RD appointment/jaw update | Arthritis Information

This was my first time seeing him after starting the Rituxan in Feb.  It was actually a rather long appointment.  Sometimes I feel like he just rushes in and out.  Just when I get frustrated enough to say something, I have what seems to be a very in depth appointment.  I know it is because it is a teaching hospital and he always has a ton of interns.  He does make it clear that if I have any questions to call.  He does call back on his own time in the evening.

 

Anyway.....I had a number of inflammed joints.  He was hoping for less.  But, the sternum was not nearly as red and inflammed as usual.  That alone is enough for me to call Rituxan a success.  He was very intrested in the jaw. He had the OR report and was very surprised at the amount of synovitis and damage.  He said I was his only patient who had had such indepth surgery.  Glad to keep it interesting.  He was initally going to prescribe prednisone to try to break up the inflammation cycle but then decided not too due to the jaw.  Pred. does slow down healing and he wants PT and any other procedures done.  As much as I would have welcomed the pred. relief, I have been totally off it for quite a while.  I am very proud of that fact.  He did say that after I was discharged from PT and he had talked to the oral surgeon, he would like to prescribe a pred pack.  I appreciate that he wants the swelling down-I just hate pred.  I really wanted to decrease my Mtx but he was not for it at all.  He does feel that my body has been under alot of stress since Nov. with the multiple jaw procedures.  Hopefully, things will calm down.  He did bump up my next infusion to June.  He is hesistant to make them too close due to the fact that I teach and the kids are always carrying some germ.  Doesn't want to wipe out the immune system.  I guess I see the logic, but my white count has come back high that last 3 tests.  He says that is due to inflammation, not fighting infection.

 

There hasn't been much improvement in the jaw, but I am still hopeful.  PT has gotten much more aggressive since the last procedure.  We are tyring to prevent the scar tissue from reforming. 

Basically, I just hurt. There is not other way to put it.  I have been relying on the pain meds way more than I like.  Both the therapist and pain dr. feel that it is necessary.  I take percocet first thing in the morning and then again when I get home from work.  I just hate it.  Oh well...you do what you need to do.

 

It seems like many of us are stuggling right now.  Maybe instead of April showers bring May flowers, we should say that April is just a rotten  month....

 

 

 

 

 

 

 

 

Keep hanging in there! I hope your jaw improves soon and the Rituxan kicks in even better!

 

I am being discharged from PT on Friday.  Not because the issue has been solved, but because something else needs to be done.  Surgeon called me on Friday and feels that the joint is healing correctly, but that my muscles are so tight that they are limiting movement.  I am still stuck at 20mm.  30mm is considered functional---gotta love being disfunctional!!    Anyway, he wants my pain dr. to inject the muscles with Botox.  This will paralyze them and the allow them to relax.  Hopefully this will bring some improvement in opening.  I was trying to eat Cheerios and half of them fell off the spoon cause I couldn't get my mouth open enough.  Pathetic!!!  I see the pain dr. on Monday-we'll see what he says.