Remission

[Guest guest]

I asked my Dr. the other day about the brain fog, and it being amonia or

whatever in your blood from the liver. He had me hold up my hands so he

could see the palms, for a couple of minutes, and I asked what he was doing,

he said checking for the amonia (or whatever). He said my hands would be

shaking. My hands shake at different times. Not that day either. I am

going to talk to him more about it at my next appointment. He is lowering

my prednisone from 10 mgs now to 10 - 7.5 - 10 for two weeks and then 10 - 5

- 10 for two weeks, then to 10 - none - 10. So he is starting to check me

about once a month to see how that goes. My husband is getting checked for

his fatty liver every month now to see what is going on there, they are not

positive it is fatty liver or what. I am starting to get worn out with all

this. If I didn't have fatige before i surely do now from all this go go go

to the Drs. and stress. I am begining to feel it, nice to have people to

complain to! Lynn aih

Jody Compton wrote:

> From: Jody Compton <compton_61@...>

>

> Just for the record my hands shake also. Would like to see if anyone

> has had a doctor they are seeing say what it may be from..

> Jody

>

> --- Lynn <CEN32195@...> wrote:

> > Could you please define tremors. I get the shakes

> > now and then and

> > never could figure out why. My hands shake. Lynn

> > aih

> >

> > KATBERCOO@... wrote:

> >

> > >

> > >

> > >

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

> > >

> > > Subject: remission

> > > Date: Sat, 4 Sep 1999 13:13:23 -0700

> > > From: " Joe Mooney " <mooneyjo@...>

> > > <KATBERCOO@...>

> > >

> > > Kathy; I am currently in " medication remission " .

> > My lft's are in

> > > normal limits and have been for several months We

> > are weaning me off

> > > Prednisone and I am taking 6mp (a derivative of

> > imuran) .I am down to

> > > 5mg of prednisone. I have not had a biopsy yet.

> > Iam kind of scared of

> > > one .I had two 20 years ago when I first started

> > having problems. Now

> > > I worry about a flare up when I try to get off the

> > Prednisone. Does

> > > anyone else have trouble with tremors also? Lee,

> > Oregon

> > > --------------------Kathy; I am currently in "

> > medication remission " .

> > > My lft's are in normal limits and have been for

> > several months. We are

> > > weaning me off Prednisone and I am taking 6mp (a

> > derivative of imuran)

> > > .I am down to 5mg of prednisone. I have not had a

> > biopsy yet. Iam kind

> > > of scared of one .I had two 20 years ago when I

> > first started having

> > > problems. Now I worry about a flare up when I try

> > to get off the

> > > Prednisone. Does anyone else have trouble with

> > tremors also? Lee,

> > > Oregon

> >

> >

> >

>

> ===

> Jody Compton

> Dance like no one is watching. Love like it will never end.

>

> In search of answers..

> __________________________________________________

>

[Guest guest]

I got it, I think mine could be from meds or something, or just started for no

reason. Lynn

Patrites@... wrote:

> From: Patrites@...

>

> Lynn,

> The docs did the same " test " on me. He said that when the brain is being

> affected by the unmetabolized toxins and you hold your hands out, then after

> a few seconds they are shaking (alot) then it is time to be evaluating for

> encephalopathy. Regular tremor, where the hands just shake for no reason can

> be pretty normal. As some of the other posts have said, it can be a

> hereditary thing.

>

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

[Guest guest]

Hi Lynn:

Actually your doctor is not looking for " shaking hands " , he is looking for

" flapping " hands. They will flap kinda like birds wings (not a very good

description I'm sorry to say) but that's what my doctor told me. Hope this

helps. : )

Debbie

AIH

Michigan

remission

>> > > Date: Sat, 4 Sep 1999 13:13:23 -0700

>> > > From: " Joe Mooney " <mooneyjo@...>

>> > > <KATBERCOO@...>

>> > >

>> > > Kathy; I am currently in " medication remission " .

>> > My lft's are in

>> > > normal limits and have been for several months We

>> > are weaning me off

>> > > Prednisone and I am taking 6mp (a derivative of

>> > imuran) .I am down to

>> > > 5mg of prednisone. I have not had a biopsy yet.

>> > Iam kind of scared of

>> > > one .I had two 20 years ago when I first started

>> > having problems. Now

>> > > I worry about a flare up when I try to get off the

>> > Prednisone. Does

>> > > anyone else have trouble with tremors also? Lee,

>> > Oregon

>> > > --------------------Kathy; I am currently in "

>> > medication remission " .

>> > > My lft's are in normal limits and have been for

>> > several months. We are

>> > > weaning me off Prednisone and I am taking 6mp (a

>> > derivative of imuran)

>> > > .I am down to 5mg of prednisone. I have not had a

>> > biopsy yet. Iam kind

>> > > of scared of one .I had two 20 years ago when I

>> > first started having

>> > > problems. Now I worry about a flare up when I try

>> > to get off the

>> > > Prednisone. Does anyone else have trouble with

>> > tremors also? Lee,

>> > > Oregon

>> >

>> >

>> >

>>

>> ===

>> Jody Compton

>> Dance like no one is watching. Love like it will never end.

>>

>> In search of answers..

>> __________________________________________________

>>

[Guest guest]

My understanding from our experiences with Elliot and his doctors is that

remission is used by the doctors when a child has normal blood work without

symptoms after eliminating medication. Elliot had normal blood work a year

ago, which we had hoped would lead to remission, but several months later

his SED rate etc. was back up. We don't know whether this was due to our

tapering the medicine or just because the disease has ups & downs. In any

event, getting " control " of the disease is also something to be thankful

for.

Of course the terminology is less important than getting healthy & off the

medicines that can have adverse side effects. Hopefully , Elliot and

all the kids will be able to do so soon.

Best regards.

Charlie

On Wed, 13 Oct 1999 18:02:09 EDT, Skis@... wrote:

> From: Skis@...

> When a child is classified as in remission does this mean not only without

> pain but normal blood work too? I know there is such a thing as 'medicated

> remission' and 'remission.'

[Guest guest]

My understanding from our experiences with Elliot and his doctors is that

remission is used by the doctors when a child has normal blood work without

symptoms after eliminating medication. Elliot had normal blood work a year

ago, which we had hoped would lead to remission, but several months later

his SED rate etc. was back up. We don't know whether this was due to our

tapering the medicine or just because the disease has ups & downs. In any

event, getting " control " of the disease is also something to be thankful

for.

Of course the terminology is less important than getting healthy & off the

medicines that can have adverse side effects. Hopefully , Elliot and

all the kids will be able to do so soon.

Best regards.

Charlie

On Wed, 13 Oct 1999 18:02:09 EDT, Skis@... wrote:

> From: Skis@...

> When a child is classified as in remission does this mean not only without

> pain but normal blood work too? I know there is such a thing as 'medicated

> remission' and 'remission.'

[Guest guest]

s is medicated remission no pain and normal bloodwork due to enbrel we

will know more after we wean her off all meds except enbrel and normal

bloodwork lasts for two years from what I understand also it was the first

time for her bloodwork and sed rate are normal and praying they stay that

way. Thank all of you for your good wishes and prayers it has lifted our

spirits.

[Guest guest]

Hi Amy:

I guess a true remission is achieved when the child has been off of meds for 6

months or more and has no signs of JRA (e.g. swelling, stiffness, etc). At

least, this is what my rhuematologist tells us. As I understand it, Sed rate

shows the level of inflammation in blood. The higher the Sedimentation rate,

the higher is level of joint pain and achiness. This is one of the values they

usually check with JRA to see if it is active or not. Although, once the child

has reached some level of stability in the disease, they do not check for that

all the time. We go for blood tests every 6 weeks but we don't get that checked

since my daughter has not been experiencing any pain and stiffness. I hope this

helps you out. Take care.....

Amy Fox <foxpro@...> on 10/27/99 11:35:45 AM

Please respond to onelist

onelist

cc: (bcc: Afsi Goodarzpoor/C/Fairfax/Mobil-Notes)

Subject: [ ] remission

From: Amy Fox <foxpro@...>

Okay...I have some questions.

How will I know is in remission? Are they in remission while they

are on medication?

What does the sederate mean?

Jane, I totally know what you mean about the siblings fighting. After

was put on MTX she started wrestling with her younger (but bigger)

brother. I was so excited to see them roughing around. It had been over a

year since she had done that and I was so excited to see her getting physical.

I also worry about 's size. She is 3 years old and weighs 25

pounds. She is so petit.

Her next appointment in Portland, Oregon with rhuemy dr. is Nov. 11th.

~Amy

Mother to (3 years old), (22 months old) and Madeline (5

months old)

*Inside every little girl is the wise and gentle spirit of a woman of God*

*Inside every little boy is the compassion and strength of a man of God*

Visit my homepage for a list of sites with info on childhood arthritis:

http://www.geocities.com/Heartland/Village/8414/

[Guest guest]

Hi Amy,

I agree with Afsi about the state of remission. Some of us parents,

after dealing with this for more years than we'd like, still have never

gotten anywhere near our child reaching a true remission. Some cases are

more stubborn and persistent than others.

However, in our case, we've used the term 'medicated remission' ~to

describe those periods of well-being that the children sometimes have,

even though they are still taking all of their regular arthritis

medications. My son has had a couple of those :-) It's when the illness

is being controlled really well but with help from the drugs they are

taking. I think I appreciate these wonderful periods almost as much as I

would a true remission!!! In my son's case he still has some really

rough times, despite all the meds he takes. Only sometimes, though :-)

Aloha,

Georgina

Afsi Goodarzpoor wrote:

> Hi Amy:

>

> I guess a true remission is achieved when the child has been off of meds for 6

> months or more and has no signs of JRA (e.g. swelling, stiffness, etc). At

> least, this is what my rhuematologist tells us. As I understand it, Sed rate

> shows the level of inflammation in blood. The higher the Sedimentation rate,

> the higher is level of joint pain and achiness. This is one of the values

they

> usually check with JRA to see if it is active or not. Although, once the

child

> has reached some level of stability in the disease, they do not check for that

> all the time. We go for blood tests every 6 weeks but we don't get that

checked

> since my daughter has not been experiencing any pain and stiffness. I hope

this

> helps you out. Take care.....

>

> From: Amy Fox <foxpro@...>

>

> Okay...I have some questions.

>

> How will I know is in remission? Are they in remission while they

> are on medication?

>

> What does the sederate mean?

>

> Jane, I totally know what you mean about the siblings fighting. After

> was put on MTX she started wrestling with her younger (but bigger)

> brother. I was so excited to see them roughing around. It had been over a

> year since she had done that and I was so excited to see her getting physical.

>

> I also worry about 's size. She is 3 years old and weighs 25

> pounds. She is so petit.

>

> Her next appointment in Portland, Oregon with rhuemy dr. is Nov. 11th.

>

> ~Amy

[Guest guest]

I have read that 30-40% of the people diagnosed with hyperthyroidism can go

into remission..especially if they catch and treat it early. Remission is

not a cure however. What we are all looking for is a way to cure this thing.

's supplements may deal with the source of the problem better than PTU

or Tapazol.

But I'm grateful for the Tapazol.

Esther

[Guest guest]

JUST A WEBSITE THAT I FOUND ABOUT " STEALTH " VIRUSES - JUST FOR INFORMATION.

WWW.CCID.ORG.

LUANN

[Guest guest]

Thanks for this site. The stealth virus thing is really scary because it

may mean that we can take antibiotics forever and treat the mycoplasma but

still have a virus which won't be treatable with current drugs.

a Carnes

Re: rheumatic remission

> From: LEBRACE@...

>

> JUST A WEBSITE THAT I FOUND ABOUT " STEALTH " VIRUSES - JUST FOR

INFORMATION.

>

> WWW.CCID.ORG.

>

> LUANN

>

>

[Guest guest]

Georgina, I subscribed to RA-CONSULT. It has some interesting nuggets. (I

think it's mostly doctors.) If you don't already subscribe you may want to

try it. Here's a sample.

>From: Barry Scherr <barryscherr@>

>Reply-Rheumatoid Arthritis Professional Forum <ra-consult@...>

>ra-consult@...

>Subject: Re: [RA-CONSULT] Rheumatoid cachexia

>Date: Sun, 05 Dec 1999 10:45:02 -0600

>

>remission means:

>

>1. duration of morning stiffness less than or equal to fifteen minutes

>2. no fatigue

>3. no joint pain

>4. no joint tenderness or pain on motion

>5. no soft tissue swelling in joints or tendon sheaths

>6. westergren sedimentation rate less than 20 mm/hr and c-reactive

>protein less than 1 mg/dl

>

>in this case we define remission a little more strictly than ara

>criteria. instead of four or more of the above criteria it is five or

>more and the sixth criteria is a mandatory one. the duration of the

>remission is still a minimum of two months but most of those involved

>are now in their fourth year of remission. the crp is included as a

>criteria because it is important as well. these criteria are for male

>patients on medication not spontanteous remissions.

>

>the men involved all still meet the slightly laxer standards of remision

>by the ara as well.

>

>respectfully yours,

>

>barry scherr m.d.

>men's rheumatologist

[Guest guest]

Dear Bev,

This doesn't answer all your questions, but might be helpful. From Dr. Mercola's

physicians' protocol:

____________________________________________

Remission

The following criteria can help establish remission:

*A decrease in duration of morning stiffness to no more than 15 minutes

* No pain at rest

* Little or no pain or tenderness on motion

* Absence of joint swelling

* A normal energy level

* A decrease in the ESR to no more than 30

* A normalization of the patient's CBC. Generally the HGB, HCT,

& MCV will increase to normal and their

" pseudo " -iron deficiency will disappear

* ANA, RF, & ASO titers returning to normal

Chris.

>What qualifies as remission? If you take Celebrex or Vioxx and have =

>no symptoms, are you in remission? Do your labs change on these meds? =

> If you stop taking them and yu relapse are you then not in remission? =

> I was thinking of taking Celebrex because my gp doesn't know anything =

>about Vioxx but read one of the side effects was fainting and your heart =

>stopping. Kind of a serious side effect. Vioxx seems to have had =

>more people involved in the testing. It is hard to decide whether to =

>try it or not after reading about Prozac destroying brain cells with =

>long term use. Some people are on it for years.

>

>Bev

>

>------=_NextPart_000_0016_01BF8A04.964B9020

[Guest guest]

What qualifies as remission? If you take Celebrex or Vioxx and have no symptoms, are you in remission?

That's what they call a "medicated remission" rather than a true (spontaneous) remission. With most DMARDS and NSAIDS you have to stay on the medication to maintain the remission.

Celebrex has had some problems reported with a few people going into congestive heart failure. Vioxx has not had such reports that I have heard of. Vioxx has been tested primarily in OA, and I think it is now going into trials for RA, but doctors are using it off-label for RA in some patients. HTH Liz G

[Guest guest]

I take Vioxx for ra, and oa. It does take the edge off the pain. Vioxx was tested longer than Celebrex thats why Celebrex came out earlier and there were a few suprises with it like a few people having heart problems with it.

I havent heard of anyone having serious problems with Vioxx, or i should say lethal problems like with Celebrex.

IMO, if you are feeling pretty good taking just Vioxx, you arent in remission, but you are doing pretty good with your RA, I dont think there is a NSAID that will really control the pain if you are in a big flare.

Re: rheumatic Remission

From: "Liz G." <pioneer@...>

What qualifies as remission? If you take Celebrex or Vioxx and have no symptoms, are you in remission?

That's what they call a "medicated remission" rather than a true (spontaneous) remission. With most DMARDS and NSAIDS you have to stay on the medication to maintain the remission.

Celebrex has had some problems reported with a few people going into congestive heart failure. Vioxx has not had such reports that I have heard of. Vioxx has been tested primarily in OA, and I think it is now going into trials for RA, but doctors are using it off-label for RA in some patients. HTH Liz G

Enter:

[Guest guest]

Liz,

I was shocked to read the side effects of Celebrex. They were deadly. The study on Vioxx involved 10,000 over a longer period. I know which one I would take altho my gp is pushing Celebrex. There are new ones being introduced all the time so I feel it is better to wait and see.

Just my $.02.

Bev

That's what they call a "medicated remission" rather than a true (spontaneous) remission. With most DMARDS and NSAIDS you have to stay on the medication to maintain the remission.

Celebrex has had some problems reported with a few people going into congestive heart failure. Vioxx has not had such reports that I have heard of. Vioxx has been tested primarily in OA, and I think it is now going into trials for RA, but doctors are using it off-label for RA in some patients. HTH Liz G

Enter:

[Guest guest]

I'm never going off AP no matter what I feel like or my labs say, but

then I'm 53 and Minocin helps with OA and osteo, it's just too scarey to

stop it.

Dan Hines wrote:

>

> From: Dan Hines <paperhanging@...>

>

> I was in remission last summer I had 3 wonderful months. But when I quit

> hurting I also quit taking all meds. Boy was this a mistake!!! Since then

> I have struggled with pain. Last summer all my labs were normal I should

> have kept on the ap for a while longer. Now I think the RA has a stronger

> foot hold than it did before. I hope to get back to that soon.

>

>

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

> PERFORM CPR ON YOUR APR!

> Get a NextCard Visa, in 30 seconds! Get rates as low as

> 0.0% Intro or 9.9% Fixed APR and no hidden fees.

> Apply NOW!

> 1/2121/0/_/532797/_/952751200/

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

[Guest guest]

,

I would be interested in knowing how long you had RA and how long you were

on AP. It is good for our morale to hear of remissions when we are

struggling to get there.

Bev

> I was in remission last summer I had 3 wonderful months. But when I quit

> hurting I also quit taking all meds. Boy was this a mistake!!! Since then

> I have struggled with pain. Last summer all my labs were normal I should

> have kept on the ap for a while longer. Now I think the RA has a stronger

> foot hold than it did before. I hope to get back to that soon.

>

>

[Guest guest]

I don't think I ever will either and that's okay with me once I get to

remission. I guess this is why they advise us to continue with a

maintenance dose for awhile. This is another example of how this list is

invaluable to all of us. Experience like s. You'll get back there

.....just keep plugging along!! <warm smile>

HUGS:-))

Carol

At 10:07 PM 3/10/00 -0800, arjay wrote:

>From: arjay <arjay@...>

>

>I'm never going off AP no matter what I feel like or my labs say, but

>then I'm 53 and Minocin helps with OA and osteo, it's just too scarey to

>stop it.

>

>

>Dan Hines wrote:

> >

> > From: Dan Hines <paperhanging@...>

> >

> > I was in remission last summer I had 3 wonderful months. But when I quit

> > hurting I also quit taking all meds. Boy was this a mistake!!! Since then

> > I have struggled with pain. Last summer all my labs were normal I should

> > have kept on the ap for a while longer. Now I think the RA has a stronger

> > foot hold than it did before. I hope to get back to that soon.

> >

> >

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

> > PERFORM CPR ON YOUR APR!

> > Get a NextCard Visa, in 30 seconds! Get rates as low as

> > 0.0% Intro or 9.9% Fixed APR and no hidden fees.

> > Apply NOW!

> > 1/2121/0/_/532797/_/952751200/

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

>

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

>PERFORM CPR ON YOUR APR!

>Get a NextCard Visa, in 30 seconds! Get rates as low as

>0.0% Intro or 9.9% Fixed APR and no hidden fees.

>Apply NOW!

>1/2121/0/_/532797/_/952754894/

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

[Guest guest]

Dan Hines wrote:

>

>

> I was in remission last summer I had 3 wonderful months. But when I quit

> hurting I also quit taking all meds. Boy was this a

Most people need to stay on a maintenance dose of the antibiotic for

life. Very few people can quit them entirely.

Ethel

[Guest guest]

icq -16430679

AIM - BriarBee

Hi ,

I'm sure you'll get there again. I cut way back on my medication but

didn't stop it and then felt really crummy so I'm gradually getting back to

my 7 day regimen. I stopped taking quite a few of my meds last fall for

the same reason as you. I felt I was just enriching the pockets of the

pharmaceutical companies and I was running out of space in my day of the

week pill box. I can't say I miss them, except the anti inflam I had to

start taking again. BTW by cutting back and starting again, I feel so

much better so I'm wondering if I needed that little break, even though I

felt crummy during the break I took.

Here's to our remission!!!!!

Bev

>

> Bev,

> I was diagnosed with RA in Sept. 96 and went on the AP in Nov of 96 My

> remission was in summer of 99. Which I might still be enjoying if I

> hadn't stopped the AP. I did this on my own I hate taking med all the

> time. My RA wasn't as bad before the remission so I feel like I did

> myself harm from what I read about others I'm still not as bad as some so

> there is always something to be thankful for! I hope to be in remission

> again soon.

>

[Guest guest]

Hi ...I'm curious to know what your Rheumy had to say about you're

achieving remission, then slipping back, and now what to possibly (I know

there's NO definite) expect for repeated remission. I don't think we

discussed that in the group, i.e., second remission.

Thanks for your imput

Judy (Keels)

[Guest guest]

Connie,

you have gotten this far....don't look back...your right to go do some

things you CAN do now...take advantage of that....your farther than some of

us...go girl...

cherlyme

In a message dated 6/11/00 2:02:53 PM, conniek@... writes:

<<.thanks for letting me know that's not true in

all cases.........instead of looking for a return of

symptoms............I'll look forward to doing the things I had to stop

doing.........Thanks, Connie nwnj

>>

[Guest guest]

Thanks for posting Jean..................It gives me hope to hear that

others are in remission.........I'm sitting here waiting for a symptom to

appear.........sounds terrible....but from what people have said on the

list.....it seems, most people have their symptoms return........sometimes

worse than before...........thanks for letting me know that's not true in

all cases.........instead of looking for a return of

symptoms............I'll look forward to doing the things I had to stop

doing.........Thanks, Connie nwnj

[Guest guest]

Dear Connie and Jean: Connie - don't wait around worrying about

whether you'll relapse. Enjoy your health when you have it, and live

life to the fullest for all of us!

- how in the world can you call yourself in remission with

brain-fogging and neuro symptoms? That's lyme - that's why I can't read

for long, that's why I get my words mixed up, or just halt when I speak

- I'm not in remission! I haven't even begun to figure out what

remission is! Perhaps you've come to an understanding that I have not -

that this is what like is like and what it will be like. I'm coming up

on my 2 year anniversary of this disease, was treated promptly, and I'm

not getting better. Maybe you can shed light on your situation for me

if I've misread what you said.

Lovette