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JUNE 04 |
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FEBRUARY 2004
Dosage
change
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PREDNISONE |
ZANTEC |
FOLIC ACID |
METHOTREXATE |
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25 mg/day/AM |
75 mg/day/AM |
1 mg M-F/AM |
12.5 mg Twice Daily Saturday ONLY |
Twice/daily |
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ADJUSTED |
MEDS |
EFFECTIVE |
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NEORAL |
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20 mg/day/AM |
75 mg/day/AM |
1 mg M-F/AM |
12.5 mg Twice Daily Saturday ONLY |
Twice/daily |
Today I
received the box with Ian’s Cyclosporine refill from the mail order pharmacy.
This was NOT the medication that Ian needs. It was cyclosporine but it was NOT
the NEORAL MODIFIDED Solution. It was cyclosporine but it was Sandimmune. As you
can see below this is not the same thing. I was alerted to a possible problem
when the pharmacy called to schedule the delivery.(the stuff is temperature
sensitive and needed to have someone home to receive it) they gave me a
“quiz” on what I was receiving to make sure that it was right. When
I told the woman NEORAL she said no and then I told her Cyclosporine and STILL
got a no. she told me Sandimmune and I was a bit confused but realize that
because of WHERE my mail in pharmacy is located (FLORIDA-generic substitution
is MANDATORY) ok generics have never been a problem before. When I get the
package I open it and read the front of the box. It says Sandimmune is NOT
equal to NEORAL and the NEORAL box says it is NOT equal to Sandimmune.
Neoral®
and Sandimmune® (cyclosporine, USP) (see product safety information) are
not bioequivalent and cannot be used interchangeably without careful monitoring
of cyclosporine blood concentration and dosage adjustments based on individual
response.
Great this is NOT what he needs,
at the time I’m not sure why but, I know it isn’t right. I
immediately call the pharmacy, and they tell me that the Dr. ordered
Cyclosporine and they dispensed it correctly. There is nothing they can do,
they won’t take this medicine back and they can’t send me the NEORAL unless they get another prescription in.
Oh now doesn’t this just
suck. I have to leave for school in an hour and Ian is almost out of this med. (which by the way costs
$71.89 AFTER insurance for 1 bottle at the local CVS, if I get it mail
order it is $35.00 for 2.)
I place a call to Dr Susan and leave
a message; about what the bottles say and that I need another script called in.
I try to explain it the best I can to the
sitter when she arrives that the Dr will call back, but that didn’t go so
well. I head for school
When I get home the sitter tells
me the Dr. did call but neither of them really understood what I meant.
Around
I also asked if we keep going down
on the Prednisone until the next visit or do we hold at 20mg. We are to hold at
20 till the next visit
and she will have someone call me to schedule the next appt. (I
tell her NOT at 4 weeks-this will be Ian’s birthday and he refuses to go
to
I had planned on calling the pharmacy to
check if the order for the new med was called in and being processed but they
called me. Yep to schedule the delivery of a temperature
sensitive medication. And THIS time is was NEORAL. The bad news here was they were not scheduling the
delivery until NEXT TUESDAY. Geez this is a real pain. That bottle better last.
I could get it local but man it’s a lot of money and even they have to
have a couple of days to get the stuff in.
I receive a call for the next
visit to rheumatology; it will be Thursday February 26th.
Yahoo we made it !!!
Ian’s bottle of NEORAL lasted till today and there is maybe 3 doses left.
I arrive
home from work and the meds are on the front porch (so much for scheduled
delivery) I am just delighted to see the RIGHT meds in the box. And after all the hullabaloo over the names I did some research into
WHY are these 2 things NOT interchangeable.
It seems that the NEORAL
MODIFIED is modified in its absorption properties. It seems that NEORAL is
absorbed better than Sandimmune and if you use the Sandimmune instead of the
NEORAL WITHOUT
adjusting the dosage, you will not be getting enough cyclosporine. And with the
problems these drugs are used for that is NOT something you need to happen. It
could have serious consequences.
There
have been safety
notices put out by Novartis the company that makes NEORAL and
Sandimmune And a Yale
Health Library has an article on it
Here is
a scan of the 2 boxes – you can see what I mean…
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This
day was good and bad, Mom’s new NASCAR cell phone arrived, however when I
sat down on the waterbed to look all my stuff over, I got a bit WET. Panic set in as I flung
the NEW bedding onto the floor and
searched for the zipper of the pillowtop covering to the waterbed mattress. It
took me 4 trips around the bed to find it. And the inside was SOAKED. I called
Keith in a panic and while I am on the phone he tells me how to drain the bed.
This was NOT an easy feet for me. But after much cursing and hysterics I got it
started and babysat it until the water flow stopped. THEN somehow I managed to drool the mattress out of the side window, with some help
from Ian. And then I was DONE!!! Keith can clean up my mess. Meaning the hose
and the pile of mattress on the ground outside the window.
Keith
called at the usual time and we both agree – NO MORE WATERBEDS! This is
the 2nd mattress to go, but the 1st to LET GO!! It
didn’t do any real damage thankfully, because of the outer liner of the
pillowtop, the rug got a bit damp from seeping water but it wasn’t one
big “POP”.
Now only
1 problem, where do we sleep???? Night
one I sleep on the sofa, Keith sleeps on the pull out couch downstairs. Mom
wasn’t comfortable with being that far away from the kids.
That
changed quickly after a WHOLE night on the couch.
Mom has
today off to get an autostart put in the new car. That is completed early and I
head off to find us a new mattress. I Found an online ad for a great price, and
head to the place we bought the waterbed to see if they can match it. Nope, no
luck there so I head off to
I return
to the store and purchase the new bed. Keith and I agreed on a King Size, since
the kids are still coming in with us on occasion and we want the extra room so
we can sleep too. I ask how soon we can
get it. It seems the sale is so good, they are sold out. The 1st for
sure date he can give me is NEXT FRIDAY.
Oh man how many nights on the pull out couch??? I lament to him my tale
of popped waterbed and sleeping on the couch and he schedules my delivery for
Monday, to see if he can snag one of sets scheduled into the warehouse on
Saturday. I am to call back tomorrow, to see if he was able to get one. Cross
my fingers.
I head
for home and collapse for a nap, til the kids get home.
APPOINTMENT DR ZIMBLER 2ND
OPIONION ON LEFT LEG 0830
I checked us in,
we were the 1st ones to arrive for the day. And we were shown into
an exam room right away. Dr Z appeared not that much later.
Things went really well at this visit; Ian
does have a weak spot in his bone and probably should
not be involved in CONTACT SPORTS, or anything requiring CRASHING into
anything. Makes sense! Dr Z explained absolutely everything to me. It may stay
the size it is now and Ian will grow and in relative size as he grows the
threat of breaking the leg will diminish. If it gets bigger or changes in
anyway it would have to be removed. He also told me that Dr K is one of THEE
best surgeons and if it ended up coming to that he would be the guy to get.
Even tho he does not have the bedside manner thing down.
The whole thing seems so much less ominous
now. I feel a great relief that I understand it all now. Not thrilled that it
may require surgery but feel Ian is in good hands.
Dr Z wrote an order for another MRI and
told me to schedule it sometime in June. I can do it at the local MRI place
that is LOTZ closer to home, and I can also make and appointment to see him at
a local office, sometime after the new MRI is done.
We were done and on our way out by 0830,
man that was record time. so I decide I have enough
time and courage to donate blood today. They take my information and I am taken
in with in a few minutes. I do fine until just AFTER the needle is in. I think
to myself. NOW I am scared, but it subsides and before you know it I am done. This is the very first time in my entire life
that I have done this. I am petrified of needles. (probably
where Ian gets it) I finish and Ian is
proud of me. I tell him if he can do it, so can
It is only 0930 when we are done, I had
planned on going to Dylan’s Dr Appointment on the way home, this
didn’t work out so we skip the candy store ( not
open yet) and head for home.
We also stop at GameStop a video game store
and I hand both the boys $20.00 for Valentine’s Day. I explain that they
have enough stuffed animals and way more than enough candy so I thought they
could pick out what they wanted this way.
We are also here to pick up Ian’s
Birthday gift. A GameBoy Advanced SP. And with the extra $20.00 he gets Kirby a
Nightmare in Dreamland game. Dylan picks out a game for the PS2 called Ratchet
and Clank.
With our new purchases in hand we head for
home to wait til it’s time to head north to the
DYLAN APPOINTMENT DR LAURA
I proceed to empty out the bookcase
headboard and put the stuff in laundry baskets and slide them into the spare
room. Keith will have to dismantle the bed itself and move it tomorrow AM while I am at work.
HAPPY
VALENTINES DAY
Not much of a Valentines Day, but that is
not a problem; we have way too many things to deal with right now.
Ian’s & Dylan’s company
head home around 1100. The bed is scheduled to arrive between 200 and 400.
Keith has the room ready, but the spare room is trashed with all the stuff
shoved in there, with my computer desk. Getting claustrophobic LOL.
The bed arrives around 400 and we get it
made. Now its off to the mall for a Valentines Day
dinner out and to look at Nextel cell phones for Keith. (the
new one mom got is Nextel)
It’s a nice dinner and shopping, and
we head home to bed.
HAPPY DAYTONA 500 DAY
The NASCAR NEXTEL CUP Racing season starts
today. Mom has to work 0400 to 1100. I head home early to help with the errands
since yesterday was spent waiting for the mattress.
I pick up Dylan’s prescription, (been
using Ian’s since I haven’t had time to get to the pharmacy till
now) I meet up with the family at Wal-Mart and we do the grocery thing. Keith
and I then switch vehicles. I take the truck, Dylan and the groceries home. And
Keith takes my car and Ian to pick up his cousin for a sleep over.
The boys spend the afternoon in the family
room playing GameCube and the grown ups watch the race. Ahhhhhh
some quiet time.
PRESIDENTS DAY
Ian asks if Matt (cousin) can spend another
night. No problem with me, but you need to call HIS
mom. And we have a PT appointment tonight at 500 and he’ll have to come
along.
The 4 of us head to PT and I get great
news. The therapist seems to think Ian is all set. He can come next Monday and
that should be it. Yahoo!!!!
Not much today, picked the boys up at
Keith’s school in
Today is Ian’s birthday, tho his
party isn’t until Sunday. It is a lousy weather day. It is snowing and
bleak. Not much hope of going anywhere fun today. Matt finally heads for home
after we have hijacked him from his family for 3 days. Ian is bummed.
Since he realizes how rotten the roads are
he wants to BAKE a cake for his birthday so we don’t have to go out. How
kewl is that??
We pick things out and he gets to work. We
notice that Dylan has made himself very scarce. I find
him on his bed crying. He says his ears hurt. Now not much makes this kid cry.(pain wise that is) so for this to happen it REALLY hurts.
I call
the pediatricians office around
Dylan
sleeps in the car. He sleeps in my lap in the waiting room. He sleeps on the
table while we wait in the exam room. Wakes long enough to head to the bathroom
and back to sleep.
It was about 430 before we actually were
seen. What it looks like is a double ear infection. He must have had the starts
of one last week and the Prednisone shut down his immune system and the thing
had a field day.
We get a
script for antibiotics and Dr Laura gets him some Motrin to help the pain. But
Dylan wants no part of any pills after the gagging episode of last night. She
gets some liquid Motrin, but Dylan is crying now and still will not take it. I
explain that it will make the hurt go away and he will feel better. After some
discussion he takes it and we head for home. We swing into the pharmacy and
wait for the meds. Dylan has again fallen asleep in the car and even in the
chair at the pharmacy.
Ian is
SEVERLY bummed out now. He is crying while we wait for Dylan’s medicine.
He spent his birthday at a Dr’s office anyway. Poor kid, I hope the party
goes well on Sunday.
I purchased new curtains for the bedroom on today
and spent the afternoon putting them up. I also bought one to use as a
headboard so we could cut back on the expenses that are being made with the
purchase of the new mattress.
Mom hits
overload. Too much to do and not enough time to do it. The brain goes off line
and I can’t seem to get ANYTHING at all done. The kids ignore the stress
out (this will make them great husbands someday…LOL) Keith does the same.
He asks what he can do. The things I need to catch up on are not something I
can delegate. Tho a big problem for me is the headboard and other things shoved
into the spare room. We can’t find anyone that wants the old bed and it is
a nice queen bed frame and I would hate to trash it. It would be such a waste.
But we can’t store it indefinitely. I have homework that is DUE in 4 days
and it is not done. A real rarity for me and has me stressing out totally,
since I can’t find the time to get to it, with Ian’s party on
Sunday I have no time. I also have these pages to update. I have been very
lacks on this also. I have sewing repairs to make and I am still learning my
new cell phone. I have to call my old provider to close the account and I need
to make
Keith has
the laundry totally done for me and we move the headboard to the family room
and use it for a bookcase, now we only need to store the drawer base.
That’s at least a bit better. I can find my way to my sewing machine
again. Hooray.
. We head
out to grocery shop and to get the final supplies for Ian’s party it is
430ish. We don’t get home until 730 and it’s
supper and bed for this woman.
Today is
party day and the house is clean, and ready for the guests. Mom is up early and
gets a start on her homework. She makes a good dent in before anyone gets up.
The party
is scheduled for 230. And we have about 7 lil boys and 2 girls come to the
festivities. After I am sure everyone is here, it’s pizza time they all
come barreling upstairs from the family room. Then they are gone again. Mom has
found some party games online and we play those. The kids are having a blast.
Keith comes down to give me a break and I head back upstairs to the grown ups.
Dylan comes up and heads to his room. He is all teary eyed because he
didn’t win a game.
I inform him that this is IAN’S party not his
and that when you do things like this the “guests” should end up
with the prizes. And he will NOT ruin Ian’s party with a tantrum. He can
either dry his eyes and go play, or he can stay in his room. He opts for more
games. Good Choice.
I have the kids’ barrel upstairs for cake and
ice cream, and gifts then send them back to the cellar. They are having fun
playing god knows what. But the house is still standing. J So far.
It’s
back to school for the boys and Mom has taken the day off from work to get
caught up. Dylan is teary eyed getting on the bus, but he goes without much
trouble.
Mom gets
90% of her list caught up and then waits for the boys to get home. We head to
the FINAL PT appointment at 430. Ian goes in and Dylan falls asleep on the
floor in the middle of the waiting room. Boy it must have been a tough day at
school.
I am
noticing that Dylan is really having problems hearing. And try to get a 7 year
old to admit it is tough. I am wondering if he can’t hear me or he just
isn’t paying attention. Will talk to Dr Laura on March 10th
when we go back for the follow up visit.
PT day is Wendy’s for supper day. The kids
are going to miss that part. Mom won’t miss the traffic at that time of
the day.
APPOINTMENT DR S IN RHEUMETOLGY 11:00AM
We head out at 0900 right on time for a
change. The traffic isn’t too bad and we arrive at the parking garage at
Oh my, looks like another LONG wait here
this time too. The place is PACKED. Glad I brought Dylan along so I don’t
have to worry about rushing home.
We go
for the height and weight around 1120 and then instead of going to a room, we
go BACK to the waiting room. There are no empty rooms right now.
We were
seen around 1145 by another Dr. this one is Dr. M and an intern. He looks Ian
over and is impressed with his recovery. He doesn’t know his condition from
when he was 1st diagnosed, but from just the date He thinks it is
amazing.
I ask
about the discoloration of his skin near the hair line. Dr. M feels that this
is a Dermatomyositis Rash, even tho it is not the same as the heliotropic rash he had at the onset of the disease.
I relate the cyclosporine mix up and he
tells me I did great to know the difference and yes there is a difference in
the absorption of the two types.
He tells
me he has additional discoloration on the back of his neck (with a lil boy this
looked like dirt to me J. ) also he has some additional body hair in the
same area. This is a side effect of the NEORAL, and something with his gums.
But I don’t quite remember that.
Also Dr M mentions that Ian should be
wearing sunscreen ALL THE TIME, inside, outside, spring summer, fall and
winter. The sun can cause the Dermatomyositis to become active and that’s
not what we want. (my beach bum isn’t going to
like that)
Dr S
comes in and gives Ian the once over and then he and Dr. M discuss the findings
IN the room. This is kewl. And I actually understand a lot of it. They agree
Ian can continue to decrease the Prednisone. Now it is at the rate of 2.5 mg
every two weeks. And the rest of the stuff will stay the same.
Dr S is
impressed that PT has given Ian the heave ho. He thinks Ian looks better than
Dr M does and Dr S is THEE BOSS. As we joke about the crutches again.
I bring
out the Sandimmune and ask Dr S if SOMEONE can use this. I know this stuff
isn’t cheap and the pharmacy won’t take it back and I can’t
use it. He says he’ll give it to the nurses and he’s sure they can
find a use for it. So it won’t go to waste.
Dr S
also says Ian should be seen by an Ophthalmologist ever 6 months while he is on
the Prednisone. Gee every time I cut OUT a Dr. they get me another one. He is
not to see an optometrist. But a DR. ok, gotta call Dr Laura tomorrow for one
of those.
Another
bit of good news is, we don’t have to come back in 4 weeks, this time it
is 8 weeks WOW
that’s a great sign. Of course I still can’t make that appointment;
it has to be done by HIS secretary. He is SUCH a busy guy.
Now
it’s off to Phlebotomy. We arrive at
Sherma
heads to lunch before anyone notices the thing on the sign in. it will be at
least 30 minutes, Ian REALLY wants to wait, so we head to the Galleria for
McDonalds and since it is lunch hour there are NO tables so we return to the
main lobby waiting area at Children’s.
We find
a spot near the big TV only to notice that the channel is on a soap opera, and
there is a group of hospital employees eating in the same area watching it. I
thought the TV’s were for the kids. And the stuff in this soap was not
something I needed my kids to see. (murder and blodd covered areas) So I went to the front desk and the
security guard came right over and corrected the problem. There are signs non some of the TV’s in various waiting areas that say
NOT to put on anything other than the listed children’s channels. You
would think that the employees would do the same.
We
finish lunch watching Dragon Tales and head back to see if Sherma has returned.
NOPE. It is now
We get
in the room and Ian breaks down, he just cries, no hysterics but he wanted
Sherma and I imagine he is not happy with me for NOT waiting longer. 1,2,3 and we’re done. And sure enough isn’t
Sherma back when we come out. Aaaahhhhhh
NEXT TIME. if we can just get thru
Rheumatology sooner we won’t have these problems. Well it’s time to
head for home now that it is
Dosage
change
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PREDNISONE |
ZANTEC |
FOLIC ACID |
METHOTREXATE |
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20 mg/day/AM |
75 mg/day/AM |
1 mg M-F/AM |
12.5 mg Twice Daily Saturday ONLY |
Twice/daily |
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ADJUSTED |
MEDS |
EFFECTIVE |
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NEORAL |
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17.5 mg/day/AM |
75 mg/day/AM |
1 mg M-F/AM |
12.5 mg Twice Daily Saturday ONLY |
Twice/daily |
Got the
results of the blood work today
Up a bit but still looking good considering
the amount of meds that we have cut back on.
|
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CPK or CK |
Aldolase |
Von Will |
LDH |
AST |
ALT |
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10-15-03/Wed |
516 |
~~ |
~~ |
~~ |
~~ |
~~ |
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10-22-03/Wed |
501 |
15.3 |
- |
527 |
58 |
25 |
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10-25-03/Sat |
130 |
15.3 |
170 |
489 |
37 |
25 |
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11-05-03/Wed |
35 |
8.3 |
261 |
322 |
22 |
19 |
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11-26-03/Wed |
23 |
6.5 |
301 |
319 |
22 |
24 |
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12-24-03/Wed |
36 |
8.1 |
241 |
290 |
19 |
20 |
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01-21-04/Wed |
39 |
9.3 |
205 |
265 |
21 |
16 |
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02-26-04/Th |
56 |
7.8 |
107 |
298 |
23 |
17 |
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NORM |
4-175 |
3.0-12 |
5.0-150 |
110-295 |
2.0-40 |
3.0-30 |
Ian raced home off the bus. Boy is that good to see.
Today we headed for the RV Show in RI. The boys love camping and we had decided to look for a small motorhome. We looked for our 1st RV for 3 years before buying one and figured by the time we really wanted one we would be ready. (Plus we LOVE to look at the things)
We packed a lunch and off we went. Got lotz of great campground info and found a motorhome we really liked, however NOT in the price range just yet, but it was a good value for what you got at $124,000.00. J
The kids found a few trailers they wanted to look in and they had put up with our looking, so we did the same. Only one catch here. We BOUGHT one. The boys dragged us into a fifth wheel a tad bigger than the one we own now and we loved it. It has a “garage” area in the back and a “bedroom” for the boys with 4 bunks and their own TV area. And we got SUCH a deal. They took the old trailer and equipped the new trailer with an awning topper an air vent covers the same as ours has and we will owe the SAME AMOUNT on the new trailer as we owe on the old one, and this one is BRAND NEW and 3 years newer. Seems to be a no brainer to me.
It’s a Cougar 314EFS made by Keystone RV. You can see the layout by going HERE. We have to order it since they don’t have the interior color I want in stock. The family will be at the local shop on Saturday, picking out the color.
Since we spent lotz longer here than we had planned. It was out to Bugaboo Creek for supper and home to bed.
Gee what a busy February.
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JUNE 04 |
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