Confused

[Guest guest]

I would be a little worried, if I were you. I started

out on 20mg of prednizone, got down to l0 and Immuran

was added. That worked for me, but the point is that

within two weeks after the pred. was reduced I had a

blood test..your doctor should be on top of this, it's

your life, I think you should see a new doctor.

--- Bethanne <bamrand@...> wrote:

>

> Hi Everyone!! I have a question, but I'm not sure

> how to even word it so I'll try my best. My doctor

> has been reducing my prednisone over the past couple

> of months, however, he has not been checking my

> enzymes with each reduction. (Is this how it is

> usually done?) Over the past two weeks I have been

> extremely exhausted forcing myself to do everything

> so I called him. He ran bloodwork again and my

> numbers came back higher than normal.. Not much,

> but I had gotten them back into the normal range

> within the first two weeks of diagnosis (9/01).

> Does this mean my body can't tolerate reducing the

> prednisone? I'm asking because my doc is doing

> nothing different and continueing to lower the

> prednisone. ( I am currently on 5 mg and will be

> completely off in 4 weeks). This is really my first

> dealing with this and I'm unsure of what to question

> and insist on. He isn't running my bloodwork again

> for another month. I am meeting with a new doctor

> on January 3rd and this info will also help me in

> " interviewing " him. Any info would be greatly

> appreciated. Thanks in advance. I'm also on 100mgs

> of Imuran.

>

> Bethanne AIH 9/01

>

>

>

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

>

[Guest guest]

Dear Kathy,

I love it. Feel much better on Cellcept. It is much more expensive but I

don't have the nausea I had with Imuran. If you read the package inserts on

both Cellcept and Imuran they are both scary drugs we have to take. They

each have some bad side effects listed but I guess you have to weigh the good

against the bad. I was very upset when my LFT's started back up after trying

to taper the Prednisone and they mentioned switching back to Imuran. But

LFT's have increased each time they try to taper no matter which drug I was

on. I feel much better on the Cellcept and seem to tolerate this much

better. That's been my experience. A lot of people here seem to do well

with the Imuran though. Everyone is different.

If your MD wants to switch, based on my experience, I wouldn't worry to much.

I've done very well on it.

Hope this helps.

[Guest guest]

Dear :

Thanks for the info on Cellcept. It's that or trying Cyclosporine again. I tried Cyclosporine briefly a year ago and had terrible side effects from it. My docs think that it's imperative that I get off the pred, so hopefully the Cellcept will be an option for me.

Thanks again!

Kathy (AIH)

Seattle area

[Guest guest]

Thanks Harper, My family and I have been really concerned about this. I went from 30 to 7.5 without a test and only had this one because I requested it. He has me on a schedule to be off in 4 weeks without any further testing. I'm calling new doc tomorrow and begging them to help me!!! Thanks again!

Bethanne

[Guest guest]

I am!!!

Bethanne

[Guest guest]

Harper...you are right on with this...excellent advice. I cannot imagine a doctor "tailoring" a dosage with monitoring each dosage. I believe that even the inserts given by the pharmaceutical companies suggest close monitoring-especially prednisone!!

debby

Re: [ ] Confused

In a message dated 12/16/01 12:28:42 PM Pacific Standard Time, wafdaf@... writes: From Bethanne:

I have a question, but I'm not sure > how to even word it so I'll try my best. My doctor has been reducing my prednisone over the past couple > of months, however, he has not been checking my > enzymes with each reduction. Bethanne, I keep thinking about your message. I've made one response, which I tried to keep non-judgmental. However, the more I think about it, you must insist on having a blood test before reducing dosage. I remember one person wrote last year whose doctor simply set up a schedule many months in advance for dosages and reductions -- without, as I understood it, supporting lab tests. That horrified me then, and it does even more now that I know a little more. Dosages are tricky and have to be tailored to your body as it changes. Harper

[Guest guest]

, I am starting cellcept this week...or that was what the doctor told me last month. She wanted all of the IMuran out of my system before starting me on the Cellcept. She didn't want me to take it yet, but when I got so sick on the Imuran, she decided that I had been tortured long enough! 3 months of being constantly sick....I was glad she took me off!

I will be anxious to begin it...at least I will start it while I am off for Christmas break!

debby

Re: [ ] Confused

Dear Kathy,I love it. Feel much better on Cellcept. It is much more expensive but I don't have the nausea I had with Imuran. If you read the package inserts on both Cellcept and Imuran they are both scary drugs we have to take. They each have some bad side effects listed but I guess you have to weigh the good against the bad. I was very upset when my LFT's started back up after trying to taper the Prednisone and they mentioned switching back to Imuran. But LFT's have increased each time they try to taper no matter which drug I was on. I feel much better on the Cellcept and seem to tolerate this much better. That's been my experience. A lot of people here seem to do well with the Imuran though. Everyone is different.If your MD wants to switch, based on my experience, I wouldn't worry to much. I've done very well on it.Hope this helps.

[Guest guest]

Bethanne

I am not a Dr and certainly not intimately familiar with your case, however I would not like it at all if my Dr,. did this to me. I would express my concerns and ask nicely (egos you know) to help me understand. If he ignored me I would take a good look at this new Dr. give him the details and see what he says. Bring as much of your med records as you can. I am not in your situation however in my 20 years of experience with AIH higher enzymes always meant I was not on enough prednisone.

Good luck

Patty

[ ] Confused

Hi Everyone!! I have a question, but I'm not sure how to even word it so I'll try my best. My doctor has been reducing my prednisone over the past couple of months, however, he has not been checking my enzymes with each reduction. (Is this how it is usually done?) Over the past two weeks I have been extremely exhausted forcing myself to do everything so I called him. He ran bloodwork again and my numbers came back higher than normal.. Not much, but I had gotten them back into the normal range within the first two weeks of diagnosis (9/01). Does this mean my body can't tolerate reducing the prednisone? I'm asking because my doc is doing nothing different and continueing to lower the prednisone. ( I am currently on 5 mg and will be completely off in 4 weeks). This is really my first dealing with this and I'm unsure of what to question and insist on. He isn't running my bloodwork again for another month. I am meeting with a new doctor on January 3rd and this info will also help me in "interviewing" him. Any info would be greatly appreciated. Thanks in advance. I'm also on 100mgs of Imuran.

Bethanne AIH 9/01

[Guest guest]

Patty,

I took all of my records!! It is so great to hear how things are handled for other people. IT truly gives me a better understanding of things. Raising my prednisone is exactly what he did. I'm back up to 20. I want to be off of it really bad, but I want the disease to be under control so we deal with it!!!

Thanks again,

Bethanne

[Guest guest]

- I know what you mean by thinking you should be a pro by now. Just to

let you know, is also on only one DMARD. He started on sulfasalazine

but when that didn't help as much as the dr felt it should (after about 6

months) he went to MTX. This has definitely worked quickly and well, so far.

He has been on since Dec. It has helped him a lot so far. (you might have

read my email about his running) I think if you are not sure, a second

opinion is a great idea. Can't hurt - it will give you another idea about

the disease at least. had the headache, sore throat, achy joints when

he had strep. He was very sick, very fast. Perhaps that is the case with

n.Antibiotics worked for that. too, is two years into this jra

with no remission. I worry that because he was older when he got it, he

won't outgrow it. Medicine is the best we can do to control it, not to cure

it. At least not yet. Just wanted to let you know, I share your frustration.

Good luck, Michele

confused

Well, I guess it is my time to vent. n woke up crying today not

feeling good. She has the headache, sore throat, and all of her joints

hurt. I called the second doctor in town and made an appt. for a second

opinion. I want him to give us some answers, but I am scared if they are

different than what we are doing, for then I know the hard decisions will

need to be made. n is just on plaquenil, and I have always wondered

why she is the only one on the list only on plaquenil and no other DMARD.

Is is time to move up to mtx? She has had this disease for two and a half

years with no remission, and I know the longer we go the less likely she

will go into remission. I don't know even after all of this time what kind

of health we should strive for with this disease. She is going to school

full time, but she still has to miss dance sometimes when she isn't feeling

good. Do we live like that, or do we try a stronger drug to try to improve

her? It is all so confusing. You would think I would be more of a pro with

this disease now after all of this time we have lived with this disease.

Thanks,

_________________________________________________________________

MSN Photos is the easiest way to share and print your photos:

http://photos.msn.com/support/worldwide.aspx

[Guest guest]

I share that frustration as well. My daughter, diagnosed at 3, still no remission, now 5. She had a burst eardrum and boom flare up! Fever, rash, the whole shebang, and just when we thought she was doing well. It is very frustrating and what can you do? Nothing, go on with life as if there were nothing wrong. Dr. put her on antibiotic and it went away after week and a half... I think we have all felt the way you are feeling... Still feel that way, I should think.

Theresa-WPB, FL

>From: "Tepper, Michele"

>Reply- >"' '"

>Subject: RE: confused >Date: Mon, 15 Apr 2002 11:30:36 -0500 > > - I know what you mean by thinking you should be a pro by now. Just to >let you know, is also on only one DMARD. He started on sulfasalazine >but when that didn't help as much as the dr felt it should (after about 6 >months) he went to MTX. This has definitely worked quickly and well, so far. >He has been on since Dec. It has helped him a lot so far. (you might have >read my email about his running) I think if you are not sure, a second >opinion is a great idea. Can't hurt - it will give you another idea about >the disease at least. had the headache, sore throat, achy joints when >he had strep. He was very sick, very fast. Perhaps that is the case with >n.Antibiotics worked for that. too, is two years into this jra >with no remission. I worry that because he was older when he got it, he >won't outgrow it. Medicine is the best we can do to control it, not to cure >it. At least not yet. Just wanted to let you know, I share your frustration. >Good luck, Michele > > confused > > > >Well, I guess it is my time to vent. n woke up crying today not >feeling good. She has the headache, sore throat, and all of her joints >hurt. I called the second doctor in town and made an appt. for a second >opinion. I want him to give us some answers, but I am scared if they are >different than what we are doing, for then I know the hard decisions will >need to be made. n is just on plaquenil, and I have always wondered >why she is the only one on the list only on plaquenil and no other DMARD. >Is is time to move up to mtx? She has had this disease for two and a half >years with no remission, and I know the longer we go the less likely she >will go into remission. I don't know even after all of this time what kind >of health we should strive for with this disease. She is going to school >full time, but she still has to miss dance sometimes when she isn't feeling >good. Do we live like that, or do we try a stronger drug to try to improve >her? It is all so confusing. You would think I would be more of a pro with > >this disease now after all of this time we have lived with this disease. >Thanks, > > >_________________________________________________________________ >MSN Photos is the easiest way to share and print your photos: >http://photos.msn.com/support/worldwide.aspx > > >

[Guest guest]

I feel the exact same way about a second opinion. What if it's not JRA and we are medicating her unnecessarily? What if it is something worse? Ugghhh! the questions with no answers. My main question is always is she going to grow out of it? do you get a direct yes or no, I don't.. Of course, I guess I know that is an unfair and especially an unanswerable question, but I can only hope, right?

Theresa -WPB, FL

>From: "W and C Price"

>Reply- > >Subject: confused >Date: Mon, 15 Apr 2002 09:05:10 -0700 > > >Well, I guess it is my time to vent. n woke up crying today not >feeling good. She has the headache, sore throat, and all of her joints >hurt. I called the second doctor in town and made an appt. for a second >opinion. I want him to give us some answers, but I am scared if they are >different than what we are doing, for then I know the hard decisions will >need to be made. n is just on plaquenil, and I have always wondered >why she is the only one on the list only on plaquenil and no other DMARD. >Is is time to move up to mtx? She has had this disease for two and a half >years with no remission, and I know the longer we go the less likely she >will go into remission. I don't know even after all of this time what kind >of health we should strive for with this disease. She is going to school >full time, but she still has to miss dance sometimes when she isn't feeling >good. Do we live like that, or do we try a stronger drug to try to improve >her? It is all so confusing. You would think I would be more of a pro with >this disease now after all of this time we have lived with this disease. >Thanks, > > >_________________________________________________________________ >MSN Photos is the easiest way to share and print your photos: >http://photos.msn.com/support/worldwide.aspx > Send and receive Hotmail on your mobile device: Click Here

[Guest guest]

According to our rheumy, we don't get a straight yes or no about outgrowing the JRA because they still have not figured out how to predict who will and who won't outgrow it. My daughter is 10 now and has been on this journey for 7 1/2 years without a remission. Yet her rheumy encourages us to be hopeful because many kids do go into remission when puberty hits, even if they've battled this for many years.

Liz

confused >Date: Mon, 15 Apr 2002 09:05:10 -0700 > > >Well, I guess it is my time to vent. n woke up crying today not >feeling good. She has the headache, sore throat, and all of her joints >hurt. I called the second doctor in town and made an appt. for a second >opinion. I want him to give us some answers, but I am scared if they are >different than what we are doing, for then I know the hard decisions will >need to be made. n is just on plaquenil, and I have always wondered >why she is the only one on the list only on plaquenil and no other DMARD. >Is is time to move up to mtx? She has had this disease for two and a half >years with no remission, and I know the longer we go the less likely she >will go into remission. I don't know even after all of this time what kind >of health we should strive for with this disease. She is going to school >full time, but she still has to miss dance sometimes when she isn't feeling >good. Do we live like that, or do we try a stronger drug to try to improve >her? It is all so confusing. You would think I would be more of a pro with >this disease now after all of this time we have lived with this disease. >Thanks, > > >_________________________________________________________________ >MSN Photos is the easiest way to share and print your photos: >http://photos.msn.com/support/worldwide.aspx >

Send and receive Hotmail on your mobile device: Click Here

[Guest guest]

,

I understand what you are going through. I fought

with doctors for 2 1/2 yrs and am still fighting.

Follow your gut. If you think there is more...then go

find it. We went through every dr in Salem where we

live and have been through 5 in Portland. Still

trying...off to another this Friday. Ask. Bug them.

That is what they are there for. Don't be

afraid...even though I know it is very scary to hear

what someone else may have to say...but it is better

now than later. You both are in my prayers. I wish

you the very best. Be strong...you'll get there.

Love to all,

Casaria

__________________________________________________

[Guest guest]

my heart goes out to you and especially n...I was wondering if

you are saying that the sore throat,headache, and achiness is due to jra..or

do you think maybe it might be due to the season..because my 3yo who doesn't

have jra was sick with strep a couple of weeks ago.

Probably the achiness, huh? What kind of jra does n have again?

I was always told there was a chance of remission with Tabs poly but since

89' not even a hint of it. So we go on..I do know that kids with pauci have

a better chance of remission than any.

You have that right to have a second opinion about anything when it comes to

your child. Reading your post, I also wondered why n wasn't on any

other medications..maybe checking into another pediatric rheumy might not

hurt..

As far as being a pro, lol, sweetie, I think old Arthur is a sly dog and

no-one can ever figure him out!

I hope n starts to feel better and it is just something going around

and you hang in there lady..your doing a wonderful job!

karen(tab17..poly)

From: " W and C Price " <immasche@...>

Reply-

Subject: confused

Date: Mon, 15 Apr 2002 09:05:10 -0700

Well, I guess it is my time to vent. n woke up crying today not

feeling good. She has the headache, sore throat, and all of her joints

hurt. I called the second doctor in town and made an appt. for a second

opinion. I want him to give us some answers, but I am scared if they are

different than what we are doing, for then I know the hard decisions will

need to be made. n is just on plaquenil, and I have always wondered

why she is the only one on the list only on plaquenil and no other DMARD.

Is is time to move up to mtx? She has had this disease for two and a half

years with no remission, and I know the longer we go the less likely she

will go into remission. I don't know even after all of this time what kind

of health we should strive for with this disease. She is going to school

full time, but she still has to miss dance sometimes when she isn't feeling

good. Do we live like that, or do we try a stronger drug to try to improve

her? It is all so confusing. You would think I would be more of a pro with

this disease now after all of this time we have lived with this disease.

Thanks,

_________________________________________________________________

MSN Photos is the easiest way to share and print your photos:

http://photos.msn.com/support/worldwide.aspx

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp.

[Guest guest]

My daughter only took plaquinal. The other meds caused bleeding. I hope you

can get relief for her SHU

[Guest guest]

,I dont remember what kind of JRA n has,if shes systemic sounds like a

flair.One little girl refers to the sore throat as her arthritis sore

throat.When flaired last time it started with a sore throat and he didnt

feal good.Strep test was negative.Have the strep ruled out first,viruses and

bacterias can cause flair ups.I hope she starts fealing better,my son flaired

over the weekend.About the Plaquenal(sp) I have heard it is for mild cases of

arthritis,that it is usually used with something else.I know exactly how you

feal,I want this disease under control,now not later.Some adult rheumys start

out with double sometimes triple DMARD therapy,get the disease under

control,then start droping things.I also know RA causes joint damage in the

first 2 yrs,JRA is supposedly differant,but how do you explain kids seeing a

rheumy for the first time and they already have damage?s rheumy tells me to

worry about him now,let him worry about the future,yeah right,when he can pull

out a magic crystal ball showing me that will be just fine,Ill quit

worrying. has not reached the one yr mark quite yet,I know alot about this

disease but every child is differant,arthur rears his head in so many differant

ways.It seems like as soon as you got a handle on things,BOOM you are thrown for

a loop and wondering what went wrong.Go for the second opinion,you probably wont

get a differant diagnoses but the other rheumy may be more aggresive in how he

treats his kids.

Just like every child is differant,every Dr is differant.Express your fealings

and your concerns,the drs are usually willing to comprimise,but you have to let

your fealings be known.I hope n is fealing better real soon,and can get

back to dancing.Keep us posted. Becki and 3systemic

karens tribe wrote:

> my heart goes out to you and especially n...I was wondering if

> you are saying that the sore throat,headache, and achiness is due to jra..or

> do you think maybe it might be due to the season..because my 3yo who doesn't

> have jra was sick with strep a couple of weeks ago.

> Probably the achiness, huh? What kind of jra does n have again?

> I was always told there was a chance of remission with Tabs poly but since

> 89' not even a hint of it. So we go on..I do know that kids with pauci have

> a better chance of remission than any.

> You have that right to have a second opinion about anything when it comes to

> your child. Reading your post, I also wondered why n wasn't on any

> other medications..maybe checking into another pediatric rheumy might not

> hurt..

> As far as being a pro, lol, sweetie, I think old Arthur is a sly dog and

> no-one can ever figure him out!

> I hope n starts to feel better and it is just something going around

> and you hang in there lady..your doing a wonderful job!

> karen(tab17..poly)

>

> From: " W and C Price " <immasche@...>

> Reply-

>

> Subject: confused

> Date: Mon, 15 Apr 2002 09:05:10 -0700

>

> Well, I guess it is my time to vent. n woke up crying today not

> feeling good. She has the headache, sore throat, and all of her joints

> hurt. I called the second doctor in town and made an appt. for a second

> opinion. I want him to give us some answers, but I am scared if they are

> different than what we are doing, for then I know the hard decisions will

> need to be made. n is just on plaquenil, and I have always wondered

> why she is the only one on the list only on plaquenil and no other DMARD.

> Is is time to move up to mtx? She has had this disease for two and a half

> years with no remission, and I know the longer we go the less likely she

> will go into remission. I don't know even after all of this time what kind

> of health we should strive for with this disease. She is going to school

> full time, but she still has to miss dance sometimes when she isn't feeling

> good. Do we live like that, or do we try a stronger drug to try to improve

> her? It is all so confusing. You would think I would be more of a pro with

> this disease now after all of this time we have lived with this disease.

> Thanks,

>

> _________________________________________________________________

> MSN Photos is the easiest way to share and print your photos:

> http://photos.msn.com/support/worldwide.aspx

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp.

>

>

>

>

>

[Guest guest]

Hi ,

It made me sad to read that n was having difficulties again and not feeling well. I think it is a good idea that you've made an appt with another rheumatologist. But I do also understand what you mean about possibly having to make some hard decisions.

Methotrexate seems to be so much more commonly prescribed than hydroxychloroquine (plaquinel), though Josh takes both of them. I find it interesting that n's current doctor hasn't talked about her trying MTX. Were there any particular reasons given? If she were to try it, there's always that rare chance that she might not be able to tolerate it and it might have to be discontinued but if she didn't have any bad reaction to it and responded well ... maybe that would make up the difference between her feeling like she has been a lot of the time versus maybe, hopefully, putting this into remission? It might be worthwhile to find out. We have more medicinal options now than ever before. If you feel that n's quality of life is not as good as it should be, maybe it is time to explore some of the other options.

I still have questions, myself, about things like realistic outcome expectations. Things like how much pain and stiffness ~ if any~ a child with JRA should have to put up with. I guess everybody has their own ideas about this kind of thing. Some kids have almost daily symptoms of pain, inflammation, stiff joints .... and yet remain on a very mild, conservative schedule of meds. Others have doctors who start right off with an aggressive treatment approach that may prevent or delay permanent joint damage but maybe in that particular child's case it wouldn't even have been problematic? Gosh, even with a very aggressive approach we couldn't seem to get control of Josh's symptoms for such a very long time. Like n, Josh's systemic symptoms seemed more worrisome than the joint problems. I sometimes wonder what the outcome might have been like in other circumstances. We'll never know, though.

There are still so many unknowns. But , you and n will be in our thoughts as the 30th approaches. I hope this appt goes well and is helpful. And I hope n starts feeling better soon.

All the best,

Georgina

Well, I guess it is my time to vent. n woke up crying today not feeling good. She has the headache, sore throat, and all of her joints hurt. I called the second doctor in town and made an appt. for a second opinion. I want him to give us some answers, but I am scared if they are different than what we are doing, for then I know the hard decisions will need to be made. n is just on plaquenil, and I have always wondered why she is the only one on the list only on plaquenil and no other DMARD. Is is time to move up to mtx? She has had this disease for two and a half years with no remission, and I know the longer we go the less likely she will go into remission. I don't know even after all of this time what kind of health we should strive for with this disease. She is going to school full time, but she still has to miss dance sometimes when she isn't feeling good. Do we live like that, or do we try a stronger drug to try to improve her? It is all so confusing. You would think I would be more of a pro with this disease now after all of this time we have lived with this disease. Thanks,

[Guest guest]

,from what I have been told is that alone Plaquenil is for mild disease,but

when used with MTX it is the first step in combo therapy.I have also learned

that if you dont speak up and let your fealings be known LOUD and CLEAR

that the rheumys just do what they want,and its not always right for your

child.Granted every child is differant,meds work differantly,and the Rheumy

cant compare one child to another,each child is like a puzzle with differant

pieces.I think every child is a learning process for them,they dont have

all the answers,and sometimes I think they are scared of doing the wrong

thing,unfortunately you never know if you dont try.I think if you go in

there with a positive attitude and talk about MTX and why you feel it is

time to add it ,they just might give it to n.The rheumys can be sneaky

though,they know they have the power,dont let them quickly dismiss your

fealings.Stay strong,you are ns biggest advocate.I am sure everything

will go good with the 2nd rheumy,people do not get second opinions because

they are happy with things.Good luck and I hope all works out.

Becki and 3systemic

Georgina wrote:

Hi

, It made me sad

to read that n was having difficulties again and not feeling well.

I think it is a good idea that you've made an appt with another rheumatologist.

But I do also understand what you mean about possibly having to make some

hard decisions.Methotrexate

seems to be so much more commonly prescribed than hydroxychloroquine (plaquinel),

though Josh takes both of them. I find it interesting that n's current

doctor hasn't talked about her trying MTX. Were there any particular reasons

given? If she were to try it, there's always that rare chance that she

might not be able to tolerate it and it might have to be discontinued but

if she didn't have any bad reaction to it and responded well ... maybe

that would make up the difference between her feeling like she has been

a lot of the time versus maybe, hopefully, putting this into remission?

It might be worthwhile to find out. We have more medicinal options now

than ever before. If you feel that n's quality of life is not as good

as it should be, maybe it is time to explore some of the other options. I

still have questions, myself, about things like realistic outcome expectations.

Things like how much pain and stiffness ~ if any~ a child with JRA should

have to put up with. I guess everybody has their own ideas about this kind

of thing. Some kids have almost daily symptoms of pain, inflammation, stiff

joints .... and yet remain on a very mild, conservative schedule of meds.

Others have doctors who start right off with an aggressive treatment approach

that may prevent or delay permanent joint damage but maybe in that particular

child's case it wouldn't even have been problematic? Gosh, even with a

very aggressive approach we couldn't seem to get control of Josh's symptoms

for such a very long time. Like n, Josh's systemic symptoms seemed

more worrisome than the joint problems. I sometimes wonder what the outcome

might have been like in other circumstances. We'll never know, though. There

are still so many unknowns. But , you and n will be in our thoughts

as the 30th approaches. I hope this appt goes well and is helpful. And

I hope n starts feeling better soon. All

the best,Georgina

Well, I guess it is my time to vent.

n woke up crying today not

feeling good. She has the headache, sore throat, and all of her

joints

hurt. I called the second doctor in town and made an appt. for

a second

opinion. I want him to give us some answers, but I am scared

if they are

different than what we are doing, for then I know the hard decisions

will

need to be made. n is just on plaquenil, and I have always

wondered

why she is the only one on the list only on plaquenil and no other

DMARD.

Is is time to move up to mtx? She has had this disease for two

and a half

years with no remission, and I know the longer we go the less likely

she

will go into remission. I don't know even after all of this time

what kind

of health we should strive for with this disease. She is going

to school

full time, but she still has to miss dance sometimes when she isn't

feeling

good. Do we live like that, or do we try a stronger drug to try

to improve

her? It is all so confusing. You would think I would be

more of a pro with

this disease now after all of this time we have lived with this disease.

Thanks,

[Guest guest]

Good Morning Jeanette!

I'm so sorry for the struggle that you are going thru. I don't recall

any e-mail send by you that would have hurt anyone. I consider

you to be very sweet and caring and truly hope that tomorrow your md can find a way to help with this situation. One of my favorite songs is by Barbara Streidsand called " The Rose" and

since I can't play that for you right now; I'm sending you a part

dedicted to you:

Just remember in the winter

far beneath the bitter snow

lies the seed

that with the sun's glow

in the spring

becomes

The Rose

God Bless You,

Tony

[Guest guest]

Jeanette,

Sounds that either your ammonia level is up or your memory loss can be caused by other things and even medicines can cause the loss. I would certainly talk to your doctor and tell your doc. I know with my recent Thyroid problem my mind was so foggy. The doc gave me a powder to put in drinks called cholestramine which made a difference right away for me. So maybe you should bring this up to your doc. And you don't need to apologize to anyone we understand. But having memory loss can be very scary. One of my problems with my memory is I was driving my daughter and I to go shopping and I forgot where we were going and she had to tell me the streets to go on, very embarrassing even if it is my child.

gayle/trans.6-99

galye@... @`

\I/

[Guest guest]

Jeanette,

Ask your Dr. about encepalopathy... or tell him (her) that you are concerned you may have it. Loss of memory and confusion are related to encepalopathy, as for the stroke, I am no expert and all stokes are different depending on the part of the brain that is injured, however I would not expect things to get worse once you are stable after the stoke, and from your posts it sounds like you have done very well. Shaking goes along with the encelopathy. Talk to your Dr. With all you have had to handle you don't need other challenges!! Hang in there, you are an insipration to me.

Patty (Miami)

-----Original Message-----From: Jeanette Carpenter [mailto:jeanette_cuk@...]Sent: Sunday, May 12, 2002 7:57 AM Subject: [ ] ConfusedHi, Is there anyone that can help me? As most of you know I had a stroke last Nov since then my memoy has been terrible and I get very confused very quickly.I have been reading that the AIH can cause memory lose and confusion the trouble is mine is getting worse everyday. It is at this point that i must appologis to anyone if i have sounded uncaring it is just that i start out to write something and by the time i have got everything set up i have forgotten what i was going to write. Can anyone tell me is this because of the stroke or is it part of the AIH also just how bad can it get. At the moment i cant remember what happened this morningor yesterday. I know we went out but i dont know where we went to. I am sorry if i have upset anyone at any time i just cant remember. Also i have started shaking and twitching in the night my hubby is finding it impossible to sleep with me and i cant carry a cup of tea into the front room from the kitchen without spilling it.Any answers i would appreciate i am going to the dr in the morning and i want to be able to ask the right questions. Bless you Hugs Jeanette UK AIH dx 1998 Cirrhosis dx 2001

[Guest guest]

__________________________________________________

[Guest guest]

Darrell:

Hello. Sorry to hear about you having problems with seizures. I

also have seizures in my sleep that sometimes escalate into grandmals because

i have bit my tounge, severe headache, hands gripped, and sometimes wake up

in floor.

I would advise you to call a neurologist and they will decide about what

type of seizures you have before giving you medication by different tests.

Such as MRI's, EKG's and yes sometimes they monitor you for 24 hours to get a

true reading from your brain. You do need to tell him why you suspect this

becuase he will have a better knowledge of where to start.

Take care and keep in touch.

[Guest guest]

I don't know if confused or simply curious is the right term to use at this time. I am wondering why there are some with AIH that it takes so long and so much prednisone, imuran, or whatever to get the AST, ALT back to normal, but the biopsy revealed a lesser degree(or about the same in some cases) of damage than what was revealed on mine. (in my case, the biopsy revealed bridging port-portal fibrosis and some necrosis - which as far as I can tell, puts the damage at stage 3) I'm not complaining about being started on a lower dose of prednisone (20 mg) than a lot of others. I'm also not complaining about lowering the dose. I'm now down to 12.5 mg daily and will go to 10 mg daily in two weeks. I'll stay at 10 for a while and we'll monitor the liver enzymes. I will have my liver enzymes checked Tuesday and I am a little anxious to see if they are back to normal. They went down to near normal after only 2 1/2 weeks on prednisone. Within a month of being on prednisone they were totally normal and so were all the other things that had been low - hgb, hct, wbc, rbc, platelets, total protein, albumin. However, I had an attack of the lovely RUQ abdominal pain that sent me to the ER on Mar 16th and my AST (68), ALT (96), and lipase (304) were elevated. Since the lipase was elevated, it would make sense to believe that the pancreas was acting up. That could have been the reason for the elevated AST and ALT and maybe it didn't have anything to do with AIH. That's what I'm hoping anyway. I did end up faxing the labs from Mar 16th to both my rheumy and my GI and told them about the episode. I guess they weren't concerned about it since I never heard from either of them.

I guess mainly I'm a little afraid of relying on the lab work too much. In the back of my mind there's this little voice saying 'what if the damage in my liver is progressing despite the fact that the numbers on the lab work look great?' For the most part, I never do anything 'normally'. If anyone can present with one picture and have the reality be as different as night and day, that would be me! I know, I know - there's no way of knowing for sure about that without doing another liver biopsy. Obviously, I don't want a liver biopsy done every month or even every few months for that matter!

My GI is pretty nonchalant about the AIH - he acts like its really no big deal. He is letting my rheumy make the decisions about medication since I have multiple autoimmune diseases. My rheumy is pretty aggressive about almost everything and she is certainly more aggressive than my GI about the AIH. He told me that he didn't need to see my liver enzymes again for six months. For now my rheumy is checking them at least monthly.

On the one hand, I am thrilled to be cutting the prednisone down to only 10 mg a day. I hope to get it down to 5 mg a day or even stop it altogether in a few months. However, I don't want to be sitting on a ticking time bomb while I'm sitting around fat, dumb, and happy.

Trying to think about it logically, my brain tells me that despite the fact that my biopsy revealed stage 3 fibrosis, my liver obviously responded very well and very quickly to the prednisone - as evidenced not only by the reduction of the AST, ALT, and GGT, but also by the return of all my other blood counts to normal as well. So, even though the damage to my liver was more progressed than some, I am on the dose of prednisone that is appropriate for me. Obviously the goal is to use the very lowest dose of prednisone that will work.

Okay - somebody just shoot me and tell me to quit thinking so much!

W