cyclo and now rituximab

[kulharv]

well after 7 treatments of cyclo i have now graduated onto rituximab.
i've missed being on the forum but didn't have the energy to post anything but I thought that i would like to share what has happened so far.
after 7 treatments of cyclo and prednisone was finally tapered down to 5 mg daily plus the other wonderful stuff. I thought I was feeling better but then noticed extreme shortness of breath just before my 7th treatment as well as a cough. i, lilke an idiot, self-diagnosed myself, as pheunomia(?) after my infusion the next day, i coughed up some blood, looked like clots, and still thought ok, i'll keep an eye on it. Next day well I coughed up a lot of blood and ended up in emergency with pulmonary hemorraging in my lungs. this was determined by a chest x-ray. a broncialscopy was done and this further confirmed that my lungs were filled up with blood. Immediate treatement was IVIG-immune globlin, daily for 5 days to stop bleeding and now rituximab for 4 weekly treatments. 2nd treatment is today. my prednisone as again been increased to 50mg daily, split am and pm, so back to no sleep.
I have noticed severe knee pain which i hadn't before and would like to know if anyone has had this also. As well after eating it seems that nothing really gets digested!

Also MRI of brain was done as i was having extreme headaches and this came back negative so the brain, it seems is okay, so far, but I wonder at times!!!!

Hope everyone is doing well as it has been a while for me.

Take care

Harvi

[Chris G]

That sounds like an aweful ordeal! Glad to hear you're getting some more agressive treatment (sorry about the pred increase though).

[Sangye]

I'm sorry to hear about that, Harvi! The knee pain is most likely from the active Wegs. It's a common symptom.

I haven't heard of IVIG being used to stop pulmonary hemorrhaging. When I've had it severely before they use pulse steroids for 3 days (ie, 1,000 mg solumedrol-- the IV form of pred).

I hope the rtx works well for you. Please keep us updated.

[kulharv]

Hello everyone,

Rituximab has been good, no real side effects that I can feel or see. I'm not huffing and puffing after going up or down 1 step, thank god!! My knees and other pains that came about after the 1st rituximab treatment, I was told, was due to the prednisone. I have since started to taper down on it.

I have now had 4 weekly treatments and will see my specialist next week to see about further treatments. Right now I am on 35 mg of prednisone, tecta, folic acid, and then calcium and vitamin D and actonel 1 x per month.

I have started to notice that when I blow my nose what comes out is pretty gross looking, I don't know if that is part of the WG or part of my sinus problems that had started.

Hope everyone is doing well.

Take care for now!

Harvi

[Chris G]

I have started to notice that when I blow my nose what comes out is pretty gross looking, I don't know if that is part of the WG or part of my sinus problems that had started.

I'm happy that the rtx is working for you! It's been a miracle for many of us here. I hope you continue to improve daily, and can get the nasty pred back down to 5mg in no time. As for the nasty stuff you mentioned, it's likelly sinus problems caused by wg. It may be that the treatments are opening up your sinuses and allowing the nastiness to drain. Had you been plugged up before treatments???

[kulharv]

hi chris,

yes, i was very plugged up and it got worse as i reduced my prednisone even though i was still on the cyclo treatments. I have noticed that my sinuses have cleared up since my dose of prednisone has been increased again or it could be the rtx as well.

thanks for the feedback!

harvi

[elephant]

My wegeners specialist Dr. Langford told me that people who have wegners with sinus involvement have a harder time getting off prednisone. The sinus like prednisone.

[kulharv]

Elephant,

URGGGHHHH. I need to reduce the prednisone and am now down to 30mgs. I guess that I can live with a small dose, as if I have a choice!

Have you heard of anyone having problems with numbness to the foot after their RTX treatment? That is my new problem and am scheduled for a bone scan tomorrow. My right foot has a small rash on top and is numb as well as my big toe and the toe next to it. The whole foot is painful and have been given percacet for the paid as well as my GP had given be gabapentin as it appears the nerves on the top of my foot are somehow effected.

Let me know if yourself or anyone has had similar symptoms or knows of anyone that has.

Thanks!

Harvi

[Al]

Sounds scary, yucky, and annoying, Harvi. Let us know what you learn.

[elephant]

What does your rhuemy think? A neurologist could give you a better answer or even run some nerve test on your foot. I think it is the side effects to the medicine or Wegeners. Get to the bottom of it and ask why? Many docs just want to hand you a prescriptions and send you off on your way.