Rituxan and serum sickness

Anyone have it? I'm interested in your stories.

Caitlin had a suspected, but not a confirmed case of serum sickness. She was able to do 3 out of 4 infusions. Her doctor did not want to risk doing the 4th infusion just in case it was serum sickness. Here is basically what happened with her treatment:

1st infusion-halfway through the infusion, she developed stomach pains and a slight fever. Her doctor did not think the stomach pain had to do with Rituxan. They slowed down the infusion just in case. The fever stayed two days.

2nd infusion-uneventful. Kept at a slower rate due to the symptoms she developed with the first infusion.

3rd infusion-that morning before the infusion, she kept saying her hand hurt and that her throat was starting to hurt and she just didn't feel that good. She did the infusion and more than halfway through the infusion, the nurse felt like she was doing well so they sped up the infusion. Caitlin started feeling bad but didn't want to say anything because she saw that they were almost done. She slept the whole way home and said her head hurt. I gave her Tylenol and that night, the pain she had just kept getting worse. Her hands were hurting really bad and her hips started hurting. She went to bed and the next morning, she could barely even get out of bed so I immediately called the dr and they had us bring her in that afternoon. They ordered a CT scan to rule out a head bleed because her head was hurting real bad and she was also having difficulty walking right because of the pain in her feet and knees. After they ran the CT scan (it was clear) and the labs...they said nothing out of the ordinary showed up, but they could clearly see that she was in pain and she had a fever. Her dr consulted with some other drs who agreed that it was possible serum sickness and she said since her count was only 16, there was really no reason to go with the final infusion.

Caitlin was put on 120 mg of Prednisone and this really did wonders in helping her feel better almost immediately. It was probably the one time that I was so thankful for Prednisone because I knew it helped take the pain away.

I had an allergic reaction. I spoke with Dr. Liebman at conference and he said an allergic reaction is a serum reaction. He seemed to suggest if I understood correctly that what I had was a mild version of the extreme allergic reaction like Sandi and some others had.

During my second infusion, the second time I had Rituxan, they had to stop the infusion for a while because I had extreme chills. This isn't that weird for Rituxan except I'd never had anything like it, absolutely no infusion problems before. Then that evening I got hives, head to toe, along with my usual (but increasing each time I had an infusion) flu like symptoms and heartburn. I didn't have the joint pain that others got. The hives lasted over a week and didn't go away until I took steroid.

Dr. Liebman said I should not ever have Rituxan again or I risk anaphylactic shock, extreme allergic reaction.

One thing about what I had was that with each infusion I had a stronger reaction, and sooner. The first time I had Rituxan I was fine until about a day or two later, then I had flu symptoms. These got stronger and sooner with each infusion. This is the opposite of what is usual which is a reaction to the first infusion and then no problems with subsequent ones.

Despite the reaction I've had a lasting remission of two years now from those two infusions.
Erica

I'm re-posting this from the lupus/ITP forum:

I received-
IvIG Tues, April 13
Rituximab #1, Tues, April 20
Rituximab #2, Tues, April 27
Rituximab #3 Tues, May 4


Last Thursday (April 29), I saw my rheumatologist. She had me taking 800mgs/day of Plaquenil for the previous 7 weeks, when I was supposed to be taking 400mgs. It was a miscommunication between her and the pharmacist, which we just discovered. She told me to just take 200mgs/day from then on, so I dropped the dose by 1/4 starting that day.

All day Thursday and Friday I felt fine, until I woke up Friday at midnight. I got sick, and felt achy, but it wasn't too bad and I managed to get back to sleep after an hour. I didn't feel great on Saturday morning, and canceled my plans for the day.

I woke at midnight on Saturday, and was SOOO sick. What initially woke me was this intense heart/chest/lung pain that I still can't quite articulate. I have never had indigestion, but maybe that is what it most closely resembled. I vomited, and felt the worst muscle and joint pain/weakness. My boyfriend barely lifted me into the car to get to the ER. By the time I got to the hospital, I had swollen hands and feet, splotchy red rashes on my feet, knees and hands, and completely paralyzing myalgias throughout my entire body. My neck and upper back were especially bad. I couldn't move my shoulders, lift my head, my hands were frozen in fists, wrists and elbows stuck at an angle. I also had a low grade fever (38-39) throughout. I found the jaw pain especially interesting, since that developed last with me, and after I had started the high dose prednisone. I couldn't do anything but blink and swallow, and I have never felt so helpless. This lasted about 50 hours.

I also had a very sore throat during this episode, which I also experienced for about an hour during my first Rituximab shot, when the benadryl wore off.

First, I was given the equivalent of 20mgs of prednisone through IV at ~2pm Sunday. That eased up my hand tension and some of the myalgias, but I was back to being paralyzed the next morning at 5am. Then I received an oral dose of prednisone 60mgs.

My rheumatologist and hematologist are both on vacation, and back this week. All of the other doctors seem to think it was the Plaquenil dropping so fast, but after reading about serum sickness in the past 2 days, I'm convinced it was what I experienced.

Has anyone heard of heartburn or chest pain associated with serum sickness?

Penny, I had that after every infusion, usually starting in the evening after the infusion. It lasted several hours and I was ok by morning.
Erica

I have reflux, so I pretty much have that all the time. Are you just getting that now?

Hi, I'm new here and about to start Rituxin. I've had ITP and SLE (lupus) since I was 16, I'm 29 now and I've tried it all. IVIG, steroids, platelet transfusions, splenectomy everything, but my platelets constantly drop to 0. I spent almost all of 2008 in the hospital and was misdiagnosed with hodgkins lymphoma 3 different times. It was actually just a lupus flair, but it took 3 different surgeries plus the splenectomy to figure that out.

Rituxin seems to be my last choice. I don't know what serum is, can someone explain it? I'm pretty nervous about this.

I'm running out of steam here.

This started last Saturday (10 days after 1st Ritux shot), and was what initially woke me up that night. I've never had heartburn or indigestion, so the best way I can articulate this is the feeling of difficulty swallowing, but in my chest. I hope that makes sense. It doesn't really hurt, it's just really uncomfortable. It went away after I was admitted and given 60mgs prednisone. An EKG was done, and it read normally.

I'm still on 40mgs of prednisone now, so even if it is serum sickness, and despite getting the 3rd shot this past Tuesday, I'm sure the steroids are going to keep me from getting really ill again.

Hi Danielle,

Read this thread: www.pdsa.org/discussion-groups/20-lupus/956-newly-diagnosed-wsleitp.html?limit=10&start=10


Sandi has some very helpful links at the bottom of that page.

I'm not sure if I had serum sickness, but I will discuss it with my hematologist on Tuesday before I get the last Rituximab infusion. If it works to keep my counts up, I would go through the serum sickness again, even though it meant increasing my prednisone dose to where it was 2 months ago.


Also, when did you have your splenectomy?

Now I'm starting to wonder one of two things...does having SLE decrease your chances of a splenectomy working? (Does anyone on here know someone who has SLE and their splenectomy was a success?) And if you have SLE or may be in the process of getting it, are you more suspectible to getting serum sickness? Even though Caitlin doesn't have it now, it is always at the back of my mind and it will be until the rheumatologist tells me she definitely does not have Lupus or a chance of developing it.

Danielle, I'm not trying to scare you or anything...but my daughter is 12 now and she had possible serum sickness with Rituximab. She does have some things that may be indicative of her possibly developing Lupus sometime in the near future. I hope it never happens though! Even though you have SLE, it doesn't decrease your chances of it working to bring your platelet count up. With counts of 0, I would be doing anything to try to bring your count up and I truly hope Rituximab does the trick for you. Just be aware of the symptoms for serum sickness and get treated if you do have it. You just can't have it again if you do develop serum sickness. There are other treatments that you can look into if Rituximab doesn't work for you, but I don't know if it is a good idea with SLE. There are people who have success with Nplate or Promacta after a failed splenectomy.

Penny:

Serum sickness can get worse every time you are exposed to the drug. My second time was much worse. My counts are up, but I do not think it's been worth it. I haven't been the same since.

As I said, if Rituxan is going to work, you won't need the last infusion. 4 is not a magic number.

Pauline:

One thing I do know is that having serum sickness triggered Lupus for me. I was fine before...never the same after. That was when my labs went bad and all the physical symptoms began.

As for SLE and splenectomy...having the spleen removed with SLE can become a problem for two reasons. If a person has APS antibodies and no spleen, the chances of clots are greater. Also, the spleen is a great filter and people with SLE have problems clearing dead cells from their bodies. It accumulates as waste and causes inflammation and illness. The spleen helps with that.

Sandi...do you know if having APS antibodies can change? I know Caitlin was tested for this within her first year of diagnosis and it was negative. We go back to see her rheumatologist in about 3 1/2 weeks so I am sure they will run a whole other battery of blood tests to see if there are any changes from the first round. Caitlin's hematologist does want Caitlin to move forward with the splenectomy sometime this summer, but wants the rheumatologist to approve. Her hematologist also said that there are some medications you can't take for Lupus without a spleen and the choices become more limited. Her first hematolgist seemed much more worried about her ITP being secondary to something else, but this hematologist really doesn't seem to think anything else is going on as long as Caitlin isn't complaining about joint pain.

The last few times, Caitlin's labs looked pretty good. So the Rituximab/serum sickness doesn't seem like it affected anything with her labs. Now that she is back on the trial, all they are checking for is platelets, so we no longer get her wbc and all the other stuff that they check except once every 3 months.

Back to the APS antibodies...who checks for this? The hematologist or the rheumatologist?

Sandi, how long did your first response to the Rituximab last? And the second time around, did you receive 2 or 3 of the infusions?
I didn't realize that your lupus symptoms developed after Ritux. How long did you have ITP before developing your other lupus symptoms?

I'm so surprised that serum sickness is overlooked in seemingly obvious cases.

Thanks for the info!

I had my splenectomy in November of 2008. My platelets stayed up and healthy for a year and 5 months. I found myself in the hospital again last month (April 2010) with below 0 platelets and getting ivig again.

Danielle,

Sorry, I'm really new to all of this- do you know why a splenectomy was performed before trying Rituximab/Rituxan?

I spoke to the head nurse in hematology, who said she'd speak with my hemo doc before the end of the day. If I don't hear from her, she said to come in for shot #4 tomorrow.

She didn't seem to think I had serum sickness, because I've had the 2nd and 3rd shots now, and am fine. I told her that's probably because I'm taking 40mgs of prednisone again.

I get the feeling that I'm not going to hear anything, and have to show up tomorrow morning.

Pauline - funny you should ask who checks for APS antibodies. I asked my Rheumatologist and he did. When it was positive, I got pushed back and forth between the Hemo and the Rheumatologist for months as to who was going to monitor and treat it. I finally put an end to it and said "Someone has to do it" and got referred to a second Hematologist who was more familiar with it.

Yes, the antibodies can change. Mine go from positive to negative and back again all the time.

I think a doctor who looks at the big picture is very astute. I've always been surprised at how many doctors, including Rheumatologists, ignore a patient's labs because they don't meet the criteria for Lupus even though they seem to be on a possible path. It's happened to me. Caitlin may never get a Lupus diagnosis. I've said this before. But she does meet a few criteria and I think that should be taken seriously by all of her doctors.

Penny:

My first response lasted about 13 months. The second time, I only got one infusion and then got hit with serum sickness again. It came much faster that time.

I had ITP for 8 years before being diagnosed with Lupus.

Yeah, serum sickness is often overlooked and undiagnosed.

I got serum sickness the first time after the third infusion and because I was misdiagnosed, went and had the fourth infusion. No one knows why I didn't get sick again that time, but it could have happened.

PennyLane,

I think they went with the splenectomy because I asked for it. No one mentioned much to me about Rituximab/Rituxan until my recent platelet count. My Rheumatologist told me that they are reluctant to give Rituxan because they don't know the long term effects yet since it's a relatively new drug (mid 1980's?), but who knows. I get bounced back and forth from a rheumatologist problem to a hem/onc problem. No one seems to know where to put me.

I'm getting my counts today and will find out if/when I start the Rituxan.

Sandi...I'm sorry you had to be the one to say something when it came to deciding that something needed to be done about your APS antibodies! I don't want Caitlin to be shuffled back and forth between the hematologist and the rheumatologist. I feel that way with my primary dr and my nephrologist. Neither will allow me to take medication or treat me until I've seen the other and sometimes I am in pain and I need meds that moment. It's frustrating! So I guess the saying is true that the patient is the one who has to take charge all the time, not the dr. Sometimes it would be nice to feel like a kid again and not have to make so many decisions on a daily basis!

Danielle,

That's interesting about your doctor's hesitation with Rituximab. With my hemo, it seemed like her first choice, to be commenced right after the prednisone stopped holding my counts (unless I'm taking 40mgs/day or more, yeah right). I can sympathize with bouncing between different specialists!

What was your count today?



I went in and had my fourth Rituximab infusion today. My hemo wasn't able to come see me, but she communicated with the head nurse that I was to go ahead. I felt mostly fine, except I had that slight chest discomfort, and a dry throat. I was pretreated with acetaminophen and benadryl, and took my 40mgs of prednisone an hour before. Tomorrow I taper to 30mgs.

The great news is that my counts are 217!! That's up from 38 last week, when I was admitted for the serum sickness.

That's a great count!

I got my number today and it's still up! I was at 245 2 weeks ago right after the IVIG, 50mg of azathioprine and 60mg of steroids. Today I'm at 104 and on 20mg of steroids and 100mg azathioprine. So, my doctor is not going to use the Rituximab for now.

Pauline:

I find that I am constantly pushing for my own care. I have a great Rheumatologist too at a Lupus research hospital, but I still have to stay on top of things. I'm always asking for tests and retests on certain things. For example, a year ago my Vitamin D level was low - 18. I asked for that test in the first place even though they are actually doing a study on Vitamin D and Lupus patients. When I finished the prescription Vitamin D and had another test done a few months later, I got all of my results except the Vitamin D because it wasn't back yet. I didn't bother to ask for it - assumed it was fine. I did ask at my last appointment what that result was and - it was 20. Barely went up after high dose Vitamin D. Nearly a year after it all began, I find out that it's still low. I just got tested again and will probably be back on prescription when that result comes back. Anyway, I always have results sent to me and go over them myself. If something is on the low end, I treat it. I'm finding that most of my Vitamin levels are bottomed out...don't know why. But again, I have to always ask for those tests. People complain about being tired, but who really looks into this stuff? You get shrugs. I don't have time in my life for this - check things out and find out why! It could be a simple fix. I take mega doses of individual vitamins and find out that the levels are still low. WHY? Most people get by on a One-A-Day, and those are crap. Boy do I have the stories!

I don't really mind taking charge - I'm so used to it. Luckily, most of my doctors are open to my suggestions. What's funny is that usually if I suggest something, we find out it's a low level and was warranted.

Penny:

I am darn near speechless. That rarely happens. I cannot believe that your doctor went ahead with that treatment without talking to you. Does anyone realize how serious a serum sickness reaction can be? I'm not positive that you had it, but I'd bet you did from the sounds of it. She should have spoken to you. I couldn't even believe they wheeled you down for a treatment while you were so sick. Getting Rituxan on time is not crucial. Finishing the treatments is not crucial. I hope you end up okay.

As it turned out, you didn't need it anyway.

Danielle, if your doctor hasn't already considered it you might ask about having a lower dose of rituxan. Four doses of 100mg has been shown to be as effective as the much higher dose usually given for other blood diseases. Fewer side effects that way.

www.haematologica.org/cgi/content/full/93/6/930

Yeah, I feel like a random number in a clinical trial sometimes. I really wish she could have found a few minutes to speak with me. Before starting Rituximab, I even brought up the study that used a lesser dosage with the same efficacy. She hadn't heard of it, and didn't agree that it would work.

I am meeting with this hemo next Thursday, and I plan on asking her why she does NOT believe it was serum sickness. I mean, temporomandibular swelling?? How much more specific can you get??

I guess I'm going to have to be more assertive from now on, and press for answers.

PennyLane-I agree with Sandi and you have to be your own advocate because the drs have many patients and sometimes they don't really pay attention to anything other than the one thing you are there for. I was lucky that Caitlin's doctor didn't take chances just because she had a few of the symptoms of serum sickness. I am glad to see that the Rituximab has brought your count up and I hope it stays that way!!

Sandi-I hope everyone listens on how important it is to watch things, especially when something doesn't feel right. I just got a copy of my recent bloodwork and I guess I've been so focused on Caitlin that I haven't been paying attention to what is going on with me and it shows on my bloodwork (my work does free wellness checks every 2 years). Ugh...I've got to make an appointment to see both my nephrologist and my primary within the next few weeks. I'm sure they will just tell me I need to go on a diet, lol!

Guys - I hate to sound like an alarmist sometimes and stir you up. But I've had times in my life when I saw something strange, didn't speak up, should have, and saw a harm result from my silence. I always feel it's best to err on the side of caution.

Benefit vs risk is the game we all play here. If you see that the possible risk outweighs the possile benefit, don't do it. Penny, in your situation, I saw things this way: Could any harm come to you from NOT having the treatment? No. Could any harm come to you from having the treatment? Possibly. Simple.

Yes, please speak up for yourself. I know it can be intimidating, but this is your life. If you think something isn't right, make it known. Squawk like a chicken.

Pauline - yes, get your appointments made! I always tell my daughter she isn't allowed to visit me until she makes her appointments and gets tests done. That goes for you too.