Tag Archives: rituxan

Rituxan #4 Update

29 Sunday Jun 2014

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Julia Getting an Infusion

On June 19th, I had my fourth dose of Rituxan (the second part of set #2).  You’ll notice that I’m wearing the exact same cardigan as last time.  As it turns out, this is perfect for infusions – stretchy enough that they can pull it up to run and IV and thin enough to take a BP without removing it.  All the same, it tends to keep me warm.  It has officially become my Infusion Outfit. Ah, the things that make me happy now! I’ve taken to bringing my own blanket as well, but they like to put a warm blanket on top of that so in the pic above I have two blankets plus a pillow for my arm. Comfy indeed.

It was good news all around: not only did the infusion go off without a hitch, but I am pleased to share that we actually increased the infusion rate and I tolerated it well! I was nervous about this step because of my reaction the first time, but I did just fine.  The hardest part was the difficulty in finding a vein.  It doesn’t seem to matter how much water I drink, this always happens.  I’m used to it, so it wasn’t a surprise, but the vein search took about 30 minutes.  Even with that delay, we were out of the infusion center in 5.5 hours!  Remarkable when compared with the 8.5+ hours of my first visit.

The IV benedryl really did me in this time.  Shortly after receiving it, I zoned out completely.  W said he was messing with my toes and I didn’t react.  I remember very little during this time except that he shook me gently once to tell me I was snoring.

Every time I have an infusion I still have a panicky moment on the way there when I ask myself (and W too) why I am allowing/encouraging people to pump me full of scary drugs.  Looking forward to it even?  W sighs and slowly reminds me again that the risks of not taking the drug greatly outweigh the risks of using it.  I want to be relapse free.  I want to keep walking.  I want to keep the daily impact of my MS as minimal as possible.  So, I get the infusion and after recovering a bit, I move forward with life.

I came home from this infusion and slept for twelve hours, was up for four, and then back to sleep again for four.  I returned to my regular seven hours of sleep that night. Basically I slept 25 of 29 hours.  That is an official record for me.  I woke up so sick of being in bed that I insisted that W take me to the local farmer’s market just so that I could get up and walk around a bit.  Three days post infusion I am still very tired, but can feel myself heading back to normal again.

Some of the best news came from the NP before I headed to the infusion center.  She mentioned (again) that I may be able to switch to one infusion go around instead of the set of two.  Woohoo!  I am seeing the MS Specialist in three months and she will confirm the treatment plan then, but it is a potentially positive thought to keep me going.

Rituxan infusions Galore

07 Saturday Jun 2014

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This week I had the first of two Rituxan infusions.  My last treatments were in Nov and Dec of 2013 and they tend to aim for every six months.  I apparently have little recollection of the actual experience last time.  By that I mean: I was feeling so bad MS wise at the time, that I associated most of the physical portion of that experience with my MS instead of the infusion itself.  W suggested that I document it a bit better this time so I’d remember more going forward.  Smart man.  🙂

On Wednesday morning we headed to the neuro clinic bright and early for a quick visit with the nurse practitioner.  Rather than an actual medical visit, this is a pre-Rituxan visit and basically is to ensure that there are no concerns that should stop them from authorizing the infusion.  We talked briefly about my recent GI problems and she decided that it was likely unrelated.  We even discussed that if my CD19 & 20 counts stay at zero, we may be able to consider just one infusion every six months instead of a set of two going forward.  She checked all my labs and took another urine sample just to be safe.  She listened to my lungs, my heart, and felt all my lymph nodes for swelling.  At the end it was decided that I was okay to proceed (yah!) and we headed out.

We arrived at the CMC Infusion Center a few minutes after my actual appointment time because of the neurology visit.  They were gracious and just ushered me right in and gave me a big, comfy chair.  Kathy, one of the amazing nurses there, came over and wrapped me in blankets and placed a heating pad over my arm.  Not only does this feel lovely, but it helps them to get a good vein the first try.  I tried to relax while I warmed.  After a few minutes she returned and started the IV.  She took vitals (my blood pressure was high, but it is always high when I go for an infusion), asked some medical questions, and we were off.

The infusion begins

Before the Rituxan infusion, they give pre-meds.  The goal is to head off any possible side effects.  Each doctor/infusion center seems to have their own pre-med protocol, so yours may be slightly different than what I describe.  We started with some fluids, and then she switched over to 100mg of hydrocortisone (solu cortef) which is used to reduce inflammation.  Once it was started, Kathy popped out and allowed W to come back and sit with me.  The whole pre-W experience was only about 30 minutes.  The steroid takes about 30 minutes I believe.  Things get a bit fuzzy here for me as the meds take over a bit.  When the steroid is done, Kathy flushed the line and then gave me two tylenol to take (this reduces the likelihood of fever/chills and headache) and started the 50mg of IV benedryl (to reduce an allergic-type reaction).  This burns a bit going in, but in spite of that, this is when I really float away.  I am extra sensitive to Benedryl.  On the rare occasion I have to take it, I take half of a pediatric dose if that gives you any idea.  So, after the IV, I spend about an hour with my eyes closed.  Not quite sleeping, but definitely not functional.

Kathy flushed the line again after the benedryl and then the Rituxan begins.  This is administered very slowly to begin and then the infusion rate increases over time.  Every 30 minutes, Kathy would visit to take my blood pressure and my temperature and ask if there is anything I needed.  They are incredibly attentive and it is much appreciated since you are basically spending the day with them.  We always bring our own snacks and drinks, but they do have a little snack area with sodas and crackers and will order lunch for anyone who is going to be in the infusion center during lunchtime.

When the Rituxan is done, they do a quick 3 minute flush, remove the IV, and we were ready to go.  All told we were there 6 hours – much better than the 8.5 hours of my first infusion.  A few related notes: although tired at the end, I was ready to be up and around.  It’s hard to sit still that long regardless of how comfy the chair is.  Second: Rituxan can drop your blood pressure.  I came in very high mostly due to being nervous about the infusion (143/101 or so) and when I left I was 105/64.

W & I got in the car and headed home.  We stopped on the way at a natural food store, the Organic Marketplace, that has a little cafe and ordered food to go for dinner.  I decided to walk upstairs to the store and pick up a few things.  Bad idea.  The walk up two short flights of stairs left me hot, dizzy, and faint.  I’m not sure if that was a blood pressure problem, or I was just way more tired than I expected.

When we got home I took a quick shower and asked W to stay in the bathroom with me just in case I got dizzy again.  All was well.  I put on PJs and crashed in front of the TV.  We ate dinner, watched a few shows, and went to bed.  At that point I was feeling fine, just tired like I’d had a very long day at work.  The only thing I noticed was some residual soreness running from my arm where I IV was up into my shoulder.

I slept for 12 hours.  Not typical for me.  Lately I’ve been lucky to get 7 hours straight.  I woke up feeling worn out and sore.  I think those with MS will understand, but it just feels like I pushed myself a bit too hard yesterday and I’m out of spoons.  My body is achy and it takes a ton of energy to do anything.  My big goal is simply to get something small to eat so I can take my daily pills and then crawl back in bed or crash again on the couch.  I’ll probably spend most of the day sleeping.

As a side note, all this excitement happened on my birthday.  W was wonderful and ran out to pick up a special birthday lunch and some cupcakes so that we could celebrate in spite of the fact that I spent the day strapped to an IV pole.

So, although technically you are able to return to work the day after an infusion, for me that is just not the case.  My body needs an extra day to rest before returning to normal life.  This isn’t the case for everyone – in fact, based on feedback on the Rituxan facebook group, this varies pretty wildly.  Some folks go right back to work whereas others feel a bit rough for a week or so.  W tells me that I typically don’t start feeling like myself again until day three.  I scoffed at him when he told me that last week, but my memory has been refreshed and I completely believe him now.  I head back to the infusion center again in 15 days for the second in this set.

After all is said and done, I am still immensely grateful.  Some folks give themselves injections daily.  Others take pills that can have strange side effects.  This med is only administered once every six months.  Not only that, it is keeping my MS completely at bay and allowing my body the time to try to heal the damage that was previously done.  Who can ask for more than that?

Update 6/11/14: I ended up taking an additional day off work that I didn’t plan (yep, W was right!).  I had the infusion on Wednesday and wasn’t feeling like being up at all until Sunday, so it took me a full four days to get my energy back.  Today is Wednesday one week later and I’ve felt great for several days other than a small amount of residual soreness through my shoulders and legs.  I did notice that my MS symptoms have flared a bit in the week since the infusion and I had to increase my gabapentin dose again to compensate.  Since I had previously weaned myself down to 300mg/day, increasing wasn’t a problem at all.

Getting Good News

23 Sunday Mar 2014

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Since mid October it has felt like every doctor’s visit was a dread-filled experience.  I left each feeling despondent and generally depressed.  For the first time, I got good news and I was honestly unsure how to process it.

W and I went for a three month Rituxan follow-up with the MS specialist.  I had an MRI that I was quite concerned about since the report showed a lesion at T2 that had not previously been present.  The neurologist sat down with us and the MRIs, pulled up the old scans and the new and told us that she didn’t believe there was a lesion at T2.  She could see it only on one sequence, so her guess is that it may be an artifact or something else, but if it were a true lesion, it would be more visible that it was.

That alone produced a huge sigh of relief from me.  Several weeks of mental anguish turned into nothing with a few words from the doc.  As if that wasn’t enough, she went on to say that she believe I didn’t originally have one long lesion as we had understood, but quite possible two smaller lesions and that both were improving.  Yep, improving lesions.  It was something that had been cautiously mentioned as a possibility early on when I started treatment, but we were warned numerous times that it may not happen.  So, in short, the Rituxan is doing its job.  It stopped the disease process and allowed my body the chance to begin to heal itself.  Kind of amazing if you think about it.

To add icing on the proverbial cake, my CD20 count is still negative.  That means that the Rituxan is not only doing its job, but it is lasting in my system meaning that I won’t have to treat again until June.

Of course, the little part in my brain immediately started talking to me and warned that I shouldn’t get too excited or too comfortable as the MS can rear its head anytime, but the doc shared with W & I that in clinical trials 90+% of patients didn’t experience a relapse if their B cells were kept in check.

I did ask about pain & fatigue control and was told “exercise, exercise, exercise.”  Per the doc, exercise helps pain control in all cases except traumatic injury.  That was new knowledge for me and pushed me back to the Y to take on swimming again.

So at this point I am focusing on staying positive, trying to be healthier, and hoping that my symptoms will begin to improve as my body continues to try to repair the existing damage.

Starting Rituxan

22 Wednesday Jan 2014

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The decision to start Rituxan was fraught with worry.  I know it was recommended by the MS Specialist and she had both MS and NMO patients on it that were doing well.  She even offered us several stories of folks who were more mobile post Rituxan then before.  On top of that, she took the time to explain the mechanism in a way that I would understand.  All the same, I was concerned.

For those who are not familiar, Rituxan (Rituximab) is not FDA approved for MS (and likely will not be).  It is a monoclonal antibody that destroys B cells, a very specific cell that is a part of the immune system.  Although used for certain cancer treatments, it isn’t a standard chemotherapy agent and is used to treat several auto-immune disorders including Rheumatoid Arthritis. Progressive Multifocal Leukoencephalopathy is still a risk (and a frightening one) but those who are familiar with MS medications know that risk exists with other MS meds and the risk with Rituxan is much lower. 

My dad, who is a family doc, my mom, my husband and I all attended the appointment to discuss the medication choice.  We all left with a positive feeling, but I received a call later that evening from my father saying that he didn’t want to influence my decision, but thought it would be good to research the medication choice a bit more.  As it turns out, he had pulled it up on Epocrates and read all the warnings – enough to scare anyone.  Thankfully as a doc, he has access to other physicians and was able to speak to someone who administers the medication routinely in their office.  He was assured based on their conversation that they rarely saw the complications that were of concern – those were mostly seen with folks on other chemotherapy medications.  So, we made the decision to proceed.

Within two weeks of my discussion with the MS specialist about the medication, my husband and I found ourselves on the way to the infusion center for my first Rituxan infusion.  In spite of all the discussion, I was immensely nervous and my blood pressure was very high.

I went back initially without my husband so they could get me set up.  I got comfy in a chair, they wrapped my arm in a heated blanket (to help start an IV) and talked to me a bit about what was going to happen.  Vitals were taken, an IV started, and then my hubby was ushered in to sit with me.

They started by giving me Tylenol to take, then started infusing a steroid.  Once that was done, they gave me Benedryl IV.  I am incredibly sensitive to Benedryl and had to fight hard to stay awake, but at least I was more calm.  The nurses started Rituxan at a very low infusion rate and slowly increase it in stages, taking vitals at set intervals, and checking up on me frequently.  I dozed in and out for a while and then noticed – right around 150 – that my scalp was slightly itchy.  Then my ear started to itch, and then the right side of my face.  I asked Wayne to get a nurse and they came over and stopped the infusion.  At this point I was feeling hot and flushed.  We waited a few minutes to see if it would calm on it’s own, but the decision was made to give me more Benedryl and another steroid infusion.  We waited 30 minutes for the flushed and itchy feeling to subside, then restarted the infusion again at the lower level.  An infusion that should have taken 6 hours or so kept us (and the poor staff!) there for a total of 10 hours.  We were literally the last people in the building.  🙂

I was a bit nervous about the 2nd infusion based on the first experience, but the nursing staff explained to me that I likely experienced mild cytokine release syndrome and it is fairly common.  It meant the medication was doing its job and it likely would not happen again.  Sure enough, the 2nd infusion was much easier.  My mom was with me this time to keep me company and we were in and out in 6 hours with no need for additional mid infusion meds (just the typical pre-treatment Tylenol, Benedryl, and steroid).

After both infusions I was told that I could return to normal duties, but that didn’t happen for me.  In both cases it took me two full days post infusion of sleep to feel like a normal person again.  My body just felt worn out.  After those two days, my energy level started to return and was better than before the infusion.

The good news came a few weeks later when I received my lab results and my CD20 counts were zero! The tentative plan is to re-treat again in six months to keep those levels at zero.