Rituxan Treatment Stopped Steriod Specialist went nuts at me

[Cekmsover]

Hi Guys, I had my second infusion of Rituxan today after the first one two weeks ago. I Stopped taking Pred. I dont like, although it reduces your inflammation, sends me loopy and Just makes me feel crap. Brutal long term. I though the Idea of taking Rituxan was to get off Pred? Specialist told me I have to take the cortisol for the next 6 months so i Don't make antibodies to the Rituxan which can cause big problems. Has anyone heard this? I am only doing these treatmentscso I can get off Pred, as like wegs symptoms it also runs down the body real fast. So how question is have people tapered Pred after being on the Rituxan and how quickly did they do it? Cekmsover.

[Alysia]

Hi,
be careful. rtx takes 2-3 month untill it start working. you must be on steroids when you get the IV, to prevent allergic reaction. it takes a lot of time reduce pred, and NOT AT ONCE ! sometimes you can never stop it. I think it is better to listen to your doc.

[annekat]

Listen to Alysia and your doc. You will be able to start reducing the pred at some point, but we all need high doses at the beginning, and pred is an essential part of our treatment along with whatever immunosuppressants we are taking. They work together. The point of RTX is not to get you off pred but to get your immune system under control and stop the progress of Wegener's and the extreme damage it does to your body. It takes time. I know pred is very problematic for some people in the way it makes them feel, but not taking it will make things even worse.

[Wegetarian]

I guess its possible to actually die from stopping taking preds suddenly. But yeah, the effects could be pretty bad so definitely talk with your doc before you alter your dosage.

Here is a snippet from the first article I found

"Abruptly stopping hydrocortisone in these individuals can cause symptoms of corticosteroid insufficiency, with accompanying nausea, vomiting, and even shock."
http://www.medicinenet.com/hydrocortisone_oral/page2.htm

[Cekmsover]

Listen to Alysia and your doc. You will be able to start reducing the pred at some point, but we all need high doses at the beginning, and pred is an essential part of our treatment along with whatever immunosuppressants we are taking. They work together. The point of RTX is not to get you off pred but to get your immune system under control and stop the progress of Wegener's and the extreme damage it does to your body. It takes time. I know pred is very problematic for some people in the way it makes them feel, but not taking it will make things even worse.

i was not getting any of these symptoms and was told by many
To get off the cortisol. I like they way doctors feel you up
with these drugs and brain wash people to thinking a life does not exist without them
more there drugs. It's absolute bullshit. There are people who acheieve
a drug free remission after treatment, some reside on this forum.

[Dirty Don]

after treatment

And therein lies the contradiction in your statement...hmmm, do I want to be brainwashed dead or alive...like I have a choice...c'mon people...quit denigrating the use of these drugs...you're scaring someone somewhere just as you were scared the first time you encountered WG...and the ONLY reason you're here now is because someone had the education, awareness, and sense enough to get us on the right drugs right away...remission? Yeah, love it, have heard it, it's not possible until docs/researchers find the roots of the disease...in the meantime everyone is guessing...some better than others, some with better results than others...but do not bad mouth that which one doesn't understand nor accepts...rant for the day over...thanks CKSMOVER...I needed a thought or 2 today!! LOL!

[pberggren1]

RTX actually starts working right away.

[Wegetarian]

..remission? Yeah, love it, have heard it, it's not possible until docs/researchers find the roots of the disease...in the meantime everyone is guessing...some better than others, some with better results than others...but do not bad mouth that which one doesn't understand nor accepts...rant for the day over...

What do you mean? Isn't it common practise to try to wean of people from the drugs once the disease is under control. Of course a lot of people flare up again at some point, but certainly life without meds should be a possibility at some time for most of the Wegs? I do hear a lot of people have trouble getting of cortison completely, as the body might not produce cortison naturally after taking it orally for a long time.

[Cekmsover]

Hi Phil,
Thats what I was told, even by my doctor. He said that you will see some improvement quite quick and then we can start the steriod taper and get you off them.
Then another doc tells me you cant stop the steriods. The entire reason I took the punt and treatment and punt on taking the RTX was to get off the cortisol.
I thought this was a smarter option and better for my body and getting the inflammatory process under control.

I will see what I happens over the next 2-4 weeks as I have now had 2 x 1000mg infusions two weeks apart, and you would think thats enough knock the disease process for 6, or at least for a while any how.

C

[pberggren1]

Sometimes it is hard to get off the steroids and sometimes one can never get off them but I think everyone deserves the chance to try to get off them if they can.