Rocckyd - how's it going? | Arthritis Information

Rheumy feels the Rituxan is not the med, we just aren't quite sure where to go from here.  I have until around May before we can due a major med change.  He told me to look back over other meds and we would research the new ones.  Orencia came up again even though I already took it.  While on it, the jaw was not as active and I did not have the heart/lung issues.  But was it the med or is it because the disease had not prgressed that much?  He upped my Neurontin to 1800mg a day. I am still on the MTX, perocet, and fentnyal patch.  He is not happy with my pain level, but I don't want to up the pain meds.  He wants pain controlled, but I want fewer meds.  I see the pain dr. in 2 weeks and I told the RD that we can leave the pain meds as is.  RD gave me a big hug and told me that he would fit me in earlier than May if need be.  The concern is when the chest/lungs flair.  I need to stop the hyperventaliation that comes from the sternum pain before I end up in the ER.  My RD is easier to get ahold of then the pain dr.  But Rd has stressed that if this happens and I can't get in, I need to ER it.  Blech.

 

I go to MCV(Medical College of Virginia) on Monday for the jaw replacement consult. I picked up my file from the surgeons office and they joked that I broke the copier with the size.  Hmmm...  It'll be about a 3 hr drive.  It seems this is a very well respected Dr. in the jaw world.  My pain dr. also knows of him.  As I have mentioned, there are only  a few drs that seem to be well trusted in this field.  Makes me thankful that I have a medical team that sees the issue and seeks out the right dr.  I feel alwful for those that have the pain(jaw) but not the "proof" that comes from damage.  Those are the people that end up with the "sketchy" drs.  Anyway, according to my drs here, it's this MCV guy or one in Florida.  Wish insurance would foot that bill!

 

Eyes are still not good.  The sjorgren's is just going to town.  My eye dr. is going to the dry eye clinic at Duke for a workshop.  He had mentioned sending me down there so he said he would look around.  He is there to get info about a new contact lense that is therapuetic for dry eye.  He said the main problem is the insurance coding and getting coverage.  He is hoping that he will get the info he needs this weeks and then we can just consult wtih Duke.  I've been to the RD and the jaw guy there(who also wants MCV), don't want to add the eye clinic!  If it is to be, they are really good with scheduling appts so it's not back and forth.

 

Whew....that's long!  I have PT a 9:00am so I guess I had better get ready.  Little man is off to school.  We saw CATS last night and he loved it.  Woke up singing the songs and is taking the program for show-and-tell.  It was a late night, got home after 11:00pm.  But it was so worth it :)

Thinking of you, it is difficult to deal with compound health issues and a young family. I wish you the very best. Have a good weekend and remember to rest a bit, be good to yourself.

I understand you want less meds, but it is not good to chase the pain. Do not worry about the pain meds, if it means being able to keep up with your family and your life while you actively try to get the health issues resolved I see nothing wrong with controlling the pain.

 

Best to you,

Lisa