Another New Member

[Guest guest]

Hi- I have had RA for 9 years and have been on the antibiotic protocol

along with prednisone (as needed), mtx, and nsaids. I've been doing

pretty good but the joint destruction keeps getting worse. I'm

considering embrel or humira. I'm a little afraid of these but then I

was afraid of mtx too. I'd like to hear how some of you are doing on

these drugs, how long you've been on them, side effects, etc.

One thing I don't understand is; if you get an infection you have to

stop the drug BUT what about the fact that the drug is already in your

system?? And, what about being around children who seem to always have

a cold, flu, etc.

I'm anxious to hear from you.

Lea

[Guest guest]

Hi Lea,

I started on Enbrel last June. It didn't work very well for me

(though better than anything else we had tried at that point!)so I

switched to Humira in November. While it's not perfect, the Humira

works MUCH better than anything else. I am fianlly able to wean off

my prednisone and am down to 7mg per day.

As far as infections are concerned, I was worried too. But so far,

it hasn't been a problem. I have 2 school-age kids, so they do bring

things home. I don't think I've caught any more of them than I ever

have. (maybe less because we are all more careful about it) When I

_have_ caught something, I take Airborne religiously until I'm

better. BTW, I checked with my doc about the Airborne first, and she

said it was fine, either when I had a cold, or when I was flying, to

prevent picking something up. It _is_ an immune booster, but very

mild.

I had to be tested for TB before I started on Enbrel, and again when

I started on Humira. I'm not sure why, because the tests weren't

that far apart, but it could be because I changed docs in the same

time period. (my old one moved away)

As far as more serious infections are concerned, when I first started

on Humira, I was given a prescription for a heavy-duty antibiotic

that I am supposed to keep on hand. If I get a fever over 100.4, I

am supposed to take a dose of the antibiotics immediately, and then

go straight to the ER. I guess the biggest danger is a blood

infection, and if that happens, they want to catch it realy fast. If

I get a fever over 100, I'm supposed to call the doc right away, and

he'll decide what to do. That said, neither has happened.

Even though I was given the above instructions, the doc also told me

that the likelihood of a serious infection was slim, it's just that

it was important to be aware of the signs, and be ready to respond

appropriately, rather than take a chance on it getting out of hand.

Over all, I'm VERY happy with the Humira. As I said, it's not

perfect. I still have occassional flares that really slow me down,

and I have had very few completely pain-free days. But I can

function again, which is great after almost a solid year of NOT

functioning.

--- In , " leatannerone " <leatanner@...>

wrote:

>

> Hi- I have had RA for 9 years and have been on the antibiotic

protocol

> along with prednisone (as needed), mtx, and nsaids. I've been

doing

> pretty good but the joint destruction keeps getting worse. I'm

> considering embrel or humira. I'm a little afraid of these but

then I

> was afraid of mtx too. I'd like to hear how some of you are doing

on

> these drugs, how long you've been on them, side effects, etc.

>

> One thing I don't understand is; if you get an infection you have

to

> stop the drug BUT what about the fact that the drug is already in

your

> system?? And, what about being around children who seem to always

have

> a cold, flu, etc.

>

> I'm anxious to hear from you.

>

> Lea

>

[Guest guest]

Welcome, Lea!

You've already heard from some of our members on this point. If this is one

of your largest concerns, then you should know that Enbrel's half-life is

shorter than Humira's.

I would ask your rheumatologist about this issue and see what he or she says

about it, what his or her strategy is.

Not an MD

[ ] Another New Member

> Hi- I have had RA for 9 years and have been on the antibiotic protocol

> along with prednisone (as needed), mtx, and nsaids. I've been doing

> pretty good but the joint destruction keeps getting worse. I'm

> considering embrel or humira. I'm a little afraid of these but then I

> was afraid of mtx too. I'd like to hear how some of you are doing on

> these drugs, how long you've been on them, side effects, etc.

>

> One thing I don't understand is; if you get an infection you have to

> stop the drug BUT what about the fact that the drug is already in your

> system?? And, what about being around children who seem to always have

> a cold, flu, etc.

>

> I'm anxious to hear from you.

>

> Lea

[Guest guest]

Hi Lea, I'm on Enbrel and prednisone. I got a cold right after I started the

Enbrel. My rheum had me hold off on taking the next dose of Enbrel and

prescribed an antibiotic to take just in case. I fought it off on my own and

continued the Enbrel a few days off schedule. I have a toddler and am trying

for another baby. I also work in a hospital where cooties abound. So far so

good. Fighting back the cold bolstered my confidence. Welcome, and best

wishes, Kate F

<Matsumura_Clan@...> wrote: Welcome, Lea!

You've already heard from some of our members on this point. If this is one

of your largest concerns, then you should know that Enbrel's half-life is

shorter than Humira's.

I would ask your rheumatologist about this issue and see what he or she says

about it, what his or her strategy is.

Not an MD

[ ] Another New Member

> Hi- I have had RA for 9 years and have been on the antibiotic protocol

> along with prednisone (as needed), mtx, and nsaids. I've been doing

> pretty good but the joint destruction keeps getting worse. I'm

> considering embrel or humira. I'm a little afraid of these but then I

> was afraid of mtx too. I'd like to hear how some of you are doing on

> these drugs, how long you've been on them, side effects, etc.

>

> One thing I don't understand is; if you get an infection you have to

> stop the drug BUT what about the fact that the drug is already in your

> system?? And, what about being around children who seem to always have

> a cold, flu, etc.

>

> I'm anxious to hear from you.

>

> Lea

---------------------------------

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[Guest guest]

Lea, I started on enbrel about a year ago and have had good results with it.

My labs and function are much better than prior to starting. I had been on MTX,

folic acid and naproxen for about 3 years with gradual worsening of symptoms. I

did not tolerate increasing MTX and elected to stay on low dose MTX and add the

enbrel. I was on antibiotic therapy every other day and stopped shortly after

starting enbrel. I have not had an problem with infections or other illness.

I keep my grandchildren a couple of days a week and they are in day care part

time and constantly have everything. We have had three episodes where thay have

spent time in Vanderbilt Childrens Hospital and I stayed a large part of the

time with all the coughing and germs floating around and stayed healthy. I take

the enbrel twice a week as opposed to once a week or humira which you take every

other week. I figure that if an infection happens taking it twice a week it

does not stay in my system as

long if I need to stop it for a short time. I have since stopped the MTX (it

makes me so tired I just can't function the way I want to for 2-3 days after

taking it). I pray that whatever you choose it works and you have lessening

damage and feel better. in TN

Randall <krandall@...> wrote: Hi Lea,

I started on Enbrel last June. It didn't work very well for me

(though better than anything else we had tried at that point!)so I

switched to Humira in November. While it's not perfect, the Humira

works MUCH better than anything else. I am fianlly able to wean off

my prednisone and am down to 7mg per day.

As far as infections are concerned, I was worried too. But so far,

it hasn't been a problem. I have 2 school-age kids, so they do bring

things home. I don't think I've caught any more of them than I ever

have. (maybe less because we are all more careful about it) When I

_have_ caught something, I take Airborne religiously until I'm

better. BTW, I checked with my doc about the Airborne first, and she

said it was fine, either when I had a cold, or when I was flying, to

prevent picking something up. It _is_ an immune booster, but very

mild.

I had to be tested for TB before I started on Enbrel, and again when

I started on Humira. I'm not sure why, because the tests weren't

that far apart, but it could be because I changed docs in the same

time period. (my old one moved away)

As far as more serious infections are concerned, when I first started

on Humira, I was given a prescription for a heavy-duty antibiotic

that I am supposed to keep on hand. If I get a fever over 100.4, I

am supposed to take a dose of the antibiotics immediately, and then

go straight to the ER. I guess the biggest danger is a blood

infection, and if that happens, they want to catch it realy fast. If

I get a fever over 100, I'm supposed to call the doc right away, and

he'll decide what to do. That said, neither has happened.

Even though I was given the above instructions, the doc also told me

that the likelihood of a serious infection was slim, it's just that

it was important to be aware of the signs, and be ready to respond

appropriately, rather than take a chance on it getting out of hand.

Over all, I'm VERY happy with the Humira. As I said, it's not

perfect. I still have occassional flares that really slow me down,

and I have had very few completely pain-free days. But I can

function again, which is great after almost a solid year of NOT

functioning.

--- In , " leatannerone " <leatanner@...>

wrote:

>

> Hi- I have had RA for 9 years and have been on the antibiotic

protocol

> along with prednisone (as needed), mtx, and nsaids. I've been

doing

> pretty good but the joint destruction keeps getting worse. I'm

> considering embrel or humira. I'm a little afraid of these but

then I

> was afraid of mtx too. I'd like to hear how some of you are doing

on

> these drugs, how long you've been on them, side effects, etc.

>

> One thing I don't understand is; if you get an infection you have

to

> stop the drug BUT what about the fact that the drug is already in

your

> system?? And, what about being around children who seem to always

have

> a cold, flu, etc.

>

> I'm anxious to hear from you.

>

> Lea

>

---------------------------------

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[Guest guest]

Hi Marsha,

My doctor is sending me to Pulmonology. To quote her, she said, " It looks

Interstitial. I wonder how they're (Pulmonology) going to read this? " . She

called me about 30 minutes ago and informed me that my heart looked a little

enlarged on the chest x-ray, which is why she ordered the echo and cardiolite.

But those tests aren't going to be done until later in May. The spinal surgeon

wants to do my spinal surgery May 9th. I'm thinking,...the surgery is going

to be postponed, for now, but hopefully, not forever.

If I'm not mistaken, Mitral Valve Prolapse problems can cause the heart to

enlarge. Does any one know?

Carol

In a message dated 4/13/2007 1:53:30 P.M. Pacific Daylight Time,

marshahostetler@... writes:

Welcome Carol,

I am sorry you are going through so much. My name is Marsha I am 48 dx's

with RA in September, I live in Gray Summit Missouri, the Show-Me state. I

have no children but my animals keep me going when I do not feel human anymore.

I was in a bad flare for a couple of months so I had to use a cane

Do they think COPD? They thought I had that 7 years ago but turned out neg.

for me. 8 grandkids how wonderful and you have every right to brag so brag

on.

You will love the group, everyone is so supportive.

Marsha

************************************** See what's free at http://www.aol.com.

[Guest guest]

Welcome Carol,

I am sorry you are going through so much. My name is Marsha I am 48 dx's with

RA in September, I live in Gray Summit Missouri, the Show-Me state. I have no

children but my animals keep me going when I do not feel human anymore. I was

in a bad flare for a couple of months so I had to use a cane

Do they think COPD? They thought I had that 7 years ago but turned out neg.

for me. 8 grandkids how wonderful and you have every right to brag so brag on.

You will love the group, everyone is so supportive.

Marsha

[ ] Another New Member

Hi everyone. Another New Member. My name is Carol. I am 52, married (35

years), I live in Southern California, with my hubby, son, and a big furball

that resembles a small black bear more than he does a dog. My three daughters

have all married and gone. I have 8 beautiful grandkids! (What kind of

Grandma would I be if I didn't BRAG?)

I was officially diagnosed with Arthritis in 1995 at the age of 41. Since

then, I've had both hips replaced (Osteonecrosis) , my right knee replaced, my

right great toe joint replaced, left shoulder decompression (frozen shoulder),

and left knee miniscus repair, and a Lumbar Laminectomy (spinal stenosis). I

am now facing a multi-level fusion of my spine (because of severe Spinal

Stenosis, Spondylolisthesis and Scoliosis) and another TKR (total knee

replacement) .

I wish Arthritis was the only thing I had to contend with, but I'm not that

lucky (as I'm sure most of you are not). I also have: MS, Lupus, 's

Disease, Psoriasis, Psoriatic Arthritis, Fibromyalgia, GERD, Mitral Valve

Prolapse, and IBS.

It looks like I'm in a Lupus flare right now (which can trigger other

conditions to flare). I was just put on Imuran and QVAR. So far, they aren't

helping. My lungs are hurting, my chest hurts. Heck, everything hurts! LOL! I am

soooo stiff! My doc said my new chest x-ray (taken Monday) looked like

Interstitial Lung Disease. My PCP is sending the x-ray to be read by a

specialist. I

haven't heard back. My lungs were filled with this white lacy looking stuff,

sort of honeycombed throughout. I've never seen an x-ray like that before.

Even small, shallow breaths hurt right now.

Carol

************ ********* ********* ******** See what's free at http://www.aol.

com.