondering if what you are experiencing is related to the withdrawal of your Celcept, didn't I read someone say that when they went of some of their meds they had major joint problems. That must be draining your energy levels in a major way. The stiffer you are and pain in joints makes every effort much more difficult. I have a dear friend with Rheumatoid Arthritis and she said she felt like she was carrying heavy weights on her body, and it was exhausting to lift or even walk across the room. I'm sorry you are having such a hard time. I hope you can get the answers you need and relief.Love & Hugs,Ruth> Hi everyone. I have been somewhat quiet recently, because I just hurt all over. I have read Dr. Palmer's book forward and backward, but cannot find a specific reference to the joint stiffness, although I thought I had read it at one point. Indeed, this book has MUCH information. It has been a great guide for how the liver works exactly.> > But what I am experiencing is extreme stiffness. SInce I stopped the Cellcept (with the doctor's approval), I have gotten stiffer and stiffer like I have arthritis in each and every joint. It began with my finger joints swelling and a couple of them getting red. But the redness went away. The middle finger is still somewhat stiff (but that gives me reason to well.....best stop there!). At night, each time I move I waken cause it just darn hurts to move. > > Getting up, from sitting, or sleeping, I look like an old old grandma until I get "revved up" and am able to move. Sometimes I wish there was a WD40 ointment to use! Oh well....I have Celebrex, but have read about it and think it should not be taken...at least for me. So that is another thing to talk to the doctor about.> > Now, I have another question....do any of you have this extreme stiffness? My doctor once told me she feared that I might have a "flare" but I have no clue what it would be like...unless THIS is a "flare" . Whatever the cause is, I DONT like it very much.> > I am still on prednisone, but am certain that we are going to have to try something else in addition to the pred....> > Any input would be helpful.> > Time to go to bed.....work tomorrow!> debby

[Guest guest]

, when they tapered my prednisone, at the beginning, I felt achey etc....but not like this. It is just like I had not ever exercised and then went out and ran a marathon. The next day, you are so stiff and sore you cannot move. THat is how I feel now....way way too uncomfortable for me.

I went to work today and did OK...I only tripped once getting up out of my chair. I find that it is much better for me NOT to sit down...then I don't have to figure out how I am going to get up. I have great upper strength in my arms, but even that is getting weaker.

The nurse tonight told me she thinks I have another autoimmune problem going on...like I told Harper....I have so many now, I don't WANT another! Will see what she says THursday.

debby

Re: [ ] Re: aches

Kathy & Debbie,They are tapering my Prednisone also. I am now down to 2.5 daily. from 7 to 5 and then 5 one day and then 2.5 the other days, I felt the same aches and dragginess you are describing. Now that they have me down to 2.5 every day I feel much better. I still do have aches but I think I just got use to not feeling normal aches and pains when I was on higher doses. That's just my feeling don't know if there is any logic behind it or not. Hope you both feel better soon.

[Guest guest]

Debbie,

I have been trying to catch up on messages without responding but I had to stop here. You probably have a bunch of responses, it is Wed and you posted Monday. I have a question. Do you feel the stiffness could be from the cessation of Cellcept or could it be arthritis. My gastro asked me everytime I came in if I had stiffness in any other joints. I didn't but asked him why and he said often the autoimmune response will travel to other susceptible areas and the synovial fluid in the joints was a particularly suscepital area. I assume the cellcept is an immunosuppressant as it started as an antirejection. I hope that by now you feel better ( you have been through too much.

Patty (Miami)

-----Original Message-----From: tdcc2000 [mailto:tdcc2000@...]Sent: Monday, May 06, 2002 12:57 AM Subject: [ ] aches

Hi everyone. I have been somewhat quiet recently, because I just hurt all over. I have read Dr. Palmer's book forward and backward, but cannot find a specific reference to the joint stiffness, although I thought I had read it at one point. Indeed, this book has MUCH information. It has been a great guide for how the liver works exactly.

But what I am experiencing is extreme stiffness. SInce I stopped the Cellcept (with the doctor's approval), I have gotten stiffer and stiffer like I have arthritis in each and every joint. It began with my finger joints swelling and a couple of them getting red. But the redness went away. The middle finger is still somewhat stiff (but that gives me reason to well.....best stop there!). At night, each time I move I waken cause it just darn hurts to move.

Getting up, from sitting, or sleeping, I look like an old old grandma until I get "revved up" and am able to move. Sometimes I wish there was a WD40 ointment to use! Oh well....I have Celebrex, but have read about it and think it should not be taken...at least for me. So that is another thing to talk to the doctor about.

Now, I have another question....do any of you have this extreme stiffness? My doctor once told me she feared that I might have a "flare" but I have no clue what it would be like...unless THIS is a "flare" . Whatever the cause is, I DONT like it very much.

I am still on prednisone, but am certain that we are going to have to try something else in addition to the pred....

Any input would be helpful.

Time to go to bed.....work tomorrow!

debby

[Guest guest]

Hello. I seem to have what I call bad circulation, does anyone know of

a good remedy or any help in this area. thanks/r

[Guest guest]

Cayenne pepper with at least 150 heat units not taken

in capsules but with food and water. Make sure it's

organic from a trusted grower.

--- musicmakr_99 <musicmakr_99@...> wrote:

> Hello. I seem to have what I call bad circulation,

> does anyone know of

> a good remedy or any help in this area. thanks/r

>

>

>

>

>

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Start your day with - make it your home page

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