Is there anyone else on Rituxan?

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babybloo
Regular Member


Date Joined Aug 2005
Total Posts : 289
   Posted 5/21/2007 4:13 PM (GMT -7)   
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
dx: Rheumatoid Arthritis.  Duration: 10yrs. Dx'ed 2006.  Asthma, hypertension, hypothyroid
 
Meds: Methotrexate 25mg wkly, Prednisone 15mg, Enbrel 50mg wkly, Arava 20mg, Folic Acid, Fish Oils, Ultram 50mg TID,  Advair 250/50, Diovan HCT 160mg/25mg QD, Women's One a Day, tylenol PRN.
 
 


yalinda
Veteran Member


Date Joined May 2006
Total Posts : 1179
   Posted 5/22/2007 1:42 PM (GMT -7)   
bloo .... how r u ....(((((((((((((hugs)))))))))))))))

dont ever feel bad about ur rights to ask questions. people ask me questions everyday because they need to understand the medical aspects of their health. look at this as a positive thing u r seeing the big guy! they probably only do that for special cases and think of it as a priveldge not a problem good luck lucky lady :)

babybloo
Regular Member


Date Joined Aug 2005
Total Posts : 289
   Posted 5/22/2007 1:52 PM (GMT -7)   
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
dx: Rheumatoid Arthritis.  Duration: 10yrs. Dx'ed 2006.  Asthma, hypertension, hypothyroid
 
Meds: Methotrexate 25mg wkly, Prednisone 15mg, Enbrel 50mg wkly, Arava 20mg, Folic Acid, Fish Oils, Ultram 50mg TID,  Advair 250/50, Diovan HCT 160mg/25mg QD, Women's One a Day, tylenol PRN.
 
 


yalinda
Veteran Member


Date Joined May 2006
Total Posts : 1179
   Posted 5/22/2007 6:38 PM (GMT -7)   
keep ur chin up babybloo- i definetly live for today a try not to worry about tomorrow. it will get here fast enough.

babybloo
Regular Member


Date Joined Aug 2005
Total Posts : 289
   Posted 5/23/2007 4:56 AM (GMT -7)   
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
dx: Rheumatoid Arthritis.  Duration: 10yrs. Dx'ed 2006.  Asthma, hypertension, hypothyroid
 
Meds: Methotrexate 25mg wkly, Prednisone 15mg, Enbrel 50mg wkly, Arava 20mg, Folic Acid, Fish Oils, Ultram 50mg TID,  Advair 250/50, Diovan HCT 160mg/25mg QD, Women's One a Day, tylenol PRN.
 
 


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 5/23/2007 4:53 PM (GMT -7)   
confused   confused confused hold the phone....I'M CONFUSED! confused confused confused
you wrote "she is going to set me up with the head doc in the practice..."
 
YOU MEANT THE CHIEF RHEUMATOLOGIST!?!?!
 
oh crap! i'm sorry! LOL...i read your post as "head doc" = psychologist or psychiatrist!!!!!! tongue haaaaaah!
 
duh!!!!!!!!!!  ok i'm a dope.
 
ok...the head of rheumatology in that practice....gotcha'.
 
lol
 
 
Arthritis Forum Moderator & Co-Pilot
Active Severe Rheumatory Arthritis. AS. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures (under control!). MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Kidney Stones (oh joy). Previous Lymes Disease for 10 years.
Meds: Remicade infusions 600mg Q3weeks; Intra-articular knee injections; 6MP 50mgQD plus 75mg weekly; Mesalamine 4GramsQD; Prednisone 20mgQD; Entocort 9mgQD; Meclizine; Augmentin; Tigan 300mg; Reglan; LidoDerm; Diazepam 5mg; Rozerem 8mg; Diclofenac; Celebrex; Percogesic; Dilaudid 4mg. 


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 5/23/2007 4:55 PM (GMT -7)   
so yeah...i deleted my previous post. LOL...that was the biggest brain fart i've had in a while.
Arthritis Forum Moderator & Co-Pilot
Active Severe Rheumatory Arthritis. AS. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures (under control!). MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Kidney Stones (oh joy). Previous Lymes Disease for 10 years.
Meds: Remicade infusions 600mg Q3weeks; Intra-articular knee injections; 6MP 50mgQD plus 75mg weekly; Mesalamine 4GramsQD; Prednisone 20mgQD; Entocort 9mgQD; Meclizine; Augmentin; Tigan 300mg; Reglan; LidoDerm; Diazepam 5mg; Rozerem 8mg; Diclofenac; Celebrex; Percogesic; Dilaudid 4mg. 


babybloo
Regular Member


Date Joined Aug 2005
Total Posts : 289
   Posted 5/23/2007 5:03 PM (GMT -7)   
Hey, you shouldn't have deleted it because there are others who could have benefited from what you said. I did even if it wasn't what I was talking about at the time.... It was great to know that someone else has been through the same hell I once went through.... Heck... it may just be a clue or a sign or something... maybe I am crazy... LOL.... Don't ever delete posts other people can benefit from your knowledge and experience.

Theresa
dx: Rheumatoid Arthritis.  Duration: 10yrs. Dx'ed 2006.  Asthma, hypertension, hypothyroid
 
Meds: Methotrexate 25mg wkly, Prednisone 15mg, Enbrel 50mg wkly, Arava 20mg, Folic Acid, Fish Oils, Ultram 50mg TID,  Advair 250/50, Diovan HCT 160mg/25mg QD, Women's One a Day, tylenol PRN.
 
 


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 5/23/2007 5:19 PM (GMT -7)   
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!
Arthritis Forum Moderator & Co-Pilot
Active Severe Rheumatory Arthritis. AS. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures (under control!). MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Kidney Stones (oh joy). Previous Lymes Disease for 10 years.
Meds: Remicade infusions 600mg Q3weeks; Intra-articular knee injections; 6MP 50mgQD plus 75mg weekly; Mesalamine 4GramsQD; Prednisone 20mgQD; Entocort 9mgQD; Meclizine; Augmentin; Tigan 300mg; Reglan; LidoDerm; Diazepam 5mg; Rozerem 8mg; Diclofenac; Celebrex; Percogesic; Dilaudid 4mg. 


babybloo
Regular Member


Date Joined Aug 2005
Total Posts : 289
   Posted 5/23/2007 5:25 PM (GMT -7)   
Have my appointment June 7th... believe me I am nervous but at least I feel like I might get some questions answered instead of... We can't predict it, I don't know, all meds have side effects, we won't know until we try, and I am not sure... those answers drive me nuts.... and I know that not all questions have answers but lately I have felt so much like a guinea pig that if I get the same answers from another person then maybe I will learn to settle with it...

I don't know if a diagnosis has stages but I think i have been in denial and anger from day one and then yesterday for some reason I think I flew through a few to acceptance just like that... so hopefully I will quit fighting this and finally start to deal with it and learn.... Seems when I feel good I overdo it then I fear doing anything for fear it will start a flare and I never really asked questions before and finally the other day I came with a list but there wasn't enough time to cover them... If I am going to pay the same for a 20 minute visit as I am for a 60 minute visit then darn it they will find a way to cover all the bases.

Theresa
dx: Rheumatoid Arthritis.  Duration: 10yrs. Dx'ed 2006.  Asthma, hypertension, hypothyroid
 
Meds: Methotrexate 25mg wkly, Prednisone 15mg, Enbrel 50mg wkly, Arava 20mg, Folic Acid, Fish Oils, Ultram 50mg TID,  Advair 250/50, Diovan HCT 160mg/25mg QD, Women's One a Day, tylenol PRN.
 
 

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