Repeating Rituxan After Getting Serum Sickness

I was originally diagnosed with ITP in December 2007. I had it really bad. I went through first steroids, a dose of WinRho which almost cost me a blood transfusion, 2 rounds of IVIG and several days of IV methylprednisone. Nothing worked. Each time my platelets would come up and drop back down by the time of my hema appointment. I actually spent more time in the hospital than I did at home, which was really rough on my husband and 2 kids. My hema sent me to Dr. Busell at NY Presbyterian who suggested Rituxan. I took 2 doses which kept me in remission for about a year. I then relapsed in July 2009 in which I was scheduled for 2 rounds of Rituxan. However, besides getting shingles which I got the first time, I also got serum sickness which was a shocker as I wasn't familiar with this possible side effect and I was in excrutiating pain. Because of this my hema and rheumatologist cancelled the second round. This past Friday I saw my hema and was informed I'm no longer in remission and I need to prepare myself for another dose A's the last dose kept me in remission for almost 2 years. From my research I've learned once you experience serum sickness you should not have another Rituxan infusion. My doctors (hema & rheuma) say they can take precautions such as premedicating me a few days in advance. I'm just not sure. Has this happened to anyone of you, or does anyone have information on this. Right now my numbers are in the safe zone, but I usually drop really fast. Any feedback is appreciated. Thanks Kelly

There are other options. If it were me, I would ask my hema to try NPlate or Promacta first. You can read about them under "Treatments" on this website. They are called Platelet Growth Factors. They stimulate your body to make more platelets. My hema has found it very successful. He has put his 3 other ITP patients on promacta and all of them have gone into remission. One of them for over 2 years!

Kelly I got serum sickness from amoxicillin - you can get it from anything.

www.nlm.nih.gov/medlineplus/ency/article/000820.htm
"Medications causing the problem should be stopped, and future use of the medication or antiserum should be avoided."

Kelly:

I had serum sickness from Rituxan twice. I got it the second time because I was not properly diagnosed when I had serum sickness the first time. ER doctor said it was a virus. I didn't know any better, although I did keep saying that I was having Rituxan and it might have something to do with that. He obviously didn't bother to check it out.

Anyway, it was much worse the second time if you can believe that. The reaction came much faster (first week after instead of third week) and hit much harder. I began having myalgia after that and it has not gone away after 6 years. I also began to have Lupus symptoms (myalgia being one), so I think the serum sickness reaction triggered it.

I have read that once you have the reaction, you should never get the drug again. I've read that there are no drugs that will stop the reaction. Steroids may help, but I would not trust that it would stop the symptoms completely. Re-exposure to the offending drug can cause anaphylaxis. I certainly wouldn't risk that.

What are your counts right now?

Rituxin in 2007 gave me a 2year remission, but it came 1 yr. after the drug administered. I was also meditating 1 hr. per day so I take 50% of the credit. I may now be in remission again but platelets starting going up in late June and treatment ended in March so giving Rituxin more credit this time. I find meditations helps me in general with ITP or other life challenges etc. I recommend that option a helpful resource to assist healing and balance in general. Wishing you improved quality of life.

Kelly,
I had a strong allergic reaction to Rituxan (not sure if it was serum sickness though) and was told by Dr. Liebman at conference that I should never use it again, that I was at risk of anaphylaxis. He said I should use Imuran if I need to treat again, that success with Rituxan strongly predicted success with Imuran.

Currently I'm 3.5 years into remission from my last Rituxan.
Erica

Sorry I can't be off help as just had 4 doses of rituximab and been fine for me so far though don't know my platelet count until next monday though think it gone down but back up again...

I did have full blood transfusion when on IVIG a few times I believe since 1994. I just got on with it because apart from lathergicness and extra bleeding at times I didnt feel ill. I have an extremely niave outlook and trust doctors far too much - that has faded since septicemia though nowadays accept that I am 70% to blame for getting it.

Sorry I can't help you and hope the answers here will help you make a decision and be able to talk to the doctors. Some are good at listening and others aren't and hope you have one that listens. When are they doing the infusion. I wish you all the best

Thanks Anata!
It's funny I never heard of Promacta & Nplate until I began reading the blogs. In 2007/2008 I did a lot of research on possible treatments and I'm not sure why I've never heard of them. I will continue to learn more and talk to my doctors about them.

Kelly, those are new drugs, that's why!
Erica

Thanks Sandi! It feels good not to be alone and know that someone else TRULY understands what you're going through.
It's interesting that ER physicians as well as others aren't familiar with serum sickness. I had the same issue of being in so much pain and doctors not knowing or misdiagnosing even after the've been told you just had rituxan. I've also read several stories where that has been the case as well. It's pretty scary when you're going through it. Right now my counts are pretty good. I'm at 99, but I have a tendency to drop pretty fast. In the last 3-4 wks I went from 217 to 120 to 99. So I'm not scheduled to return to hema in 2 wks, but am suppose to see my rheuma in between. I've gone from 20k to 2k overnight, so my hema wants me to get prepared.

Yeah, I was a bit upset with the first ER doctor. They said it was a virus and sent me home with no meds. Recovery was tough.

The second time I pushed harder with the Rituxan theory since it was the second time. They called my hemo and he actually came to the hospital and diagnosed me. That time, I got Morphine and steroids. Much better!

Am sorry you had a tough time Sandi for the nurses on the day ward I attended told me if I was worried about any sign or symptom to ring them direct which meant I didn't have to bother A&E. They did say chances are it may be nothing to do with the rituximab but it is a comfort knowing at least they would know what I had recently and can give the right treatment as such where as A&E listen to an extent but then do their own thing sometimes

Sometimes we are a bit backward in things in England and other times from what I read about experiences on here, I have a very good heamatology department and appreciate that at every other post. You all ought to get transferred to Sheffield in England because my rapport with them has been excellent even a questionable year this year.... :-}

Wow Rhiannon! Thanks for the invite! If we all transfer to Sheffield, your Drs. will be overwhelmed with new patients! Can we stay at your place? :laugh:

of course so long as you don't mind the cat and it only a one bedroom council bungalow though a garden so bring a tent perhaps.... :-}

Yes the department might wonder what happening with a lot of Americans turning up..... Though it mayn't take the team too long to scroll through the ITP'ers and question us and get me.... After all in England if you have an accident you can turn up at A&E and you don't get asked insurance questions so you can be a holiday maker..... Don't know about specialist medicine though on a long term basis.

I don't think it work to say I just happen to have a lot of American Friends visit me from time to time and just so happen that their platelets are low.....

Sandi,
So do you think the serum sickness brought your lupus symptoms out more, or do you think it was the Rituxan? I only ask because I have been repeatedly tested for lupus, but now after Rituxan 4 weeks ago I am having so much tingling and bee sting kind of feelings, muscle pain. I guess it could be still prednisone withdrawal, but it is driving me crazy.

I think it was the serum sickness, not Rituxan. The reason I say that is that we all know that getting ill can trigger autoimmune disorders. Honestly, I was fine before the second serum sickness. Once I got that, I haven't had a pain free day since. I had Rituxan the year before and was fine after that, even though I had serum sickness then too. I just think the second, more severe episode was the final straw that stirred the antibodies.

When did you last see a Rheumatologist? I have the same symptoms, and did have some of them before my labs became consistent with a Lupus diagnosis.

I went to a very good rheumatologist about 5 years ago, when my ITP was active last time. I had similar symptoms with the muscle aches but I dont remember the parathesias being so bad as this. The ANA was weak positive, less that 40 if I remember right. He did so many tests, I'd have to look at the test reports again. He diagnosed fibromyalgia after his work up.

The problems I'm having now are worse since the Rituxan and going off the pred. My muscles hurt, my legs vibrate sometimes, prickly feelings that come and go, burning sensations. It makes me crazy, and I dont understand why it is happening. I read on the lupus posts that some people take neurontin for these kinds of symptoms. So, I might check with the dr. about that. Maybe I need another round of lupus testing.

Yeah, I think that would be a good idea. I've tried several drugs for the neuropathy and myalgia. Cymbalta, Lyrica, and now Methotrexate. Cymbalta and Lyrica were a nightmare; I couldn't function so I stopped those. Methotrexate is only rough on the weekends when I take it. I haven't tried Neurontin because the neuropathy did simmer down after a few months. For a while when it first began, I felt like I was being pelted by sleet on both arms and legs. Now I mostly just have burning skin, numbness on and off and the feeling of bugs crawling under my skin. Sometimes I get the weird vibrations. Anyway, you really should see someone. It could be kicking up if you recently stopped Prednisone. I notice that my symptoms get much worse when I drop my dose. On bad days, I bump it up and it helps a lot. Can't live without it!

I don't know why Rituxan would be making your symptoms worse. I have no reasonable explanation for that. It does seem though that most of us with Lupus or Lupus symptoms seem to have strange reactions to Rituxan or some sort of sensitivity. I keep seeing more and more of that.

Dru:

I've been looking for info about Rituxan and your symptoms and all I can find is that Rituxan can cause a "lupus-like syndrome" and/or psoriasis. There are no details on the lupus-like syndrome that I can find.

This frustrates me. I like to find what I'm looking for! I searched this back when I began to have problems after Rituxan and could barely find anything then. I thought there might be something new since it's been six or seven years.

Hi Kelly,

I've just posted my experience on the post titled: Bad Reaction to Rituxan - Risks to doing it again?

I think the term serum sickness was tossed around by the docs to define my reaction. However, I think if I weened my pred a lot slower, I may have gotten through it.

If you want to do it again, make sure to pre-medicate with lots of pred and ween down cautiously.

Good Luck!

eM

well thanks Sandi. The lupus like syndrome could be what I have. Hope it will go away. It has been a month now so hoping to feel better soon. I think I'm getting anxious about it as well which doesn't help. Then I start worrying about brain infection etc etc. I know anxiety can make that skin crawling stuff worse.

Let me know how things are going, and please, make that appointment! It's time.

Dru
Sorry you are feeling anxious about it all though it is a natural reaction. But without scaring anyone anxiety is a health issue on its own accord as such. Panic/anxiety can even cause heart attacks and can present all the symptoms of having a heart attack but not - that would be classed as a panic attack.

Anxiety can cause any symptom so it isn't something to be undermined or sneezed at. The best way I found to treat anxiety is to deal with whats causing it. In time the rest will take its proper place.

Is there a hobby that you enjoy Dru? On here that is one of the first steps to help reduce the anxiety level and it is a very good one. If you haven't a hobby then now is the time you could do a little bit of research to begin a hobby. It is hard work beginning a hobby if you haven't a natural interest in something (from my experience as in my CBT sessions the therapist did try for my hardest time is sunday evening and okay when its daylight.... but autumn and winter.... though I like the cosyness of being tucked in the warm I don't have a lot to do and find TV doesn't interest me that much)

I hope you feel better soon and learn to manage the anxiety. There is help. If you are very good then in England at least we have a range of self help books and as they are mostly american authors I imagine you have the same range. But I found it hard to do on my own and having a therapist is good. It all the same exercises that can be found online or in books but verbalising it. 10 year ago I couldn't have done it as didn't know enough about me. But it is a good way of managing anxiety and you can access websites online without needing a therapist etc that are very good.

Steroids can present all sorts of symptoms and I am lucky and get very few. My worst is stiff/achy neck and I only don't like it because I didn't have it before meningitis/Septic shock days. I know it the steroid that is doing it (I sincerly hope) it the steroid doing it and yes am wary but not that anxious because it all goes away when I stop the steroids. But yes steroids can throw up a whole host of symptoms though it is wise to get anything you are unsure about get checked up. It only a phone call away and it is better to be tested than it is to assume. er as i do, but I am pretty convinced mine is steroid caused as it goes every time I stop them.

I just came across this. Scary stuff - I wasn't aware of this connection:

"The most severe and obvious complication of Serum sickness is Guillain Barre Syndrome (GBS). Guillain Barre Syndrome is type of auto-immune disorder by low hypersensitivity reaction. Nausea, vomiting, loss of appetite, stomach pain, migraines, low grade fevers and chills are quite apparent symptoms of GBS. The regular headaches and migraines are result of Central Nervous System Disorder. Constant exhaustion, tiredness and pain in the back of head are early signs of Guillain Barre Syndrome. The disease initially appears in lower limb and affects the muscle reflexes. Paralysis in lower limb and legs are commonly called rubbery legs or tingling and numbness in legs. Afterwards this syndrome travels in upper part of the limb. Generally in short span of time facial muscles and arms get affected and become completely paralyzed. Normally the lower cranial nerves get damaged and lead to bulbar weakness. It affects the swallowing and breathing resulting in constant drooling. In acute cases of Guillain Barre Syndrome patients complains of temporary Bladder dysfunction. The obvious indication of GBS is pain; it is quite similar to the aching that you get after over exercise or jogging.

Guillain Barre Syndrome is a rare and severe disease. It occurs after an acute infectious procedure. Guillain Barre Syndrome initially affects the peripheral nervous system. Normally it is acute form of paralysis in lower body area that moves towards upper limb and face. Gradually patient loses all his reflexes and goes through a complete body paralysis. Guillain Barre Syndrome is a life threatening disorder and needs timely treatment and supportive care with intravenous immunoglobulins or plasmapheresis. Unfortunately many people lose their lives without proper and prompt medical treatment. Dysautonomia and Pulmonary complications are the basic reason for death other fatal complications."

www.guillainbarresyndrome.net/

Rhiannon,
Thanks for the pep talk, I appreciate it. I've been dealing with anxiety for a long time and I have a self help book called something like; the 10 best methods for treating anxiety. I have it downloaded on my kindle and use it all the time.

I enjoy my job alot and find it a good antidote for the anxiety, I am an occupational therapist and work with young disabled kids. My job is active and gives lots of exercise too which is one of the 10 anti anxiety methods.

Sandi, I will talk to my hema doc next week about these symptoms again and make another appt with the rheum. doc.

Wise move Dru

It good to be educated about what is out there but when there are some of us who do battle with anxiety we can get caught up in webs and become scared when the actual explanation may well be not so severe. But then that is positive too in that if think the worst and the result is okay then you have something to celebrate.

Just about anything can be attributed/blamed to steroids and soon stop once stopped the treatment. However, to be on the safe side it wouldn't hurt you to ask the consultants again and if you are not happy with their answers you can go back to the family doctor and ask them. At any time something unusual happens to us we should be checked out so its all the more important when on treatments and if we are concerned about specifics we can follow it through.

Saying that, around July last year I had a strange weekend of the d word. I didn't need to run to the loo thankfully as we were having two days out as a group of friends. But it wasn't me once at the loo. Luckily I don't think it that what Sandi has referred to as dont really have any of the other signs. Though my platelets did drop the next month so it could have been connected in some way but not to that syndrome. I am classic at researching all the worst case scenarios and luckily it got me beyond the fear of the very worst that could happen.

It a very wise move to discuss your symptoms and ask some very direct questions and hope that you come away having been heard and follow ups that you feel practical about.

Take care

Sandi I found that site hard to read as words were missing from sentences.
I did click on 2 of the 3 sites the article listed at the bottom of the page,
the NIH and Mayo Clinic ones, figured Wikipedia wasn't worth it. Unless I missed
it I did not see anything about The most severe and obvious complication of Serum sickness is Guillain Barre Syndrome (GBS). Did you?

Melinda - I didn't have any missing words. The site I posted was a GBS web site. Yes, I did see that a complication of serum sickness is GBS.....just as I posted.

Sandi I know the site you posted was a GBS website - I went to it, that's how I know there were some words missing from sentences, I read it [I have a bad habit of "proofing" as I read] - I didn't say you had any missing words.

I clicked on "About This Site" and it said This is an example of a WordPress page, you could edit this to put information about yourself or your site so readers know where you are coming from. You can create as many pages like this one or sub-pages as you like and manage all of your content inside of WordPress.

And yes as you said it does say on this site that a complication of serum sickness is GBS. However what I said was:
at the NIH site and the Mayo Clinic site listed at the bottom of the page of the site you posted [forget the wikipedia site mentioned there] unless I missed it I did not see anything about GB being a complication of serum sickness. Did you? [meaning did you see anything about GB & serum sickness at those 2 sites listed at the bottom of the page you posted]

Sorry for the miscommunication. We've been doing that a lot lately, huh?

I didn't think you meant that I had missing words. I knew you meant the site I posted. When I was on it (twice), there weren't any missing words.

I didn't go to the other sites since I don't like Wiki and I trusted the GBS site the most.