All About Rituximab

[elephant]

Nancy so glad you doing well! Nancy take care of yourself and keep on trucking...your doing great!

[LisaMarie]

nancy glad u r doing so well...i will be fine.....the doc and i are on agreement about my heart ....we will watch it closely and pray it stays the same...just part of life. can not wait to feel better ...think i was WG raging more than i was willing to admit so that is why i feel so rough ...but i will b be bettwe soon....haves good dat ya ll

[Nancy]

Thanks Sangye - kinda of figured that was the probability - not bothersome as a symptom - just love to carry around more fluid on top of the oral pred additions...

[Palmyra]

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...."

Lisa, I have been away for a while, so not up to date. Are the sores in your mouth interfering with your ability to eat? Good nutrition is so important while you are on the mend, so if you are suffering and not eating, not so good.

There are topical sterroids that can help with mouth ulcerations, absorb systemically in very small amounts so will not add to your 'pred' burden, and have rapid onset of action. "Lidex" is one to start with. Requires an Rx here in the States.

Hope you are feeling better soon!

[LisaMarie]

Lisa, I have been away for a while, so not up to date. Are the sores in your mouth interfering with your ability to eat? Good nutrition is so important while you are on the mend, so if you are suffering and not eating, not so good.

There are topical sterroids that can help with mouth ulcerations, absorb systemically in very small amounts so will not add to your 'pred' burden, and have rapid onset of action. "Lidex" is one to start with. Requires an Rx here in the States.






Hope you are feeling better soon!

I will try that ....nothing else has worked....i eat alot of yogart that i freeze.....and do ok eating most of the time and take prenatal vitamin and calcuim with d ......I tried.miracle mouth wash ...it just numbs it but nothing makes it go away....maybe it will disappear when the WG goes into remission......i can hope......have a good night yall

[Palmyra]

Yeah, the miracle mouthwash usually has lidocaine in the prep. As you said, numbs things short term, but doesn't solve the problem. Are you on cytoxin? What other drugs are you taking? I am trying to figure out if the mouth sores are from drug side effects, or from another problem. Do you have inflammatory bowel problems as well?

Making a basic (pH) solution of water and baking soda (~three-four generous tablespoons to one liter) and using that as a rinse will keep the mouth from being too acidic. Use it frequently throughout the day, especially after meals. Avoid acidic or highly spicy foods. Keep eating protein....eggs, fish. That helps us heal.

Lidex ointment is great stuff...get a script if you can. Good luck!

[Aunnie]

Hi All,

I went off the Orencia infusions(study) about 2 weeks ago. I was on them for 7 months.

So now I start Rituximab Sept. 10th for 2 infusions.
I will be going off cellcept and lowering the prednisone,Yahoo,hope I can get lower than 7 mg.

I will be given Decadron and Benadryl also. Not sure of order of drugs yet.I go for more discussion Sept 3rd.

We've also had much discussion on the cost of Rituximab.Long story,short,we will be paying $2000 per infusion.Thats with health insurance. I think I will be having 2 more infusions in 6 months.

I did terrible on Cyclophosamide infusions,so I'm some what worried about Rituximab infusions,only time will tell.....

I've read this whole thread almost twice so thanks to all of you for your info,side effects,discussion etc,etc.


Wish me luck,I am somewhat scared because I really want his one to work.I've had WG since July 2007 and would love to get into remission at some point.

Good and recovering health to all

Aunnie

[elephant]

Aunnie, How are you feeling ? DId the infusions work a little bit?

[LisaMarie]

Yeah, the miracle mouthwash usually has lidocaine in the prep. As you said, numbs things short term, but doesn't solve the problem. Are you on cytoxin? What other drugs are you taking? I am trying to figure out if the mouth sores are from drug side effects, or from another problem. Do you have inflammatory bowel problems as well?

Making a basic (pH) solution of water and baking soda (~three-four generous tablespoons to one liter) and using that as a rinse will keep the mouth from being too acidic. Use it frequently throughout the day, especially after meals. Avoid acidic or highly spicy foods. Keep eating protein....eggs, fish. That helps us heal.

Lidex ointment is great stuff...get a script if you can. Good luck!

I am on rituxan...get my last of 4 doses this friday...pred 40 mg ....imuran 100mg ...just started on friday...prenatal vit, calcuim with vit d and just got a script for lasix and potassuim to help get rid of some of the fliud retention.....started on methotrexatebut did not tolerate well...had one dose of iv cytoxan and did not handle it well either so glad to be on the rituxan...hoping it works...The WG doc thinks it is a form of the aWG and when i am in remission it will resolve...so I guess I wait and see ...I eat alot of greek yogart it is packed with protien and keeps the thrush away

[Sangye]

Aunnie, I hope rtx works well for you. So far it has a great track record. It sure worked well for me and I have refractory (ie non-responsive) Wegs. It sounds like you do, too. The RAVE study showed that rtx is particularly effective for refractory Wegs.

Do you mean you have to pay $2K out of pocket for each infusion? That makes sense if you have an 80/20 insurance plan.