Re: Experiences going off meds after remission?

[Guest guest]

RR, If I were you, I wouldn't mess with success.

Enbrel gives me the same charming results as you, and I'm not about to

quit using it to see what happens. I imagine the stiffness and pain

would come right back.

Sue

On Saturday, October 11, 2008, at 02:46 PM, Jeff Shelton wrote:

> six months ago he put me on methotrexate and Enbrel. That worked like

> a charm - for the last three months I've had no symptoms at all - no

> stiffness, no swollen joints, no fatigue - everything went away like a

> bad dream.

[Guest guest]

Correct me if I am wrong but isn't it possible that those meds are what has you

in remission? Why would you want to risk going off the meds that are obviously

helping you?

Not judging.... just curious because I have a feeling I am in remission (YAY!)

and the thought of going off my meds SCARES me!

*~ Kami ~*

[ ] Experiences going off meds after remission?

Hi folks,

New to the list, and I have a question. Here's the background: after two years

of docs thinking I might have reactive arthritis or undifferentiated SA, the

rheumatologist settled on a diagnosis of seronegative RA. After a few months of

messing around with plaquinil (useless) and multiple short courses of prednisone

(only helped while I was actually taking it), six months ago he put me on

methotrexate and Enbrel. That worked like a charm - for the last three months

I've had no symptoms at all - no stiffness, no swollen joints, no fatigue -

everything went away like a bad dream.

I'm wondering if anyone out can tell me about there experience in tapering off

their meds after a remission? Don't worry, I won't do this unless my rheumy

agrees, I'm just wondering if someone who's tried it can tell me what luck they

had? If you relapsed, how quickly/badly? Any trouble in going back on the meds

and getting back into remission? Any noticable joint damage result from trying

to go off the meds? That's the one thing I worry about - already at this point,

my left wrist will never be quite the same. Much as I'd like to get off the

MTX/Enbrel, I really don't want to accumulate any more damage.

Thanks for any feedback - rr

[Guest guest]

Kami,

I'm quite sure that MTX/Enbrel ARE the reason my RA went away. And I'll

certainly keep taking them as long as I *have* to. But it would be nice to get

off them if that were to be possible. Two main reasons:

- Group insurance through work is going to switch to a % co-pay for Enbrel next

year, so the cost to me is going to jump by $350-450 a month.

- I've been disgustingly healthy all my life, till the RA hit, and the idea of

having to take pills and shots for the rest of my life bothers me. Silly, I

know, but there it is.

Neither of those is enough for me to take too many chances on the RA - but I do

wonder if after a long enough remission (whatever the rheumatologist decides is

long enough), it might be reasonable to try to taper off the meds.

rr

Re: [ ] Experiences going off meds after remission?

Correct me if I am wrong but isn't it possible that those meds are what has you

in remission? Why would you want to risk going off the meds that are obviously

helping you?

Not judging.... just curious because I have a feeling I am in remission (YAY!)

and the thought of going off my meds SCARES me!

*~ Kami ~*

[Guest guest]

Jeff,

If RA is diagnosed early enough and immediately treated aggressively,

drug-free remission is possible after the disease is well under

control - but only for a minority of patients. It's also possible to

scale back the DMARDs to lower doses or, perhaps, only to one DMARD.

These strategies fall under the heading of " induction therapy. "

I would ask your rheumatologist about any strategies he/she may have

used with other patients.

Not an MD

On Sat, Oct 11, 2008 at 1:46 PM, Jeff Shelton <rodentrancher@...> wrote:

> Hi folks,

>

> New to the list, and I have a question. Here's the background: after two

> years of docs thinking I might have reactive arthritis or undifferentiated

> SA, the rheumatologist settled on a diagnosis of seronegative RA. After a

> few months of messing around with plaquinil (useless) and multiple short

> courses of prednisone (only helped while I was actually taking it), six

> months ago he put me on methotrexate and Enbrel. That worked like a charm -

> for the last three months I've had no symptoms at all - no stiffness, no

> swollen joints, no fatigue - everything went away like a bad dream.

>

> I'm wondering if anyone out can tell me about there experience in tapering

> off their meds after a remission? Don't worry, I won't do this unless my

> rheumy agrees, I'm just wondering if someone who's tried it can tell me what

> luck they had? If you relapsed, how quickly/badly? Any trouble in going back

> on the meds and getting back into remission? Any noticable joint damage

> result from trying to go off the meds? That's the one thing I worry about -

> already at this point, my left wrist will never be quite the same. Much as

> I'd like to get off the MTX/Enbrel, I really don't want to accumulate any

> more damage.

>

> Thanks for any feedback - rr

[Guest guest]

rr,

Have you checked into the assistance plan with Enbrel? My rheummy told

me about it and I have forgotten how it works. I was amazed how well

my insurnace covered mine and didn't need it. (yet)

Shirley

--- In , Jeff Shelton <rodentrancher@...>

wrote:

>

> Kami,

>

> I'm quite sure that MTX/Enbrel ARE the reason my RA went away. And

I'll certainly keep taking them as long as I *have* to. But it would

be nice to get off them if that were to be possible. Two main reasons:

>

[Guest guest]

rr,

Welcome to the group. I added Enbrel with MTX 5 weeks ago. How long

did it take for you to realize remission?

Thanks,

Shirley

--- In , Jeff Shelton <rodentrancher@...>

wrote:

>

> Hi folks,

>

> New to the list, and I have a question. Here's the background:

after two years of docs thinking I might have reactive arthritis or

undifferentiated SA, the rheumatologist settled on a diagnosis of

seronegative RA. After a few months of messing around with plaquinil

(useless) and multiple short courses of prednisone (only helped

while I was actually taking it), six months ago he put me on

methotrexate and Enbrel. That worked like a charm - for the last

three months I've had no symptoms at all - no stiffness, no swollen

joints, no fatigue - everything went away like a bad dream.

>

> I'm wondering if anyone out can tell me about there experience in

tapering off their meds after a remission? Don't worry, I won't do

this unless my rheumy agrees, I'm just wondering if someone who's

tried it can tell me what luck they had? If you relapsed, how

quickly/badly? Any trouble in going back on the meds and getting

back into remission? Any noticable joint damage result from trying

to go off the meds? That's the one thing I worry about - already at

this point, my left wrist will never be quite the same. Much as I'd

like to get off the MTX/Enbrel, I really don't want to accumulate

any more damage.

>

> Thanks for any feedback - rr

>

>

>

>

>

>

[Guest guest]

If you get sick with an infection, you're supposed to stop the Enbrel

until you get over the infection. An episode like this might possibly

give you a clue as to whether you could go off of it permanently. I

would say, though, probably not.

Sue

On Saturday, October 11, 2008, at 04:36 PM, Jeff Shelton wrote:

>

> Neither of those is enough for me to take too many chances on the RA -

> but I do wonder if after a long enough remission (whatever the

> rheumatologist decides is long enough), it might be reasonable to try

> to taper off the meds.

[Guest guest]

Shirley,

I started methotrexate (17.5 mg/week) and Enbrel at the same time. Felt a lot

better after only a month, but it took about 4 months for all my symptoms to go

away.

[ ] Re: Experiences going off meds after remission?

rr,

Welcome to the group. I added Enbrel with MTX 5 weeks ago. How long

did it take for you to realize remission?

Thanks,

Shirley

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[Guest guest]

Very interesting , thank you. The abstract from the research article you

posted along these lines also looks interesting.

Re: [ ] Experiences going off meds after remission?

Jeff,

If RA is diagnosed early enough and immediately treated aggressively,

drug-free remission is possible after the disease is well under

control - but only for a minority of patients. It's also possible to

scale back the DMARDs to lower doses or, perhaps, only to one DMARD.

These strategies fall under the heading of " induction therapy. "

I would ask your rheumatologist about any strategies he/she may have

used with other patients.

Not an MD

[Guest guest]

Jeff,

I understand now! That SERIOUSLY sucks! Any chance you would be grandfathered

under something as pre-existing? If not, I would definitely check into any

assistance plans available for Enbrel.

This is going to sound corny but.... I can't even begin to imagine what it must

be like as a man to have this (or any) chronic disease. I shudder to think if

something like this would ever happen to my hubby because up until a few years

ago he even refused to take a VITAMIN. I honestly think that this (or any

chronic disorder) has to be harder on a man than a woman. I just seem to be more

empathetic towards men with this disease for some reason!(Ladies...send your

angry emails to me directly...don't clog the list! hee hee)

best of luck to you and please.... Talk to your rheumy before doing anything!!!

*~ Kami ~*

Re: [ ] Experiences going off meds after remission?

Kami,

I'm quite sure that MTX/Enbrel ARE the reason my RA went away. And I'll

certainly keep taking them as long as I *have* to. But it would be nice to get

off them if that were to be possible. Two main reasons:

- Group insurance through work is going to switch to a % co-pay for Enbrel

next year, so the cost to me is going to jump by $350-450 a month.

- I've been disgustingly healthy all my life, till the RA hit, and the idea of

having to take pills and shots for the rest of my life bothers me. Silly, I

know, but there it is.

Neither of those is enough for me to take too many chances on the RA - but I

do wonder if after a long enough remission (whatever the rheumatologist decides

is long enough), it might be reasonable to try to taper off the meds.

.

[Guest guest]

Kami:

I think, in a way, that you might be correct about that. As men, most of us are

taught to be strong, to provide, to never let our emotions or feelings show, to

never admit when we are vulnerable, hurt, not up to something, etc.

Emotionally, that can leave a lot of room for self-loathing and self-hatred once

a man is diagnosed, not to mention depression...

--

Dodge

Let me deal with honor. Let me act with courage. Let me achieve humility.

Read my blog at:

http://jumpthis.wordpress.com

---- ~ Kami ~ <kamilleon@...> wrote:

=============

Jeff,

I understand now! That SERIOUSLY sucks! Any chance you would be grandfathered

under something as pre-existing? If not, I would definitely check into any

assistance plans available for Enbrel.

This is going to sound corny but.... I can't even begin to imagine what it must

be like as a man to have this (or any) chronic disease. I shudder to think if

something like this would ever happen to my hubby because up until a few years

ago he even refused to take a VITAMIN. I honestly think that this (or any

chronic disorder) has to be harder on a man than a woman. I just seem to be more

empathetic towards men with this disease for some reason!(Ladies...send your

angry emails to me directly...don't clog the list! hee hee)

best of luck to you and please.... Talk to your rheumy before doing anything!!!

*~ Kami ~*

[Guest guest]

Hi Jeff

I have tapered off meds (under my rheumatologist's instruction) twice now.

He starts tapering off after I've been in drug-induced remissiom, with

normal blood test results, for around two years.

The first time I went off the meds, I was in full remission for 3 years

before I flared again. The next time I had remission for 4 years before I

flared. I'm in my 3rd drug-induced remission right now - and have been so

for 2 years now. We won't be tapering off again yet though, as blood tests

still show underlying disease activity.

I hope my experiences are helpful

in NZ

[Guest guest]

Very helpful, , thanks.

Didn't realize that RA would come back on you like that after 3-4 year

remissions. Ouch, that had to have been a terrible disappointment. But, I

appreciate knowing, and I'll try to keep a realistic perspective - thanks again.

[ ] Re: Experiences going off meds after remission?

Hi Jeff

I have tapered off meds (under my rheumatologist' s instruction) twice now.

He starts tapering off after I've been in drug-induced remissiom, with

normal blood test results, for around two years.

The first time I went off the meds, I was in full remission for 3 years

before I flared again. The next time I had remission for 4 years before I

flared. I'm in my 3rd drug-induced remission right now - and have been so

for 2 years now. We won't be tapering off again yet though, as blood tests

still show underlying disease activity.

I hope my experiences are helpful

in NZ

[Guest guest]

i know 2 ppl on enbrel who a couple years after achieving remission, cut

dose in half and retained remission.

monique