Friday, November 22, 2013

More drugs, More M.R.I.'s, Less pain...maybe.

Savannah saw her juvenile rheumatologist yesterday.  Here is the latest:

Savannah's back pain has greatly increased...the rest of her joints are about the same  (in pain, but manageable).  The newest treatment is this:

-Continue taking Sulfasalazine twice a day orally.

-Adding Methotrexate, by injection, every Friday (hello methotrexate, again). For those who don't know, Methotrexate is a chemo drug. 

-Going to try a muscle relaxer at night to see if it helps with the back pain.  This is only temporary (like a couple of nights)...just to see if it helps.

-The word "Humira" came up.  For those unfamiliar with Humira, it is a biologic drug and it is a real burner when injected.  I (mom) told the doctor "no", but Savannah said "yes, if it will help"...even knowing it is a burner.  This reflects to me how much pain she is truly in sometimes.  Thank goodness the worst is only at night and after she sits a long time.

For now, we will leave off the Humira and see if the combination of sulfasalazine and methotrexate will do the trick.  

Savannah will also have another MRI performed in December to check on the arthritis in her jaw.  Savannah has had more pain in her jaw lately (which she made me promise not to tell to her doctor), but when the doctor asked her point blank if she had any pain, she knew she had to tell the truth.
Here is how the conversation with the doctor goes:

Doctor: "Savannah needs another MRI on her jaw."
Me: "Okay, but can we do the MRI in Montgomery instead of Birmingham?"
Doctor: "No. There are only two MRI machines in the state that have the coil needed for this MRI procedure.  They are both at Children's Hospital in Birmingham." 
Me:  "But, Savannah has already had two sets of steroid injections to her jaw.  What more can be done?  I thought two sets were the limit?"
Doctor: "We might could do a third set, or we could do Remicade injections to the jaw."

Okay, now my wheels are spinning!  I have a JA mom whose daughter had Remicade injections to her jaw.  Though, it corrected one side perfectly, the other side of her jaw had tremendous overgrowth that will now have to be corrected with jaw surgery!

Me: "I don't want Savannah to have to have Remicade injections to her jaw."
Doctor:  "Well, do you want her mouth to only open wide enough to eat a small hotdog, because this could happen if the arthritis gets worse."
Savannah: "That's okay.  I don't like hotdogs anyways!" (:

Interesting things we learned that may benefit other Juvenile Arthritis families:

- Taking, both, sulfasalazine and methotrexate can have great benefits (or so the doctor says).  The two can work well together, especially if one has seen improvement with them when taken individually.

- When I asked the doctor if Savannah could take Embral (which is also a biologic, but not a burner when injected) instead of Humira, he said Savannah could NOT take Embral because of the Uveitis she has had in her eye...Embral can actually increase your risk of  Uveitis if one has had it previously.  

Regardless of it all, Savannah keeps smiling!  I watched Savannah run with her friends at school today and participate in a potato sack race!  This is something she could not have done just two years ago...prior to starting her medicines.  For this, we are so grateful.  It made my heart sing!
 God is good, all the time.  

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