Rituxan Side Effects

[Pete]

...so they put me on MTX too (side effects: minor fatigue for a day and hair loss, but nothing like you've been going through).

Hi Sunshine,

By any chance are you taking folic acid to combat hair loss? My rheumy put me on 1 mg/day of it to combat possible hair loss from mtx. Seems to work OK, although my hair is a little coarser now.

[NikkiNicole]

I take Folic everyday too. My hair was falling out. I also use Nioxin shampoo which nourishes the scalp. My hair is kind of coarse but it's healthy because the shampoo also strips all the chemicals off the hair from other shampoos.

[mrtmeo]

Being anca positive and with all of your symptoms, it sure sounds like you would qualify for rtx.
If that is what you want to do, please tell your rheumy right away because once damage is done, it's done.
Nip it in the bud and get this disease in control and don't wait.
If the dr doesn't want to deal with it, find another.

[Dkathleen]

Hi Nikki,
i had four weekly treatments of Rituximab February-March. I had a reaction, but Benadryl and Solumedral helped. It took about 8.5 hours because I had reactions when they attempted to administer it too quickly. It was not too bad, once they decided to slow it down. The last treatment took 7 hours. I have not had any other side effects. I believe it helped a lot. I hope you find something that works. If you are able, it is worth a try.

[Empty bucket]

I had Rtx treatments yearly in 09,10,11. Skipped years 12 & 13. While dosing I had zero side affects and Rtx has been keeping my markers where or close to where they should be. I'm having a flare now and it's been 2 years since my last treatment. I'm scheduled for another round of treatment in 2 weeks.
Your symptoms sounds exactly like what I had when diagnosed in 06. I did the Ctx,Imuran,Mtx, high dose of preds dance for 2 years then along came Rtx. He has been pretty darn good for me.
With all due respect to your Doctor(s) sounds like you need aggressive immediate treatment whether it's Ctx or Rtx.
I'm certainly not telling you to go for it but if you were my sister, daughter etc. I'm scheduling it for you right away.

[NikkiNicole]

I am just going to scream. Can I scream?
Last night, I had a rare night where I would be able to sleep ALL night long ... I woke up feeling like I was dying. My chest was being crushed, I could feel every rib, ever organ, everything. I was literally crying out in pain. It was horrible, I kept trying to stand up and stretch myself taller so that I could hopefully ease the pain. Nope. Dan finally woke up and demanded we go to the ER. I was in tears, screaming and crying.
So off we went.
Of course, EKG showed nothing. The doctor said he'd 'heard' of Wegener's but never dealt with it and really doesn't know what it is. He did blood work, asked what tests they usually do for me to check my markers. I got a Norco, was moved to a room for an X-ray and a blood draw ... I waited. The doctor came back in ... said he thought maybe it was a pleuritic spasm associated with Wegener's but ... he didn't know. And then he sent me home. As I walked out, he was leaving too.
Dan feels like he was rushing me out the door because he was going home.
Of course nothing showed up anywhere. He says my ESR and CRP were fine. I feel like they treated me like I was seeking pain meds and shoved me out the door.
I want to cry. I am so so so done.
The Norco I took is kicking my ass. I am dragging and feel like I can collapse to the floor and sleep for hours.

Has anyone else had a bronchial spasm or even a pleuritic spasm?

[Dkathleen]

I had severe pleuritic spasms the weekend before I was admitted to the hospital. I saw my GP several days prior and he gave me vicodin. He did an X-ray and it was fine at that time. He figured I was having back pains that were amplified by my fibromyalgia. One of the admitting docs said that sometimes these things occur quickly. The X-ray hit a strange window of time and that's why it was fine. Within days I started coughing a lot. I had trouble breathing and had a strange squeaky sound when I breathed in. They did a ct and initially thought I had lung cancer. After suffering over the weekend, they did a bronchoscope on Monday. They admitted me and eventually diagnosed me with mpa.

I am am sorry you are going through this. It is extremely painful. Please stay on them. It happened real quick.

[mrtmeo]

Praying for you that you get your meds changed to something that works.

[drz]

One time i had some strange pains that seemed in my lower rib cage and was told it was probably some irritation of lining around the lungs or pleuritis. I got the impression there wasn't much treatment for it and the pain seemed to subside in a few days.