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Dear Kay K:

I've had numbness and tingling off and on in both arms and hands. I've

attributed it to the prednisone and the pitting edema in my limbs.

I was kind of surprised that your dermatologist would presume to tell you to

get off of the medications that you're taking for the AIH. What reason did

he give for wanting you to get off of them? Did you tell him that they were

helping to bring your LFT's down? At least he had heard of AIH. I went and

saw a dermatologist for some worrisome brown spots that had appeared all

over. He said that he had never heard of AIH and acted like he thought I was

making it up. He was a real piece of work all the way around and by far one

of my worst doctor experiences!

Hope you have a good weekend!

Kathy (AIH)

Seattle area

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Geri, you know you could get references here in a New York minute!

Question: is Atrieva a software you bought or something that can be

downloaded?

I wonder if the Climara patch works for perimenopause? Do you know? My

only problem is night sweats but my FSH has yet to show I'm entering

menopause.

My dermatologist (I see him for the rashes and itching) prescribed Sumycin

and Doxepin. My hepatologist didn't say anything about it. Then when I saw

the dermatologist after my last biopsy, he asked why I was taking Actigall,

Imuran AND prednisone. I told him about the AIH and PBC and HE wanted me to

stop them, even tho' the hep didn't say a word! But I didn't want to stop

them because they seemed to be controlling the rashes and itching that were

making my life hell. I also take Wellbutrin to try to quit smoking, and the

hepatologist has said nothing about that.

Ginger, I don't know if cold is preferred to heat for migraines, but I do

know ice is better for active inflammation, heat is better after it is under

control. I have a prescription for darvocet, which helped me a lot when I

damaged a rib. The only thing I have been told FOR SURE not to take is

Tylenol, but the site someone, Geri, I think, posted about Tylenol was a

real eye opener. Of course with migraine pain, a couple of Tylenol wouldn't

begin to help.

Peggy, what is dolobid?

I have numbness and tingling in my left arm and it is unexplained. It

started a couple of months ago.

Geri, the more you talk about your mother, the more upset I get for you. I

can't fathom how you have borne it.

Have a good evening, all.

KayK in Austin, AIH/PBC

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Kay,

Any possible correlation between the numbness in your arm and the

Wellbutrin? A friend of mine is having " funny " sensations that his

doctor attributes to Wellbutrin.

kak wrote:

>

> From: " kak " <majuli@...>

>

> Geri, you know you could get references here in a New York minute!

>

> Question: is Atrieva a software you bought or something that can be

> downloaded?

>

> I have numbness and tingling in my left arm and it is unexplained. It

> started a couple of months ago.

>

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Barbara, I don't know. I have been taking Wellbutrin for a year. Maybe

there is some kind of build-up side-effect I don't know about, but why would

an antidepressant cause such a thing? Why does his doc attribute his

sensations to Wellbutrin?

I guess I just want to know whether it is something to worry about. In

my research I can't find anything that mentions to what it might be

attributable.

> Any possible correlation between the numbness in your arm and the

> Wellbutrin? A friend of mine is having " funny " sensations that his

> doctor attributes to Wellbutrin.

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Kathy, what is " pitting " edema? I was wondering why I only had this in my

left arm (I am right-handed). To date, I haven't suffered the problems with

edema many of you have, but, ironically, just about 30 minutes ago, I looked

at how big my legs look (once my best feature; now my worst) and wondered if

I shouldn't be on a diuretic. This group is so amazing for giving us new

insights, questions to pursue, etc. I see my hep Tues. to get the results

of my first labs since adding Imuran and Actigall to the Prednisone. I,

thanks to this group, have compiled questions to ask him that I never would

have thought of.

Kathy, sorry to be misleading - the meds he wanted me off of (due to their

being processed first and foremost in the liver) were meds he, the

dermatologist, had prescribed.

I have attained a beneficial advantage that I believe is very important.

Even though my docs are very far away, they are all in the same building:

the allergist, the dermatologist, my internist and my hepatologist. They

all share computer access to my records, test results, etc

We have all had crummy doc experiences, myself included. That's why I think

a project to somehow summarize in a cogent, powerful, meaningful way all we

know (have learned), all the sources we use, etc., etc. is so important. If

I were not absolutely alone and didn't have to work, I would spearhead or be

at least equal partners in such an endeavor. I know others have said this,

but I mean it literally - this group has absolutely changed my life.

Sorry to ramble, and thanks for sharing. Hope you have an ever better

weekend! And please, could people who post, no matter how long they have

been posting, for the benefit of all newcomers, put their dx after their

handles! Like so:

KayK, AIH/PBC

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Kay,

Edema in the upper legs is a symptom of liver disease. Possibly other

things, too, but that was one of the most startling things I noticed when I

was blown up like a balloon. Like everything else, everyone may not have a

problem, but I've always had " skinny " legs, so it was really noticeable on

me.

I had edema problems for years and didn't even recognize it. I had a plain

gold wedding band that I never removed, but one day in 1989 I noticed that

my finger was bleeding under the band. My hand was so swollen the band was

cutting my finger. I finally got it off and I haven't been able to wear it

since, though it might fit now since I'm taking diuretics and seem not to

have much edema anymore. My upper legs still look puffy and of course my

abdomen is always hard and swollen.

After that I figured that my doctors must be right when they blamed my

distended midsection on age and " natural " weight gain, so I didn't pay much

attention. After all, many of us do tend to gain weight as we grow older,

even if we were always slim.

When my feet and ankles began to swell so badly I couldn't wear most of my

shoes in 1997, I finally started looking for answers. That's when they

discovered end-stage liver disease and Stage IV cirrhosis. I honestly

don't recall feeling sick except during the weeks immediately preceding

diagnosis, though I had a lot of oddball symptoms that I shrugged off

because that was my doctors approach to them.

I was put on heavy duty lasix immediately during and after hospitalization

in 1997. I was taking 80 mg. lasix, but I don't remember if it was once or

twice a day. I stayed on that level until I started Prednisone more than a

month after diagnosis, I think. My memory of that period is a little hazy.

I've been taking diuretics for two years now but I was put on a potassium

sparing diuretic instead of straight lasix. They started me on Aldactone

which was a great diuretic but also caused terrible breast tenderness. I

was then switched to Ameloride. I've had to double the Ameloride and add

lasix again (40 mgs. daily) during the past year or so to control

edema. About a year ago, despite all of the diuretics, my feet and ankles

became so swollen you couldn't tell I had bones. A short term on Aldactone

(prescribed by my docs associate - and unprescribed immediately by my

doctor a week later) brought the edema under control. Your doctor may not

be prescribing diuretics yet because they aren't indicated. They

apparently can be very hard on your kidneys.

Take care,

Geri/AIH

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In a message dated 11/12/1999 9:33:59 PM Eastern Standard Time,

KATBERCOO@... writes:

<< He said that he had never heard of AIH and acted like he thought I was

making it up. He was a real piece of work all the way around and by far one

of my worst doctor experiences! >>

Kathy,

Maybe we should all write a book about the stupid doctors we've seen! That

one would sure qualify!

Hugs,

(AIH?)

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In a message dated 11/12/1999 9:33:59 PM Eastern Standard Time,

KATBERCOO@... writes:

<< He said that he had never heard of AIH and acted like he thought I was

making it up. He was a real piece of work all the way around and by far one

of my worst doctor experiences! >>

Kathy,

Maybe we should all write a book about the stupid doctors we've seen! That

one would sure qualify!

Hugs,

(AIH?)

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In a message dated 11/12/1999 7:59:24 PM Eastern Standard Time,

majuli@... writes:

<<

I wonder if the Climara patch works for perimenopause? Do you know? My

only problem is night sweats but my FSH has yet to show I'm entering

menopause.

>>

Kay,

Does your gyn know about the night sweats? Unless these diseases are causing

it, and we know that anything is possible there! Otherwise, I'd think you

should be on SOME kind of estrogen replacement. You should not have to

suffer with night sweats. They were my first obvious symptom, and the gyn

immediately put me on estrogen. :)

Hugs,

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I use soy isoflavonoids, they are similar to estrogen, but none of the side

effects. No prescription needed, can buy over the counter or health food

store.

J

>From: La7de@...

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>Subject: Re: [ ] Bits 'n' Pieces

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>In a message dated 11/12/1999 7:59:24 PM Eastern Standard Time,

>majuli@... writes:

>

><<

> I wonder if the Climara patch works for perimenopause? Do you know? My

> only problem is night sweats but my FSH has yet to show I'm entering

> menopause.

> >>

>Kay,

>Does your gyn know about the night sweats? Unless these diseases are

>causing

>it, and we know that anything is possible there! Otherwise, I'd think you

>should be on SOME kind of estrogen replacement. You should not have to

>suffer with night sweats. They were my first obvious symptom, and the gyn

>immediately put me on estrogen. :)

>Hugs,

>

>

>------------------------------------------------------------------------

>Please support the American Liver Foundation!

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