Remission

[Guest guest]

I suppose a remission can happen for five years or more, but just a reminder for

everyone there is no cure for arthritis. An extended remission should always be

viewed as a great blessing... but it's certainly not cured. And of course,

that's using the pure form of the word " remission " -- a clinical remission is a

totally different thing, and five years or not, clinical remission is entirely

drug-dependent and therefore obviously not anything remotely resembling a cure.

[Guest guest]

Dear Rosemary,

This disease is very confusing to me too! But I'm starting to expect

its unpredicatablility (somewhat!)

One month I'll be working in the garden (very rare but a sign that

inflammation is right down)

then the next 6 months inflammation will gradually increase till I

beg my doctor for prednisone. He takes me off Naprosyn to put me on

Prednisone and I burst into a flare so bad I can't move and cry at

the drop of I hat and beg to go back on Naprosyn.

Now its back to aching and limping every day and dropping everything.

What really confuses me is patterns I fall into of one day being very

sore then the next day better then the next day very sore alternating

continously. Of course if I see my Rheumy on a good day I look like a

hypochondriac, oh well he's still treating me!

In 8 years I've had one remission I can claim for. 14 months

following the birth of my first child. No pain. No inflammation.

Great regular walks. Exercise. I forgot I had PA. That was 4 years

ago. (Sigh!) I live to feel that good again.The energy I felt was

amazing.

I can't wait for Enbrel to be available in Australia!

I dont take sleeping tablets but my doctor suggested them because I

often can't fall asleep for a few hours due to pain.

Hold in there Rosemary, you're not alone!

> hi glad to see you're all back ,i wasn't getting your letters for

> awhile didnt know why but do now, sortoff ,any way i was wondering

if

> anyone ever went into remission (some what) (I don't have any signs

> of psoriasis yet.) (but the arthritis is bad )right now it sortoff

in

> remission I think .i have lots of pain everyday but (bareable to a

> point) i mean im not cripple to my bed like it was doing ( but do

> have the tiredness )i was flaring up bad and was unable to move it

> was terrible .but its been a year now and no serious flare up but i

> do ache everyday sometimes to the point i can't hold the tears

back.

> im so scared most of time that its going to come back and i know

some

> day it will but for now im good (kind off)I know this don't sound

> like its in remission but to a point i think it is ( someone can

> correct me if im wrong)I guess i would like to know if anyone else

> went through this or is going throught the same . It confuses me

some

> times i don't know what to think.but I know at this point im glad

im

> were im am now , (not really) but its the best i can hope for now

but

> im sure you all know what i mean . i love reading your letters it

> gives me comfort,to know im not alone and everthing thats happening

> to me is not all in my head . this desease is awful , i work with

> home care and i had a client with arthritis and she die the pain

was

> so unbareable she couldnt take it any more and the hospital said

they

> couldnt help her , they sand her home she die that night she was in

> too much pain , i think of her alot , well any way im tied its 9pm

i

> can't stay up past 9pm anymore but its the sleeping pills my rheum.

> got me on for my fibro. does any one else take sleeping pills.my

> rheumatologist says i need then the more sleep i get the better.

good

> night all

[Guest guest]

,

Why in the world have they not tried other drugs for you, I know

naprosyn and celebrex and a lot of other anti-imflammatories did

nothing for me. I was on Sulfasalisine, for about the last 4 almost

five years, we are finally able to decrease and looking to stop

completely that drug. Maybe they should try vioxx or some other anti-

imflammatory. Maybe a disease modifying drug to help with the

progression. Anyway, I hope you get some help until the biologics

become available there.

Keli

> Dear Rosemary,

> This disease is very confusing to me too! But I'm starting to

expect

> its unpredicatablility (somewhat!)

>

> One month I'll be working in the garden (very rare but a sign that

> inflammation is right down)

> then the next 6 months inflammation will gradually increase till I

> beg my doctor for prednisone. He takes me off Naprosyn to put me

on

> Prednisone and I burst into a flare so bad I can't move and cry at

> the drop of I hat and beg to go back on Naprosyn.

>

> Now its back to aching and limping every day and dropping

everything.

> What really confuses me is patterns I fall into of one day being

very

> sore then the next day better then the next day very sore

alternating

> continously. Of course if I see my Rheumy on a good day I look

like a

> hypochondriac, oh well he's still treating me!

>

> In 8 years I've had one remission I can claim for. 14 months

> following the birth of my first child. No pain. No inflammation.

> Great regular walks. Exercise. I forgot I had PA. That was 4 years

> ago. (Sigh!) I live to feel that good again.The energy I felt was

> amazing.

>

> I can't wait for Enbrel to be available in Australia!

> I dont take sleeping tablets but my doctor suggested them because

I

> often can't fall asleep for a few hours due to pain.

>

> Hold in there Rosemary, you're not alone!

>

>

[Guest guest]

Terri, you aren't boasting. That you are in remission is fantastic news!

We want and need to hear positive stories like yours. Hope is so

important here.

Continued good luck to you!

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Remission

> Hello Everyone,

>

> Just a quick note to let you know how I am doing. Saw the Rheumy on

Friday the 13th and she asked me how I was doing. To bring you up to

date when I saw her 3 months prior we decided together to try decreasing

the Arava to every other day. I told her I felt I was in remission.

She felt my hands, and feet. Listened to my heart and lungs. She asked

me how long I am stiff in the morning. I told her I have no stiffness.

She then said, " yes, I agree with you that you are in remission " . My

blood work is excellent. We are now going to decrease the Arava to 2

times per week until I see her again in about 4 months. We do have a

plan if I should slip. I feel wonderful and didn't post earlier because

I feel for the people who are so painful and still struggle with this

disease. I don't want to boast, but hang in there to all.

>

> Terri

[Guest guest]

Terri,

What is Arava? Is it in the same family as enbrel?

Thanks,

ette

>

[Guest guest]

Terri,...That is great news, and I'm so glad for you! It gives us

all hope for brighter futures, so keep up the good work, Tawny

> Hello Everyone,

>

> Just a quick note to let you know how I am doing. Saw the Rheumy

on Friday the 13th and she asked me how I was doing. To bring you up

to date when I saw her 3 months prior we decided together to try

decreasing the Arava to every other day. I told her I felt I was in

remission. She felt my hands, and feet. Listened to my heart and

lungs. She asked me how long I am stiff in the morning. I told her

I have no stiffness. She then said, " yes, I agree with you that you

are in remission " . My blood work is excellent. We are now going to

decrease the Arava to 2 times per week until I see her again in about

4 months. We do have a plan if I should slip. I feel wonderful and

didn't post earlier because I feel for the people who are so painful

and still struggle with this disease. I don't want to boast, but

hang in there to all.

>

> Terri

>

>

[Guest guest]

Great news, Terri. Hope it lasts a looooooonnnnnnnggg time. (like

forever!)

> Hello Everyone,

>

> Just a quick note to let you know how I am doing. Saw the Rheumy

on Friday the 13th and she asked me how I was doing. To bring you up

to date when I saw her 3 months prior we decided together to try

decreasing the Arava to every other day. I told her I felt I was in

remission. She felt my hands, and feet. Listened to my heart and

lungs. She asked me how long I am stiff in the morning. I told her

I have no stiffness. She then said, " yes, I agree with you that you

are in remission " . My blood work is excellent. We are now going to

decrease the Arava to 2 times per week until I see her again in about

4 months. We do have a plan if I should slip. I feel wonderful and

didn't post earlier because I feel for the people who are so painful

and still struggle with this disease. I don't want to boast, but

hang in there to all.

>

> Terri

>

>

[Guest guest]

I feel wonderful and

> didn't post earlier because I feel for the people who are so

painful

> and still struggle with this disease. I don't want to boast

Are you kidding?! Your news brings hope! Glad to hear it.

S

[Guest guest]

Terry,

This is awesome. I am so happy for you. Please don't feel that you

have to leave us now that you are feeling so much better. It gives

me hope that this may happen in my life. I pray every morning when

I wake up and am stiff and in pain that a day will come that I will

have no pain.

I am again so happy for you.

God bless,

Althea

> Hello Everyone,

>

> Just a quick note to let you know how I am doing. Saw the Rheumy

on Friday the 13th and she asked me how I was doing. To bring you

up to date when I saw her 3 months prior we decided together to try

decreasing the Arava to every other day. I told her I felt I was in

remission. She felt my hands, and feet. Listened to my heart and

lungs. She asked me how long I am stiff in the morning. I told her

I have no stiffness. She then said, " yes, I agree with you that you

are in remission " . My blood work is excellent. We are now going to

decrease the Arava to 2 times per week until I see her again in

about 4 months. We do have a plan if I should slip. I feel

wonderful and didn't post earlier because I feel for the people who

are so painful and still struggle with this disease. I don't want

to boast, but hang in there to all.

>

> Terri

>

>

[Guest guest]

Terri,

I'm so happy for you. Thank you for telling us. There have been others

that have gone into remission but they just leave and don't tell the group.

We need to hear about the good and the bad, and we could definitely use some

more good like yours! I hope your remission is permanent and you can enjoy

life to it's fullest.

a

> Hello Everyone,

>

> Just a quick note to let you know how I am doing. Saw the Rheumy on Friday

> the 13th and she asked me how I was doing. To bring you up to date when I saw

> her 3 months prior we decided together to try decreasing the Arava to every

> other day. I told her I felt I was in remission. She felt my hands, and

> feet. Listened to my heart and lungs. She asked me how long I am stiff in

> the morning. I told her I have no stiffness. She then said, " yes, I agree

> with you that you are in remission " . My blood work is excellent. We are now

> going to decrease the Arava to 2 times per week until I see her again in about

> 4 months. We do have a plan if I should slip. I feel wonderful and didn't

> post earlier because I feel for the people who are so painful and still

> struggle with this disease. I don't want to boast, but hang in there to all.

>

> Terri

>

>

[Guest guest]

So happy for you Terri.We really need to keep in touch now to follow your

progress. Your telling us this, is giving many hope.

Hugs

June

-----

Terry,

This is awesome. I am so happy for you. Please don't feel that you

have to leave us now that you are feeling so much better. It gives

me hope that this may happen in my life. I pray every morning when

I wake up and am stiff and in pain that a day will come that I will

have no pain.

I am again so happy for you.

God bless,

Althea

> Hello Everyone,

>

> Just a quick note to let you know how I am doing. Saw the Rheumy

on Friday the 13th and she asked me how I was doing. To bring you

up to date when I saw her 3 months prior we decided together to try

decreasing the Arava to every other day. I told her I felt I was in

remission. She felt my hands, and feet. Listened to my heart and

lungs. She asked me how long I am stiff in the morning. I told her

I have no stiffness. She then said, " yes, I agree with you that you

are in remission " . My blood work is excellent. We are now going to

decrease the Arava to 2 times per week until I see her again in

about 4 months. We do have a plan if I should slip. I feel

wonderful and didn't post earlier because I feel for the people who

are so painful and still struggle with this disease. I don't want

to boast, but hang in there to all.

>

> Terri

>

>

[Guest guest]

Thanks very much for writing, Judy. I so enjoy reading good news like

yours first thing in the morning.

I hope Humira allows you to continue feeling like a " new woman " !

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

Re: [ ] Remission

Mornin' Folks,

Terri, this is wonderful news, I'm very happy for you and glad you

shared.

As a said hope your remission is permanent.

With that said Terri you have inspired me to mention my personal success

of late.

I've posted a time or two but mostly lurk and learn much, for this I

thank each and everyone.

Without going into a long story my first notable signs of RA was a year

ago last June.

The first visit with my Rheumatologist wasn't till December of the same

year and by the first of this year was given the Diagnosis of RA. Below

is a list of meds I'm on. You can see by the dates the doctor was trying

his best to find some relief for me without putting me on " pain meds " ,

something he will not perscribe. I took my second dose Humira this

passed Wednesday. I must say relief came within just a few days after

the first injection on the 4th of this month. Don't know if a remission

is what's happening here but I feel like a new woman, well " new " for a

48 year old woman with RA anyway.

Vioxx - 25mg 1 tab daily.

Rx first dose - 12/05/03

Hydroxychlor (Plaquenil) - 200mg 1 tab morning and evening.

Rx first dose - 12/05/03

Methotrexate - 2.5mg 3 tabs once a week for two weeks then 6 tabs once a

week there after.

Rx first dose - 1/5/04 - Along with this I take Folic Acid 1000mcg

daily.

RX dose change - 3/1/04 - 8 tabs once a week, taken on Mondays.

Humira (Adalimumab) 40mg/0.8 mL Syringe – 1 injection under the skin

every 2 weeks.

Every other Wednesday.

RX first dose - 8/4/04

Ambien - 10mg 1 tab at bedtime for sleep.

Rx first dose - 12/23/03

Perhaps there is real hope for all of us battling RA. Just thought I

would share my little success thus far. May everyone find their own

successes to stop the progression of this awful disease. Thanks again

everyone, now back to my lurk mode.

Judy from Oklahoma

[Guest guest]

Judy,

I hope you continue to do well on your regime of meds. Since it's early in

your disease, maybe you'll be one of the lucky ones to go into permanent

remission.

a

> Mornin' Folks,

>

> Terri, this is wonderful news, I'm very happy for you and glad you shared.

> As a said hope your remission is permanent.

>

> With that said Terri you have inspired me to mention my personal success of

> late.

> I've posted a time or two but mostly lurk and learn much, for this I thank

> each and everyone.

>

> Without going into a long story my first notable signs of RA was a year ago

> last June.

> The first visit with my Rheumatologist wasn't till December of the same year

> and by the first of this year was given the Diagnosis of RA. Below is a list

> of meds I'm on. You can see by the dates the doctor was trying his best to

> find some relief for me without putting me on " pain meds " , something he will

> not perscribe. I took my second dose Humira this passed Wednesday. I must say

> relief came within just a few days after the first injection on the 4th of

> this month. Don't know if a remission is what's happening here but I feel like

> a new woman, well " new " for a 48 year old woman with RA anyway.

>

>

> Vioxx - 25mg 1 tab daily.

>

> Rx first dose - 12/05/03

>

>

>

> Hydroxychlor (Plaquenil) - 200mg 1 tab morning and evening.

>

> Rx first dose - 12/05/03

>

>

>

> Methotrexate - 2.5mg 3 tabs once a week for two weeks then 6 tabs once a week

> there after.

>

> Rx first dose - 1/5/04 - Along with this I take Folic Acid 1000mcg daily.

>

> RX dose change - 3/1/04 - 8 tabs once a week, taken on Mondays.

>

>

>

> Humira (Adalimumab) 40mg/0.8 mL Syringe – 1 injection under the skin every 2

> weeks.

>

> Every other Wednesday.

>

> RX first dose - 8/4/04

>

>

>

> Ambien - 10mg 1 tab at bedtime for sleep.

>

> Rx first dose - 12/23/03

>

> Perhaps there is real hope for all of us battling RA. Just thought I would

> share my little success thus far. May everyone find their own successes to

> stop the progression of this awful disease. Thanks again everyone, now back to

> my lurk mode.

>

> Judy from Oklahoma

[Guest guest]

Remission to us is 100% med free and normal LFT. We are in the

middle of our 4th week!!!

Jayne in NH

Mom to Zach 11 yo DX: AIH 11/02, UC 11/02, Diary free 12/02

>

> What does it mean to be in " remission " ? Do you have to have normal

> LFT's and be off meds? or just have normal LFT's?

>

> Cora

[Guest guest]

Normal LFT and 100% off all medication for 1 year now!!! Praise the

Lord and Thanks be To Him!!! Only by the grace of God.

Bonnie

>

> What does it mean to be in " remission " ? Do you have to have normal

> LFT's and be off meds? or just have normal LFT's?

>

> Cora

[Guest guest]

I was told I would be on Imuran for the rest of my life. How did

you get off Imuran? How long did you have to have normal LFT's

before they took you off Imuran?

Cora

[Guest guest]

Cora, Zachary had to have 2 years of normal LFT's.. he weaned off

prednisone after 18 months on it and spent from february of 04 till 3

weeks ago on 6mp (same as imuran basically) but only at 25 mg a day

for last few months then 25 mg ever other day...now is completely off

of it...for how long? we dont know...but are hoping for a while!!!

Jayne in NH

Mom to Zach 11 yo DX AIH 11/02, UC 11/02, Dairy free 12/02

>

> I was told I would be on Imuran for the rest of my life. How did

> you get off Imuran? How long did you have to have normal LFT's

> before they took you off Imuran?

>

> Cora

[Guest guest]

Great news, I hope he can go back to school soon. He gives me courage! Who is treating Zachary in NH and where? Clara from OR

[ ] Re: Remission

Cora, Zachary had to have 2 years of normal LFT's.. he weaned off prednisone after 18 months on it and spent from february of 04 till 3 weeks ago on 6mp (same as imuran basically) but only at 25 mg a day for last few months then 25 mg ever other day...now is completely off of it...for how long? we dont know...but are hoping for a while!!!Jayne in NHMom to Zach 11 yo DX AIH 11/02, UC 11/02, Dairy free 12/02> > I was told I would be on Imuran for the rest of my life. How did > you get off Imuran? How long did you have to have normal LFT's > before they took you off Imuran?> > Cora

[Guest guest]

I know I'm not Jayne...but I go to NH for treatment. I go to

Dartmouth Hitchchock Medical Center and my doctor is Dr. Dirk Van

Leuuwen (pronounced van layven). I really like him....even if he

does tell me I'm fat.

Cora

[Guest guest]

Cora, Zachary sees Dr. at Dartmouth Hitchcock Medical

Center. She is a Pediatric GI.

Jayne

> >

> > I was told I would be on Imuran for the rest of my life. How

did

> > you get off Imuran? How long did you have to have normal LFT's

> > before they took you off Imuran?

> >

> > Cora

>

>

>

>

>

>

[Guest guest]

,

I belive you are speaking of me. I have been in remission since May 2004.

No meds at all. I came off all my meds in April 2004 as I was having some

minor surgery in preparation for lapband weight loss surgery which occurred in

May

2004.

Before going off all meds I was on: Enbrel, MTX injection 15mg, folic acid

5mg daily, leukovorin, prozac, bextra 20mg, ultram, claritin, multi-vit,

calcium, magnesium, zinc, B-150, evening primrose oil, vit-E, and Fish oil

complex.

I have been in in the past: Methotrexate pills, flexeril, sonota, Arava and

prednisone.

I was diagnosised in 2001-2002..not sure on those dates...but I started on

Arava, pred and Bextra. After about 6-7 months the arava stopped working. So I

got switched to Methotrexate pills..which made me deathly illl and I got drug

induced pneumonitis. that was stopped and Enbrel added. then my doc added

MTX injectable back in..which has always made me very sick...I finally stopped

the MTX on my own...got tired of being sick.

Since having weightloss surgery i have no need for meds. I feel good.

little to no pain. I am on a high protein, low fat, low carb diet, lots of

water,

daily exercise. I have lost 50 lbs so far. I noticed within a few weeks

after surgery that I had no pain at all.

I also do not do sugar, sodas, junk food and eat very little bread. I also

have left my high stress job...I am still out on long term disability.

Good luck

Toni

In a message dated 3/29/2005 11:56:46 AM Central Standard Time,

writes:

Date: Tue, 29 Mar 2005 09:14:06 -0800 (PST)

From: Matejcek <corgi1980@...>

Subject: Remission

Hi,

Some one wrote recently about being in remission and

free of medication since May of 2002. Sorry I cannot

address this person personally, I thought I saved the

email but seems I did not.

Would whoever you are care to speak about this more?

How long were you diagnosed with RA before remission?

What drugs were you on before remission - if any? Do

you do anything now proactively to stay in remission

and avoid flares - diet, exercise, lifestyle changes?

I'd like to learn more if you are willing to share.

As for me, I am 52 and was diagnosed in January of

this year with RA. Currently on 20mg MTX and 5 mg Pred

and working my way down to zero Pred. Feeling very

good and want it to last.

Thanks,

[Guest guest]

Lance, I would also love to hear your story about how you achieved

remission. I've resigned myself to a life of this torment but to hear that

someone has

stopped suffering is wonderful news. Marty

************************************** Get a sneak peek of the all-new AOL at

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[Guest guest]

Reiter's syndrome, as well as other spondy diseases can go into complete

remission, some will have only a few episodes during one's lifetime, and some

have a chronic disease and have to deal with it their whole lifetime. It can

progress to AS and fusion. Most literature says the ReA usually runs it's

course after 6 months. We usually see only the chronic form in this group,

possibly because after dealing with the disease over a long period of time, we

need

extra support. It is always nice to see people in remission. I, myself had a

complete remission from AS...only to return 10 years later with fusions,

uveitis and IBD. I've had AS for about 35 years, all four of my siblings have

it.

Three (maybe more) of my children have it.....various degrees. They do not

know why this happens. It is possible that other genetic markers besides the

HLA B27 gene could play into it. Before they had anti-TNF drugs, this pattern

was pretty much the same. So far, the TNF drugs have helped those with

chronic spondy (arthritic problems) the most...the percentage is high for at

least

80% of our symptoms. Anti-TNF has even reversed damage. Prevents damage the

most. UTI is a separate problem that some have. If antibiotics are given soon

enough, most literature says that it does not seem to help any further if

given over 6 months.

So glad Lance had a good result and it never, never pops it's ugly head for

you. You might be one of the very lucky ones. Happy travels, Lance. Connie

************************************** Get a sneak peek of the all-new AOL at

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[Guest guest]

Hey everyone,

Just for the record, I am typing this?in?a light-hearted, jokey sort of way:

I am experiencing a spontaneous remission.? I no longer feel well taking my

armour due to hyperT symptoms.? I have not taken any armour in two days, and the

day before that I only took 2 pills compared to my usual 14 (7 grains).? I

realize that perhaps this is just part of the rolercoaster, but the joy of not

having to take so many pills in a day has been amsolutely amazing.? Not needing

to schedule my whole day to fit in time for the pills, not gagging at the smell,

the whole thing ... I am so happy at not having to take them. Even if it is just

for a couple of days.? I know that the chances of?an actual remission happening

are pretty much impossible, but I'm praying my hardest anyway.

Wish me luck!

________________________________________________________________________

More new features than ever. Check out the new AOL Mail ! -

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[Guest guest]

I certainly do wish you luck. I also wish it for the rest of us. Maybe there is

really

hope.

Roni

bear339@... wrote:

Hey everyone,

Just for the record, I am typing this?in?a light-hearted, jokey sort of way:

I am experiencing a spontaneous remission.? I no longer feel well taking my

armour due to hyperT symptoms.? I have not taken any armour in two days, and the

day before that I only took 2 pills compared to my usual 14 (7 grains).? I

realize that perhaps this is just part of the rolercoaster, but the joy of not

having to take so many pills in a day has been amsolutely amazing.? Not needing

to schedule my whole day to fit in time for the pills, not gagging at the smell,

the whole thing ... I am so happy at not having to take them. Even if it is just

for a couple of days.? I know that the chances of?an actual remission happening

are pretty much impossible, but I'm praying my hardest anyway.

Wish me luck!

__________________________________________________________

More new features than ever. Check out the new AOL Mail ! -

http://webmail.aol.com