Tuesday, November 6, 2012

Rituximab and Julia

I've had lots and lots of emails recently asking more about my experiences with rituximab, so I thought it might be useful to write a post that explains my mousie meds a bit better than I may have earlier. What follows is basically my response to those that have contacted me:
You asked about my experience with rituximab? Happy to share. I was diagnosed with Sjogren's about nine years ago. My symptoms crept up fairly slowly in that I had lots of aches and pains, my thyroid quit working, and I just didn't feel "right". My eyes were moderately dry, my mouth was dry, and I had a very diminished sense of smell and taste. But it wasn't until that my parotid glands swelled noticeably and my fatigue became overwhelming that I was able to get a diagnosis. 
My rheumatologist at the time started my on standard Sjs tx: prednisone and plaquenil. I had marginal relief from these meds, my parotids did reduce but my fatigue was constant. 
The years (and doctors) went by with different approaches, we tried methotrexate, cyclosporine, and even a TNF inhibitor - Enbrel, with varying success. I began having more joint issues and also subacute cutaneous lupus about a year ago, which is when I began looking at the studies for a class of drugs most commonly used in the treatment of lymphoma, Rituxan. A few studies appeared at the time which suggested that instead of looking to break the autoimmune chain of events by suppressing T-cells, this drug was focused on reducing a different white blood cell: the CD20 B lymphocyte. I talked to my rheumy about rituximab with copies of these studies in hand, of which (of course) he was already aware. 
Over the next six months he did some investigating on his own and continued follow-up appointments with me who was still very fatigued and spotty (lupus). He agreed to give me my first infusion last spring. Eight weeks after the infusion cycle, which is two IV doses given two weeks apart, I felt a boost in my energy, my lupus lesions disappeared, and I had a bit more saliva production. I had a great summer. What a blessing. 
As fall approached, I could feel my energy diminish and saw the lupus reappear. My doctor prescribed another round of rituximab for me, and I finished my last infusion about three weeks ago. Here's how my infusions were given, and my response to them: 
The medication is given out-patient, IV, in an IV infusion center. I arrived for my appointment having been advised to wear comfortable clothes and to have a driver. I was asked to have some basic labs drawn within a few days before the infusion. I was told to take my normal AM medications, and eat normally.  
The nurse started an IV, then gave me Tylenol pills, IV benadryl, and IV solumedrol (a steroid) before actually beginning the infusion of rituximab. I was attached to a monitor that checked my bp and pulse frequently at first, then less often as I neared the end of the infusion. After the IV benadryl was given, I was very, very sleepy, so that I hardly noticed when the rituximab began. It was attached to an infusion pump which delivered the medication in a very controlled and specific rate. They began quite slowly, and then increased the rate in increments, based on my response which was very good. Mostly I snored! 
After the rituximab was finished infusing, I was asked to remain there for at least another half hour, after which I was allowed to go home. I was sleepy but able to walk by myself to the car with my hubby, who drove me home and poured me into bed afterwards.
The day after my first infusion, I was instructed to take a large dose of prednisone daily (this dose differs with everyone based on their previous doses of prednisone and their body weight) for one week, a slightly lower dose for another week, and then returned exactly two weeks after my first infusion to receive my second IV. 
After each of the infusions, the first three or four days post infusion I felt very very tired. I had a strange taste in my mouth, but no nausea or vomiting or diarrhea. Gradually after the second infusion, I felt my energy reserves begin to slowly spike. I'm just at that stage right now and enjoying the benefits of having a bit more zip.  
I'm sure that you know that this medication is not without risk, however most -- but certainly not all -- of the risk seems to be related to the actual infusion and to body's reaction to this foreign substance, which actually is an antibody made from part human, and part mouse DNA. This monoclonal antibody's single purpose is to find and attack these specific type of B lymphocytes.  
Many problems associated with this drug seem to be during the first few hours of infusion, during which the medication is immediately stopped and other medications given to lessen the response which is similar to a reaction to a blood transfusion. Then of course are the less common and more serious reactions such as infections and others. I'm sure that your physician will have discussed the risk/benefit issues with you.  I did not have issues with this at all; as a matter of fact I tolerated this drug very well.  
As far as what help you would need post infusion: Definitely transportation from each of the infusions; then afterwards, the help you need would be based on your reaction to the drug. There are many who receive rituximab for rheumatoid arthritis, and I have read several patient's experiences on some RA boards -- some say that they just get up the next day and go about business as usual; others have experiences more like mine in that they feel more fatigued than normal for them for at least a week. My rheumatologist is treating another woman with Sjogren's syndrome with rituximab, and her experience has been even more positive than mine in that her boost in energy happened even sooner. 
You can read more about CD20, B lymphocytes, and autoimmunity here and here
So. That's the Cliffs Notes version of my experience. Others who have been treated with this drug have had similar -- and very different -- reactions to it. You can read more about other sjoggies' thoughts about using rituximab in the treatment of Sjogren's syndrome on Sjogren's World Forums. Look for the search box on the upper right corner of the page and type in "Rituxan" or "rituximab".

Make no mistake: This is a heavy duty drug. It's one of the BIG guns.
Some insurances will not pay the hefty cost of it and it's administration. However, B cell depletion therapy is the focus of much study and appears to be a significant advance in the treatment of Sjogren's syndrome and other autoimmune diseases.


Lisa said...

Wow ... thanks Julia. Two years later I am still struggling w/my diagnosis, am marginally controlled w/Plaquenil, am simply a nameless # in the rheum. practice
& just basically try to pretend there is nothing wrong w/me - in between fits of silent panic! It really does help to read your explanations, thoughts, humor, and seemingly down-to-earth approach to your diagnosis....

Anonymous said...

Thank you so much, Julia!
It is very helpful to hear your experiences with rituxin treatment, and how you arrived at the decision to use it.
I hope you continue to feel better.
My husband was treated with Rituxin and other chemotherapy agents for Follicular B Cell Non-Hogkins Lymphoma in 2004. He tolerated it very well and it worked.
It is interesting how you initiated the conversation about Rituxin with your Rheumatologist. It demonstrates how important it is for all of us to be informed patients and have doctors who are willing to work with us.
Thanks again!

Unknown said...

This has given me hope! I have SJS with a rare side effect of having aseptic meningitis. I've been hospitalized 7 times since December due to the meningitis and no medication seems to be working. I'm currently on high doses of Cellcept & Prednisone but was hospitalized twice in October. Thank you so much for sharing your journey!

Tana said...

Thanks for sharing your experiences Julia. Like you, I have both Lupus and Sjogren's. My insurance company refused to pay for rituximab about 4 years ago - even after appealing, so I've not been able to try it. I've always wondered if it would have helped. Doing fairly well with mtx and pred at least. Maybe positive experiences like yours will encourage more insurance companies to pay for the treatment. I hope it continues to work for you!

Unknown said...

Thanks! I still can't wait to get it. Are the articles u took to ur doc those u have linked above? Take care

Racefan323 said...

Hi Julia I found this story very interesting...I am a 49 year old male who was first diagnosed with ITP (low platelets - auto immune disease) 1.5 yrs ago. After taking prednisone without success I was prescribed aziothioprine instead. Unfortunately this gave me hits and was stopped right away. The next course of action was Rituximab similar to you but I had 4 treatments 1 week apart. My hematologist that that the ITP was secondary but could not figure out the primary issue.
I was referred to a rheumatologist and after completing several tests they still could not determine what the primary issue was.
Now they suspect Szogrens syndrome as my parotid gland swells up occasionally and I have dry mouth and eyes. I will see the rheumatologist in January to confirm this. My wife and I were under the impression that Rituximab could only be given once. We also suspect that because of the Rituximab treatment my symptoms were suppressed.
Thank you for sharing your story.

ShEiLa said...

Thank you for sharing Miss Julia... I hope that you see continued improvement and quality of life. Manageable is good. I went back for round II of freezing my wart/toe yesterday even though the blister was still there from two weeks ago. The was at the Quick Care last night... Something funky and fungal going on in my mouth... anti-viral Rx. So many things are common for the immune suppressed.



Anonymous said...

I have recently been diagnosed with sjogren ..all started in 2009 when started w Graves' disease, than alopecia , than now my parotid gland are extremely painful and swell on daily basis.. The swelling o my glands started ounce hen i was age 14, than in 2007 my swelling glands dilema started... I use antihistamine on daily basis 2 to 3 times day if calms the pain, swelling and itchiness but keeps me drowsy all day unable to function...I have started to feel aluminum taste in my mouth recently, I forgot to mention this to my doctor today! Specially at night though...my rheumatogst recommends rituximab but I am scared to death...I am scared that this med will have another side effect on me...any recommendations? Pls respond to this at Nina.hamond@yahoo.com