Allergic Reaction to Rituxan?

Hi All,

I have Lupus and ITP. I recently had a relapse of my ITP - have been on Prednisone since August and did 4 rounds of Rituxan in October. My counts are currently stable, ranging between 120-140. It took quite a while for Rituxan to kick in - a good 8 weeks - but it appears to have worked for now.

After the second infusion, I had a reaction that my hematologist feels very strongly was an immune reaction related to the Lupus. I developed a low grade fever (which I had after all 4 infusions), severe joint pain, and a purpura-type rash covering both of my legs. After a 4 day Dex Pulse, I was much better and I handled infusion 3 & 4 just fine, with the exception of the low grade fever (which came hours after the infusion).

Since that "reaction", I have had moderate joint pain and stiffness in my knees, fingers, and feet. I suspected this was just a lupus flare, however, my rheumatologist thinks the reaction I had after the second Rituxan infusion was an allergic reaction to Rituxan, and he thinks I am still suffering symptoms from that allergic reaction. He theorizes that the Rituxan stays in the body for up to 9 months and therefore my body may still be having a reaction to it.

Has anyone ever heard of this? I discussed this today with my hematologist and he does not agree with this. He says an allergic reaction would not still be causing my symptoms some 8 weeks after the last Rituxan infusion.

My dilemma at this point is that my hematologist is currently tapering my Prednisone (down to 5 mg daily) but the rheumatologist wants me to stay on it until at least the end of April. The rheumatologist also suggested I start an immunosuppressive medication called Imuran to potentially raise my counts even higher (He would like my platelets above 200). I do not agree with this - I'm happy with my counts where they are - so I am not planning to take the Imuran and my hematologist is in agreement with me there. He said there isn't too much harm in staying on the 5 mg Prednisone a little longer, but of course, that is ultimately up to me.

I just find it very strange that the rheumatologist is so adament that I am still having effects from a possible allergic reaction to Rituxan. Anyone else every heard of such a thing?

As always, thanks for your replies.
Lauren

My daughter also had a severe allergic reaction, much like yours, after the 2nd Rituxan infusion. She did not get infusions 3 and 4 based on allergist's recommendation to discontinue Rituxan. Her counts also climbed to normal enough levels.

The serum sickness for my daughter lasted one week, after which all symptoms (rash, joint pain and fever) resolved. This is the typical course of serum sickness. I believe you are in a Lupus flare rather than experiencing continued effects of serum sickness.

Although my daughter has not been diagnosed with Lupus, she does have a positive ANA. In time she may develop Lupus, no one can predict.

At the PDSA conference last July, I asked Dr. James Bussel for an alternative to Rituxan and he recommended a new biologic called Ofatumumab. It is a fully (100%) human antibody against CD20 on the b-lymphocyte, and is used for treatment of Chronic Lymphocytic Leukemia. Because it is a fully human antibody, in theory, it should not cause serum sickness. Serum sickness is a reaction against the mouse protein in Rituxan.

Based on serum sickness posts on this site, I think there is a connection between Lupus and getting serum sickness from Rituxan. Most of posters on this site who got serum sickness from Rituxan also have Lupus. However, most Lupus patients do not get serum sickness from Rituxan. It's just the "lucky" few, NOT. I read somewhere b/w 10-20% get serum sickness from Rituxan

Hope this helps.

At the PDSA conference a few years ago when they were just coming out with the fully human version of Rituxan, I asked one of the doctor experts (forget which) if I could try it after I had a strong allergic reaction to Rituxan. He said absolutely not, it would be dangerous to do that.

I think this new drug would be a good choice if you have not had Rituxan or a reaction to Rituxan but proceed with extreme caution if you have already had an allergic reaction to Rituxan.
Erica

I would say it is possible that your doctor is correct. Most people have a reaction to the first infusion and than no further reactions.

Allergic reactions can happen at anytime and will resolve themselves when the trigger is removed and or treatment provided. Since Rituxan can stay in the body he my just be correct. That said allergic reactions usually get worse each reaction not 100% guarantee but can.

Another option is Serum sickness and for information on that I believe Sandi would be the best since I believe she actually had it.

Lauren:

It sounds like serum sickness. I've had it due to Rituxan twice. It is a delayed hypersensitivity reaction that occurs 14 to 21 days after the first infusion. I have Lupus also, and having serum sickness seemed to cause a lot of widespread inflammation that did not go away after a few days like it does for most people.

If you have any questions, please ask. I have been there, done that. Since the serum sickness, I have never been able to get off of Prednisone, and that was 8 or 9 years ago.

rttb1233 wrote: Based on serum sickness posts on this site, I think there is a connection between Lupus and getting serum sickness from Rituxan. Most of posters on this site who got serum sickness from Rituxan also have Lupus. However, most Lupus patients do not get serum sickness from Rituxan. It's just the "lucky" few, NOT. I read somewhere b/w 10-20% get serum sickness from Rituxan.

Very, very true. Most of the people here who have had serum sickness from Rituxan have Lupus, or are being monitored for possible Lupus. I've seen it going on since 2003.

Thank you all for your replies. I guess there really is no way to know what has caused this joint pain - it could be from the Lupus or the Rituxan. I don't know that I would ever try Rituxan again - I think the possibility of another reaction - which could be worse - is enough to make me say I'm done with it.

Sandi - you mentioned serum sickness, which I suspected when I first had the reaction after the 2nd Rituxan infusion. My joint pain was so bad during that episode that I could barely walk. After the Dex pulse, it got much better, but has not completely gone away. I know the inflammation in my body is elevated as my last sed rate was 85. Although, ironically, my sed rate has always been high - even above 100 - and I've not had joint pain in 16 years prior to this. I am concerned that the Rituxan has caused this joint pain and that I will never be "pain" free again.

How has lupus affected you?

I saw on another thread that you have taken Imuran before. My rheumatologist suggested I start taking that in an attempt to raise my counts even higher - he really wants my platelets above 200 for some reason - and I'm not sold on it. I kinda feel like my body is immuno-suppressed enough from Prednisone and Rituxan and I already run a low white count as part of my lupus.

I think you should consult a hematologist for the itp, the rheumatologist wanting counts over 200 is pretty weird.
Erica

I agree with Erica. I wouldn't care what count the Rheumatologist wants you to be. That is a little weird.

I think you had serum sickness. It is very severe joint pain....I could barely hold a cup or turn over in bed. Once a person has serum sickness, they should never have the drug again. I was misdiagnosed the first time I had serum sickness, so I had Rituxan again the following year. It was much worse that time. A person can actually die if exposed to the drug after a reaction, so if I were you, I wouldn't risk it.

Lupus: Neuropathy, Parensthesis, joint pain, muscle pain, fatigue, muscle weakness, swollen joints in hands, etc. Some of my medications have also caused damage.

I was never the same after the second serum sickness. I did get a bit better after the first one.

I'm glad I'm not the only one who thought it strange that my rheumatologist wants my platelets above 200.

For what its worth, part of the dilemma I have right now is that my rheumatologist and hematologist don't agree. The hematologist thinks my joint pain is a lupus flare, the rheumatologist thinks it is the allergic reaction from Rituxan. The hematologist is happy as long as my platelets are above 30 (I am in agreement with him), but the rheumatologist wants them above 200. My hematologist is concerned about the high level of inflammation in my body, but the rheumatologist isn't concerned about that.

I've had the same hematologist for 16 years, but this rheumatologist is relatively new. I've seen him for about 2 years now since my prior rheumatologist moved out of the area. I have decided to get a second opinion on my current situation. Taking Imuran to "raise" my counts when they are perfectly fine in the 120 range seems too crazy to me. My hematologist would never say it - but I'm could tell from the look on his face when I told him, that he thinks my rheumatologist is nuts.

Sandi - my lupus has manifested itself primarily with my blood. When I was first diagnosed at age 17, I had joint pain in my hands, combined with stiffness and swelling, that was almost unbearable. Several years later, the joint pain was gone but I developed ITP and then TTP. The ITP was under fairly good control until this past year. And I didn't have a recurrance of the joint pain until I had the reaction after Rituxan.

Thank you all for your kind replies. One thing is certain, I won't risk it by getting Rituxan again for my ITP. They will just have to try something else next time!

I am not a doctor, but having been through exactly what you are going through, this is what I think. The joint pain is not just a Lupus flare. Serum sickness causes inflammation for people without Lupus, so for someone with Lupus, it could be worse and will not go away as quickly. For someone with Lupus, having that kind of stress on the body can cause some long-term, widespread inflammation.

I would not consider Imuran to raise counts, but you might consider it to help with inflammation. I know the doctors disagree, but it could just be a good solution anyway. That is your call. I tried Imuran but couldn't tolerate it and it didn't help much if at all. It might help you. I find that usually, Prednisone is the only drug that helps joint and muscle pain.

It's odd that your Rheumatoloist would want your counts up like that knowing you've had TTP. I'd think you'd want to keep counts in a lower range. Did he give you a reason for wanting counts over 200k? Doesn't he realize that anything over 30k is okay?

Twinning, I would also find it troubling to have a rheumatologist and hematologist who are not on the same page. Perhaps your hematologist can recommend a rheumatologist with whom he/she works well, preferably as a team... unless you are comfortable with getting differing opinions and sorting out the differences yourself (yikes! enough stress already!).

Sandi - The rheumatologist has always said he would be "more comfortable" with my counts above 200, but has never really given me a specific reason why he feels that way. He actually tried to convince me last year to "treat" my then stable platelet count of 76K. I politely declined at that time, as my counts had been in the 70-90 range consistently for about 10 years, and told him that my treatment threshold is 30K. I have to believe that he knows a count above 30K is ok and he certainly knows about my history of TTP - we discussed it at length at the first appointment I had with him. For what its worth, he is located at a large hospital-based practice and is involved heavily in Lupus research. I think he knows Rheumatology quite well, but I'm not so sure he knows enough about ITP and hematology. I will consider taking Imuran for the inflammation. I had widespread inflammation before Rituxan, so maybe it is time I consider taking something to bring that under control. I'm a bit hesitant to take Imuran because of the potential risks (increased infection, liver damage) and side effects (on top of everything else, I have irritable bowel syndrome and don't typically tolerate meds well).

Rob - I totally agree with you. I am looking to schedule an appointment with another rheumatologist for a second opinion. I've asked my hematologist for some recommendations and will go from there. I would certainly welcome a "team" approach to all of this!

Thanks,
Lauren

Luckily, I've never had two doctors disagree. Good luck with the tug of war! Let us know.