Re: Saw my Rheumy today

[Guest guest]

I'm with you girl!!

Cami

--- In , " marina_troi " <marina_troi@y...>

wrote:

>

> Well, when he looked over the results of my biopsy, he was really

> surprised!! Leukocytistic Vasculitis. Well, he thought that I

should

> stop the Enbrel for a few weeks. I asked him what I am supposed

to do

> when the RA flares up like there's no tomorrow and he said we

could

> just treat it with high doses of steroids. I decided to hold off

on

> the Enbrel and he gave me a script for the prednisone to help me

if I

> DO flare. I think I wanna take that road trip first, then stop

the

> Enbrel!! LOL <<<sigh>>> He has talked about mixing up my meds.

> Stopping everything and started all over. I told him to back up

the

> drug wagon for a moment. This treatment is working to a some

degree,

> this is just a little set back. So, I go see him again in 2

weeks. At

> least SOMEone is helping me with this vasculitis.

>

> Ahh, screw it, come on gang, let's take that road

trip!!......Marina

>

[Guest guest]

Nina,

I am so happy you had a good report at the doctors! Bless you for passing on

your unused meds for those that need them!!!

Rose

Nina <ncampbell@...> wrote: He

examined me from head to foot. I told him how much better I had felt

for the past two weeks. Had some pains on Sunday, but he said that was

probably due to the huge amounts of rain we've had for weeks. He said

he had never seen my joints in such good shape and was thrilled the

Orencia was working because he was at his wits end trying to figure out

what we could try next. My SED rate dropped from 55 (and had not been

below 55 since 1998) on the fourth infusion to 27 on the fifth infusion

and to 22 on the sixth infusion. Today was my 7th. He said it's one of

those drugs that you never know when to stop trying it because it takes

everyone a different amount of time to react. But at $5000 an infusion,

you hate to just keep trying and trying. We were both thrilled at how

much good it had done me.

Since I also have OA, he had wanted me to take Osteo Bi-flex, but when I

showed him the back of the bottle where it says not to take if you have

a chronic liver problem (my autoimmune PBC) and to talk to your doctor

if you have cirrhosis at all, I asked if I should take it. Did he want

me to take it and then check my liver levels next month? He said no, he

wanted to research the liver part of their warning first. Said he would

call me and let me know when he had the research done.

The only other person today in there with me today was getting Orencia

(usually everyone but me is getting Remicade). She has had the same

success with Orencia that I am now seeing.

I had two boxes of Humira left from when I was on it (which only cost me

$75 per box with insurance) and would cost someone without insurance

$1257.00 a box. I gave him both boxes for someone that needed it and

couldn't afford it. He was thrilled. I figured there was no sense in

it sitting in my fridge if I wasn't going to use it. I only kept it

this long to make sure the Orencia was going to work and I wouldn't have

to go back on the Humira.

It was good to get good news at the doctor's office for a change.

Monday I have to have laser surgery on my left eye that I had cataract

surgery on last August. Apparently that's not unusual. Anyone on here

have cataract surgery and then later have to have the laser surgery?

Nina

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[Guest guest]

Nina,

Good news Orencia is working for you! It's expensive, wow!! It's so

sad that RA meds are so costly. You take care, and I pray it works

for a long time for you, Tawny