All About Rituximab

[LisaMarie]

Thanks ya ll...trying to finish some stuff up at work then off to the doc...I also printed off a list of questions...hehehe so my pred brain won't interfer with me getting answers....i will kepp ya all post ..love the hugs

[LisaMarie]

ok i am finally home here's the plan..100mg Imuran to start this week while i am on the Rituxan ....decrease prednisone to 40mg, lasix 20mg with kcl to help get rid of the h2o i am retaining plan to maybe be off prednisone in 6 months if all goes well still not sure why my inside mouth is swollen and has sores except for lovely WG.....he wants me to see the eye doctor for my right eye and the otolarngist to call him after he scopes me on 9/9 so i have some good hopeful new Yeah

[elephant]

Lisa Marie, glad you have a plan in place. Hoping the sores in your mouth go away. I have read somewhere that you can have sores in the mouth from WG.

[LisaMarie]

it is so wierd.:..my inside cheeks are swollen and i get ulcers or my skin turns white and peels....no mouth wash has helped or rinse....maybe when i am in remission it will go way....i can hope....i more excited about decreasing my pred ....i have gained 12#...ughhh....he said to play with when i take my imuran...make sure it is with food and may have to split the dose to decrease or hopefully avoid the nausea....now i wait for the trach specialist to tell me when he will open me again...i know i have closed more but can not do anything til the rituxan is done....on my way to worj a few hours then get my rituxan have a great day

[Sangye]

That sounds like a good plan, Lisa Marie. I hope as the rtx starts to work the mouth sores clear up. Which rtx infusion is this-- #2 or #3? I've lost track.... You'll start feeling better 6 weeks after the first infusion, maybe sooner. Dr Seo had told me the 6 week number and it was true. All of a sudden that week it was like a fog started lifting.

[LisaMarie]

This will be infusion number 3 ...then one more to go....he said based on the reve study it may be my one time to get rituxan if the imuran does what it is suppose to do.....aas far as my heart goes..the only way to truly confirm that it is there is with a biopsy...not gonna do that...sorry way to evasive...but even if we confirm it ..there is nothing else to do tah what we are doing...so the plan is to watch it closely ...i have an article about one person that they biopsied after she had a large heart mass remove and it was WG....so my plan is to listen to my body ...not over do it and play the dog stays asleep in my heart....see everything point to WG but he will not do anything different then he is doing now....so it is a part of life I will adjust to and I am fine with that...for now at least...i keep telling myself it could be so much worse.....

I hope you are feeling better today Sangye

[Sangye]

Oh yeah, I can't imagine doing a heart biopsy! If it doesn't change the treatment, there's no reason to do any procedure. I think the Wegs dog will leave your heart alone once it tastes the full dose of rtx.

[elephant]

LisaMarie, I agree with Sangye. I really think it is the WG that has your heart so angry...that RTX will kick its little ....

[Nancy]

Hi All - looking through the past few weeks it appears that Lisa marie is continuing to have issues. That is too bad. I have had my two doses of Rutximab - day after infusion - great!! then tired on day two. 1st dose no issues - slight reaction with administration then went away with short decrease in administration rate. 2nd dose - feeling a bit more tired - but moving and accomplishing more than I have been able to do for some time. I would be REALLY hesitant to let someone even think about a heart biopsy unless there is something that they will be following up with that will cause a significant change in my health - They need to explain what they are going to accomplish Lisa Marie....
I have finally started on a prednisone taper - REALLY slow... at least Dr Abdou laughed when I jokingly said I would slip him money under the table to let me off pred early... He told my mother to help me be patient with him and the med...So by mid-Oct, I should be on 10mg every other day... That makes it a full year on pred this month... I look like an alaskan native (moon face and all) I will not mention the moon shape lower on my body... I am certain you have all seen the results of meds and low energy/tolerance for exercise. Oh yeah, the lack of discipline as well... I am able to work right now - 3 days a week - get tired sometimes - but hate the alternative of staying home and having bills mount...
How are you Sangye? Hopefully the dizziness and fatigue have decreased and the world is the same orientation-wise as others... You are so helpful with so many people here. Lisa Marie - I also would not worry about your GFR at this time - most of the meds that you are taking all can affect your levels - the doc should have told you that the numbers are not a concern < 60 unless they are supported in that same level at least 3 months. Anything shorter than that is just a "noticable" blurb for labs. Keep drinking water and walking...
Has anyone had edema with the RTX treatments - I am having this new persistent pre-tibial pitting edema that short course lasix doesn't seem to touch.. watching diet - not a salt user anyway...but interesting to have the occurrence....Hope that everyone else is in good spirits... Now that I have my signon back in my memory and on the remember me part - I should be back and participating now... Good evening everyone! Better day tomorrow!

[Sangye]

Nancy, it's great to see you're responding well to rtx. That seems to be the case for the majority of us that go on it. I have chronic pitting edema so I can't say that rtx made it worse. Do they give you solumedrol during your infusions? If so, it's probably the additional pred causing fluid retention.