Rituxan Update

[wordnerd]

I brought my laptop w/ me to the infusion so I'm getting it as I type.  So far the only problems have been headache and for some reason my oxygen was getting low and I could barely move or stay awake I got so tired.  But as soon as they put me on some oxygen I felt much much better.

I still have several more hours to go at least.  Kinda concerned why I'd be having low oxygen problems with it, but I'll keep you all posted.

Love,
Lauren

[lynnmarie219]

Yes, keep us posted Lauren! I hope this helps you to feel better soon!

[wordnerd]

Quick update:  Just got home.  Low oxygen problems resolved as soon as the infusion finished.  Right now I just kinda hurt all over and feel kinda like I have the flu.  Exhausted.  Hoping to get some sleep soon.  Get to do it all again in 2 weeks.  heh  <3 Lauren

[gurs]

Lauren, I just finished my second infusion two weeks ago and im feeling bad still. I had terrible back pain right after, that is just going away, but everything else seems worse than before..hope you have better luck!!

[Kimi]

Keeping you in prayer dear! Kimi

[wordnerd]

Thanks everyone for the well wishes!

Today i feel pretty horrible.  Like I have a very very bad case of the flu and a mild headache and a bit of nausea.  I hope I feel better in the next few days because i just have so much to do!

The doctor said that between 3-4% of people have oxygenation problems with Rituxan infusions, so I guess I'm just one of the lucky ones.  Anyway I get to do it all again on July 1st.

Falling asleep so I'm going ot take another nap.

<3 Lauren

[Scottietottie]

Hi Lauren

Happy napping and I hope you feel somewhat better soon.

Take care - Scottie 

[rnathans]

Hi Lauren. Thanks for posting. I hope you feel better soon.

I am in such a quandary about whether to try rituxan. It is the next/last thing for me to try.  I have maxed out on cytoxan awhile ago and have been on all the oral immunosuppressants with mixed results. They hold most things at bay but not my leg myopathy. And we don't even know despite our best efforts to find out- whether the worsening myopathy is due to an active disease process or progressive degeneration due to previous CNS damage (which rituxan would not help)On the one hand MD's and nurses keep reassuring me about its safety and low side effect profile. On the other hand that is not necessarily what I read on line.

To top this off today I was getting my monthly methylprednisone infusion and as I was finishing up the woman next to me was in the midst of having a reaction to rituxan-headache, chills, shaking, low BP. I know they started her out slowly, gradually increasing the rate. The reaction occured 2 hrs into the infusion.

When I left they were still tending to her. I plan to try to find out tomorrow when I go back for my 2nd dose of steroids how things  resolved and tease/seriously ask my nurse about whether she still stands by her statement.

[wordnerd]

I was having increasingly severe lower back pain, so I called the on call rheumy about it since it's a side effect to look out for.  He said I am probably having a bad immune reaction to the Rituxan.  He said to increase my Prednisone for a few days starting with 20mg twice a day.  He also said to take extra pain meds and xanax to help me sleep.  I took my first extra dose of 20mg this evening and already feel a tad better already though my lower back still feels at least as bad as when I've had double kidney infections.

Just thought I'd give you all an update while I wait for the pain meds and xanax kick in so I can go to sleep.

<3 Lauren

[Chickpea]

Hi everyone

I haven't tried Rituxan (yet) but I've had 9 months on CellCept which didn't help.  Now I'm about to start a course of Cytoxan/cyclophosphamide.

Ruth's hit the nail on the head - is that just a UK expression?! - with her query about whether worsening myopathy is due to an active disease process or whether previous cns damage just gets progressively worse.  How can we tell?  My neuro can't decide whether my 'episodes' are mini strokes or some form of epilepsy.  It seems to me that they have all the characteristics of strokes and after-stroke damage but he's not satisfied with that explanation.  So it means more tests ...

If it's all due to an active disease process then further treatment makes sense, but if not then what are our options?  Any thoughts?

Love to all - Chickpea

[gurs]

Lauren,

I also had severe back pain, especially a week after my infusions. I did take more prednisone, which helped a bit. Now, after few weeks, the back pain is almost gone.

For those who still arent sure about rituxan, the only thing I can say that really helped me was to have it run for 8.5 hours at a slow, steady pace...with the premed's.
150mg sole medrol, benedryl, tylenol, and of course, IV saline throughout the entire infusion.

I still havent heard any great news about rituxan for sjogrens or lupus.  My neuropathy pain actually seems worse,but I will wait another 2 months to see how things go?
Each person's body is so different..such a gamble, but then again, every medication is.

Gursie

[gurs]

Chickpea,

Have you had the cytoxan before? my rheumy mentioned that to me before.

[Chickpea]

Hi Gursie

No I haven't had Cytoxan before.  I've had 9 months of CellCept, and 10 months of Plaquenil and Prednisolone (tapering down dose from 40 mg daily to 20/15 at the moment).  Things are getting worse rather than better so they're going to try Cytoxan.  I start pre-treatment tests next week, and then three months of monthly infusions.  I'll let you know how it goes. 

What other meds are you on?  Have you found any analgesia that makes a difference?  I've been on slow release morphine for a couple of years.  For a while I was sure they'd given me a placebo but recently I've been aware that it's making a difference.  I was in hospital after an accident and the nurses were commenting on how much intravenous morphine it took to affect me!  Hadn't realised I'd become that acclimatised to the stuff!

Take care - Chickpea

[irish]

My immunologist is thinking about "maybe" putting me on a trial of Rituxan for my autoimmune diseases. He says that the drug knocks down the B-cells and almost wipes them out but that the bone marrow does replentish them at a lower number down the road.

He said that the large number of B-cells are the reason we have the autoimmune issues. It sounds good to me but I know that he won't put me on it because of my low t-cells. The IVIG I get helps some with the infections but I don't think I want to push it. There will be more meds invented down the road if I can hang in there long enough. Irish

[wordnerd]

Felt a LOT better today.  The prednisone seems to be kicking in.  I even dragged myself out to dinner and to see Up (which was wonderful btw).

Now I'm laying here with my lower back killing me again.  It was worth it though.  Sometimes a girl has to get out.

<3 Lauren