Re: Afraid of my drug-switch

[Guest guest]

,

You can talk anytime, we all want to help if we can.

I hate it that you are in so much pain and at such a low point. I

hope Enbrel is your miracle drug. It is good that you are still

trying to keep a sense of humor.

I rely so much on this group and never thought that I would. I

sought it out for information and now find myself involved.

Please let us know how it goes with the Enbrel and I will say a

special prayer for you tonight.

Shirley

--- In , " brendabennion " <bennion8@...>

wrote:

>

> I don't post much, though I read the posts and appreciate so many

of

> you.

>

> I have been on Mtx shots, hydroxychloriquin, and sulfasalazine. I

have

> just felt so sick and tired for the year I have been on them, and

my

> blood tests were not coming back completely normal. So my doctor

has

> had me stop the hydorxychloroquin and sufasalazine, and keep the

mtx

> shots once a week. I have had, off and on, a cough but no

shortness of

> breath or anything. He is adding Enbrel. I just got the Enbrel

> yesterday, I've had to stay off the other drugs and can take my

first

> shot tomorrow.

>

> I have felt scared, especially with the minor cough, but excited

as I

> have read the things some of you have said about getting a new

life

> with this drug! I don't want to feel sick and tired anymore.

>

> I haven't been able to walk up and down stairs, my hands are

always

> stiff and in pain... I can't really write anymore, and since I had

to

> quit the other 2 drugs for a week, I see my RA has actually

spread. It

> was in my knees, ankles, and hands. Now my hips and shoulders get

sore.

> And, can you get it in your spine? For a few days my spine hurt! I

am

> only 5' tall and I am overweight. It has crept up over the years

as I

> have given birth to 6 children. But since I have been so inactive

due

> to being sick this past year, I am now 60 pounds overweight. So I

have

> wondered, is that my problem or is it the drugs/disease? My doctor

> tells me it is the disease but I still just feel awful!

>

> So I was telling my adult daughter my fears about the Enbrel...

with

> the cough and the warnings the pharmacist gave me, will I get sick?

I

> finally joked, " I don't want to live this way, in fear. I am going

to

> take it and if it helps, hooray!! If it makes me sick or I die, so

be

> it! " She expressed much concern. I told her I was exaggerating,

the

> point is, I just want to move forward and enjoy life again..then

I

> joked... " And life is chocolate. " She smiled. Then I added, " With

each

> shot, if you take one chocolate it minimizes the side effects of

the

> drug " . She wondered if I were serious or pulling her leg,

especially

> when I suggested that the pharmacist should dispense a bag of

Hersheys

> kisses with each perscription fill! She caught on and we laughed!

>

> Basically, I just don't want to worry anymore. I just want to

LIVE!

> I'm tired of fighting this disease... I want to be normal again!

Or at

> least just LIVE again! I've been depressed, sick, not able to do

> anything for a total of 2-3 years. Half the time I have been

bedridden.

> When I am not, I am exhausted so easily. I want to throw it off,

forget

> about it, and move on. I'm used to being a mover and a shaker...

until

> the last few years. So I pin my hopes on the Enbrel.

>

> Thanks for letting me " talk " . This board is nice... I can't talk

to

> friends and family like you all do here... it isn't pleasant for

them

> to hear so I don't talk at all, really, except to say, " I need to

go

> lie down " or, we just went camping and I have been off my drugs,

so I

> couldn't hike up a mountain with them. I told them they had to

find an

> easier hike/walk for me. I did let them know I was hurting and my

legs

> and knees were to stiff to hike uphill. We rented a cabin that had

this

> really steep stairway up to the bedrooms.... I would laugh

everytime I

> had to climb them.... because I couldn't! I never thought to tell

the

> company we rented from that we needed a place that was single-

level! I

> don't want to say, " Well, I am disabled because I have RA " . I have

> never thought of myself as " disabled " before. I still don't. I

don't

> know what I see myself as.... just a 45 year old woman who is

> overweight and has some aches, I guess.

>

> Anyway, thanks again....

>

>

>

[Guest guest]

Hi I don't post much either, but I wanted to let you know I started

enbrel 2 weeks ago after several weeks of mtx inj without as much

improvement as I wanted. So I still take the mtx. The enbrel says a

few people see results in 2 weeks most in 3mo. I took the shot on Mon.

and tues morning at 10am I could make a fist with my right hand. I

havent done that in almost a year. I'm not saying I don't still get

stiff but I consider enbrel a miracle and I hope it stays that way.

For me everyday is different some days my fingers don't bend until

noon, but they do it and they don't hurt. My feet have felt better

since the mtx but I think the enbrel has helped my hips. I think the

enbrel shots hurt just a warning, but not enough to stop taking them.

Hope enbrel is your miracle as well.

Diane

[Guest guest]

Diane (and all),

Thank you for sharing your experience with Enbrel, I needed to hear

that! It sounds like you had immediate results! What you said about

your hands really struck home, but wow! I sounds like the RA has really

made your hands suffer! My hands are always stiff, even with the drugs

I have been on, but I can still make a fist. I think I am losing the

use of my thumbs, though. My mother had RA, too, as her sister did. My

mother used to love to wash the dishes just to soak her hands. She

would run the water as hot as she could and just soak them. Now that I

have this, I understand how good that felt! I do the same thing... sit

there with my hands under the hot running water.... aaaaa! Have you

ever done that? It feels so good! In the past sometimes I can't scrub

the dishes.... I have an adorable teenage son, though, who has run to

the rescue before saying, " I got it, mom! " while jumping up and running

to the rescue!

I am so glad this has been a blessing for you.... and it gives me

hope! My biggest challenge has been walking, though I am sure others

have it so much worse. I have to lean against a wall to walk up and

down the stairs in my house. But boy, I read what others on here have

been through... I don't know how all of you have done it. You have all

suffered so long, and are going through so much. I stand in awe of

everyones strength and sense of humor... wow!

I still will have to take the mtx shots, too. It has never bothered

me to take them, I never feel them. Thanks for the warning about the

Enbrel shots. Guess I will find out today how much they hurt.

Thank you again for taking the time to post...you were kind and

generous to take the time to share your wisdom. I pray you have a good

day!

>

> Hi I don't post much either, but I wanted to let you know I started

> enbrel 2 weeks ago after several weeks of mtx inj without as much

> improvement as I wanted. So I still take the mtx. The enbrel says a

> few people see results in 2 weeks most in 3mo. I took the shot on

Mon.

> and tues morning at 10am I could make a fist with my right hand. I

> havent done that in almost a year. I'm not saying I don't still get

> stiff but I consider enbrel a miracle and I hope it stays that way.

> For me everyday is different some days my fingers don't bend until

> noon, but they do it and they don't hurt. My feet have felt better

> since the mtx but I think the enbrel has helped my hips. I think the

> enbrel shots hurt just a warning, but not enough to stop taking

them.

> Hope enbrel is your miracle as well.

> Diane

>

[Guest guest]

Shirley,

Thank you so much for the kind words, and for offering to pray. I

am a firm believer in prayer! There have been days that I have felt

so horrible that it was all I could resort to. I have come into my

room, wanting to be able to do for my family but unable to cope, and

lay down and prayed for an hour or more. He has never failed me. But

I am blessed.... though this has occasionally gotten me down, and the

realization that this is a life-long battle, I don't have things so

bad! I have an incredible husband, and 5 living children that are the

joy of my life. And they are doing well. We have our struggles, life

isn't perfect.... but it is good.

I am amazed at all those on this board have been through, the

wisdom all of you have is amazing. I am so greatful for this support

group!

I pray you have a good day,

> >

> > I don't post much, though I read the posts and appreciate so many

> of

> > you.

> >

> > I have been on Mtx shots, hydroxychloriquin, and sulfasalazine. I

> have

> > just felt so sick and tired for the year I have been on them, and

> my

> > blood tests were not coming back completely normal. So my doctor

> has

> > had me stop the hydorxychloroquin and sufasalazine, and keep the

> mtx

> > shots once a week. I have had, off and on, a cough but no

> shortness of

> > breath or anything. He is adding Enbrel. I just got the Enbrel

> > yesterday, I've had to stay off the other drugs and can take my

> first

> > shot tomorrow.

> >

> > I have felt scared, especially with the minor cough, but excited

> as I

> > have read the things some of you have said about getting a new

> life

> > with this drug! I don't want to feel sick and tired anymore.

> >

> > I haven't been able to walk up and down stairs, my hands are

> always

> > stiff and in pain... I can't really write anymore, and since I

had

> to

> > quit the other 2 drugs for a week, I see my RA has actually

> spread. It

> > was in my knees, ankles, and hands. Now my hips and shoulders get

> sore.

> > And, can you get it in your spine? For a few days my spine hurt!

I

> am

> > only 5' tall and I am overweight. It has crept up over the years

> as I

> > have given birth to 6 children. But since I have been so inactive

> due

> > to being sick this past year, I am now 60 pounds overweight. So I

> have

> > wondered, is that my problem or is it the drugs/disease? My

doctor

> > tells me it is the disease but I still just feel awful!

> >

> > So I was telling my adult daughter my fears about the Enbrel...

> with

> > the cough and the warnings the pharmacist gave me, will I get

sick?

> I

> > finally joked, " I don't want to live this way, in fear. I am

going

> to

> > take it and if it helps, hooray!! If it makes me sick or I die,

so

> be

> > it! " She expressed much concern. I told her I was exaggerating,

> the

> > point is, I just want to move forward and enjoy life again..then

> I

> > joked... " And life is chocolate. " She smiled. Then I

added, " With

> each

> > shot, if you take one chocolate it minimizes the side effects of

> the

> > drug " . She wondered if I were serious or pulling her leg,

> especially

> > when I suggested that the pharmacist should dispense a bag of

> Hersheys

> > kisses with each perscription fill! She caught on and we laughed!

> >

> > Basically, I just don't want to worry anymore. I just want to

> LIVE!

> > I'm tired of fighting this disease... I want to be normal again!

> Or at

> > least just LIVE again! I've been depressed, sick, not able to do

> > anything for a total of 2-3 years. Half the time I have been

> bedridden.

> > When I am not, I am exhausted so easily. I want to throw it off,

> forget

> > about it, and move on. I'm used to being a mover and a shaker...

> until

> > the last few years. So I pin my hopes on the Enbrel.

> >

> > Thanks for letting me " talk " . This board is nice... I can't talk

> to

> > friends and family like you all do here... it isn't pleasant for

> them

> > to hear so I don't talk at all, really, except to say, " I need to

> go

> > lie down " or, we just went camping and I have been off my drugs,

> so I

> > couldn't hike up a mountain with them. I told them they had to

> find an

> > easier hike/walk for me. I did let them know I was hurting and my

> legs

> > and knees were to stiff to hike uphill. We rented a cabin that

had

> this

> > really steep stairway up to the bedrooms.... I would laugh

> everytime I

> > had to climb them.... because I couldn't! I never thought to tell

> the

> > company we rented from that we needed a place that was single-

> level! I

> > don't want to say, " Well, I am disabled because I have RA " . I

have

> > never thought of myself as " disabled " before. I still don't. I

> don't

> > know what I see myself as.... just a 45 year old woman who is

> > overweight and has some aches, I guess.

> >

> > Anyway, thanks again....

> >

> >

> >

>

[Guest guest]

Good Luck today!!!

-- In , " brendabennion " <bennion8@...>

wrote:

>

> Diane (and all),

> Thank you for sharing your experience with Enbrel, I needed to

hear

> that! It sounds like you had immediate results! What you said about

> your hands really struck home, but wow! I sounds like the RA has

really

> made your hands suffer! My hands are always stiff, even with the

drugs

> I have been on, but I can still make a fist. I think I am losing

the

> use of my thumbs, though. My mother had RA, too, as her sister did.

My

> mother used to love to wash the dishes just to soak her hands. She

> would run the water as hot as she could and just soak them. Now

that I

> have this, I understand how good that felt! I do the same thing...

sit

> there with my hands under the hot running water.... aaaaa! Have you

> ever done that? It feels so good! In the past sometimes I can't

scrub

> the dishes.... I have an adorable teenage son, though, who has run

to

> the rescue before saying, " I got it, mom! " while jumping up and

running

> to the rescue!

> I am so glad this has been a blessing for you.... and it gives

me

> hope! My biggest challenge has been walking, though I am sure

others

> have it so much worse. I have to lean against a wall to walk up and

> down the stairs in my house. But boy, I read what others on here

have

> been through... I don't know how all of you have done it. You have

all

> suffered so long, and are going through so much. I stand in awe of

> everyones strength and sense of humor... wow!

> I still will have to take the mtx shots, too. It has never

bothered

> me to take them, I never feel them. Thanks for the warning about

the

> Enbrel shots. Guess I will find out today how much they hurt.

> Thank you again for taking the time to post...you were kind and

> generous to take the time to share your wisdom. I pray you have a

good

> day!

>

>

>

>

>

> >

> > Hi I don't post much either, but I wanted to let you know I

started

> > enbrel 2 weeks ago after several weeks of mtx inj without as much

> > improvement as I wanted. So I still take the mtx. The enbrel

says a

> > few people see results in 2 weeks most in 3mo. I took the shot

on

> Mon.

> > and tues morning at 10am I could make a fist with my right hand.

I

> > havent done that in almost a year. I'm not saying I don't still

get

> > stiff but I consider enbrel a miracle and I hope it stays that

way.

> > For me everyday is different some days my fingers don't bend

until

> > noon, but they do it and they don't hurt. My feet have felt

better

> > since the mtx but I think the enbrel has helped my hips. I think

the

> > enbrel shots hurt just a warning, but not enough to stop taking

> them.

> > Hope enbrel is your miracle as well.

> > Diane

> >

>

[Guest guest]

,

I am so glad you are getting to start your new medication. I don't

know if others are like me but each time I have greater hopes than

the last one. I know we will hit on the right one for me.

I am trying to get everything in order so that I can start Enbrel

next week. I had my third mammogram this year, yesterday. Now they

want an untrasound. The earliest they could do it is Wednesday at

1pm. That should still give me time to get my first shot by Friday.

My rheummy won't let me start until she knows that it isn't cancer.

I am not the least worried, I know that it will be OK. I am just

tired of all the mashing and pinching!

Please, let us know how you do with your first shot. I want it NOT

to be a bad experience for you and would like to know what it was

like.

Good Luck,

Shirley

> -- In , " brendabennion " <bennion8@>

> wrote:

> >

> > Diane (and all),

> > Thank you for sharing your experience with Enbrel, I needed to

> hear

> > that! It sounds like you had immediate results! What you said

about

> > your hands really struck home, but wow! I sounds like the RA has

> really

> > made your hands suffer! My hands are always stiff, even with the

> drugs

> > I have been on, but I can still make a fist. I think I am losing

> the

> > use of my thumbs, though. My mother had RA, too, as her sister

did.

> My

> > mother used to love to wash the dishes just to soak her hands.

She

> > would run the water as hot as she could and just soak them. Now

> that I

> > have this, I understand how good that felt! I do the same

thing...

> sit

> > there with my hands under the hot running water.... aaaaa! Have

you

> > ever done that? It feels so good! In the past sometimes I can't

> scrub

> > the dishes.... I have an adorable teenage son, though, who has

run

> to

> > the rescue before saying, " I got it, mom! " while jumping up and

> running

> > to the rescue!

> > I am so glad this has been a blessing for you.... and it

gives

> me

> > hope! My biggest challenge has been walking, though I am sure

> others

> > have it so much worse. I have to lean against a wall to walk up

and

> > down the stairs in my house. But boy, I read what others on here

> have

> > been through... I don't know how all of you have done it. You

have

> all

> > suffered so long, and are going through so much. I stand in awe

of

> > everyones strength and sense of humor... wow!

> > I still will have to take the mtx shots, too. It has never

> bothered

> > me to take them, I never feel them. Thanks for the warning about

> the

> > Enbrel shots. Guess I will find out today how much they hurt.

> > Thank you again for taking the time to post...you were kind

and

> > generous to take the time to share your wisdom. I pray you have

a

> good

> > day!

> >

[Guest guest]

Hi and group,

I so relate to your story about how the meds make you feel,however,if

you don't take the meds then the lovely RA and FMS rear their even

uglier head.I also get so tired of explaining to family members why I

need to lay down,or why I can't do the shopping thing or outing for the

day.If you look at me you would not see anything wrong.I limp when I

walk but I feel like people are looking at me like " whats wrong with

her,she doesnt look sick " .I take methetrexate and sulfasalazine.I have

been the Plaquenil and Arava route without success.I have an insurance

company that will not pay for biologics and my doc originally wanted to

try Enbrel and then Orencia but I cant afford them without help from

the insurance company.I remember when my rheumy started me on the

sulfasalazine and the pharmacist told me how toxic it was with the

methetrexate and I delayed starting because I was so scared.My rheumy

told me RA was toxic and as much as I hate it evertime I take the

meds,I know I have to try to get control of my life again.Thank you all

for being there for me.

[Guest guest]

I started Enbrel a week ago yesterday, and this was the first week

since March that I did not have a single flare. I'm chalking it up to

coincidence as I've heard it takes two weeks for some people to feel

the effects.

I am also on Mtx, plaquenil, folic acid, and 10 mg of prednisone. I've

been trying to wean off of prednisone for months now, but as soon as I

dip below 15 mg I start flaring big time. The doctor wants me to stay

at 10 mg for another few weeks and then start weaning off. That will

be the big test for Enbrel.

I've got my fingers crossed.

[Guest guest]

--- In , " ksanders58 " <ksanders58@...>

wrote:

and Group;

I know what you mean. I look fine. Yet the pain is aweful. I am

feeling pretty good tonight. The prednisone is great. All the

prayers are in and God must of said its enough. I said not more than

you can bear Clora. I start humira in a few weeks. I can't stay on

prednisone very long according to my rheumy cause of my other

illnesses.

Some of my family thinks I became very lazy haaaaaa. I don't worry

about what they think. My mom and husband knows how I feel and

thats ok for me. For many years I was in pain and they were the

only ones to believe me. I always seem to find away with this pain.

I am on sulfasalazine, plaquenil and prednisone. Right now the

prednisone is working. I have pain patchs too. I take a lot of

other meds for other illneses. Yet I only look over weight lol. I

park in the handicaap parking. People look at me shaking their

heads at me. I know what I know. lol.

I tried other meds that broke me out. I hope the humira works. I am

praying. God Bless everyone.

gentle hugs to everyone

Clora

[Guest guest]

Clora and Group,

I get the same nods when I park in the handicap spot and some family

members think I am so much better because of the weight gain.They

think extra weight means health.My husband is my rock.He knows the

DAILY crap I endure.Thanks for your input.Hope everyone is having a

good evening.

>

>

> and Group;

>

> I know what you mean. I look fine. Yet the pain is aweful. I am

> feeling pretty good tonight. The prednisone is great. All the

> prayers are in and God must of said its enough. I said not more

than

> you can bear Clora. I start humira in a few weeks. I can't stay on

> prednisone very long according to my rheumy cause of my other

> illnesses.

>

> Some of my family thinks I became very lazy haaaaaa. I don't worry

> about what they think. My mom and husband knows how I feel and

> thats ok for me. For many years I was in pain and they were the

> only ones to believe me. I always seem to find away with this pain.

>

> I am on sulfasalazine, plaquenil and prednisone. Right now the

> prednisone is working. I have pain patchs too. I take a lot of

> other meds for other illneses. Yet I only look over weight lol. I

> park in the handicaap parking. People look at me shaking their

> heads at me. I know what I know. lol.

>

> I tried other meds that broke me out. I hope the humira works. I

am

> praying. God Bless everyone.

>

> gentle hugs to everyone

> Clora

>

[Guest guest]

Wow..do I get nasty looks when I park in handicapped!! My problem is that I

need to be able to open my door completely in order to swing my right leg

out (neuropathy) so if I can get a regular spot at the end of a row, I'll

take that. But if I can't, I will use the handicapped spots.

If I do say so myself (HA HA), I look pretty good and look younger than my

true mid 50's so people right away assume there's nothing wrong with me.

I will actually limp walking to and from the parking spot even if my leg

feels well that day in order to let people know that YES, I do have a

handicap.

Once when I went to the library, I forgot to put the blue hanging placard on

the mirror. When I came out, I found a note under my windshield wiper. I

didn't read the whole thing, but it started out.. " You uncaring piece of

sh*t...who the f*** do you think you are.....at that point, I crumpled up

the note and tossed it in a nearby trashcan. I got in the car and placed

the blue placard on the mirror in the hopes that whoever left the note was

nearby. I should have taken it into the library and demanded that they

review the outside security cameras to determine who did it.

Dorothy

_____

From: [mailto: ] On

Behalf Of ksanders58

Sent: Sunday, August 10, 2008 8:48 PM

Subject: [ ] Re: Afraid of my drug-switch

Clora and Group,

I get the same nods when I park in the handicap spot and some family

members think I am so much better because of the weight gain.They

think extra weight means health.My husband is my rock.He knows the

DAILY crap I endure.Thanks for your input.Hope everyone is having a

good evening.

>