Re: Thinking of starting TNF

[Guest guest]

Hi Janie - I've been on Enbrel for almost a year along with MTX and SSZ. While I

would not call my RA in " remission " , I do feel things are better in some ways

and untouched in others. I am going to see a pain mgmt doctor this morning and

am praying he can help to get this pain under control..... Doreen

I have had RA for 7 years. Currently on Minocin, Plaquenil and Sulfasalazine.

It is not working anymore and I am in terrible pain. I need to know who is on a

TNF drug and what do you think about it and how long you been on it.

Thanks

Janie

[Guest guest]

Hi! I'm sorry you are feeling so bad! I have been on Enbrel since 2001, except

for the shortage in 2003. During that time they tried me on humira and kineret.

I didn't respond to either. Enbrel has been great for me! Just keep in mind

that we are all different and respond to different drugs and in different ways.

What works for me, might not work for anyone else. Good luck!

Autumn in IN

>

> I have had RA for 7 years. Currently on Minocin, Plaquenil and Sulfasalazine.

It is not working anymore and I am in terrible pain. I need to know who is on a

TNF drug and what do you think about it and how long you been on it.

>

> Thanks

>

> Janie

>

[Guest guest]

Hi Janie:

     I was so sorry to read that you are in terrible pain, and your meds.

aren't working for you anymore.

    I have had RA for almost 6 years now.  I take Sulfasalazine, Placquenil,

Prednisone daily, and a MTX injection 1 x a week.  I also take 2 Leucovorin

pills 12 hours after  my MTX injection.  I also take Calcium/Vit. D. daily. 

I have been on these RA meds. since day one.

    For a 1 1/2 years I have been in a medicine induced remission.  I

suffered daily with terrible RA pain in my feet, ankles, hands, wrists, and

fingers.  My feet and ankles were hit the worst.

    I know from everyone here, each person has to find the right " cocktail "

of RA meds. that work for them.  I am very grateful that mine are working so

well so far.  How long this remission lasts I

do not know.

    I have a wonderful Rheumy who has treated my RA agressively since day

one.  I also have blood work done every 2 months, so she keeps a close eye on

me.  I just love her.

    I hope my information helps, and I wish you better, pain free days

ahead.  Perhaps you need to call your Rheumy and tell him/her what you are

going through each day.  I know when I have called my Rheumy, she either comes

right to the phone then, or calls me back within a few hours.  She is a very

caring, loving Dr.  I am blessed to have her.

    Please try and rest as much as you can.  I do hope you get some pain

meds. to ease your pain and suffering.

 

Hugs,

 

Barbara

From: mjwfriend <janielamoore@...>

Subject: [ ] Thinking of starting TNF

Date: Tuesday, February 23, 2010, 9:57 PM

 

I have had RA for 7 years. Currently on Minocin, Plaquenil and Sulfasalazine. It

is not working anymore and I am in terrible pain. I need to know who is on a TNF

drug and what do you think about it and how long you been on it.

Thanks

Janie

[Guest guest]

Hi Janie,

Orencia worked the best for me, but is very costly. It is administered monthly

through an IV. It is rather new and long term effects are unknown. I had to

stop it after a year because the co-payment was way too much. (Just paid it off

after 3 years). My doc says it can't be, but I swear it's still working.

Good luck,

Joanne

[Guest guest]

Janie, I have been on Enbrel for almost 8 years, with very good

results. It works so well for me that I am currently injecting it once

instead of twice a week, still with wonderful results. I can hardly

tell that I have RA, and I don't have flares. I realize that I am

lucky that it works so well.

Sue

On Feb 23, 2010, at 9:57 PM, mjwfriend wrote:

> I have had RA for 7 years. Currently on Minocin, Plaquenil and

> Sulfasalazine. It is not working anymore and I am in terrible

> pain. I need to know who is on a TNF drug and what do you think

> about it and how long you been on it.

>

[Guest guest]

Janie, I have been on remicade since December of 2006. I went off of it in 2008

because my insurance made me switch docs, and she thought I did not have RA.

That time was hell.

Remicade has literally given me my life back. I did not realize the amount of

pain, weakness, and fatigue I had lived under every day for 14 years, until it

was gone.

Some take MTX with Remicade, I do not, as it is a heavy end teratogen. Remicade

is now in category b for pregnancy, and after the insurance mess was fixed I was

on it for the end of my pregnancy (I flared in early pg, unlike the remission I

had for the first two kids :-)

side effects- I do have to be careful about cuts and blisters, as I have gotten

a staph infection a couple of times. The day of infusion (once every 8 weeks) I

feel quite cold, and tired- mild/moderate headache. I found that if I take the

rest of the day off and rest, I recover quite quickly.

Take care and good luck,

Di

>

> I have had RA for 7 years. Currently on Minocin, Plaquenil and Sulfasalazine.

It is not working anymore and I am in terrible pain. I need to know who is on a

TNF drug and what do you think about it and how long you been on it.

>

> Thanks

>

> Janie

>