Monthly Archives: June 2014

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.

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How Life Has Changed

21 Saturday Jun 2014

Posted by in Daily Life

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A disease called Awesome

Back in the day (ie last year), I used to spend time with others talking about a book I’d just read or a movie I watched.  We’d basically talk about meaningless stuff…and at the time it seemed to matter.  W and I used to love to travel to retail shows selling our soap and chat with people spending hours outside.  We would tend the garden or go for walks.

Flash forward to now and I’m amazed at how my life has changed.  I find myself in conversation with folks and I’m not sure what to say.  If they are fellow MS’ers, we chat endlessly about doctor’s appointments, our favorite MRI machines, wait times, new treatments, and infusion centers.  Non MS’ers?  I honestly draw a blank.  I can still chat about whatever TV show I watched recently or book I just read, but my reading list has adjusted to include a few more health-related books then I would like and any TV show discussion tends to morph as health enters the picture as in “well, after my last infusion I was on the couch for two days and watched an entire season of X” (<– insert favorite show here).  I’m afraid to do most retail shows now because I never know when I’m going to hit a certain level of exhaustion that just requires me to stop and I definitely can’t do much outdoors since I have developed the wonderful ability to overheat at a moments notice and tend to have trouble functioning when it happens.

Other-People-in-my-Age-Group

I feel like a person who is losing touch with reality.  Or maybe I feel like those around me have lost touch?  I would like to say that being diagnosed with a chronic illness brought new meaning to my life, and some days I honestly feel that way, but other days I just feel spent and a bit lost.  Like I became old overnight and left all the people my age behind.  I just don’t know how to relate to them in the same way anymore.  It sounds awful (and I promise I am not an awful person), but their complaints about relationships, daily life, and work can make me angry.  They just seem trivial when looked at from a different vantage point.

I know all my anger and frustration has nothing to do with the person doing the talking and everything to do with me and my choice to interpret their words in that way.  I know it is unfair of me and I imagine it is simply my grief once again manifesting itself in my life. I recognize it as something I need to work on and I hope that as I continue to improve illness can take a backseat in my life and I can return to the banter of daily life with a real, legitimate smile on my face.

For others with chronic illnesses who have been through this battle, does it get easier?  Any tricks to that may help to ease me back to the other side?

Educational Event

14 Saturday Jun 2014

Posted by in Education

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Several weeks ago W and I attended an MS dinner program in Charlotte.  It was put on by MS News and Views and instead of being sponsored by a single drug company, it was sponsored by several which means that the information provided to us was largely unbiased.  There were two presenters: Jessica Thomas, a social worker and MS advocate who spoke about MS and its impact on the family and Dr. Jeffrey, an MS Specialist in the area who spoke about emerging therapies.

My major takeaways from Dr. Jeffrey’s talk:

  • Although there are an estimated 400,000 people in the US with MS, those numbers are based on 1994 data and the true number is likely much higher
  • MS is the leading cause of disability in young people in the US today
  • the etiology is unknown – it is guessed to be auto-immune or may be triggered by a virus in individuals with appropriate genetic susceptibility
  • It was thought that Epstein Barr Virus may be the culprit; however, it has not be found in the brains of patients who dies from MS complications
  • When MRIs are completed with contrast dye (gadolinium), the dye is picked up into areas of active inflammation
  • “Silent explosions” are lesions that are shown as enhancing lesions on MRI that may not be physically noticeable (no symptoms), but over time will lead to cognitive decline
  • There is typically a pre-clinical phase when patients experience silent explosions and patients generally do not feel good (this definitely happened to me)
  • For every non silent attack (spinal cord lesions or optic neuritis for example), there are typically 5-10 new silent lesions
  • In absence of treatment, Relapsing Remitting MS transitions to Secondary Progressive in 50% of cases and typical time to walking with a cane is 15 years (average)
  • The goal of treatment is to keep the lesion load to zero because you don’t want a lesion to hit at a strategic location (one spinal lesion can equal a wheelchair)
  • Ocrelizumab/Ofatumumab – Should be FDA approved in 2016.  Humanized form of Rituxan/Rituximab (monoclonal antibody) with positive outcomes in clinical trials.  80% decrease in relapse rate at 6 months and a 97% decrease in gadolinium enhancing lesions.  In a two year time period, only 2 of 200 patients had new lesions.

For those who are interested, the entire program was video taped and it is available online for viewing in two parts.  The first presentation below is Dr. Jeffrey’s talk followed by the Q&A.  For those who are evaluating MS treatments, I would highly recommend watching it.  His presentation goes through each of the newer medications in detail and he introduces several new drugs that are coming to market.  Of particular interest to me, Dr. Jeffrey talked about Rituxan (Rituximab) briefly – the drug that I am on.  You can hear that portion if you skip ahead to 1:10 or so and around 1:14 I ask about switching from Rituxan to one of the new medications in 2016.

The second video is Jessica’s talk about MS and the family.  Although we don’t have children and are not planning to have any, I think her talk would be hugely helpful for anyone who has MS and has/is around small children.  I appreciate many of her comments about adjusting to the disease.

If you have MS (or any chronic illness for that matter), I would suggest seeking education events like this one that is not sponsored by any individual drug company.  Unless you are specifically interested in the drug being promoted, this type of event will offer a much better, more balanced learning experience.

Rituxan infusions Galore

07 Saturday Jun 2014

Posted by in Treatment

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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.