Update on Maggie's Pediatric Rheumatology appt.

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Hi to Everyone!

Just wanted to send an update for Maggie who had her appointment with her

Pediatric Rheumy today.

Because of all of her Immunology issues her autoimmune issues have had to

be put on hold. She has been on 29mgs of prednisone (down from 40 but dropping

at 1mg per week) her body notices each milligram decrease by causing her to

flare, not only in her joints but her organs as well. She is still taking 25mg

of MTX weekly and 200mgs of Celebrex daily along with folic acid 2mgs daily and

then all of her other meds for her other diagnosis's. For her Uveitis she is

still taking one steroid drop in each eye, every other day. (no cells, quiet

eyes, has cataracts in both of them)On her 4th lens change in 6 months.

So today Maggie's doctor has decided that she has sat back and waited

long enough, giving her immunologist time to get her IVIg regulated for her

Primary Immune Deficiency,so that her infection's would be greatly decreased.

Now it was her turn to become more aggressive with the autoimmune issues. Her

thyroid gland being the last official body part to have been under attack, she

also has non healing ulcers on her arms and legs (around 30 as of today) that

seem to almost heal and then break back open once again. Her arthritis is still

very active. Because Maggie's Cytokine level (messenger cells) is extremely high

they have decided to put her on Kineret, a Cytokine Blocker. In hopes to slow

down the progression of her arthritis and help her immune system at the same

time.

We also asked because Maggie was first diagnosed with Poly JIA and then

Systemic JIA and then at her last Immunology appointment her doctor said

Polyarthritis to us, exactly which it was that Maggie has. Apparently Poly just

means more than 5 joints have been affected. She is considered Systemic, but

does have Uveitis which is rare in a patient who has systemic JIA.......this is

one area I didn't get too worked up over as long as they take care of what is

going on.

Maggie is looking forward to starting the new med. She was told by her

doctor today that this is a painful shot at first but she would get used to it.

Maggie doesn't much care about the shot itself, she is a pretty tough kid. She

is just looking forward to losing all of the steroid weight that she has had to

deal with. This has not been easy on her bones either as she has had a broken

Tibia a month ago and all 5 metatarsals on her foot last week. The steroids make

her bones even more brittle which is not so great for a kid with OI.

After going around and around with our insurance, Maggie will be starting

Kineret tomorrow. She will be getting the prefilled syringes at 100mg per

syringe. Her doctor said if it was going to work at all it would be pretty

rapid. For anyone out there who uses this med for themselves or for their

children, how soon was it before you noticed a change?

Our fingers are crossed that this will be a wonderful addition to her

list of meds. Maggie isn't looking for miracles......just a way to get off of

those dreadful steroids that we have all learned to love and hate equally!

On that note, I think it is time for bed for me! I love to sit up late

when everyone else is asleep, it is the only time this house is EVER quiet!!

Thanks!

Diane and Maggie age 11 (OI,CP,Systemic JIA, Uveitis, PIDD)