Rituxam in combination with other meds?

[crm1209]

I've been on prednisone for a year now (typically 12-15 mg/day, going up to 20 during bad times and then tapering back down) and I am also taking plaquenil, 6-mp (for 6 months; in lieu of Imuran, which I couldn't toerate), folic acid, and actonel. The 6-mp dose is 75mg; my white cell count dropped quickly when we tried to go to 100, so I've been at 75 for a while. My rheumatologist is concerned about the prednisone -- as am I -- so we're going to taper down and try to manage the symptoms with pain meds, muscle relaxers, stimulants (for the fatigue), etc. (sound familiar?). We're also going to try once again to increase the 6-mp to manage the symptoms better, as well as for its steroid-sparing benefits. If I can't tolerate the increased dose, or if it doesn't get things under control, then we're talking about trying Rituxan. I feel like we have a good plan, but it's also scary -- having to acknowledge that we haven't had much success in getting things under control and talking about moving toward an experimental drug (experimental for lupus, anyway). You'd think I'd get used to the emotional ups and downs, and I guess perhaps they're better than when this all first began, but it's still pretty overwhelming at times.


Anyway, onward to my question.... from reading past posts, I know that several of you on this board have tried Rituxan; would you mind sharing what decisions were made about the other medications you were taking when you started the Rituxan? Did you continue on all of your regular medications and just add Rituxan, or did you stop any medications prior to the Rituxan or shortly afterward? What was the reason for continuing or changing things? Most importantly, what do I need to know and what should I ask?

The reason I am asking is that when we talked about it, the rheumatologist indicated that because some of meds increase the risk for malignancy, he'd rather not prescribe them to be taken together. I'm familiar with some of the research on Rituxan, so I know some drugs are typically continued, but I was surprised to hear that some might be discontinued. Since we're just starting on this possible path toward Rituxan, I didn't ask for any specifics at the time, but it made me think I better get some knowledge so I can know what to ask and what to expect, and I can't think of a better source of knowledge than the collective wisdom of this group. style_emoticons/<#EMO_DIR#>/Thanx.gif I'm also one of those people who copes better with information -- so the more, the better! style_emoticons/<#EMO_DIR#>/smile.gif

Sorry for the long post, but I thought the background info might help.

Thank you all!

[lazylegs]

The decision to try Rituxan was a big one. I was already on prednisone, plaquenil, and cell cept. They were not enough. The choice was between cytoxin and Rituxan. My rheumy does not like cytoxin because of the many side effects. He is close friends with two doctors doing trials for Rituxan. The research looked very promising for my type of lupus. While attending conferences he spoke with university doctors using Rituxan off label. They were having similar results to the trials. Meanwhile I did what research I could on line. When the symptoms escalated out of control we decided it was worth a try. I did not stop any of the existing medications. The trials done had some of the patients on the same meds I was taking. I am presently tapering the prednisone. I have been prednisone dependant for years so I am hoping I can get off it this time.

Almost a bigger problem than the decision was getting it approved by the insurance company. They don't have to approve drugs for off label use. My rheumy teases that he had to give them two of his children to get it.

If you have any other questions just ask.

Take care,
Lazylegs

[crm1209]

Thank you so much for the helpful information. Like your Dr., mine would like to avoid the toxicity of Cytoxan, if possible, and since Rituxan is available now it seems to be a reasonable (but still quite scary) option. The med. I'm wondering about is the 6-mp. Because of the possibility of increased risk for malignancy, I'm not sure if it should be continued or discontinued if we do the Rituxan. I trust my rheumatologist, but also like to be informed.

The option of rituxan was suggested because some of my CNS symptoms have not responded well to the usual cocktail of lupus meds. At each step along the way as we have tried new and different meds, it's gotten increasingly scarier that we can't get this under control. Now it feels really scary. On the other hand, the combination of the pred. 6-mp (even at the reduced dose) has helped a lot; this past year, especially the past 6 months, has been better than the entire past 3-1/2 years. So I'm scared but hopeful that I'll continue to improve. I just don't want to get my hopes up too high and then be devastated again.

Any words of wisdom or caution you would offer me going into this?

Thanks again,

Renee

[IBDOROTHY]

oh my gosh... this is exactly what i am currently up against. I have been on predisone for 2yrs. we have tried to stop but i crash and cant think or talk. although a higher dose in the beginning 20 mg has been standard. cut back to 15mg and wbc dropped from nearly 7 to 2.2. 3 weeks after going back to 20, it was over the 7 mark. my sle targets ms blood, skin and cns. luckly, no significant joint or pain issues right now. i have been on all the other meds, anit malrial etc and for whatever reason dr doesnt want to do the cyotin either. wants to do the rituxam also, if insurance will pay. dr is using it successfully with 5 ra patients. my lower back bone density tests have become worse from the initial test in 2004. so another big reason to stop the steroids. I too am concerned about that "24 hour death warning". Everyone likes to think it couldnt happen to me but I have ended up with this screwed up disease.... anyway, I have printed your letter and the responses so I can read them at a clearer, later time. Sometimes I dont understand things as well and have found through trial and error that it is just easier to what and try to do "whatever" later instead of becoming frustrated with the now results. thanks again for everything that you all have provided through this site and your wisdom and responese.

[lazylegs]

Words of wisdom I don't have. I had studied the available research, knew the risks and understood there were no guarantees. I only had two options and my doctors were recommending this one. They have always given me exceptional care and I valued their opinions.

Even though I knew this was what I wanted I was a bundle of nerves the night before and the morning of the treatment. It would have been that way with either treatment. It is a long day. My first infusion took 6 hours, the second a little over 5. The hospital provided lunch, not all do. Fortunately I only had a fever, chills, body aches, headache and a sore throat for a short time. Aspirin took care of that. You could have an experience like Raglet though. An RA patient on his second round was next to me and we chatted the entire time. As tired as I was I couldn't sleep that night due to the other drugs they gave me to keep from having an allergic response. I had read in the MS forum about the exhaustion afterwards. Nothing was mentioned about that in the literature. I froze meals ahead of time. It was a good thing I did. I was awake for only an hour at a time for a couple of weeks. Finally I started forcing myself to stay awake longer.

There really isn't much research on how many rounds of Rituxan you can have. It only stays in your body 6 months to a year. Even if I can't have it more than a few times the relief I have experienced is worth it. I'm not living a normal life but it is better than the zombie I was before.

If you decide to go this route, get your insurance company to preapprove your treatment. They may turn you down. Mine said to try Cytoxin first. The doc fought with them for months before getting approval. Get a firm price also. My insurance company didn't pay the bill for 5 months and I was starting to get worried.

Any other questions just ask.

Take care,
Lazylegs

[IBDOROTHY]

Thanks lazylegs for the additional information on the fatigue. I live alone and family is out of state. I havent heard back from the dr but he seemed hopeful that he had enough documentation to justify trying the rituxam treatment. Wisdom comes in all forms lazylegs style_emoticons/<#EMO_DIR#>/smile.gif. Insight, expierence, kindness and the ability to see past ones own world and still have the willingness to share inspite of their situation, is wisdom of the soul.