Starting Rituximab infusions for EGPA/Churg-Strauss

[grindhaus]

Help! I'm starting Rituxan infusions next Monday and I'm apprehensive.

My EGPA-ChurgStrauss was being controlled (sorta) by prednisone (up and down a lot but was tapered to 8mg) + 150mg Azathioprine, plus a host of others meds for related... seemed ok for about a year. Recently, after a difficult winter of stubborn respiratory infections, I had been more and more exhausted. Some days I couldn't function at all. Recent labs showed my eosinophils are climbing again. Rheumy wanted to go with something stronger and I opted for Rituxan instead of Cyclophosamide(sp?).

So I read up again on it and now I'm a little nervous b/c I'm one of those people who is allergic to everything and tend to react by swelling up like a balloon...

I'm ready for it to start though, b/c I dont feel well and I hope this helps. I'm hoping to hear from folks who have been through it and what their experience was like and if it helped their condition. - thanks all- G

[Boffy08]

Hi there, Im about to have my 3rd treatment of rituximab and it has really helped me a lot. I must admit, when I had the 1st infusion, I did react slightly and they had to stop it for a very short period. I’ve had no problem since. Everyone else I have spoken to seems to have sailed through the infusion stage of the treatment without to much bother. This time I did go down with a chest infection a few days after first infusion but it hasn’t happened before. For me, it usually takes a few weeks after the second infusion for the full benefit to take effect. I do suffer a little with mouth ulcers and fatigue for a couple of weeks afterwards but it really is worth it to feel well again. Any joint pain seems to disappear really quickly but lungs take a little longer to heal. I have GPA by the way. It has been a great treatment for me and hope you see the same improvement when you start the treatment.

[amms43]

I am on my third year of Rituximab. All reactions for me have been good, a little fatigued for a few days after the infusions but basically no problems at all. My cousin who suffers from many allergies, was also treated with it. On her first infusion she started to react so the infusion was stopped for an hour or two and then restarted much more slowly and she had no further problems. She completed her course and has now been in remission for over two years so safe to say it worked brilliantly.

[DevonLottie]

I'm having my maintenance dose on Monday. It is a long and boring day so take plenty to keep you occupied. The result has been fantastic for me and many have renamed it unicorn juice!! They will give you piriton before to help with any allergic reaction and start slowly, monitoring you every half hour before increasing the dose if you are tolerating it so try not to worry.

[jgold]

I've had two Rituximab infusions with no problems at all - neither on the day nor afterwards.

On the day, practice here in the UK is for a nurse to check you every 30 minutes, and a call bell is available in case of problems between times. I see you are in the USA. I'd be surprised if the practice there is any different, but you may want to ask about this before you start the first infusion.

[michichgo]

I've received about a dozen infusions; I receive two maintenance doses every five/six months. Side effects during the infusion itself are mild to non-existent. I recommend hydrating well the day before and after your infusion. I read the recommendation on the Rituxan website and its made a difference for me. Personally, I like listening to music through headphones. It helps to pass the time. Be well.

[grindhaus]

Thank you all for the great replies and advice! You reassure me very much. I'm sure I'll be better after the first one when I know what to expect. I also hope that it helps keep things under control. I'd sure like to get off the prednisone or at least where the dosage can go below 5mg.

[grindhaus]

UPDATE- POST INFUSION

Ok, so some of my fears were not unfounded. It all started out very well. They followed the regular protocol and premedicated me with acetaminophen, diphenhydramine (Benadryl), and Solumedrol (Methylprednisolone). waited 20min and then started the infusion. It seemed they planned to step up the rate every 30min. I waited... everything's ok, cool, cool... They gave me a lot of Benadryl 50mg is a lot for me... I got sleepy and curled up under the warm blanket. About 1.5 hours in and maybe in the 2nd or 3rd rate increase, my left ear started to itch and burn... then the right, then the left again... then the top of my scalp itched furiously. Oh no... mentioned it to my nurse when she came by... How long has that been happening ? You have to tell me these things right away! The nurse practitioner was called, then it started to escalate, my chest started getting tight. They stopped the infusion and administered more antihistamine and solumedrol. I got more dizzy and confused and kept telling them I was fine. Slurring from drugs and reaction, "I don' need the Epi!! I kno when I need the Epi- when I an't talk anymore!- I'm fine! ...just... get tis chair off my chest..." They were looking at me hard, No, dont' think you're fine... call Adult Emergency... then a team shows up- It was about 15min later when I got into a bathroom and saw my face in the mirror, swollen, blotchy red rash spreading down my neck, across my chest... oh yeah, I was FINE.

It took another 1,5 hours to stabilize me. Then I spent 2.5 hours practically begging to go back to the infusion center. I appealed to my attending, he says nooo, this was MILD anaphylactic response, and you were premedicated... you are done for the day. The Infusion center wouldn't take me back. I spent 3 hours in the infusion chair and 4.5 hours in the ED. Didn't get even close to half dose. And they were not happy that I drove myself to the Center. My Prednisone dose is doubled to 40mg and I'm supposed to load up on antihistamines all week.

Well, we're supposed to try again next Monday. Go slower? More premeds?