Is there anyone else on Rituxan?

Well, it looks like my insurance will cover this.  Had a real heart to heart about my issues and the fact that in 1 year I have had little improvement. Of course I am improved in that I am not crawling and I still have a job but that is the steroids doing their job.  They rheumy has declared my unresponsive to the Enbrel even though it has only been 15 weeks, but all I have done is gone up on the prednisone and was never able to come off of it.  They say that is a failed trial.  The next step is a newer medication called Rituxan.  It is an infusion that takes all day then it is repeated 14 days later.  Supposedly and hopefully then no more infusions of this for 6 months possibly longer and a significant improvement is expected in symptoms.  It has to be given in combination with methotrexate which I am already on and a 100mg infusion of methylprednisolone right before hand.  It seems to have a pretty high percentage of acute reactions occur with the majority of patients and of those 10% can be severe.  That sounds like a lot so as you can tell I am a bit hesitant.  So I talked with the doc i had been seeing to be sure we are treating the right condition before I take on such a risk.  Then she seemed to think I was questioning her or didn't feel comfortable with her and says that she is going to set me up with the head doc in the practice.  I swear it had nothing to do with being uncomfortable or insecure with her choices, I just had questions that I have wanted to have answered you know.  So, tomorrow I call to have blood work set up and then I will find out when my appt is with the head honcho.  To me I think it would be normal to question things a bit when little headway has been made in 1 years time.. I mean this is my life and disability has no room in the future at least not for the next 30 years.

Any comments, ideas, thoughts, support...  Would be great.

Theresa

Thank you Yalinda for your response. I am doing better today. The depo medrol daily is definitely better for me than the prednisone. Had my blood work drawn and for the first time asked for a copy of my previous lab in April. I am starting to understand and accept things a little more now. I saw my CRP from mid april and it was 18.4 and this was on steroids. When I first saw them it was only 8. So, I think to me this explains things a little better or at least makes it real while I was trying to blame it on physical and environmental factors. I believe I am leaning more toward doing the Rituxan infusions. At the rate that I am going things could get much uglier over the next year so though there are risks the benefits still outweigh them.

Thanks again for caring and hope that you are dealing well.

Theresa

Thanks Erin. I am sure he is accustomed to medical illness and chronic disease he is the Head of Rheumatology in the practice.... LOL.... I do understand your drift though. He is only there like 2 days a week and has newbies or interns doing most of his work for him....

Basically, since I don't have a positive RF I was questioning that this could be something else and since the Rituxan is not recommended for Lupus patients I got in a panic since well.... WHAT IF??? ya know?

Then there came the situation where the other doc was sure I was judging and I wasn't.... I am freaking though because we really haven't gotten further then it inflammatory but is it definitely Rheumatoid?

After seeing the CRP results and how they have risen since I started going there... the pain is bilateral.... I guess I have to believe it now...

It is strange though because before I didn't wan them to think I was crazy, I wanted this docs to listen to me but they wouldn't and now they do, they say I am not, it isn't psychological and in my mind I still question if it is almost as if I want it to be now....

Theresa

so yeah...i deleted my previous post. LOL...that was the biggest brain fart i've had in a while.

doh!....yeah but i felt like an a**! LOL
whole thing went "Zoooom" way over my head!
well shoot...hah, so if your doc does ever bring up a real "head honcho" lol...you'll remember my tale.
so when do you see the big guns? i went to NY Hospital for Special Surgeries for a consult with one of the BIG GUYS of rheumatology...was totally worth it. it was only then did i get started on the new meds for RA like the injectable biologics and newer dmards.

best wishes!