Riding the Rituxan Express

My second Rituxan infusion last Thursday was an express trip to hopefully feeling better.  Since the initial infusion two weeks ago was uneventful and I did not react to the medication in any way, this second infusion was on the proverbial “fast track”.  The drip speed was periodically adjusted upwards over the three hours that it took to get all that stuff into me.  As long as I felt okay (no headache or other odd happenings), we were going to get this infusion done in the most efficient manner possible. Amazing and a bit surreal, I must admit.

Once again, the methylprednisolone kept me up very late. My hands were not hurting so I was able to do a lot of paper piecing on my current quilt. Seems like the pattern is to sleep away the afternoon after the infusion and then be up late in to the night.  The rheumatologist is very optimistic about this new medication and my reaction to the first infusion.  Two months should be enough time to tell just how well (or not well) Rituxan works for me. So far, so good for this RA science experiment.

I have a short list of things I am looking forward to being able to do in the short term.  I have been unable to do so many things this summer, I am happy to see fall beginning as the nights cool off here and the bushes get their berries.  For me, this summer of pain and discomfort is one to let go and forget about.

My “want to do” list includes:

  1. Weeding and planting in my flower gardens
  2. Paper-piecing rosettes on my quilt project  
  3. Walking the dog every day around the ponds (a distance of 1.5 miles)
  4. Taking the stairs with no shortness of breath
  5. Carrying in the groceries myself, more than one bag at a time
  6. Walking, walking, walking
  7. Sleeping better and longer every night 

Not too ambitious of a list, is it?  I sure hope I can achieve these things that I used to take for granted.

The best thing is that I may be able to get my hair trimmed.  When I got sick, I decided I would not have it cut until I was feeling better.  Let’s hope I get there soon since my hair is almost to my waist – it is kind of like wearing a carpet down your back. While the rest of me took a beating from the pleurisy and the RA symptoms this summer, my hair was flourishing and grew like crazy. At least it didn’t turn white or anything. Go figure.

Susan

Back in the Flower Garden Again … FINALLY

Well, this week has been a much better week.  The best thing is that I find myself back in the flower gardens once again.  I have been hand-watering the flower beds and hanging plants with the hose every morning.  Guess that is my morning workout!  I do have to sit down about halfway through the process and catch my breath.  Never mind that, though, it is wonderful just to be back out doing a routine daily task every morning. I have even pulled some weeds, which is even more fun in a strange sort of way.

Per my picture and photos in previous posts, you can see that I like nasturtiums. For some reason, they grow really well here in Colorado for me and take over their pot or flower bed location on a regular basis throughout the summer. Who can resist a plant that does so well in this arid and challenging climate at 7500 feet of altitude? Too much fun.

This is a transition week for me with some things (but not too many things) to do, including jury duty.  As I continue to breathe better and move around more, my spirits rise accordingly. The RA flare still cycles from “so so” to really bad, but that was an expected outcome of the transition between biologics.  Fingers crossed that I am healthy enough for my first Rituxan infusion about two weeks from now. Looks like that will be the case unless something changes and surprises me.

I am working hard at sleeping better.  The afternoon naps are no longer allowed in the hopes I will sleep better at night.  Waking up after three or four hours of sleep and then getting back to sleep again is tough to overcome but I am trying. I read an article talking about how your body is active with oxygen during that time and that if you have lung issues you may very well awaken in distress and be unable to settle back to sleep.  I have no idea if this is really true, but as an explanation is sure fits the situation.

Funny how you miss the routine things you do as part of your life when you are feeling poorly. I suppose we all get used to those routine activities and forget that we ever missed them.  Guess that is okay, although I am going to try and remember what it was like to be seriously ill for six weeks of my summer and appreciate the little things more.

Here’s hoping tomorrow is another good day!

Susan

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Getting All Those “To Dos” Done

“That's the thing about pain.... It demands to be felt.”

John Green, The Fault in Our Stars

I have things I want to do and today I am going to try to do some of them – sewing, watering flowers, grocery shopping, and straightening up certain areas of the house.  This will be a slow process, but I think I can get a few items checked off the to-do list. My project manager’s mindset and RA are definitely at odds with one another as I try to navigate my to-do list while the RA gets in the way.  Guess RA isn’t a risk in my personal project plan – dealing with RA is a certainty for the rest of my days. That makes it a 100% kind of a risk, too funny. A good friend of mine has always said there are only two types of risk – those that happen and those that do not. Boy, was he right. (Thank you, Phil!)

Wow, this coming week is my sixth week of pleurisy and respiratory issues.  That is way too long to feel so bad.  Combine the past five weeks and an extra week before when the shingles struck and that equals no fun so far this summer. Ever so slowly, the lungs are clearing up.  The smoke from the Nederland-area wildfire here in Colorado kept me up last night. That was expected, so I had a new book ready for reading. I read the whole book, too, which was actually enjoyable.  The more I read, the faster I get at reading.  I need to rejoin the library before this gets too expensive. In any case, it is nice to see these lung-related symptoms disappear, and the sooner the better.

The bigger issue is the doctor-induced RA flare that I am experiencing, ouch. There are three more weeks until my first Rituxan infusion. I am definitely counting down during this Remicade to Rituxan transition.  And as I approach my birthday this week, I feel like I am 150 years old with all these aches and pains.  It is very discouraging to wake up in the morning and be really hurting.  My expectation is that sleep is restorative, but that does not seem to be the case with rheumatoid disease. Looks like sleep obsession may also be a common issue for RA patients. Ho hum, too many things to think about, isn’t it?

Interestingly enough, I am feeling pretty upbeat about everything in spite of the pain and the shortness of breath. Must be that glass half full thing going on.  Tomorrow should be a fun day.  I am getting “sprung” from the house by two girlfriends for lunch and have a date in the evening with a handsome man.  Who could ask for anything more?

Here’s hoping tomorrow is an exceptionally good day!

Susan

How Does Rituxan Work?

According to rheumatology.org, Rituximab is used to treat rheumatoid arthritis (RA) that has not gotten better with other types of treatments. Rituxan is usually given as two intravenous infusions, the second one fifteen days after the first. This is usually repeated at six month intervals. Rituxan works by turning off a part of the immune system that is not working properly in autoimmune diseases such as RA.

As I understand it, Rituxan is not actually chemotherapy. It is a type of antibody therapy that can be used alone or with chemotherapy. Rituxan is a cancer medication that interferes with the growth and spread of cancer cells in the body. In addition to treating RA, Rituxan is used to treat non-Hodgkin's lymphoma or chronic lymphocytic leukemia. I read an article recently that mentioned Rituxan is also in the process of being approved to treat MS.

Rituximab targets a protein on B cells, which are part of our immune system. These B cells produce antibodies, which are proteins that allow the body to remove infectious or other dangerous particles. B cells also produce chemicals that help other parts of the immune system do their jobs.

People with RA make B cells that do not work the way they should. These abnormal B cells do not interact properly with other parts of the immune system. This autoimmune response attacks a person’s own body even if there is no infection. Autoimmune responses can result in a number of different symptoms, such as inflammation of the joints (arthritis), with symptoms of joint pain, swelling and stiffness. By temporarily removing the harmful B cells, Rituximab can help control the arthritis, and can help control inflammation.

Well, there you have it.  I think I get the basics of Rituxan after translating all of the million-dollar words and scientific terms. 

Fingers crossed that Rituxan will be a good biologic for me.

Here’s hoping for another good day!

Susan

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Need More Sleep

Sure would be nice to sleep a full night’s sleep again.  I have been battling respiratory problems for four weeks now, and a good night of sleep is proving to be elusive if not impossible. Falling asleep at bedtime is not the problem. Staying asleep in the wee hours of the morning does not work for me.  I am able to sleep for 4 to 6 hours and then I wake up unable to breathe comfortably.   Talk about a hard “wake up call”, this would be the one.  Nothing like shortness of breath and rib pain to get you up and alert, whether you want to be or not. Add in the pain from an RA flare and you are ready to rock and roll, so to speak.

Yesterday was a high pollen day here in Colorado, and it definitely irritated my lungs throughout the day. The smoke from the many Western wildfires earlier in the month also got my undivided attention.  Guess I am one of those people they are warning when the TV or radio announcer says that the air is bad on a particular day and for people with respiratory problems to stay indoors or at least take it easy.  Wonderful.

I have been doing a lot of research on RA and sleep issues.  I have also been trying to find a way to overcome my inability to sleep at night, but to no avail. All of the recommendations for getting a good night of sleep tend to focus on falling asleep versus staying asleep until a reasonable hour. The meds I am taking may also be to blame, particularly the prednisone and the albuterol for dilating my lungs as needed.

One additional impact of my strange sleep schedule is that I am waking up my husband at these odd hours, too.  Even though he is able to go back to sleep, I know that my issues have an impact on his sleep, too. In the early days of this pleurisy thing when I was very ill, I would stay in bed and try to sit up and read or do a puzzle.  Bad idea when you are sharing your bed with another person as you are disturbing them.  Now I get up and leave the room versus trying to stay put.

This strange sleep schedule requires me to nap in the early afternoons just to get through the day.  I am certain that the nap is not the best idea, but it is the highest quality sleep I am getting right now. Not sure why it is easier to sleep a few hours in the daylight, but there you have it.

The good news is that I have gotten a lot of work done on my book revision in the wee hours of the morning, sitting here working in the kitchen with a cup of coffee. The cat likes me better, too, since he can come down for a snack in the wee hours of the morning and then head back to bed. The collie thinks I am great as he heads outside when it gets light and enjoys the cool summer morning.  Pet brownie points are pretty much my only reward.

I have also learned that the hummingbirds start feeding about an hour before the sun rises. Still hoping to see some interesting nocturnal wildlife (foxes, raccoons, porcupines, bears, bobcats), but so far no interesting animals have appeared around the house for my viewing enjoyment.

Any suggestions for extending a short night of sleep into something a bit more normal?  I would welcome them.

Here’s hoping for another good day!
Susan

Switching to Rituxan

Okay, let’s take a closer look at this Rituxan (Rituximab) infusion I will be receiving in the near future.  Genentech makes this particular biologic although it is jointly marketed by Genentech and Biogen. I initially used Enbrel and then Remicade, but my rheumatologist was unhappy with the results and is switching me to Rituxan as my third biologic.

Rituxan® (rituximab) is a chemo drug that is also used as a rheumatoid arthritis treatment.  It is used in adults with moderate to severe RA, and it is given along with methotrexate after another type of treatment, called an anti-TNF, hasn't worked well enough. I will be taking it with methotrexate, just as I did with the other biologics in the past.

I am still recovering from the pleurisy brought on in part (we think) by the Remicade.  That will take a few more weeks.  I deliberately scheduled my first two Rituxan infusions beginning 4 weeks from now to make sure this very slow healing process is complete.  Otherwise, it seems like a risk to mess with my immune system and have the pleurisy return with a vengeance.

Like all meds, Rituxan has some side effects.  Some of the side effects can occur during the infusion itself.  The side effects range from minor to quite serious.  At this point in my RA treatment, I think I am ready to try a new approach.  As I wait out the last of the Remicade in my system, I am becoming aware of just how bad my RA actually is.  Life in a permanent flare is not much fun and I would like to be able to be active once again.  It is easy to forget how bad you feel when a biologic is working some or all of the time to help you feel much better.

Looks like most folks get their Rituxan infusions every 6 months or so.  According to the website, Rituxan has been shown to provide up to 6 months of symptom improvement from 1 course of treatment (2 infusions, given 2 weeks apart). Sounds like a long day for this first infusion, stay tuned and I will let you know how it goes as we get towards the end of July.

If anyone is currently taking Rituxan or has done so in the past, I would welcome your comments and thoughts about this medication.  Many thanks!

Here’s hoping for another good day!

Susan

Gardening or Sitting Still?

Happy Monday! I woke up this morning up at 4 am unable to breathe, so I came downstairs and started working on my textbook revision at the kitchen table. I am still amazed at how gravity and I can disagree. Seems like I can sleep about 5 or 6 hours max with this pleurisy thing, and then it is time to be upright for a while. This is an absolute requirement versus an optional requirement.  Plus it would be rude to lay there gasping for breath and wake up my soundly sleeping husband. I know I am his major sleep disruptor these days, so I try to keep the disruptions to a minimum. It can’t be easy being on the other side of this RA equation. The scope of the challenges this chronic disease brings into your family life is remarkably large and complex.

Seems like this is the absolute slowest recovery ever. I can’t walk more than 10 steps without having to pause and catch my breath. I can’t bend over to pick things up. Going down the stairs is okay but coming back up is a challenge. Wonder how we will know when this is over with and the Rituxan infusions can start without additional risks to my health and especially to my lungs? This could take a while. Pleurisy plus major RA flares equals no fun. I am officially an invalid for the foreseeable future.  No fun and actually a pretty lonely existence when you are used to being out and about.

As I sit here typing, I find myself wanting to go outside and work in the flower gardens. Danny has been watering and weeding for me in addition to his other yard chores, such a sweet man. Guess I am lucky that my Colorado flower beds are mature and forgiving of my neglect. My best friend Peggy came for a visit with the “sicky” and spent time planting some new Bachelor Button plants for me where the voles ate everything during the winter. Alas, no gardening for me today or probably in the foreseeable future. I can’t bend over and breathe well at the same time, at least not yet.

Here’s hoping for another good day!
Susan