The Good, the Bad and the Hair Loss

Woke up this morning to the first snow in Monument this season. Very nice. Hoss thought the cold weather and the snow was great - just what a collie would ask for. This is pretty early for a first snow.  Wonder what that says about the pending winter season? Heard on the radio yesterday that Loveland Ski Area had fired up their snow-making machines as snow started falling in the high country. In my family, it’s time to get those snowboards waxed and ready to go!

I am still feeling pretty good after my first round of Rituxan infusions in August.  The RA symptoms are quite diminished and I am able to do many things I could not do during my biologic-fee, super flare summer. Wish I could say that all of the pleurisy issues had also packed up and left, but no. The breathing stuff is slowly getting better but seems determined to hang around for the fall months. Ugh.

I have discovered that there are some interesting Rituxan side effects, at least for me. The biggest negative is that I am losing a lot of hair every day in my brush.  This has been going on for a while and I can tell that my hair is getting thinner.  Right now my hair is fairly long and it started out pretty thick, too. Good thing! I may actually have to get about 6 to 8 inches trimmed to take the weight off of my hair and make it look more full again. I am taking folic acid already for the potential hair loss from the weekly Methotrexate and hoping that this hair attrition slows down and stops soon.

I have noticed that I blog less when I am feeling better. That is a good thing.

Hope this hair loss thing slows down soon! Otherwise it is a crew cut for me. Not sure what I think about that possibility...

Susan

Now I’ve Gone and Done It…

Took a little trip to the Colorado Department of Motor Vehicles (DMV) yesterday with paperwork in hand from the doctor authorizing a handicapped-parking placard for my car. Ugh.  I am not sure what was more upsetting – having the actual permit in hand or realizing that now I have something more in common with my 83-year-old dynamo of a mother since she has a handicapped parking permit, too.

Somehow this feels like a checkmark in the “lose” column to me.

Acquiring this parking placard came about after a recent trip to the mall and a very slow, breathless walk from the car into the mall itself. This was a not unexpected experience as the pleurisy and its annoying symptoms continue to hang around. When I visited my family practice doctor on Monday for my “pleurisy checkup”, I mentioned this laborious walk into the mall and how challenging it was to go from point A to point B when those points are not that close together. End result: the completed and doctor-approved application for this parking placard and my subsequent trip to the DMV. 

Hopefully, there will be many good days and this placard will not be necessary. I have to admit; on the bad days, being able to park closer to my objective will be a wonderful thing. Admitting the need for something like this is where it gets more complicated. Am I giving in to RA by recognizing and acting upon these cyclical physical limitations? The grownup me says “not at all” but the younger me says “loser!”  I imagine this is a situation many RA science experiments have found themselves in. How did you deal with it?

My first Rituxan infusion has resulted in much less inflammation and pain, which is a big help. My second infusion is next Thursday and I am hoping things will get even better still after that. The pleurisy’s slow disappearance is really the bigger, ongoing issue. I still have some pain on the right side and shortness of breath if I walk too fast or try to carry something heavy. Perhaps the new parking placard will be used every now and then versus used every day.

Here’s hoping tomorrow is another good day!

Susan

An Infusion for Susan

Well, my first Rituxan infusion went off without a “hitch in it’s giddy up”. After having the infusion postponed for two weeks, I was worried it might get deferred again yesterday. However, that was not the case. After four hours hooked up to the IV, I was ready to get up and move around. Once again, I had my technology, my books, my snacks and a bottle of water neatly packed and ready to rumble. This time everything came in handy to pass the time.

The nurse started out the IV drip really slow, and treated me with all of the additional reaction drugs I was expecting – Ibuprofen, Methylprednisolone and Benadryl. After about an hour, she turned up the drip a bit as everything was going very well and I was not reacting to the Rituxan in any way that I could tell. The only eventual reaction that I had was to the Benadryl.  It made me fall asleep for about an hour or so.  Sure hope I didn’t snore!

I slept away my afternoon and stayed up too late yesterday evening as a result.  The good news is that today I really feel good.  The inflammation and pain has subsided and I can move around much more freely.  The shortness of breath and rib pain from the pleurisy is still here, though.  Let’s hope that continues to fade away over time. My second infusion is two weeks out on a Thursday and then I won’t have another for about 6 months.  Now that is an infusion schedule I can live with.

Hoping tomorrow is another good day (and I think it will be!)

Susan, the RA Science Experiment

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