Thursday, June 30, 2016

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!


Monday, June 27, 2016

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!

Saturday, June 25, 2016

There is No Cure for Rheumatoid Arthritis

Lather, rinse, repeat: There is no cure for rheumatoid arthritis. The disease can be managed across its many ups and downs, but it never actually goes away. Up until my recent bout of shingles and pleurisy, I was actually doing really well with my treatments.  Better than I knew, actually. It has been two weeks and I still can’t breathe well or do much of anything besides sit, read and rest. Even talking can be challenging, sigh. I have enjoyed being one of the few patients who takes the stairs up and down to the rheumatologist’s office on the second floor of the medical building.

I read an article with a recommendation for RA patients to do the things they want to do NOW since you can’t be sure you can do them later on. Seems like good advice to me.  I started a hand-pieced English Paper piecing quilt project called La Passacaglia several months ago for this very reason. Not only is it a gorgeous quilt, it is pieced and then quilted by hand. I have had no difficulty with hand or machine sewing, at least not yet.  Funny enough, I can’t knit very well anymore. The stiffness and soreness in my fingers makes my motions very rough and the resulting knitting looks like the collie chewed on it for a while.

My hope is to finish this quilt and begin a second pattern, but I guess you never know. Even on a good day, I am a very slow sewist. The limitations and pain can really impact doing the things you like to do, can’t they? The thought that striving for “good enough” may be the best that you get can be quite discouraging. On the flip side, maybe “good enough” is exactly what it says - good enough to get you through your days and keep you productive and happy.  Qui vivra verra, I guess.

Here’s hoping tomorrow is another good day!

Thursday, June 23, 2016

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!

Monday, June 20, 2016

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!

Sunday, June 19, 2016

What’s Next?

Well, after 18 months as an official rheumatoid disease patient, I find myself wondering just how all these treatments are going to go. One of the biggest helps to me are the numerous RA bloggers out there documenting their own experiences with the disease for the newer initiates into this mysterious cult. Thought it was time for me to join in. Hopefully, I can also add some value to the conversation.  I am one of many RA “science experiments” out there, coping with the daily challenges and hoping for a good day.