No Infusion for Susan

Well, on the one hand you could say that my first Rituxan infusion was quite uneventful.  Unfortunately, it was uneventful because in the end there was no infusion.  When I got dropped off on Wednesday morning, I was ready to spend the afternoon hooked up to the IV stuff.  I had my technology, my books, my snacks and a bottle of lemonade neatly packed and ready to rumble.

When I got to the doctor’s office and checked in at the desk, I stopped to ask them about resuming my methotrexate.  I have not been taking it this summer since the pleurisy episode and could not remember how to ramp the dosage back up to what it needs to be. 

That comment started the conversation about how I was feeling and what my current pleurisy symptoms were.  There are some lingering issues such as occasional shortness of breath, trouble laying down flat, and rib cage pain spasms (ouch, these really hurt!)  To make a long story short, the doctors at the practice put their collective heads together and decided that I needed more time for my lungs to heal up before having an infusion of any type. The fear is that the infusion will set me back to square one with the pleurisy, which started with a three-day hospital stay. Yuck.

So, I called my husband and he came back to fetch me.  Right now I have an appointment for the infusion in two weeks, but I am not sure if it will actually happen.  I do appreciate the rheum doc team thinking things through and making a decision.  Guess we will have round two of that situation in about ten days from now. Fingers crossed that everything works out as it should.

In the meantime, it is prednisone and painkillers as needed to address this major flare I am living with during the dark days of no biologic medications in my system.  If I wasn’t a fan of biologics before, I certainly am a fan now.  The good thing is that my flare cycles and I seem to have a variety of days in sequence – a good day where I typically overdo things, a bad day after the good day when I pay for my overdoing and then an in-between day leading to the next good day. The days themselves also have a pattern – feeling pretty good in the morning and then sliding down that slippery slope until I am really hurting by evening time.  Does anyone else have days that act like this?

So, more adventures await! 

(Couldn’t resist the post title, too funny.)

Susan

Are We There Yet? Not Quite …

Here I sit on this beautiful Monday morning, counting down the days to my first Rituxan infusion on Wednesday.  Almost there, almost there. I am curious what it is like to undergo such a long infusion process after the relatively quick (2 hour) experience of Remicade infusions. I am wondering what it is like to have to have IV steroids, antihistamines and analgesics as part of the infusion process and how much they help the recipient.  I am worried about why the extra stuff is needed and a bit concerned about the possible side effects or complications of this medication.  Ah well, all questions will be answered on Wednesday this week.

Last week has been my best week since I got sick at the beginning of the summer.  Breathing is better and overall lung health is very much improved as the pleurisy continues to clear out.  If I wasn’t in a permanent RA flare sans any infusion meds in my system, I would be very chipper. 

The very best thing has been driving my car (her name is Sylvia, bestowed upon her by my mother) again and getting out and about.  Isn’t it funny how the little things mean so much?  It is great to do errands, run out for coffee, or pick up a grandchild whenever I want to or whenever required.  I saw a friend in passing yesterday and was delighted to wave to her from the window of my car. These little freedoms are easy to forget in the hubbub of daily life, but you really miss them when they are gone from your daily hubbub.

Never a dull moment.  Almost there!

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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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

Whatever Happened to “No Pain, No Gain”?

This daily pain thing is quite challenging. Right now I am in-between biologics as I try to recover from pleurisy.  Transitioning from Remicade to Rituxin is a bit intimidating, but I am willing to make the switch. These are the times when you realize just how bad the unmasked RA actually is and how much it hurts.  No fun.

I have been doing a lot of reading about pain medications and the current push to deny people in chronic pain their pain medication.  This “nanny state” perspective where everyone who takes pain medication is an addict is simply ridiculous. It is like saying that everyone who eats will continuously overeat and become overweight. The logic does not hold up for this argument. Some folks (me included) take pain medication so they can function and get through their days. Pardon me, but isn’t that what the pain medication is for? I am NOT an addict, not even close. What are these people thinking?Stay safe, stay warm, stay

Every time I read an article where some expert says that managing pain is a mental exercise or can be achieved through a change in diet, I think about zapping that person with some serious RA pain for a 24-hour period. Wonder if that zap would change their point of view? Right now I am typing at my kitchen table and ignoring how much my hands and wrists are screaming.  My preference is to take pain medication at the end of the day when things seem to be at their worst.  I may have to change my preference, though, since this transition period does not follow any rules that I can see for what hurts and when it hurts.

My mother always tells me that there is a time to be brave and a time to be practical. She is correct, especially when it comes to treating RA pain.  Of course, I should know by now that my mother is always right!

Here’s hoping tomorrow is another good day!
Susan

Complications, Complications, Complications

Until recently, I felt as though we had my RA under control with Remicade infusions and Methotrexate pills. As a novice science experiment, I did not realize just how tricky the disease could be and the many ways it could come after me.

After my most recent infusion, I developed a case of shingles, ouch. Now that hurt! I guess the shingles indicated a weakened immune system, and a week later a nasty respiratory virus stepped in to grab me. Two weeks and now I had two illnesses I had missed out on before: pleurisy and the shingles. This is the first time I have been seriously ill as a science experiment, and the doctors think the Remicade and the RA were key contributing factors.

I never realized just how nice it is to be able to breathe freely and without pain. After three days in the hospital, I came back home to ride out the respiratory issues. It is going to be a longer ride than I thought.  The other outcomes from these illnesses is no more Remicade for me. I am being switched to Rituxan after the respiratory issues clear out. Scary, scary, I have watched the folks getting their Rituxan infusions and it seems more daunting then two hours of a Remicade drip.  The side effects seem more staggering as well.

Of course, this means that I will be in a painful state for the next 4 to 6 weeks, taking only Prednisone while the Remicade leaves my system.  Having RA flares along with not being able to breathe truly adds insult to injury.

Here’s hoping tomorrow is another good day!
Susan
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