Susan’s Hair Update #1

Well, my hair is still coming out at the rate of a brush full of strands a day. I went to see my stylist and he trimmed my hair up to my shoulders. I can pull it back into a stubby ponytail but no more braids for me, sigh. I thought he might cut it super short but his advice was to chop off all the length and leave it be. My pulled back hair still looks okay and it covers my scalp, so why chop it before we have to?

Isn’t it funny how there are certain aspects of our appearance that we feel define us in some way?  Mine has surely been my hair - very thick, brown, straight and quick to grow. I miss the weight of my heavy braid down my back between my shoulders. I have a feeling that when this hair loss grows back in (hopefully) it is not going to be brown anymore. The new little strands are all silvery grey. Am I having one of those dramatic hair color change episodes in my life after a seriously ill summer and some new chemo meds for the RA? Too funny.

The good news is how well the Rituxan is working for me. I am in month 4 after my first set of infusions and the RA symptoms are very much gone. I still get tired and my muscles get sore from being active again, but that is pretty normal stuff. Hopefully I can make it through the six month cycle with no flares, which puts me into early February for the next round of medication. No need for prednisone, pain meds or a cane, how good can things get?

I am also able to hand stitch again so my photo in this post is a close-up of my almost completed La Passacaglia quilt top that has been hand basted and stitched, made entirely of Liberty Tana Lawn fabrics. I was so crippled this summer that I did not sew much, but I have been playing catch up since the Rituxan has made me feel so very much better.

Here’s hoping tomorrow is another good day!
Susan

Big Day Tomorrow

It is time to visit my hair stylist and deal with this hair loss thing. I guess I am lucky that I started out with enough hair for at least two people. The problem is that I have seriously thinned out all over and one of those poor people has lost all of their hair! Isn’t it funny how we choose our hairstyles?  I have kept my hair long and straight because that is the best style with the least fuss for me. Having to change that hair style is a bit of a bummer.

I have to smile. All summer when I was so very ill my hair looked wonderful. This fall, now that I am feeling so much better my hair is falling out. There’s justice for you! The doctors are unsure about the reasons for this hair loss.  They seem to think it is not the Rituxan and Methotrexate combination, although they have prescribed a slow-release folic acid tablet for once a week in addition to the daily dose I have been taking for years.

Pretty much any actions are too little and too late for my hair. I have lost so much that even if it does come back I will be an oddity with short on top and long hair down my back. Thus, the trip to the stylist. If my hair can’t be its beautiful self, it has to be changed. Who knows, it may all fall out before this journey comes to an end! Ugh! I posted a “long ago” picture from 40 years ago just for cheering up purposes.  FYI, the “old hair” still looks (looked) pretty much the same.

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

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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