Re: Happy to have started Enbrel Finally

[Guest guest]

Hi OKD: I know you have been suffering a lot lately, and I feel very

badly for you. It is unfortunate that we have to search and try to find

the right " coctail " of meds. that work for us. Sometimes it takes a

long time. We just have to try to do our best in between. Strong pain

meds. help, as does Prednisone. At least we have a range of things that

our Rheumys offer us. We just have to find the right ones for us.

I too, hope that Enbrel works for you. I know a lot of members here

have had such good results with it. I hope you will too.

RA is a ugly disease. It reared its ugly head to me 6 years ago. It

has taken this long for me to finally be pain free. I have been pain

free since last Oct. I can hardly believe it myself. Right now I am

decreasing my daily dose of Pred. I have been on Pred. daily for 6

years. I could never go without it. I had been on 10 mg., now I am

taking 5 mg. a day. I am decreasing so very slowly. So far I am doing

good. I do have very stiff feet and ankles upon rising in the a.m. But

after I get going, this settles down, and is managable.

I truly hope you will feel better soon. Just take one day at a time

like I do. I can't handle anymore than that.

Yes, stress is very bad for RA. With the stress I have been under for

so long, it is amazing that my RA has not flared. My doctors were so

worried about that. I am doing good.

I wish you many pain free days ahead. Keep your chin up, and forge

ahead. Rest as much as you can. I do each and every day. Don't feel

guilty if you can't do much each day. The important thing is to

remember, that you have to take care of you. No one can do it for you.

You don't need to explain anything to anyone. This is a hard illness to

live with. Only the people that have it, can truly understand out daily

battle.

Take care of yourself, and I care.

Hugs,

Barbara

--- In , " cofade_2000 " <Cofade_2000@...>

wrote:

>

> Hi Group:

>

> Been feeling very miserable lately. Never know how i am going to wake

up. Bad neck pain, back pain, ankle swelling, jaw hurting, despite being

upped on the MTX to 6 pills (2.5 each) every week.

>

> Took my first Enbrel shot on Friday, I dont feel anything yet (only

hope). Very depressed cause I feel so lousy, the pain doc upped my

fentantyl patches to 37.5 because they werent working. Actually 2 days

last week I took Aleve and then Tylenol c Codiene cause the aching pains

were so bad. Dont want to overtax my liver, so I stopped those. I broke

down and took 4 days of prednisone (20 to start and then 3 days of 10)

because i just couldnt take the swelling and pain. And my ankle is still

swollen.

>

> My Rheumy says I gotta stay on the Enbrel 3 mos before she can gage is

its working or not.

>

> Funny, after 15 yrs they just took my aunt off of Enbrel because it

exascerbated damage to her heart (and she had open heart surgery)....I

hope Enbrel doesnt mess with my heart (its the only one i have - L0L:))'

>

> I noticed that stress really makes RA bad too, so I am trying to Zen

myself....

>

> OKD

>

> So glad I can read all this info, it really helps to know I am not the

only one and that my burden is not as bad as others.

>

[Guest guest]

I've had about six good days in a row, that's a record for me. But now I'm

starting to feel a flare coming and I'm not feeling very good. I'm back sliding!

We'll see where it goes. I'm generally do the same thing as you, have a couple

of good days, then go through an RA ordeal, and feel very depressed about it.

Hang in there. I was gonna say it gets better, but sometimes it doesn't, but it

does get the same! ( lol ). I'd check on the Aleve , I was told to stay away

from that and Advil, because it's hard on the stomach and doesn't do well with a

lot of our meds . They're talking about prednisone for me, I running out of room

to put all this crap, now I have a bunch of stuff I don't take but I don't want

to get rid of it right away either, I might be told to take it next month! Take

care.

Stan,

Seattle, clouds to burn off then sun.

Sent: Thursday, July 23, 2009 7:20:21 AM GMT -08:00 US/Canada Pacific

Subject: [ ] Happy to have started Enbrel Finally

Hi Group:

Been feeling very miserable lately. Never know how i am going to wake up.  Bad

neck pain, back pain, ankle swelling, jaw hurting, despite being upped on the

MTX to 6 pills (2.5 each) every week.

Took my first Enbrel shot on Friday, I dont feel anything yet (only hope).

 Very depressed cause I feel so lousy, the pain doc upped my fentantyl patches

to 37.5 because they werent working.  Actually 2 days last week I took Aleve

and then Tylenol c Codiene cause the aching pains were so bad. Dont want to

overtax my liver, so I stopped those.  I broke down and took 4 days of

prednisone (20 to start and then 3 days of 10) because i just couldnt take the

swelling and pain. And my ankle is still swollen.

My Rheumy says I gotta stay on the Enbrel 3 mos before she can gage is its

working or not.

Funny, after 15 yrs they just took my aunt off of Enbrel because it exascerbated

damage to her heart (and she had open heart surgery)....I hope Enbrel doesnt

mess with my heart (its the only one i have - L0L:))'

I noticed that stress really makes RA bad too, so I am trying to Zen myself....

OKD

So glad I can read all this info, it really helps to know I am not the only one

and that my burden is not as bad as others.

[Guest guest]

Thanks so much Barbara, yes, there is so much adjusting to do. Finally, my

family is understanding that Iam changing. I cant do all the running around

after work, cooking cleaning, etc.

The one saving grace is that I am babysitting my daughter's beloved pittbull

Naya, and that I have to walk her 4 times a day, she is loving it and I am

" working out the kinks " . I cant run her, but we get going pretty well. God

Bless the animals, huh?

OKD

>

>

> Hi OKD: I know you have been suffering a lot lately, and I feel very

> badly for you. It is unfortunate that we have to search and try to find

> the right " coctail " of meds. that work for us. Sometimes it takes a

> long time. We just have to try to do our best in between. Strong pain

> meds. help, as does Prednisone. At least we have a range of things that

> our Rheumys offer us. We just have to find the right ones for us.

>

> I too, hope that Enbrel works for you. I know a lot of members here

> have had such good results with it. I hope you will too.

>

> RA is a ugly disease. It reared its ugly head to me 6 years ago. It

> has taken this long for me to finally be pain free. I have been pain

> free since last Oct. I can hardly believe it myself. Right now I am

> decreasing my daily dose of Pred. I have been on Pred. daily for 6

> years. I could never go without it. I had been on 10 mg., now I am

> taking 5 mg. a day. I am decreasing so very slowly. So far I am doing

> good. I do have very stiff feet and ankles upon rising in the a.m. But

> after I get going, this settles down, and is managable.

>

> I truly hope you will feel better soon. Just take one day at a time

> like I do. I can't handle anymore than that.

>

> Yes, stress is very bad for RA. With the stress I have been under for

> so long, it is amazing that my RA has not flared. My doctors were so

> worried about that. I am doing good.

>

> I wish you many pain free days ahead. Keep your chin up, and forge

> ahead. Rest as much as you can. I do each and every day. Don't feel

> guilty if you can't do much each day. The important thing is to

> remember, that you have to take care of you. No one can do it for you.

> You don't need to explain anything to anyone. This is a hard illness to

> live with. Only the people that have it, can truly understand out daily

> battle.

>

> Take care of yourself, and I care.

>

> Hugs,

>

> Barbara

[Guest guest]

Hi Stan:

Yep. Not to mention the COSTS. Thank god for insurance, but the Enbrel costs

are scary. Even though mine pays 90% the 10% left over is $150.00 a month.

That doesnt include the MTX, Prednisone, other med I take, plus my son takes 3

as an asthmatic. ..anyways, the Enbrel folks agreed to pick up the costs of the

Enbrel for one year, so I PRAY it works for me.

Took it Friday, dont feel any diff so far, actually feel worse. I am not

flaring anymore (thanks to MTX) but I am still on the swelling and pain 'tip'.

By the way has anyone dropped the nightshades from their diet and seen a

difference (potatoes/tomatoes)? I love my mashed, cooking with tomatoe sauce

and my cherry tomatoes, but I will give em up in a heartbeat if it stops the RA.

OKD

[Guest guest]

Stan, I got a bleeding ulcer from Aleve. Next I took Bextra until they

took it off the market, then Celebrex until my insurance company made

the co-pay $50 a month, and now I take arthritis-strength Tylenol.

Sue

On Jul 23, 2009, at 1:37 PM, stanpfister@... wrote:

> I've had about six good days in a row, that's a record for me. But

> now I'm starting to feel a flare coming and I'm not feeling very

> good. I'm back sliding! We'll see where it goes. I'm generally do

> the same thing as you, have a couple of good days, then go through

> an RA ordeal, and feel very depressed about it. Hang in there. I was

> gonna say it gets better, but sometimes it doesn't, but it does get

> the same! ( lol ). I'd check on the Aleve , I was told to stay away

> from that and Advil, because it's hard on the stomach and doesn't do

> well with a lot of our meds . They're talking about prednisone for

> me, I running out of room to put all this crap, now I have a bunch

> of stuff I don't take but I don't want to get rid of it right away

> either, I might be told to take it next month! Take care.

[Guest guest]

Sue if you already had a bleeding ulcer. Please be careful. I am banned from

using all the meds you listed.  I take gambetin which alleviates some pain but

does not affect my stomach. Please research it.

Raniolo

> I've had about six good days in a row, that's a record for me. But

> now I'm starting to feel a flare coming and I'm not feeling very

> good. I'm back sliding! We'll see where it goes. I'm generally do

> the same thing as you, have a couple of good days, then go through

> an RA ordeal, and feel very depressed about it. Hang in there. I was

> gonna say it gets better, but sometimes it doesn't, but it does get

> the same! ( lol ). I'd check on the Aleve , I was told to stay away

> from that and Advil, because it's hard on the stomach and doesn't do

> well with a lot of our meds . They're talking about prednisone for

> me, I running out of room to put all this crap, now I have a bunch

> of stuff I don't take but I don't want to get rid of it right away

> either, I might be told to take it next month! Take care.

[Guest guest]

I am careful, . The Bextra and Celebrex didn't bother my

stomach. I stay away from all of the NSAID's, though. I tried

salsalate, but it made my stomach hurt. It didn't even hurt when I had

the ulcer. I have spondylolisthesis and degeneration in my lumbar

spine, but I don't risk taking an NSAID for it.

Sue

On Jul 23, 2009, at 4:40 PM, CATHERINE RANIOLO wrote:

> Sue if you already had a bleeding ulcer. Please be careful. I am

> banned from using all the meds you listed. I take gambetin which

> alleviates some pain but does not affect my stomach. Please research

> it.

[Guest guest]

okd,

I have been on endrel 3 month tomarrow...I felt worst too in the biggening...It

took 6 weeks to notice a difference..My sedrate is now finally normal,which it

hasnt been normal in two years...I do have some aches but it is better

overall..The side effect is better tolerated than the other meds I had been

on...Keep hanging in there it does take a little time....

diane in ohio

[Guest guest]

(my girlfriend) went through the same experience, no one could figure out

what was going on, until I figured out she was taking Aleve for her migraines .

I've found Tylenol Arthritis to be quite effective as well for low to moderate

pain. It's better than taking the strong stuff when you're add that stage, and I

also use regular Tylenol when it's just one of those sore days. I try to use

theses things sparingly because we have to take so much other stuff.

Stan

Sent: Thursday, July 23, 2009 1:37:51 PM GMT -08:00 US/Canada Pacific

Subject: Re: [ ] Happy to have started Enbrel Finally

Stan, I got a bleeding ulcer from Aleve . Next I took Bextra until they  

took it off the market, then Celebrex until my insurance company made  

the co-pay $50 a month, and now I take arthritis-strength Tylenol.

Sue

On Jul 23, 2009, at 1:37 PM, stanpfister @comcast.net wrote:

> I've had about six good days in a row, that's a record for me. But  

> now I'm starting to feel a flare coming and I'm not feeling very  

> good. I'm back sliding! We'll see where it goes. I'm generally do  

> the same thing as you, have a couple of good days, then go through  

> an RA ordeal, and feel very depressed about it. Hang in there. I was  

> gonna say it gets better, but sometimes it doesn't, but it does get  

> the same! ( lol ). I'd check on the Aleve , I was told to stay away  

> from that and Advil, because it's hard on the stomach and doesn't do  

> well with a lot of our meds . They're talking about prednisone for  

> me, I running out of room to put all this crap, now I have a bunch  

> of stuff I don't take but I don't want to get rid of it right away  

> either, I might be told to take it next month! Take care.

[Guest guest]

OKD,

Sorry you have been feeling so bad. Has the prednisone helped yet? You

should be feeling some relief from that med. If your having joint

swelling, are you on any NSAIDS? You might talk to your doctor about

the swelling and the depression.

The depression is totally not good for you. Stress keeps the flaring,

and I know its hard to deal with. With all the meds I'm on, I don't

take any OTC meds, unless doctors orders. We do have to protect our

liver. I'm hoping the meds will kick in for you.

I'm sorry to hear the the enbrel damaged your aunt's heart. That is

really scary. You just never know what to do when you have a chronic

disease, and must take all these meds.

I hope you feel better soon, and don't forget to talk with your doc

about depression.

Tawny

--- In , " cofade_2000 " <Cofade_2000@...>

wrote:

>

> Hi Group:

>

> Been feeling very miserable lately. Never know how i am going to wake

up. Bad neck pain, back pain, ankle swelling, jaw hurting, despite being

upped on the MTX to 6 pills (2.5 each) every week.

>

> Took my first Enbrel shot on Friday, I dont feel anything yet (only

hope). Very depressed cause I feel so lousy, the pain doc upped my

fentantyl patches to 37.5 because they werent working. Actually 2 days

last week I took Aleve and then Tylenol c Codiene cause the aching pains

were so bad. Dont want to overtax my liver, so I stopped those. I broke

down and took 4 days of prednisone (20 to start and then 3 days of 10)

because i just couldnt take the swelling and pain. And my ankle is still

swollen.

>

> My Rheumy says I gotta stay on the Enbrel 3 mos before she can gage is

its working or not.

>

> Funny, after 15 yrs they just took my aunt off of Enbrel because it

exascerbated damage to her heart (and she had open heart surgery)....I

hope Enbrel doesnt mess with my heart (its the only one i have - L0L:))'

>

> I noticed that stress really makes RA bad too, so I am trying to Zen

myself....

>

> OKD

>

> So glad I can read all this info, it really helps to know I am not the

only one and that my burden is not as bad as others.

>

[Guest guest]

Hi OKD - I pray the Enbrel works for you! Its no fun being in pain all the time.

Check out: http://www.enbrel.com/support-services/get-started.jsp They have a

copay assistance program that will save you that $150 per month! Best of luck

to you.....Doreen

Hi Stan:

Yep. Not to mention the COSTS. Thank god for insurance, but the Enbrel costs

are scary. Even though mine pays 90% the 10% left over is $150.00 a month.

That doesnt include the MTX, Prednisone, other med I take, plus my son takes 3

as an asthmatic. ..anyways, the Enbrel folks agreed to pick up the costs of the

Enbrel for one year, so I PRAY it works for me.

Took it Friday, dont feel any diff so far, actually feel worse. I am not

flaring anymore (thanks to MTX) but I am still on the swelling and pain 'tip'.

By the way has anyone dropped the nightshades from their diet and seen a

difference (potatoes/tomatoes)? I love my mashed, cooking with tomatoe sauce

and my cherry tomatoes, but I will give em up in a heartbeat if it stops the RA.

OKD

[Guest guest]

Hi Diane - what side effects did you get with the Enbrel? I had been taking it

for about 7 weeks and ended up with an ear infection, so I'm off it for right

now. I don't know if I should start it back up or not. I'd be interested to hear

your (and anyone elses) experiences with it.....Doreen

okd,

I have been on endrel 3 month tomarrow...I felt worst too in the

biggening...It took 6 weeks to notice a difference..My sedrate is now finally

normal,which it hasnt been normal in two years...I do have some aches but it is

better overall..The side effect is better tolerated than the other meds I had

been on...Keep hanging in there it does take a little time....

diane in ohio

[Guest guest]

Doreen,

I dont know for sure but I get sinus Pain and pressure in my ear..I just take my

allergra for afew days..I get headaches for 1 to 2 days..My appetite is

decreased which I could use that..I still dont have much energy most of the

week..But it is really much tolerable than the other meds. Oh, I do get

diarrhea episode and/or stomach cramping the day after..I am still rather

pleased. besides your sinus infection have you noticed any other side effects?

diane in ohio