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Friday, October 2

Dr. A.W. called with Julia's blood test results today. Good news! Most of her results are in the normal range, and the only one that isn't, the LDH, is "not worrisome". She also said that, because we had the 9/10 tests done at a different lab, they might have different procedures for testing that can cause some variation in the results, so the fact that some numbers and higher and some aren't is okay.

Therefore, we're going to increase Julia's Methotrexate dose by just one pill, to 22.5mg, starting tomorrow, and we're going to continue taper her off the Prednisone at the rate of 2.5mg per week until we see the doctors again in a few weeks.

3/3 Test: 11.8 659 301 60 36
3/24 Test: 5.0 39 227 15 12
4/21 Test: 7.0 27 310 20 9
5/27 Test: 2.0 60 398 31 20
6/30 Test: 3.9 68 279 23 18
8/25 Test: 5.2 251 332 41 36
9/10 Test: 7.0 48 206 22 25
9/29 Test: 3.2 77 335 27 25
Normal Range: 0.0-7.0 4-150 110-295 10-34 6-59

Saturday, October 3

We went to another wedding today, and this time, we all had a wonderful time. Unlike her last wedding reception, Julia was in a great mood. She looked beautiful in a long skirt. She was fascinated by the various and sundry traditions of the reception - cutting the cake, throwing the bouquet (yes, she tried to catch it), clinking glasses, and so on. And my, how she danced! Once the general dancing started, we couldn't get her off the dance floor (except during slow ones). She was a lot of fun, and helped make it a memorable day for us.

Oh yeah, another Saturday, another drop in Prednisone dose. Also, she starts with the additional Methotrexate dose today, 9 pills!

Current Drug Dose: Prednisone: 20mg Plaquenil: 200mg/day Folic Acid: 1mg/day Methotrexate: 22.5mg/week

Sunday, October 4

Julia took the Sacrament of the Sick again today. Our parish does this the first Sunday of every month, except during the summer, and we couldn't come last month, so it's been several months since she's gone. It's a wonderful little ceremony that our priest performs. Julia is the only child there today; it's mostly the elderly that come.

Julia's rash has been looking very good in recent weeks. The last time she got the Sacrament, the oil made the rash on her hands look terrible, just accentuating every red spot and papule. Today, it looked almost normal. The hands are looking very good, especially. She still has it on her face, especially the eyelids, but I think even that is getting a little better. Maybe the Plaquenil is finally starting to get her rash to look better.

Monday, October 5

A bit of hopefully good news - starting today, the town is running buses exclusively for kids going to Julia's school. Julia was thrilled to hear about this because of the hassles she had been getting from the public school kids on the bus. The problems on the bus were the most serious she'd had to deal with. Unfortunately, this was like the first day of school all over again -- the bus was very late picking her up, and she didn't get to school until almost an hour late! Clearly, that's unacceptable. We're hopeful that this is just a temporary snafu because the driver is new to the route.

Thursday, October 8

The bus situation has gotten better, little by little, as the week goes on. Still, they were 15 minutes late to school today, which is unacceptable in the long term. There's no buses tomorrow, and no school on Monday (Columbus Day), so maybe they'll have things together better by next week.

Saturday, October 10

Another Saturday, another drop in Prednisone dose. It seems like her rash has been terrible towards the end of each week, and then looks better after she gets her Methotrexate. This week is no exception. Her rash looks awful today! Her face is all red and blotchy, and the papules are even showing up on her knuckles again. This is getting discouraging. I suspect that her body is anticipating the weekly dose of Methotrexate. I have no medical reason to suspect this, but it makes sense.

We did go to another wedding and reception today, but Julia just went to the mass. It was a miserable rainy day, and the limo picked up the bride 45 minutes late! Julia actually fell asleep during the mass.

Current Drug Dose: Prednisone: 17.5mg Plaquenil: 200mg/day Folic Acid: 1mg/day Methotrexate: 22.5mg/week

Sunday, October 11

Well, it does seem like the rash looks better today, at least noticibly better than yesterday. Maybe there is some correlation to the MTX. Perhaps I'll ask the doctors about this possibility.

Tuesday, October 13

The bus is still running late, but I'm not complaining. Since the town started providing seperate buses for the kids from Julia's school, the problems with the public school kids on the bus giving her a hard time about her rash are gone. I also want to comment that Julia's rash is looking very good today, the papules on her knuckles, which seemed so pronounced over the weekend, are almost invisible. Weird.

Saturday, October 17

We had a "block party" today - actually, we live on a dead end street, so we had the party in the cul-de-sac. It was a great time! It was nice to socialize with our neighbors and meet some of them for the first time, and Julia played taclke with all the boys. Lots of cute kids here. We all had a lot of fun.

Julia's face rash does not look good again today, but I expect that, like last week, it'll look better tomorrow or Monday after the Methotrexate kicks in. At least her hands don't look too bad. We'll see.

Current Drug Dose: Prednisone: 15mg Plaquenil: 200mg/day Folic Acid: 1mg/day Methotrexate: 22.5mg/week

Sunday, October 18

Julia's rash has been looking terrible on Sundays recently, and today is no exception. We did a road trip to visit Julia's grandparents in Connecticut (Praise Be! They finally raised the speed limit to 65 in CT!). The rash on her face is so read today, it makes me think I should call the doctors to ask about it. The papules are all over the backs of her hands, and even on her wrists. Of course, accusatory questions about whether we're doing everything possible for Julia don't help us cope with this.

Monday, October 19

Okay, the rash look better today. We'll hold off on calling.

Saturday, October 24

Current Drug Dose: Prednisone: 12.5mg Plaquenil: 200mg/day Folic Acid: 1mg/day Methotrexate: 22.5mg/week

Sunday, October 25

We definitely seem to be in a bad pattern here. The rash seems to be worsening with each passing week. When the rash looks this bad, the slightest complaint of tiredness evoke feelings of fear and panic - is the JDMS reasserting itself again? We're going in for a checkup next week; if the rash doesn't look better by tomorrow, they're getting a call.

I thought today that the combination of the effect of the Methotrexate dose coming up, plus the weekly drop in Prednisone dose, could conceivably be causing this. Maybe we're tapering the Prednisone dose too quickly? When you're at 30mg, dropping the dose by 2.5mg is a reduction of only 8.3%. However, at 20mg, the reduction is 12.5%, and at Julia's current dose of 12.5mg, Saturday's coming drop will be a full 20%. That would be the same effect as dropping the original 30mg dose by 6mg all at once. Her body, and the disease, may just be reacting to the change in Prednisone dose. This, I will definitely ask about.

Monday, October 25

Disaster averted once again. The rash is looking better again this morning.

Friday, October 30

Well, Halloween is upon us. Today is not the actual day, but for Julia, the celebration begins! This year, Julia is dressed as a devil. Her mom hand made the costume, as is the tradition, no matter how much time pressure it puts her under. It's beautiful! Julia's in bright red from head to ankle, with a pointy tail and little horns on her head. So cute!

The festivities started in school. They had a Halloween parade. Julia's mom actually left work and went to the parade then went back to work. This was a surprise to everyone, especially Julia! She said that the kids' costumes were very good, and they all had a great time showing them off. Some of the kids (including Julia) brought in treats to share with their classmates, so Julia already had some loot.

One of Julia's classmates invited her to a Halloween party at her house. The invitation came in just a couple of days ago, but we didn't have any plans, so we decided to let her go. The party was in an old victorian house with a musty, cobwebbed dirt floor basement, and they set up a "haunted house" in the basement. A bunch of older kids (6th graders, I think) had set up decorations and were all in costume. They hid in the dark corners and jumped out at everyone as they waled through. Spooky music was playing, and weird lighting added to the mood. It was very well done! After going though the "haunted house", they played flashlight tag outside, and did some dancing inside. Julia was up very, very late (her bedtime is 8:30, and she was up well past 10:00), but she had a great time, and we got some free babysitting (which we took advantage of to go to one of our favorite restaurants, alone for a change).

On the JDMS front, at least Julia's rash is making her costume look more authentic. The rash seems to be getting worse and worse every week, and we fear that we're in for another setback when we get her tested next week.

Saturday, October 31

Happy Halloween!

We were getting ready to go out and run a few errands. As Julia was getting ready, she showed some anger and frustration about the JDMS. She was getting dressed, and had stepped on the scale, and thought she may have gained a few pounds. She started crying, and yelled "I hate my meds! I hate my disease!". She must have just stood there and cried for about 5 minutes. All we can do is hold her, tell her it's okay to feel that way, that we're doing everything we can to make her better, and that we'll always be there for her.

In the afternoon, we drove to visit some relatives to trick-or-treat. We do this a few times a year to visit and to catch up a bit. One relative we visited has Rheumatoid Arthritis, and takes a lot of the same medicine that Julia takes. She takes Prednisone and Methotrexate. They were able to commiserate about their medicines and their side effects.

Trick-or-treating in our new neighborhood was actually very encouraging. On our street, one side of the street has the houses placed high up on hills with long, steep driveways (which must be a lot of fun when it snows :-/). There are 33 houses and all but three were giving out treats. Julia climbed each and every driveway by herself. She showed me absolutely no sign of any weakness or fatigue in the time we were out, more than an hour and a half. At the end of it, she didn't even seem that tired. We even took a ride to visit her day care, and our old neighborhood. She was great.

Julia's mom & I talked about Julia at great length that night. She has been extremely discouraged lately by the rash, and has been very worried that her blood tests are going to show a marked deterioration. Of course, I fear that too, but after seeing her climb those hills like a mountain goat, I was very encouraged. The muscle weakness is the most serious symptom of JDMS, and she is showing little, if any, of it.

Julia's Prednisone dose drops by a full 20% to 10mg today.

Current Drug Dose: Prednisone: 10mg Plaquenil: 200mg/day Folic Acid: 1mg/day Methotrexate: 22.5mg/week

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Updated December 23, 1998
Copyright © 1998 by Ralph Becker <ralphb@whoever.com> send me Feedback!
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