please! im so lost and need so much help

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New Member

Date Joined May 2008
Total Posts : 1
   Posted 5/13/2008 5:12 PM (GMT -6)   
im 22 years old and my mother who is 41 has RA and Lupus. shes in the hospital and its not looking well. the doctor has given me a choice to make on wether or not i want to try using a medicine called Rituxan. i have no idea about this drug. i've looked it up on the internet and i'm at a lost. i need more information than what the websites will give me. shes had both of these since she was a teenager and a few years ago decided to leave the doctors advice and drugs in the doctors office and took a more holistic route. she cant say if she wants this drug or not so i need to make the call. if anyone could PLEASE help me with this i have no idea what this drug can do and if its something to even consider. it talks about a side effect is brain infections and seizures but it doesnt say the ratio. i'm begging anyone please give me some information if you have any. eyes confused

Regular Member

Date Joined Mar 2008
Total Posts : 60
   Posted 5/13/2008 5:38 PM (GMT -6)   
I'm so sorry you're having to go through this and make these decisions. It must be so tough. I wish I could help you but am new to lupus and don't know anything about Rituxan, but surely some of the other more knowledgeable and experienced people will be on here soon and can help more. Best wishes to you and your mom.
~ Bee

God is the strength of my heart! - Psalm 73:26

Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 5/13/2008 6:06 PM (GMT -6)   
Hi hun, (((((((hugs))))))))), I'm sorry you are being put in this position.I'm not taking this nor do I know anything about it. All I can say is that what your mom has been doing is not working obviously so you should probably yield to the doctors at this point. There are people here who have some experience and there is a link started about it you may have seen. All you can do is try your best to do the right thing. I'm praying for you and your mom. Please let us know.
God Bless
Lupus like symptoms, stage 4 COPD w/CHF,  Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 4x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax 1.0 x3,Singular,nitro spray, aciphex, percocet 10mg.x4.,lasix,inderal,pot.chlor.,B12 
I will never leave you nor forsake you!

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 5/13/2008 6:10 PM (GMT -6)   
Hi b_dicola22 !!!

I bumped up a topic for you about Rituxan. Only a couple posts there, but you might be able to find more info from those members who posted!

Hang in there sweety!! You are in a tough spot and I would be inclined to trust the doc here. Your mom is real sick and she needs some aggressive treatments. I don't know a thing about rituxan . . . but the doc should. When your mom is feeling better, she make her own decisions again and decide to continue or stop this new treatment.

I know this is scary, but we really need to lean on our docs.

Keep us posted!!


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

Regular Member

Date Joined Oct 2006
Total Posts : 193
   Posted 5/13/2008 8:00 PM (GMT -6)   
If she is sick enough to not be able to make any decisions for herself, I would think that the risk of brain infection or seizures would be pretty insignificant compared to the alternative. As a nurse, one of the big questions I always tell my patients and families to ask is "what are the benefits and the risks associated with the drug?" You may want to find out what her prognosis is with or without the drug and ask if the drug could cause her any more distress in the state she is in. You could also request a care conference with the SW and case manager on her floor. They may be able to give you more information. This way whatever choice you make will be an informed choice. You have a lot on your shoulders right now so let others help you as much as possible. If she gets well enough to be able to make her own decisions again, tell her you want her to make out a living will so that if something like this should ever happen again, you will be able to honor her wishes. Please keep us posted.

Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 5/13/2008 8:20 PM (GMT -6)   
Hi b_dicola22:

I'm sry to hear the condition that your mom is in. I've had the rixtuan infusions and I have to say that I didn't have any side effects other than feeling kinda like I had the flu. I did a total of 4 infusions, the only side effect I had was my platelets dropped and my doctor stopped giving me the infusions. Overall, I don't think it did much for my lupus but I'm pretty sick with my lupus and I've been having a hard time over the last 7 years.

I sincerely hope that things improve for you mother and please feel free to come here and vent and cry all that you want. We're a loving bunch and love helping each other out. Looking forward to hearing from you again soon.

Best Wishes,
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.

Veteran Member

Date Joined Apr 2006
Total Posts : 1344
   Posted 5/13/2008 9:38 PM (GMT -6)   
Your mother's situation must be fairly serious for the doctor to suggest rituxan.  It has been tested for RA treatment but I believe it is still being tested for lupus and diseases like myositis.  There is a new test for myositis (a class of auto immune inflammatory muscle diseases) and many people have reported some success with it.
I believe that like prednisone and the traditional immuno suppressants the dire side effects are rare but they can happen.  Many people read these reports and decide to try homeopathic treatments which is a mistake when dealing with such powerful and potentially dangerous diseases. 
My suggestion is to get a second opinion.  Try to find an experienced rheumatologist, preferably practicing in a University research hospital, and see what he/she has to say about your mother's case.  If other meds have not been tried then maybe they should be tried first.  Prednisone and IVIG are fast acting but most imminuo suppressants take months to kick in.  There is usually some impact within 3 months but it can be even longer for a full effect.
I don't have any experience with RA so I don't have any advice on that.  There are other meds like Humira for RA but you really need to get a second opinion.
Sorry you have to face such daunting decisions at such a young age.  I have advised many people who are afraid of treatment but they should be more afraid of their disease.  Lupus if left untreated can be a horrible disease and it should never be untreated.  There are NO homeopathic  primary treatments that have been proven effective against an active AI disease.  Those treatments are often good as a complement to some other traditional treatment.
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
Maintain your optimism and you can beat the odds.
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller

Veteran Member

Date Joined Dec 2005
Total Posts : 1950
   Posted 5/14/2008 8:38 PM (GMT -6)   
I'm looking at being started on Rituxan myself and I have the same questions you have. Apparently Rituxan has now been approved for Sjogrens as well, or so my rheumie told me. I talked with my pharmacist about it and he said that the newer drugs are usually better tolerated, but since he doesn't dispense it, he doesn't know a lot about it and he doesn't know anyone offhand who had experience with it. Actually, he wants to borrow my dvd and information pack.

I wish that they didn't have to give it in big shots, because you can't undo it if you have problems. I know it can be hard on the liver and kidneys and certainly if she has problems with these organs I would want a specialist to say it's okay before taking it. Right now, I'm asking my hepatologist (liver doc) if they think I can take it.

I won't consider starting it until after the 22nd of May. I can let you know how I do. I'm extremely sensitive to meds due to my liver disease and ut problems. I'm going to ask for half an infusion at first to see if I'm allergic right off, or if its going to be bad, if the rheumie will do it. I'm sorry you and your mom are going through this. I wish you the best.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn

Veteran Member

Date Joined Dec 2004
Total Posts : 8198
   Posted 5/15/2008 9:05 PM (GMT -6)   
Hi There,
   The others had some great advice for you. I have no experience with Rituxan to share. I just wanted to let you know you have found a wonderful group to support you through this terrible time you are faced with at such a young age.
   Please take care and know that you can come here anytime you need for support or help in anyway. You and your mom will be in my thoughts and prayers.
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

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