Rituximab questions

[Sharon]

I've read of the many benefits some SJS sufferers have had from Rituximab infusions.
It may be the next step for me so I have some questions which give me pause
for those here who take Rituximab:

1- I read that some people have fatal reactions to the infusions. How can I know I won't be one of them?

2- I understand that solumedrol 125mg is given with the IV. How much is that is Prednisone terms and how many times is it given (before, during and after)?

THANKS!

[zopdeep]

Rituxan was a god send for me for two years, then unfortunately it stopped working. It has a very low side effect profile compared to older immunosuppressants. I would go for it given the opportunity.

Not sure about the solumedrol because you are converting ml into mg. Google it, probably find an answer.

[Sharon]

Thanks Zopdeep, it's the IV reactions I'm concerned with.
In any case it's a load of steroids...are they given before, after and during?

[irish]

The solumedrol you will be taking is just a small dose. I took 1000 mgm solumedrol once a month for 5 months to help prevent the loss of hearing in my good ear.

The amount you take is not that much. It is only a few times a year with the number of infusions you will receive. I would not worry about it. Talk to your doctor about it. The solumedrol is an important part of this treatment. Good luck. Irish

[warmwaters]

When I did it, they did it before the infusion. Makes sense - they want to stop any possible reaction before it starts.

In my first infusion, I did start having a reaction - my stomach felt "odd" (don't know how to described, but knew it was wrong), and a creepy crawly feeling on my skin.  Immediately told the person who was running the infusion, she stopped, and checked with my doctor. My doctor had them give me some additional steroids (forget if it was the same or different), and then proceed very slowly. Which was fine. 

My thought out of this - if anything feels wrong, say something immediately.

[Sharon]

Irish- That's a lot of solumedrol! Does it leave the body sooner than Prednisone since it's through IV?

Warmwaters- Did you have any adverse effects after the infusion to either the Rituximab or infusion itself?

[warmwaters]

After the infusion I felt like I had the flu for a few days. This is relatively common, not dangerous, just the body processing this. The second infusion went more smoothly.

Unfortunately, I didn't experience much improvement on Rituxan, so I didn't do another round.  I had a mild boost of energy for about 2 weeks. For people for whom it works well, it can be 6 months! 

I think the important thing is to be working with a skilled infusion team, who has access to your doctor, or a doctor familiar with Rituxan. That's the best way to limit your risk around the infusion.

[Suslew]

Hi!
Regarding number 1- those that died from this drug (PML) were already really sick and on a lot of other very potent medications. It can happen, there's always a risk, but I jumped and rituxan has worked well for me. I get it every six month. It helps me with fatigue and brain fog, not dryness so much.

I did get a reaction with my first infusion, they added more steroids, slowed everything down and I haven't had a single problem since. The solumedrol is given just before the infusion of rituxan and is to tamp down any reactions to the drug. It can keep you from sleeping that night so you might want to have sleeping pills or a midnight project on hand. Also, low dose prednisone started a few days after the infusion can help with any feelings of sickness.

[Sharon]

Thank you warmwaters and Suslew.
I just stopped the Orencia because of terrible side effects and can't imagine what
would happen if I had a bad reaction to Rituximab but couldn't get it out of my system
for 6 months!
I know there's nothing left for me to try at this point but I just can't seem to tolerate any
medication.