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

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

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

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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