Re: A Tired Rant and a Remicade Question

[Guest guest]

I am not one you want to here from but to bad get over it LOL. any way when I

was getting it they gave me Benadril first and most of the time I slept right

threw the treatment. It seamed to help a little bit and for a few treatments but

then I had a reaction to it and got a nice little stay in the resort. problem

was my blood pressure went crazy and I do mean crazy screaming high and then

with every thing they were giving me to get it down it did just that only a bit

to fast and far to low so then now they fought to get it back up and we went a

round like that for a few days. I will tell you if I did not have rubber veins

no telling what would have happened. now at the same time there were some other

people getting the same treatments and they did really good on it .(They did not

have stills) . at that time the treatments were also only done in the hospital

in the chemo and dialis ward. this also was like 6 or so months after FDA

approval. 

My Ra doctor now has a few that use it and many time when I go in there sitting

around talking as they get there treatments and they seam to do just fine and

there done as they sit in the waiting room . so things have changed a lot and

more is now known then when I was one it . my best advice to you would be the

same for any of them be it MTX  the ones you have already tried or now this one

.. listion to your body as you know it better then any one and do not be silly

and think its just this or that if you feel it then ask as better to know then

find out like I did . by the way for the time i was on it I never got that great

of relief from it and that should have been my first clue but then I was new to

all of this and did not even know about this sight yet . now days I just use

MTX, pills to make my mussels like rubber and tapomax with some heavy pain pills

for break threw nothing other and I am trying to keep it that way but I am

losing that battle now

days .

so good luck and I hope it is the one that helps you. just do not expect to much

and that way if you do get it it makes it that much better

hugs

 

the redneck

Marty G.

To learn about Stills Disease http://www.stillsdisease.org/stills_info

Experience: that most brutal of teachers. But you learn, my God do you learn.---

C.S.

[Guest guest]

) Hi Marty. Thanks for the response. I guess I'm expecting the same type of

thing, so your advice is spot on with the " don't expect too much. " I'd just

like to avoid the resort altogether.

I'm so sorry to hear you're slipping back into the fight after remission. I

know the feeling. It's a low place to be, but you're surrounded by good people

here and at home. I'll keep you in my thoughts and hope that they find

something that works for you.

Warmest regards,