Re: enbrel and me

[Guest guest]

Diane - thanks for the input. My PC at first recommended an allergy med for the

ear ringing, but it didn't help. I've always had the ringing off and on, but it

had gotten worse since the Enbrel and now the sinus infection. I had only had 7

weekly injections before the sinus infection kicked in and aside from that, I

was just not feeling good. You know how that goes when you just don't feel good,

but you don't know why? Kind of an all over malaise. I got scared - I guess

because of the potency of Enbrel and other biologics - and was afraid of...I

don't know...just afraid of everything.

Maybe I'm expecting too much too soon. I guess I was expecting to feel better

quickly. I had non-RA friends who kept asking " Are you feeling any better? " .

Maybe that just messed with my head - and put me into their line of thinking

instead of remembering this could just take time. Then I read where there are

studies done and reports that people felt 20% better with the Enbrel/MTX combos

and I got to thinking is it worth taking such a potent med for only 20%

improvement?

I'm sorry to rant here. I've got so much on my mind. I don't know what to do

anymore. Everything feels like its falling apart. I have a non-RA related hernia

that now has a knot in it - so I'm really feeling overwhelmed and frustrated

right now. Thank you so much for your input. I welcome any and all thoughts and

feelings on all of this. Maybe I've just reached my breaking point.

I don't know.....Doreen

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

[Guest guest]

Hi Doreen: I can see you are overwhelmed with being sick again, and

doubting your decision to start Enbrel.

I know you want it to work quickly, so you can get relief from all the

pain and suffering you have been having. I wish these meds. didn't take

so long to work. Unfortunately, they do.

We all know your struggle each day, and we are praying for things to get

better for you. I hope when your infection is over, that you continue

on your Enbrel. It might turn out to be your " perfect cocktail " , and

work wonderful for you.

I know you have had it, and sick of all this sickness and pain from RA.

We do walk in your shoes Doreen. We are all hoping and praying that you

will feel better soon. I hope you can find some spot in yourself, and

try to think positive, that hopefully, this drug will work for you. All

we have is hope. That is what we have to hang on to. I care so very

much about you, and do know what your daily struggle is. So do so many

of us here.

Please try to relax, rest often, and in general, just take good care of

yourself until you feel better. And you will feel better soon.

May God Bless you, and help you through your daily struggles and pain.

You are such a nice person Doreen. We all care about you.

Hugs,

Barbara

>

> Diane - thanks for the input. My PC at first recommended an allergy

med for the ear ringing, but it didn't help. I've always had the ringing

off and on, but it had gotten worse since the Enbrel and now the sinus

infection. I had only had 7 weekly injections before the sinus infection

kicked in and aside from that, I was just not feeling good. You know how

that goes when you just don't feel good, but you don't know why? Kind of

an all over malaise. I got scared - I guess because of the potency of

Enbrel and other biologics - and was afraid of...I don't know...just

afraid of everything.

>

> Maybe I'm expecting too much too soon. I guess I was expecting to feel

better quickly. I had non-RA friends who kept asking " Are you feeling

any better? " . Maybe that just messed with my head - and put me into

their line of thinking instead of remembering this could just take time.

Then I read where there are studies done and reports that people felt

20% better with the Enbrel/MTX combos and I got to thinking is it worth

taking such a potent med for only 20% improvement?

>

> I'm sorry to rant here. I've got so much on my mind. I don't know what

to do anymore. Everything feels like its falling apart. I have a non-RA

related hernia that now has a knot in it - so I'm really feeling

overwhelmed and frustrated right now. Thank you so much for your input.

I welcome any and all thoughts and feelings on all of this. Maybe I've

just reached my breaking point.

>

> I don't know.....Doreen

>

>

> --- In , " diane crawford " nuttynurse25@

wrote:

>

> 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

>

[Guest guest]

Hi doreen,

You just have to hang in there..It gets very frustrating..I have been gettting

treatment for over one year now and when something start to work,I get horrible

side effects.It is so hard to be patient when you dont feel well.Trying to

adjust to the limitation of this disease.I am learning to get more rest and

knowing what my limits.I am sorry to hear that your hernia is giving you

problems..Even stress can make you feel worst, I am finding that out..Hang in

there and of coarse we are here for you..If you want you can email me..

diane in ohio

[Guest guest]

Thanks, - I wish you all the best on Enbrel. I'm on hold until I finish

my antibiotics. This will give me more time to think.....Doreen

Doreen

 

Just read your post, feel the same as you, same problems w/enbrel and all.

Please hang in here, sometimes, a little change in meds can work, on 10mg

prednisone now, just to keep me going until I think clearly.....

 

in CA

[Guest guest]

Thanks, Diane - I love your optimism. I was like that at first as well. The

frustrating thing for me is that I'm 3+ years into this and still not in

remission. Part of the problem is that I don't have health insurance, so I am

limited financially. The other problem is my Rheumatologist. I am going to call

this other Rheumy tomorrow and see if he can help me any better.

I got my last bloodwork results in the mail yesterday and was furious that my

present Rheumy didn't address the fact that my RBC is low, RDW is high (both for

the 2nd test in a row) and the Neutrophil percentage is low - that is new this

time around. I hadn't had my blood checked since April, but it concerns me that

for the past three months it *appears* things have been out of whack with my

bloodwork and my Rheumy hasn't even acknowledged it.

Oh well - sorry to vent *again*. I am going to fax the results over to my PC in

the morning as well as contact the other Rheumy and see when/if I can afford to

see him. I appreciate all of your support and optimism. Sometimes we all can get

so caught up in this that we can't see the forest for the trees.....Doreen

Hi Doreen,

You just have to hang in there..It gets very frustrating..I have been getting

treatment for over one year now and when something start to work,I get horrible

side effects.It is so hard to be patient when you don't feel well.Trying to

adjust to the limitation of this disease.I am learning to get more rest and

knowing what my limits.I am sorry to hear that your hernia is giving you

problems..Even stress can make you feel worst, I am finding that out..Hang in

there and of coarse we are here for you..If you want you can email me..

Diane in Ohio