Rituxan update | Arthritis Information

Hi,

I had my 2 infusions of rituxan. I didn't realize so much steroids came with the infusions, 100 mg of solumedrol. I have so much bone damage from the prednisone since having been on it for nearly 14 years. it is the first thing the doctors prescribe the minute they see me or either they give me a steroid injection. the face ballooning out the whole nine is also not a pretty sight. not to mention the relief is temporary very temporary. and I have yet to receive a bone scan, although I have requested one many times to many doctors. I think they all go to the same school of nonchalance here in Georgia. many here have minimized my symptoms and at the same time I watch my body deteriorate to nothing.

I must say I do not think rituxan is the drug for me. flaring today with a low-grade temp, so not at my best disposition probably. some of the flares have subsided but methotrexate did the same thing at a fraction of the cost. the daily pain level is still at about an 8 which is not that much of an improvement.

I am fast approaching 45 years of age. I have had this disease since age 31 and I have been saying with each new drug this time I will get my life back. well, I am running out of life. and still not able to get my life back. at that time I had my special needs child I wanted to be a better mom to. even though she is no longer here, I still want my life back, and would love my independence back. to be self-sufficient. to work, drive a car, etc.

also, I think this disease effects African-Americans differently. the same symmetrical, flaring, stabbing, burning nightmare is there. but the hands seem to be more crippled by the ra and its autoimmune buddies than with other groups. my hands are severely crippled. and have been so for the last 5 years of having it. more and more each year, however. and now I am afraid I may lose my hands altogether since the rituxan is doing nothing for the hand pain. there is more damage even after the infusion. the damage is occurring quickly now. driving to the grocery store yesterday was an absolute nightmare.

If you are having success with rituxan, I believe you and I think that's wonderful but I guess I would like to hear from those of you who rituxan didn't work for you and you have tried something else that does and could you say what that something else is. I heard there are new meds coming out soon. so I guess that gives us all something to hope for.

well hang in there and take care.

So sorry to hear it didnt work for you, please hang onto the hope that something will be invented for those of us who have no joy with the current meds.

Take care

Lisa

Shelly....Sorry to hear about your little girl.........I have a special needs nephew and he is just the sweetest little guy.

Have you been on MTX since you were dx'd?? I'm just curious because my old RD started me on MTX and never wanted me to be on prednisone unless I felt like I absolutely had to have it....which I did at times and then he would prescribe a low dose for just about a month or so which only made it bearable but never completely knocked the flares out. I first started on 6 pills of MTX and increased to 8 about a year ago because I started flaring again....and still do w/ 8. Just recently added Plaquenil to see if it would help the flaring. I'm not to crazy about starting the biologics but I have 2 very prominent knuckles on my right hand that are starting to take on that RA look....which I am soooooo trying to avoid.

Sorry for the long post, I was just curious as to what meds you have tried & failed...

Good Luck & I wish YOU nothing but the best!!

Hi MsLane,

You call that a long post. Then mine must be novels! LOL! Thanks so much for condolences. My Jasmine was a sweetheart too. An angel with eyes much wiser than her years. I think she took care of me just as much as I her. It's something you never get past or get over, losing a child regardless of the circumstances. However, it is true what they say it is better to have loved than never loved at all. Well the same applies to being a mom. I am eternally grateful she chose me to be her mom.

I had symptoms for a year. no insurance. I went to the emergency room. they gave me a bottle of ibuprofen and sent me home. when I called back for test results they had no record of me having been there even though they gave me a medical record number, long beach california. I moved back to TN my hometown. where I got a diagnosis. I was placed on more nsaids and given larger and larger doses. the way your doctor did it isn't the way all doctors do it and maybe your doctor is right no one knows. they don't all operate the same. and when you don't know any better you do what your doctor says. I later switched doctors where that doctor wanted to throw to give me everything in the book all at once. including prednisone. right from the start in TN they all gave me prednisone. I am telling as soon as they see me that was the first thing they did. I accepted the prednisone from the new doc and plaquenil. again no insurance for 2 years. I did homeopathic care during that time. no docs would see me without insurance. when i did get insurance. they put me on the enbrel straight away. it was the best thing that every happened to me. supplier ran out of it. when I started it back it never worked the same. I have been searching for that type of relief ever since. and I have been on the methotrexate 4 times, only the injections work for me. they also cause elevated liver enzymes. they don't stop the pain at the maximum dose allowed they just kept the flares at a minimum. I was still in daily pain with nothing to pair it with because I had failed all else, remicade, humira, kineret, now orencia and still on the rituxan so we will see. a very nasty stubborn form of RA. I know I am not alone when I say I wish I could send it back to the deep dark place it came from.

well hope all is well. thanks take care.

I have to get my six year old to school so I can't write a full reply now but wanted to tell you my experience with Rituxan.

I have just done my third round, we have it six monthly in AU. The first round it kicked in at week 9 post infusion and I have five good weeks and then flared. The second round didn't kick in until 5 months but that was due to the doses not overlapping and it fighting the flare from hell. I have had my third one a month ago and already I have pockets of energy but my mother passed away in between the last round of infusions so it doesn't help when the drug is fighting that kind of stress.

Don't give up yet.

When I had my first round, Rituxan was touted as being the one to 'give me my life back' etc. Everyone else I knew at that stage had first round instant results and I didn't. I think I cried for a month. Then I discovered through talking to others that yes, mostly people had that instant reaction but there were others like me who had taken several rounds for it to work on them somewhat. And then I heard of someone who didn't kick in until the six month mark post her first round.

Now, my RA wasn't dxed for over eight years to it is pretty much out of control and it is taking several rounds before the Rituxan can get control of it somewhat.

Reactions to this drug are vastly different. I would at least do a few rounds before yo even consider something else.

Also, regarding the prednisone. They have to give you that to conteract anaphalactic reactions but since it is a problem for you discuss this with your doctors. I also have to have Phenergan in my pre med to stop a reaction...I don't know but maybe you could have less Pred and they could add a high dose of Phenergan? It's worth sharing your concerns and trying to find a solution to this by working with your doctors.

I hope this information helps. Believe me I do know how frustrating it is when you keep trying drugs and they don't work but like I said, I wouldn't give up on this one yet.

Hi Cordelia,

I am sorry for the loss of your mom.   And you are right about the stress of it all, no medication can help fight ra under that type of stress. I buried my daughter in 2004 and my mom in 2005. It was tremendously difficult on my body as well as my mind.   Frame of mind is everything.

Yes, words of encouragement are always helpful. thank you.

and of course I try to compromise with the doctors. I always do. I asked that he cut the dose of solumedrol in half. I would still have some protection just don't see the need for such a high dose considering the damage it may be causing to my already damaged joints and possibly giving me osteoporosis, something mom had, and the fact no one has done a bone scan on me which I mentioned as well. I also asked for one of those too. However, it has to be a two-way street this compromise -- down here I have not found that to be the case. I am always the one doing all of the compromising regardless of the tradeoffs I am willing to make or not make.. Now my doc in TN actually listened and compromised so I have had the experience of what that is like to be a partner in my healthcare. just not down here in the 10 years I have lived here with RA. It is always like pulling teeth and I am really tired of switching doctors. I will probably refuse the drug altogether. Phenergan could probably take the place of the benadryl they give me but not the solumedrol.

Thanks for sharing your experience with the rituxan. It was the information I was looking for. I will take it all into consideration when making my decision to continue with the rituxan. Continued relief of your symptoms. take care.

I think I'm the one Cordelia is talking about in her post. I took me 6 months to have any kind of response from Rituxan. I've had RA for 9 years and this is the only med that has worked for me.
I just recently did my second round of Rituxan infusions. I was able to go 16 months before I needed another set of infusions, so Rituxan has worked very well for me....It has also, according to my most recent set of x-rays, stopped the damage to my joints.
I am sorry to hear your story, Shelly. I really hope the Rituxan will start to work for you.

Please do keep us posted!
Yep, Lynn you are who I was talking about. I use you as an example of how we can't really predict how Rituxan will work on people. It's very trial and error.

I have not had much relief yet in my three rounds, but I still believe it is the best drug out there to rein in very out of control RA. The relief I have had has given me energy and promise so I am hanging in here with it.

I was so disappointed when it just didn't 'give me my life back'. But with RA we have to be flexible and adapt. It's just how it is.

Your RA sounds quite out of control so it may take a few rounds for it to start to help. The more relaxed you are about it will help.

My honest opinion about the Prednisone in the pre med is that as one off anti reaction doses, I really don't think it is going to cause to much detriment to your system. It's the long term usage that causes the problems. Two big doses every six months, I don't believe will impact any further on your body.

I know the Phenergan doesn't replace it but I had an anaphalatic reaction the first infusion with the Pred anyway until they gave me Phenergan which stopped it. Now, I will sit there and refuse to have an infusion until I have had IV Phenergan.

Sounds like you desperately need some doctors who are going to work in partnership with you. I know that's not easy but we have to be so proactive in our own health care.

I am glad some of the things I have said have helped.
Cordelia2008-11-23 22:55:17
You know what Cordelia,

At this point, I will probably not get my life back as I had hoped. There is just too much joint damage throughout the body. However, I would be thrilled if it could just get rid of the flares and save my hands from further destruction. I am afraid I don't have the luxury of waiting 6 months however, the relentless attacks on the hands and wrists are just more than they can bear. but we will see. Enbrel is what gave me my energy back. I don't get that type of energy with this medicine at all. but we will see how it goes.

thanks. take care.
Oh okay. Wow 6 months is quite a long time. The good news is that it did eventually work for you but 6 months for me would not help save my hands. Maybe they will have to add something else just to tide me over until the rituxan starts to work. I am prepared to wait 3 months, however.
well continued success with rituxan. thanks. take care.I had my first Rituxan infusions in November 2007 with zero improvement.

(However, also beginning November 2007 through February 2008, I had a ruptured Achiles tendon, surgery for that, developed an MRSA infection after the surgery, had a second surgery for the infection, was on IV antibiotics for many weeks for the infection. Worst of all, my sister developed leukemia and died in January 2008. So, in fairness, the Rituxan didn't stand much of a chance to help, considering the stress I was under at the time.)

In June and July 2008, I had my second round of Rituxan infusions, and THIS TIME, they helped enormously. Greatly lessened pain in my joints, and best of all, the unbearable fatigue that goes along with RA and Lupus was majorly improved/lessened.

I read that the second round of infusions is usually more effective than the first. Don't know why.

Some of the good effects seem to be wearing off by now, and the doctor did say that it's not unusual to repeat the infusions every 6 months or so. You might want to give Rituxan another chance.

Note; I should add that I do not have much joint damage in my hands. For me, RA and Lupus seem to attack tendons and other body parts more than joints per se.   I just had a total hip replacement, for avascular necrosis caused by the RA and/or Lupus.

Cat E. Clysm2008-11-25 20:55:32The problem here is that every DMARD whether it's Rituxan or Arava take time to either work or not work. And yes, maybe since you have such damage, adding something else to work alongside the Rituxan but I have no idea what. You obviously need to be talking about this to your RD but if you are seeing one that doesn't work in partnership with you, then that makes everything more difficult. Hi Shelly, just a bit of friendly advice, your'e fatigue seems extreme, and I know that fatigue is part of our disease, I suffer from it all the time, but just lately and once before, my extreme fatigue has become unbearable, I absolutely cannot get motivated to do anything, I keep putting everything off and can't hold conversations even! I had my iron and ferritin levels checked and they are almost non-existent, so my GP is ordering an iron transfusion, next weds, she said it is anaemia of chronic disease but I am unable to absorb iron through diet or pills, so this is the way we have to do it. I did it once before and it made a helluva difference, so beware, it may have something to do with your iron too.  Best of luck with the Rituxan, I am starting soon too! Hugs Janie. PS So sorry to read of your family's sad news.Hi Janie,
Yes, that's right. I am anemic too and for the same reasons as the doc told you. I take iron and also take magnesium. they help a lot. it just seems the rituxan magnified all of the ra symptoms initially and added the musscle weakness/pain, unless the solumedrol did that. it also added headache, nausea, the facial swelling, but that was most likely the solumedrol at 100 mg. the symptoms lasted for a week then gradually faded. I am still experiencing some nausea but mildly. the hands still my area of concern, etc.
thanks for advice and sharing your experience with me. it really does help to know you are not alone in all of this madness with autoimmune disorders and the medicines used to treat them. thanks so much.:) take care.
Hi Cat E.

I am sorry about the loss of your sister. Leukemia is a mean disease. No I don't any medicine can work when dealing with that type of stress. You have to process the stress first. make peace with what has happened. Getting enough rest, eating right, taking vitamins, all of those things help, but very hard to do those things when you are grieving.  And it sounds like you had the emotional as well as a lot of physical things going on all at once or within a short time frame of each other. I am happy to hear the second round helped you tremendously. A little sunshine after so much rain.:) Thanks for sharing your rituxan experience with me. It is really helpful. Continued success on the rituxan.
Take care.
Shelley, just another thought...

Some DMARD's are touted to us as patients as going to 'give us our lives back.' I think it is very wrong to do that to any RA survivor.

The thing is we don't ever get our lives back. It's a mirage, a myth, a legend.

Why?

Because there is no life to 'get back'.

We still have our lives just as much as we did prior to our dx. We don't realise it and it's not always easy to see but it is truth.

Even without RA, life is in constant flux and flow. It's the nature of things. Things come and things go. There is a season for everything.

Part of our loss and grief at this life shattering disease is to try desperately to hang on to what we thought we had before RA. One can't ever do that. And we don't need too.

What we need to do is embrace RA with all it's challenges and live the life we have. It's not 'second best'. It's what our life was supposed to be, it's what it is.

Everyone on this planet has 'stuff'. Our 'stuff' is RA. And the challenge of that is how to live joyously and fully regardless of the ruddy disease.

I know often this is easier said than done but I do not speak without some wisdom drawn from experience. I spend everyday in some form of pain that is incomprehensible to the average person. Nearly four years post dx they are still trying to find a drug to stabilize me and I single parent a bright, bouncy six year old daughter.

Anyone here who knows me well has seen my stand on the edge of that dark, gloomy RA abyss and wonder if it was easier to jump off??? Cordelia2008-11-30 06:19:23
Hi Cordelia,

Thanks for your encouraging words. I know you are just trying to help. It is difficult watching another in pain. and maybe the disappointment in rituxan is what you sense and want to respond to.

While getting my life back was always my motivating factor for trying a new dangerous medication. I know that is no longer possible, not the life I had before RA. and while you make an excellent in that context, the life I want back now is my independence. I still think that is achievable with the right therapy. so the search is still on. as I said I am prepared to give the rituxan 3 months but I can tell you I knew the ebrel would help me the day OF the first injection. I really need something to work that quick in exchange for all of the possible horrific side effects I think it is a reasonable request. or within a few weeks at the most.. that was the reason I started this thread hoping to hear from those who have failed rituxan but is now successful with something else.

I turned to my 80+ year old grandmother after my first injection of enbrel at the end of that day and said I think I can go back to work now and I did after a year of being off work. It isn't the day to day living I have stopped living. I still wake up everyday breathing in the gift of life God has given me, making the absolute best of my situation of what I know to do anyway. Yet, I have been off work close to a year in danger of losing much, including my insurance that pays for the rituxan I am on now. but being a working productive citizen is what a lot of us have had to give up and is what a lot of us call life. I never had any intention of retiring even if I could afford it. My grandfather worked until age 84 and my grandmother until age 80, that is the life I will get back to one way or another.

Also, it wasn't that long ago I was a mom facing the challenges of caring for a small child and also dealing with RA. RA showed up a year after my daughter started to regress at age 2, my guess she regressed from the vaccines DPT in 1993. Many days caring for her I expereinced feverish RA flares. However, the strength of a lioness got me through to give to her some resemblance of a normal life.. There is nothing you won't do for your child even in the middle of daily excruciating pain. somehow you find a way. Now I do it for me and my independence. making the best of a crazy situation. that's all any of us can do. take care.
Shelly, thank you so much for your kind words. I am still struggling to accept and deal with the loss of my sister/best friend; truly the hardest thing ever in my life.   Time helps, I know, but not much, at least not yet.

I sincerely hope you can get some relief for your own situation. "Making the best" is about all most of us can do; that and trying to take it all one day at a time.

Copyright ArthritisInsight.com