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Discussion Starter · #1 ·
I am still on prednisone,celebrex,plaquil,Imuran,klonopin,pain meds, vitamins and I have tried several other meds embrel,humiria,methotrexate,they didn't help only caused other problems. So now I had a IV of RITUXAN(CHEMO) twice. and am do again in agust. I have already had an infection and taken an antibiotic. And I had to go up on prednisone 3 x's Now I am do again to have RITUXAN by IV in early august. HAS IT HELPED ANY OF YOU?? I KNOW IT IS FOR RHEMATOID ARTHRITIS NOT LUPUS BUT LUPUS PATIENTS TAKE IT. SO FAR IT HASN'T HELPED ME. SO I WAS JUST WONDERING IF IT HAS HELPED ANY OF YOU WITH SLE. I'M JUST NOT HOPEFUL BECAUSE WHAT I HAVE BEEN THROUGH. I AM JUST PRAYING THAT ONE OF YOU WILL SAY YES IT HAS HELPED ME. I AM SO FRUSTRATED BECAUSE I HAVE TO KEEP GOING UP ON PREDNISONE.SO FAR THAT HAS BEEN MY STORY. IF NOT RITUXAN? HAS ANYTHING HELPED YOUR SLE AT ALL. I MEAN BESIDES PREDNISONE.I WOULD APPRECIATE ANY GOOD NEWS ,WELL EVEN BAD:wink2:THANKS!!!!!!:worried:
 

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Rene:

I am sorry you are having such a tough time. I cannot answer your uestions about Rituxan, as I have not had it. I am sure that someone will come along and let you know about their experiences with that medication.

I too have been through several immunosupressants, I am currently on CellCept and have found it to be very good for me...not to say that I still don't have some flares that break through...but when I do a lower dose of pred for a shorter time seems to get me through. I am currently weaning off pred yet again and am down to 5mg a day (I started at 60 for 1 week, 30 for 1 week, 15 for 2 weeks, 10 for 2 weeks)

I hope you find some relief soon...

Stephanie
 

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Hey Rene,

My first round of Rituxan back in December 2005 helped me until December 2007... I was giving the drug for ITP (low platelets), not for my lupus... but on top of it helping my pl it did make a lot of my lupus symptoms disappear, I thought I was in remission. Then in January 2008 I went through a major flare and had problems with my platelets again... so in June of 2008 Rituxan was the answer because it helped before (my doc hated the fact that I was so young and so dependent on prednisone) so she set me up for 4 treatments and I only lasted for 3 had the shakes and then my chest started to majorly hurt, It hurt to breathe. So they stopped the treatments and I was told Rituxan was no longer an option for me... have been on low dosage of prednisone for the past year,,, had another major flare this month,,, and not sure what my options are...

I hope that the Rituxan treatments do help you out... I know that many on here have been on it before and had success.

Good luck!
 

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Just told to take rituxan too

I unfortunately am trying to find the same answers as you. I was just on the Orencia IV and it was just giving me infections so my dr said we needed to be more aggressive and try the rituxan instead so I am trying to find out about it as well. Does it give you bad chemo side effects? I actually do have RA so the results maybe different for me but I am currently on: Imuran, plaquenil, lexapro, medrol, depomedrol, loratab and celebrex. You hurt so bad and think they dont help but if you miss one you feel it. :(
 

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Hi Rene,

Rituxan takes time to take effect. The first time it took 4 months for me. Now it takes about 2 months for me to feel human again.

Rituxan helped all the Lupus symptoms such as rashes, joint pain, mouth sores, headaches, fevers and so on. It also helped some of the neurological issues but not fully.

I was able to cut down the Prednisone but not go off of it entirely and am still on the rest of my cocktail. Some people have been able to discontinue some of their meds. The lucky few have gone into remission.

Keeping my :fingers: for you,
Lazylegs
 

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Discussion Starter · #6 ·
I would like to talk to you a little more about rituxian if you don't mind?My life has been in SHAMBLES THE LAST 2TO 3 YEARS. I've been married for ALMOST 20 YEARS AND MY MARRIAGE WAS GOOD BUT IS NOW FALLING APART.I have a 12 yeAR OLD SON WHO I LOVE VERY MUCH.because of my illness my husband has had to do everything and he has gotten very angry and mean about it. I feel like I am not only living with a chroinic cruel painful dibilitating disease. I am all alone with no one. I ask him why he has turned on me? It's not my fault!!!!!!! He doesn't listen. He has totally changed towards me. He has no respect for me. I was a good mother and wife. As long as I was everything was fine. not now though. I feel crushed and all alone!!!!!I need his insurance because all I have is medicare or I would not allow the verbal abuse. It just makes me worse! Or the total disrespect he gives me. THanks for listening. I hope RItuxian works.. It is 3;46m and I am up to do prednisoe increase again. MY doctor told me point blank If I cant stop going up on steriods/prednisone I would die in 10 years. I told my husband and he said nothing. SOmetimes I feel like I am not only going through physica
 

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Hi Rene,

Ask any questions you would like about Rituxan and I will attempt to answer them for you.

One thing I can say is it gave me my life back. Instead of being a basket case I can function fairly well on a daily basis. Not everyone gets the same results. I hope you are one of the lucky ones.

Take care,
Lazylegs
 

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Rene, I hope the next round helps you. I know you are going through an extremely difficult time lately. Let us know how you get on.

Take care

Deb
 

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Hubby

Oh Rene, I can totally relate to you. My husband got Hodgkins Lymphoma last March and I totally supported him through all of it even though my Lupus was flared the whole time. Just dealing with everything the best I could taking care of our 6 yr old son. This Feb. my Lupus rapidly started getting worse and I have never had any support from him. My dr said it is progressing very fast now and it is probably due to being in a flare for so long with still so much stress and no support. So needless to say I told my husband that he doesnt respect me, care for me, help me, understand or even try to research what I am going through. That if i continue like this I will end up dying and since he doesnt care then I want a divorce. Of course he denied all etc but everytime he said something I just said "I am done I am going to die" and he moved out last Monday. It is not easy but if he hasnt helped then he wont end up helping and doesnt want to help so you need to move on and get that extra stress out of your life. I am not saying it is easy by any means but it is really the best decision. Sorry. Good luck!
 

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Discussion Starter · #10 ·
Moving on!

pkrdstrfsh1;554599 said:
Oh Rene, I can totally relate to you. My husband got Hodgkins Lymphoma last March and I totally supported him through all of it even though my Lupus was flared the whole time. Just dealing with everything the best I could taking care of our 6 yr old son. This Feb. my Lupus rapidly started getting worse and I have never had any support from him. My dr said it is progressing very fast now and it is probably due to being in a flare for so long with still so much stress and no support. So needless to say I told my husband that he doesnt respect me, care for me, help me, understand or even try to research what I am going through. That if i continue like this I will end up dying and since he doesnt care then I want a divorce.

Of course he denied all etc but everytime he said something I just said "I am done I am going to die" and he moved out last Monday. It is not easy but if he hasnt helped then he wont end up helping and doesnt want to help so you need to move on and get that extra stress out of your life. I am not saying it is easy by any means but it is really the best decision. Sorry. Good luck!
Lupus friend,first of all I want to say that I am so sorry that you helped him and he abondebe d you in your time of nedd(beleive me there will be pay day some day!!Here is my delimma, I hate to blunt but I mean it in the most respectful way possible!!!! When I am not able t have relations with me husband he is a down right MEAN BEAR, I MEAN HATEFUL!!! and before I can get the chance to feel alittle better he has cussed me terribly,used the most vulgar words and talks to me hateful. SO then when do do get a little able I am so hurt by how he treated me while I was in pain ,sometime agony I don't want him to touch me periods

.But the only way I can get him to help me is to had some kind of intimacy with him and after the way he has treated me it makes me feel degrated to to it,. I 'm scared through, I scared about how in the world will I make it on my on and if I will get my so because I am sick. See he takes him to school every morning because at that time I can hardly move until I take My meds. I am scared about How much money I will get in alimony and child support. I have to pay all my bills and buy my meds. I wil loose BCBS but will have medicare. I can't pay for it.

Can you pleae tell me if you don't mind how you are making in detail. I swear I am not trying to be noisy. I need someone to tell me what to,How the system works,what to do,who to contact for help(like attorneys that will help us in these sitations and realistically how much money we can get. I know you don't know for sure. But you have been here and any advise helps. I know that I am living in a verbal and mental abusive reationship!I had to let myself go completely knumb so that I couldn;t feel any longer.I don;t have love or hate.

I have NOTHING!! that way I don;t feel so I do'nt hurt.Can you believe that just 3 years ago my husband was telling me that I was the greatest at everything,because even through all the infections,flu like smptoms,vomiting etc............. I was still able to do so much. Well it caught to me and knocked me for a loop and I went from the bed to the recliner and now the things he yells,cusses and says to me are purely AWFUL!!!!!!!!!!!!I stay because I'm sick and don't want to loose my son and I worry able the money,bills etc...Sometimes I do the intimate things when I am able just to get him off my back if I am able and I feel degraded because of the way he has treated me.

He just doesnt care. He has no compassion. I walked out of chemo one day . I was dripping in sweat and he had to nerve to say to me. I don't know it I love you any more. WOW! I just cried. BUt threre is alot more where that comes from. But but no matter how sick I am if I show itmacey he's some what helpful. But if he saw this he would say non of it is true. He told me he does'nt want to hear anything I have to say and doesn't respect me at all. and all I did was get sick.

Funny when I was first dx he was great.That is as long as I was doing everything .but when I could'd anymore he became a very,mean CRUEL :mad::mad::mad::mad::mad:So any advise,contacts anywould help. I was crying the other day and I told him I was scared I was going to die. He was rude and said that i should be doing things for others. I said how can I . I can't even do for myself. The list just goes on. Thanks for listening. sorry fo any misspellings it is 3:00am eastern time and yes I am up. This medicine does weird things to ones body. Thank you my lupus friend. I know we don't know each other at all but we feel each others pain because we live it!!!! GOD'S BLESSINGS ON YOU AND YOUR SON!! MY ONE AND ONLY SON(child) is 13.:)
 

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Rene, I just want to send you hugs and more hugs your way, I can so relate to your situation. My husband has told me that I'm "Worthless" I think thats just about the worst thing you can tell someone. I too have often thought about divorce but am hanging in there I have 3 kids. They would not know how to act if the shoe was on the other foot. My hubby to is also verbally abusive, I guess all we can do is pray, pray, pray. Be strong my lupus friend, don't give up, were in this together, if you ever need a friend to talk to just PM me. Take care....
 
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