Did first round of Rituxin... whats next... NEED HELP!

[lupita]

i did my first round of rituxin in feb and had no side effects and now i am taking 7.5 mg of prednisone and i feel fine now. i see my doc again in 2 months and she wants me to look up dif medication to see if i want to do another round of rituxin or take other medication... need help? i read about other medications but i wanted to know what yall think or what yall think i should do... or whats best?

a lil about me wegeners effected my upper respitory tract, my trachea, inflammation in my brain, eye problem, weakness, weight loss... and i also have type 1 diabetes.

please help!!!!!

[drz]

Everyone may tell you the same thing--see an expert in treating GPA who has enough experience and skill to give you a good recommendation on what seems in your best interests.

i did my first round of rituxin in feb and had no side effects and now i am taking 7.5 mg of prednisone and i feel fine now. i see my doc again in 2 months and she wants me to look up dif medication to see if i want to do another round of rituxin or take other medication... need help? i read about other medications but i wanted to know what yall think or what yall think i should do... or whats best?

a lil about me wegeners effected my upper respitory tract, my trachea, inflammation in my brain, eye problem, weakness, weight loss... and i also have type 1 diabetes.

please help!!!!!

[onatreetop]

Everyone is different. My RA doc is the man in charge of what and when. I have had 3 rounds of rituxan. I go every 4 monthes. one infusion then 2 weeks later the second. Then I am good for 4 monthes. All I take daily is modrel 16mgs = 20mgs of pred. I think? Then cymbalta 90mgs, Bloodpressure meds, Etc. Some where about 25 to 30 including supplements. Have a List cant remember all of them.
I have also had my esphogis stretched twice and its time to go again. That seems to last about 6 monthes.

Good luck and let us know ? I was told by my RA to call or even walk in whenever I feel really bad and we play with the meds as long as we have too. I am trying to reduce the amount of pain meds I use during the day. I am down to about half. I can feel more then i would like too. But whatever helps the liver function. my next appt. is the GI for the liver function again and esoph..

[Al]

This is unusual advice, Lupita. For one thing, rituxan is almost always given in either a four-infusion or two-infusion protocol, so why ask for your opinion after only one infusion? Unless you are a Wegs doctor yourself, it is hard to get a handle on the appropriate medications. And, by the way, there are only a couple of really heavy hitters: Rituxan and Cytoxan (the others are mostly considered "maintenance" drugs). They, along with plasma exchange, are the only present options for serious inflammation. (In all cases, I would say that brain involvement qualifies as "serious".) You don't say where you live, but it seems that your doctor is not a vasculitis specialist. I strongly advise you to find one, or, at the very least, insist that your doctor consult with one. Your can find a list of consulting doctors on the Vasculitis Foundation website.

Al

[Dryhill]

Lupita, I concur with everything that Al and DRZ say, especially about asking what you want to do. Did you start straight away on RTX, because most treatments start with taking Cytoxan and if that does not work going onto RTX. It is important that you see a doctor specialising in vasculitis.


Oh by the way, welcome to the forum please do ask us help.

Jim

[pberggren1]

Lupita, obviously your doctor does not know Wegs. You first of all need a Wegs specialist on your case. You can do lots of research about the disease and meds but it does not replace a good Wegs doc.

[drz]

The experts at Mayo Clinic recommended I start with RTX but later added CTX cause RTX works slower and my case was very severe at the time. Maybe RTX was first choice for good reasons but if they want you to switch to a maintenance drug like Imuran or MTX or some other, the doctors should discuss those options with you and offer a recommendation as to what might be best for you.

Lupita, I concur with everything that Al and DRZ say, especially about asking what you want to do. Did you start straight away on RTX, because most treatments start with taking Cytoxan and if that does not work going onto RTX. It is important that you see a doctor specialising in vasculitis.


Oh by the way, welcome to the forum please do ask us help.

Jim

[lupita]

thats why i was asking for opinions bc ive only done one round of it. the inflammation was affecting my strength in my hands( couldnt even hold even my 1 yr old lil daughter).. of sorry i live in georgia. my doc if from emory hosp in atl.
my doctor wanted me to look up the medications and when i see her to let her know if i want to do another round of rituxin or do other medication. i really didnt understand why she said that...

[pberggren1]

That is why I told you to find a Wegs specialist. Your doc obviously does not know Wegs. I can put you in touch with another Wegs patient in Grayson near Atlanta if you like. I know she goes to Emory as well.

[lupita]

yes that would be great...thank u. and the above thing i said was in reply to AL, first time using a forum. but got the hang of it.

That is why I told you to find a Wegs specialist. Your doc obviously does not know Wegs. I can put you in touch with another Wegs patient in Grayson near Atlanta if you like. I know she goes to Emory as well.