Serum Sickness; Cytokine Release Syndrome; Infusti

Does anybody someone know if the terms serum sickness; cytokine release syndrome; and infusion reaction are all the same thing?
The Rituximab Monograph at Roche clearly discusses cytokine reaction syndrome or cytokine storm.
I am maybe starting to understand what happened when I tried the IVIG treatment and ended up on the floor at the hospital fighting for my life.
I would like to know more about these reactions and just what actually happens in any of them that anyone has experienced. Where you ever told why?

I am not yet convinced that Rituximab at any dose is okay for some.
It is a problem with a "storm" of autoimmune antibodies by a very overactive immune system.
Is this perhaps why I have had so much trouble taking medications of any kind? If so why would it be different the next time...or even with low dose rituximab?
thanks you, Sandy Too

Sandy - there are many different kinds of reactions, serum sickness is only one of them. It is always a delayed reaction meaning it usually occurs 7 to 21 days after using a certain drug. People can have immediate reactions to Rituxan and it can be mild and treated on the spot. Some have experienced a rise in pulse and difficulty breathing. That reaction is usually easily controlled. A few have experienced anaphylaxis which is always treated immediately. When someone has a serum sickness reaction to Rituxan, it is due to a sensitivity to the mouse gene that is used in the product. I had no problems at all during the infusions but got hit three weeks after I started them.

If a person is going to have a reaction like serum sickness, low dose wouldn't matter. The reaction will still occur.

medlineplus.gov/ency/article/000820.htm
this says it is a reaction similar to an allergy.

Sandy you realize that you can get serum sickness from other than rituxan? I had it thanks to amoxicillin, and it wasn't the 1st time I had taken amoxicillin but it was the last! Serum Sickness was horrible!!

Is this perhaps why I have had so much trouble taking medications of any kind? If so why would it be different the next time...or even with low dose rituximab?

I'm assuming you are just asking this to ask it not to get an answer. No one here could answer those questions for you.

You seem to have done lots of research and do not feel that rituxan would be a drug you should take - then you should not take it!

What I mean is, that if there is a physical issue that causes these kinds of reactions, does anybody know what it is? For example, there is mention of someone with selective IgA deficiency being contraindicated for the use of IVIG. maybe that's why I had the reaction I had with it.
So is there possibly anything similar physical thing that is known, with regard to chemo or any of the other second line drugs and these reactions. It's what I am trying to figure out, then I can make sure I am checked better this time before something was to occur again.
It sure would make things a lot easier to rule out any one drug that I might also be contraindicated to use. thanks, Sandy Too

Sandy Too, if I am following this discussion correctly, I think I read somewhere that one can be tested for Rituxan sensitivity before being infused. Does that help or am I barking up the wrong tree?

Melinda - yes, I know that other drugs can cause serum sickness. I thought Sandy was specifically asking about Rituxan though.

Sandy - I found the articles below. You might want to read through them. The thing is, I'm not sure if that first one relates to autoimmunity or specifically cancer cells. There is a difference due to tumor lysis which is over my head. I don't know if there is a test to predict all types of reactions. Since serum sickness doesn't usually occur until two to three weeks after starting Rituxan, a pre-test most likely wouldn't show up for quite while, if at all. I don't know if a drop or a shot is enough to cause a reaction like that.

Reactions can be so different. There was a woman here about a year or two ago who had a strange reaction to Rituxan. She had blisters all over her body similar to Steven-Johnson Syndrome. Her doctor just kept insisting that she needed all four doses and kept giving it to her. Unreal. I have seen other doctors do the same thing after a bad reaction. They insist that their patient needs all four infusions and give it no matter what happens. That blows my mind. Since some reactions can be severe and life-threatening, they are continuing a drug that could possibly kill the patient when the ITP it was treating in the first place would not have resulted in death. Not worth it. I'm telling you this because if you would have a bad reaction, you should refuse additional treatments. A slight reaction can be controlled and usually doesn't happen a second time, but reactions like anaphylaxis and serum sickness should be taken seriously.

www.aaaai.org/ask-the-expert/rituximab-reaction

www.verywell.com/allergic-reactions-during-rituximab-infusions-2252213

dailymed.nlm.nih.gov/dailymed/archives/fdaDrugInfo.cfm?archiveid=4952

I'm like you. I've had enough bad reactions to meds that I now take any new drug seriously. I have emphatically turned down other biologics suggested by my doctors due to drug sensitivities. I don't take chances any more. My Rheumatologist wanted me to use Benlysta in a bad way. I kept telling her no because of the possibility of serum sickness. She insisted that since Benlysta was not a mouse monoclonal antibody but was a human monoclonal antibody, I couldn't get serum sickness. I still said no. A year later she told me that serum sickness has been reported with Benlysta. I've already had serum sickness twice and cannot risk a third time.

Sandi, I said Sandy
And while yes she is concerned about 1 specific medication causing it, serum sickness can be caused by other meds she has ingested or will ingest.

Thanks guys. I did see the first study you posted Sandi but not the other two. They look good.
You are right this stuff is so far over my head that I am reassuring myself constantly that I just might not know just what I am reading so just remember that! :laugh:
I too was asked by the prescribing IVIG doctor to try it again...can you imagine? My GP just looked at me when I told her and said, no, we aren't doing that. I checked out the IVIG company today just to see what it said, their drug is called Gammagard, it's what I was given. Right at the top of the page it states very clearly the contraindications for IgA deficiency.
At least I think I know now why everybody looks at the ceiling or their shoes when I ask them what happened...seems pretty clear to me that somebody messed up.
Yes, you all must know by now that I have great trepidation around anything new, especially drugs.
I was given prescription iron today because the anemia is really bad, and I can't take iron! Plus I am to take it on an empty stomach...and right now while I'm on 25 mg of prednisone. I should be in a right mess in about 3 days. <<sigh>>
I must apologize for maybe driving that trepidation thing home a bit too much. I just hope I am as tuned in as all of you are going forward. Thanks, Sandy Too

Melinda wrote: Sandi, I said Sandy

Yes, you did. Not used to two Sandi's I guess. I used to spell my name with a "y" but I changed it in high school so my friends could distinguish me from our other friend Sandy. My mom still spells it with a 'y' so I'm used to seeing it that way.