Re: Becki... and anyone else

[Guest guest]

Hi Helen,

was heavy at the time of being maxed out on the 25mg MTX.The one rheumy didn't want to do it because if it worked and came off steroids and droped below 45lbs he would have to reduce.Head rheumy said we will cross that bridge when we got there. droped to 48 lbs so we got close.

If the rheumy feels that 20mg is the max dose for Nick don't worry.The next step would be to add Enbrel or Remicade,Enbrel is safer but Remicade is a much stronger TNF inhibitor.

Glad to hear Nick is feeling better.This post is comming late so I hope he is still feeling good.Are you going to taper again or wait til next week.

I hate going out of town,I miss so much and can't keep up.

Love and Hugs

Becki and 5 systemic

[Guest guest]

-Thanks Becki...

I thought that was it, I remember you posting about the big weight

gain had on the steriods.

Nick is now upto 43lbs.. or he was at his last rheumy appt, he

finally gained 3lbs.. which i put down to the steriods as he was

eating constantly. Now hes not feeling 100% the eating has slowed

down. Hes such a skinny/small kid, he really needs to gain some more.

When i hug him its like hugging a bag of bones.

We are due to taper again next thursday, a week from today. Not sure

yet if i will. Ill wait and see how the next 7 days play out. hes

doing a little better, his joints are not hurting like they were, but

hes stiff in the AM and i can tell the fatigue is back a little. The

fatigue has alwasy been a big issue for him. His 1st T-ball practice

is tonight. Im so glad my hubby is his coach so he can keep an eye on

him. But i know Nick is going to try and keep up with all the other

kids.

Next friday I will have to go to Nicks school to give his MTX shot.

The doc wants a 24 hour post MTX lab done. I didnt really think about

it till I thought about the time the labs open and friday being a

school day. I just talked to the school nurse to warn her ill be

coming with my syringe loaded ))

hows doing?? sounds like everyone had a fun weekend, I hope all

the excitement didnt show on him.

Hugs Helen and (6,systemic)

-- In , Arthurnator@w... wrote:

> Hi Helen,

> was heavy at the time of being maxed out on the 25mg MTX.The

one rheumy

> didn't want to do it because if it worked and came off

steroids and

> droped below 45lbs he would have to reduce.Head rheumy said we will

cross that

> bridge when we got there. droped to 48 lbs so we got close.

> If the rheumy feels that 20mg is the max dose for Nick don't

worry.The next

> step would be to add Enbrel or Remicade,Enbrel is safer but

Remicade is a much

> stronger TNF inhibitor.

> Glad to hear Nick is feeling better.This post is comming late so I

hope he is

> still feeling good.Are you going to taper again or wait til next

week.

> I hate going out of town,I miss so much and can't keep up.

> Love and Hugs

> Becki and 5 systemic

[Guest guest]

In a message dated 4/22/04 3:16:56 PM Central Daylight Time, hburger64@... writes:

Next friday I will have to go to Nicks school to give his MTX shot. The doc wants a 24 hour post MTX lab done.

Hi Helen,

That should be interesting.Our school will not let the mom do it,it has to be done by the nurse.I bet though,that she will watch Nick do himself.Don't freak over his 24 hour labs after MTX.Normaly thats a big NO NO.They normaly come back elevated.If a mom accidently gets labs within 24 hours of MTX,rheumies usualy make you repeat them.Your rheumy has his reasons, not being a doctor I don't know what it is though.

just got back from the doctor.The opinion on his stomache now is all the Pred and massive doses of Ibuprofin from way back started the tummy trouble but he didn't have pain.The 3 weeks of MTX pills realy brought it out,so now 2 more months of Zantac.The spot on his back has healed enough to determine that it is indeed Exzema(I knew that)but to severe for Elidel(non steroid)so we are to continue with the medium strenghth steroid cream pretty much indefinately for now.He also has a nasty cough so back on Loratadine,he has such nasty allergies.Other then that he's great,lol.He got his first new dosing of Enbrel Wed.It was kind of scarey giving him a whole vial of Enbrel all at once. didn't think I would ever get it all in,he's happy it's just once a week though.

Glad Nick still feels good and I know all about the fatigue,ugh.Hope baseball goes ok,when Nick isn't doing so great mayby he can be batboy.

Love and Hugs

Becki and 5 systemic

[Guest guest]

My old high school was the same way. One day I had gotten to school and realized I hadn't taken any of my meds... I was on pred during that time so I called my mom and asked her to drop it off. The school administration knew about my medical conditions.. So I go up to the office to pick it up and they tell me that they can't administer it. My mom has to be here to ok it.. Um ok she was the one who dropped it off obviously she ok'd it. The vice principal actually took me to his office and made me tell him what it was I was taking and made me take them one by one. And told me that I was never allowed to take my medicine at school again. He acted like I was trying to take some illegal substance at school.. yes because parents typically drop those things off..

[Guest guest]

-Becki.

Here the school nurse cannot administer ANYTHING unless she has

written orders from the doctor. She cant even give them tylenol.

Parents can go into the school and given them anything they want. I

doubt she will even watch Nick take his shot, shes already said we

can go in to the bathroom if Nick needs privacy.

Nicks rheumy likes to go a 24hr post MTX level anytime they start on

MTX or the dose increases. Apprently after 24 hours there should be

no trace of the MTX left in the body. But it must be done at the 24

hr mark or as close as possible. Nicks 24 hr post mTX when he started

was fine. Im not excpeting anything different this time and the

rheumy doesnt seem too concerned. We will do ALL his labs at the same

time and for the 1st time she will have his numbers in front of her

at the appt. Nicks labs have always looked good, except when he was

flaring in Jan. All these little aches and pains he has dont seem to

affect his numbers.

Glad to hear all is well with Mr ...I bet hes really excited to

be down to just one enbrel shot a week. Sounds like its a lot

though.. Nicks 15mg of MTX seems like a TON to me...I cant imagine a

full syringe!!!

have a great weekend..

hugs Helen and (6,systemic)

-- In , Arthurnator@w... wrote:

> In a message dated 4/22/04 3:16:56 PM Central Daylight Time,

> hburger64@h... writes:

>

>

> > Next friday I will have to go to Nicks school to give his MTX

shot.

> > The doc wants a 24 hour post MTX lab done.

>

> Hi Helen,

> That should be interesting.Our school will not let the mom do it,it

has to be

> done by the nurse.I bet though,that she will watch Nick do

himself.Don't

> freak over his 24 hour labs after MTX.Normaly thats a big NO

NO.They normaly come

> back elevated.If a mom accidently gets labs within 24 hours of

MTX,rheumies

> usualy make you repeat them.Your rheumy has his reasons, not being

a doctor I

> don't know what it is though.

> just got back from the doctor.The opinion on his stomache now

is all

> the Pred and massive doses of Ibuprofin from way back started the

tummy trouble

> but he didn't have pain.The 3 weeks of MTX pills realy brought it

out,so now 2

> more months of Zantac.The spot on his back has healed enough to

determine

> that it is indeed Exzema(I knew that)but to severe for Elidel(non

steroid)so we

> are to continue with the medium strenghth steroid cream pretty much

> indefinately for now.He also has a nasty cough so back on

Loratadine,he has such nasty

> allergies.Other then that he's great,lol.He got his first new

dosing of Enbrel

> Wed.It was kind of scarey giving him a whole vial of Enbrel all at

once.

> didn't think I would ever get it all in,he's happy it's just once a

week though.

> Glad Nick still feels good and I know all about the

fatigue,ugh.Hope baseball

> goes ok,when Nick isn't doing so great mayby he can be batboy.

> Love and Hugs

> Becki and 5 systemic

[Guest guest]

In a message dated 4/23/04 4:59:48 PM Central Daylight Time, hburger64@... writes:

Nicks rheumy likes to go a 24hr post MTX level anytime they start on MTX or the dose increases. Apprently after 24 hours there should be no trace of the MTX left in the body. But it must be done at the 24 hr mark or as close as possible. Nicks 24 hr post mTX when he started was fine. Im not excpeting anything different this time and the rheumy doesnt seem too concerned. We will do ALL his labs at the same time and for the 1st time she will have his numbers in front of her at the appt.

Helen,

I will not argue with what your rheumies beliefs are.24 hours later the MTX has not left the system and I have been on this list long enough and experianced it first hand that regular labs are not to be done within 24 hours.Methotrexate dose have a short half life but regular labs done 24 hours later are going to come back high,mayby not every time,but regular enough.You have a very cautious reumy because I can tell you this.They are concerned about continuous elevated liver enzymes and tests that come back 2 or 3 times higher then normal.They are making sure Nick can tolerate his currant dose before upping.Been there duiring our upper.Once the MTX is stabalized you are looking at every 6-8 weeks.

We were getting s labs done after our rheumy visit,I always thought was dumb,we have for the longest time gotten labs at our local hospital the day or two before hand.

Going back to the liver tests,I didn't mean to scare you,just if they come a few points high do not get scared.Even alot high don't get scared,tough guy Nick will just have to repeat labs in a day or so.

Hugs

Becki and 5 systemic