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 (http://www.vasculitisfoundation.org/map/list?filter0%5B102%5D=102).

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.

[Lightwarrior]

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.

I agree that you need a Wegs specialist fast. You should not have to make medication and/or treatment decisions. I know that you can get a free consult from the Wegs specialists on the Vasculitis web site. They will talk to your doctor.

I am glad that you found us. We all need each other.

[Palmyra]

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!!!!!


Your Doctor wants YOU to look up information on medications? That might be best for you? I do not think that is a good idea at all. None of us on this site are trained physicians, and may steer you in a very well intentioned albeit very wrong direction.

I think that is a very important question, and one that your doctor should be very specific about his/her treatment recommendations. Then they should offer you the opportunity to make some informed choices, with his/her assistance. A second opinion should come from a very knowledgable source, solidly educated in medicine and with autoimmune vasculitis in particular.

[Al]

Lupita, I think Jane's advice is perfect. In all cases, a vasculitis specialist really needs to be involved. Please let us know how this works out.

Al

[lupita]

Does anyone know any specialist near atl ga.

[lupita]

How do i get a free consultation?? Thats what i thought too :bored:
I agree that you need a Wegs specialist fast. You should not have to make medication and/or treatment decisions. I know that you can get a free consult from the Wegs specialists on the Vasculitis web site. They will talk to your doctor.

I am glad that you found us. We all need each other.

[pberggren1]

Does anyone know any specialist near atl ga.


Contact the Vasculitis Foundation.

The website is: Vasculitis Foundation | The Vasculitis Foundation supports and empowers patients through education, awareness and research. (http://www.vasculitisfoundation.org)

They will have a list of docs for you. And I will message my friend near Atlanta to see if I can give you her number. She has a really good doc there.

[Al]

What Phil said, Lupita. The closest vasculitis center to you is, I think, in North Carolina (Chapel Hill), which is still a drive. But you doctors on the list will consult with your doctor.

Al

[lupita]

next month i see my rhuemy and its either doing rituxin again or mtx???
would like to do it the natural way butttt dont know if there is any...

but i am feeling fine now am on 2.5 mg of prednisone no symptoms of any kind. just hair loss from prednisone but nothing else.

[Marilyn]

I am scheduled for my first round of Rituxin, July 22. I have been on immuran for 2 years and have pretty good results until my MD decreased my dosage down to 25mg, (I initially started on 100mg) and I started having these "spells", shaking uncontrollably, breaking out in sweat all over my body, nauseated, one time I couldn't move my legs and I went to sleep or passed out and when I awoke was better. being a nurse, I thought I was having low blood sugar, but had just eaten each time. I hadn't received my labs yet, but Dr. Had ordered an ANCA which was about 10 times greater than 8 months ago. It had been 70, my last one was 670! Me raised my immuran back to 75 mg. had more blood work and my liver numbers had increased and Dr. Is afraid it is the immuran. So he suggested finding out about this new med for me with the hope of remission. I hated taking prednisone and am hoping I won't have too. Any comments/advice on high liver numbers and meds? I have been taking Tylenol, but I have reduced from 1 to2 tabs, I also take ultram for pain. Thank you all for any information. Marilyn Maxwell

[Palmyra]

... had more blood work and my liver numbers had increased and Dr. Is afraid it is the immuran. So he suggested finding out about this new med for me with the hope of remission. I hated taking prednisone and am hoping I won't have too. Any comments/advice on high liver numbers and meds? I have been taking Tylenol, but I have reduced from 1 to2 tabs, I also take ultram for pain. Thank you all for any information. Marilyn Maxwell

Hi Marilyn....my daughter developed acute pancreatitis while on immuran. It was potentially life threatening, required surgical stents and involved a protracted & long recovery. Some can take it with no biliary/hepatic side effects, others evidently not. Listen to your lab numbers and your docs. No one on this site likes taking prednisone, but sometimes its a life saver. Best wishes to you and do keep us posted per your results!! PS:(Watch tylenol and all NSAIDS...they really can mess with large organs/kidney/liver)...drink your water:flapper:

[drz]

I had to cut back on my pravastatin when I started azathioprine and was also told to avoid pain meds that were metabolized by the liver. My pred is down to 5 mg per day and seems tolerable at such a low dosage.

[Marilyn]

Has anyone taken Rixitan and gone into remission? Iwould love to hear from everyone. MarilynMaxwell

[Marilyn]

I asked the question several days ago, has anyone one had good results with rituxin? I am scheduled to have it July 22. First dose, I am afraid of side effects but no one has talked about bad outcomes with this med. Please give input if you have had this drug. Marilyn

[marylz]

Sorry Marilyn. I have had no experience with rituxin.

[Alysia]

I asked the question several days ago, has anyone one had good results with rituxin? I am scheduled to have it July 22. First dose, I am afraid of side effects but no one has talked about bad outcomes with this med. Please give input if you have had this drug. Marilyn

Hi Marilyn,
sorry I didnt see your question earlier. it was "hidden" in this long thread. btw in such cases I suggest you open a new thread.
I had my first RTX in 20 march. (i wrote about it here, you can read).
I had no side effects but very low blood pressure and fatigue.
it has good out come. I will write about it later.

[Barbara N]

Hi Lupita, welcome to the group. It is hard when you are living in an area that is not very up to date on new diseases or rare ones. I also live in an area that doesn't have any information on Wegener's so I have had to find out most my self. I have found most of the helpful information right here on this blog. My doctors this week just told me that they can't cure me but they can keep me comfortable and are preparing me. Preparing me for what? I took it as an insult but they said they were working on drugs that would help me through. It turns out that the pain treatment >I had doesn't get rid of the pain for good it helps the pain medicine work better. Good luck and try and find a good vasculitis doctor. You can get a lot of information here on this forum. Stay strong and positive, Barbara

[Alysia]

Hi Lupita, welcome to the group. It is hard when you are living in an area that is not very up to date on new diseases or rare ones. I also live in an area that doesn't have any information on Wegener's so I have had to find out most my self. I have found most of the helpful information right here on this blog. My doctors this week just told me that they can't cure me but they can keep me comfortable and are preparing me. Preparing me for what? I took it as an insult but they said they were working on drugs that would help me through. It turns out that the pain treatment >I had doesn't get rid of the pain for good it helps the pain medicine work better. Good luck and try and find a good vasculitis doctor. You can get a lot of information here on this forum. Stay strong and positive, Barbara

Hi Barbara. maybe you should find another docs ? or ask them to consult with vasculitis founfation ?

[Barry Forshaw]

Has anyone taken Rixitan and gone into remission? Iwould love to hear from everyone. MarilynMaxwell

My wife had her last treatment involving Rituximab almost three years ago and so far has had no flares. All her medication has been stripped back over the years so that she only takes Omeprazole now. In that time she had a baby (our daughter is 4 weeks old now) and so far all is well! My wife has tracheal stenosis so has to have her windpipe dilated every 5 or 6 months, but other than that has very little medical involvement.

[Barbara N]

Neither have I but Alysia told me to ask my doctors when I saw them on Wednesday. None of them had heard of it. will ask my group in Madrid where they are much more advanced.