Rituxan #3

Tuesday: was my third Rituxan® infusion. Walloped with IV steroids and IV Benadryl™ (both as pre-meds to prevent a reaction to infusion), the appropriate labs had been drawn.The premeds are given to prevent a reaction to the infusion.

Reaction to infusion? Essentially, the administration of any foreign drug is likely to elicit some response from the immune system. How and why could I react to this infusion? Well, think of this just like the immune system in lupus. There is a foreign invader (antigen and in this case, Rituxan®) and the body can mount an immune response with antibodies. The antibodies which attack foreign cells are called auto-antibodies.
If the body does mount a response, it usually is diminished with the body’s own antihistamines. The administration of IV steroids and IV Benadryl, an antihistamine usually prevents this reaction from occurring and treats it it it does. Symptoms of a reaction might be itchiness, hives, throat tightening, airway obstruction and distress and respiratory arrest.

 

I find the following video an easy way of remembering the definition of antibodies and antigens and auto-antibodies and their difference.

An hour after the infusion began, the nurse increased the rate as she had done 2 times before, but shortly therafter, I got a very intense itch on my back. I didn’t consider an infusion reaction; rather, I thought of dry skin on my back: because I forgot to lotion!
Just as quickly as the nurse stopped the infusion, she looked at my very itchy back. It was reddened and raised and blotchy red. My face was reddened and so was my neck, I was having a reaction. The infusion was turned off for an hour and when she resumed the infusion, she started it at a much slower rate and I was fine.

 

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What is Rituxan?

An update on my second Rituxan™ infusion: my only side effect, mild flushing was gone in less than a day. Remember, doses for immunotherapy are lower than cancer chemotherapy, so, reactions most likely differ.

After the IV Benadryl™ and steroid I was given (to prevent most reactions) I slept. I slept during the whole infusion, except for lunch when I emerged from my warm blanket and slumber-when a sandwich and beverage was delivered. I was chomping away one minute and the next minute, I was the awakened by my nurse, “Your teeth have fallen out (I wear a partial plate) and your sandwich is smushed into your chest!”

More important, why Rituxan™, and why does it work? There are two types of cells in the humoral immune system; B cells and T cells. It is the  job of the B cells is to fight infection which it does by producing antibodies.When the B cells are suppressed, antibody production is decreased and disease activity is decreased. So suppress away, right? We don’t want disease activity!

Not so fast! When you suppress the B cells, you also suppress the body’s ability to fight infection, so infection is a common side effect of Rituxan™. So the risk of infection is a common risk that needs to be weighed. However, this risk can be minimized with good hand-washing, not exposing oneself to people who are ill, wearing a mask in large public places or and asking others to be respectful of your infectious needs.

 

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Rituxan #1

Apprehensive, that was me; you know how they say that nurses make the worst patients? Well. it’s true! Today was day one of Rituxan/Rituximab infusions and you’d think I’d never had an IV before! But, symptoms of lupus and Sjogren’s Syndrome had gotten too great to be controlled any longer with the Prednisone and Plaquenil I take.

My rheumatologist and neurologist decided that Rituxan® was the treatment that would benefit me the most and have the fewest side effects. Before starting the medication, the nurse drew blood, sent the results to my doctor and gave me two medications: Benadryl™ and a steroid. Both were intended to decrease the chances of a reaction:  So, that was the reason for increased restless leg syndrome twitching. IV benadryl was the culprit!

The first treatment was pretty smooth with only one disruption: the nurse needed to stop the infusion because my tongue became ‘tingly.’ That was an early sign of potential life-threatening reaction, so we decided to err on the side of caution and stop the infusion for a while. She resumed the infusion after about 20 minutes, but more slowly this time.

I spent the rest of the time; well, I had lots of things to do, but I slept-after I ate lunch at the infusion center. Yes, they delivered sandwiches to each large cubicle (@5′ x 10′), I sat in a reclining chair complete with television and heated blanket! I had brought books on tape, movies, Facebook, and twitter; but did I do any of those things? NO! I slept.

The next day, my skin was a little flushed, my doc said to observe it, but the flushing was gone by evening. So, all in all, day #1, no problems. I’m scheduled to have the infusions weekly x 4 then the doctor will reevaluate and determine how often in the future I’ll need them.

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My Journey

My rheumatologist called; ‘Rituxan has been approved by your insurance company; so the infusion center will be calling you to schedule.’ 

‘Wait, not so fast!  I have a few questions about Rituxan, basic questions: like why you chose it, what to expect, what the goals are and what side effects there are.’  The doc explained the action of Rituxan (Rituximab™).

It works by supressing B cell activity (remember the B cells and T cells?) which decrease much of the inflammation caused by lupus and Sjogren’s Syndrome. Unfortunately, also decreased would be my body’s ability to fight infections. Good hand-washing would was a must as would be not staying in crowds without a mask.

The symptoms? Never a problem at rest, shortness of breath was always a huge problem when I exerted myself; all I had to do was to walk 10 yards and the shortness of breath was terrible, debilitating. Where had this come from? From left field, I know!

To someone who had been athletic her whole life and relied on her lungs to fuel the heart with enough oxygenated blood to power my muscles in a triathlon, being short of breath with such minimal exertion was quite a lifestyle change. 

Stay tuned to this channel for updates on my weekly treatments with Rituxan as I take this journey. For now, infusions are scheduled once a week x 4 weeks.

 

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Why They Chose To Be Research Volunteers

Sometimes you need to get out of ‘yourself.’ Sometimes, you just want to see what you can do to help someone else. Sometimes a friend or family member is stricken and you feel powerless to do anything to help. For whatever reason, you have volunteered and are part of a clinical trial which studies an orphan disease. Congratulations!

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Clinical Trial for Rheumatoid arthritis

Rheumatoid arthritis is an uncommon form of arthritis. Rheumatoid Arthritis is an autoimmune disease that occurs when your immune system attacks the lining of your joints. This causes joint pain, stiffness, swelling, and redness that can move to any joint, at any time. You may also have other symptoms like feeling tired or having a fever. Better treatment options are needed for people who suffer with Rheumatoid Arthritis. Right now, local doctors are looking for people who have Rheumatoid Arthritis to participate in local research studies. Click the link below to learn more:
http://curec.lk/2mYV5A5

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