Re: Nicks rhuemy appt.

[Guest guest]

Hi Helen:

I am thrilled to hear Nick's joints are looking better YIPPIEEEEEEE!!!!! Why

the switch from oral to injections? The reaction? How does he feel about

getting injections?

<<She has added iron pills to the list of drugs, Nicks iron is pretty low.

Anyone else dealt with this>>

Caitlin was anemic to the point that they would transfuse soon. This is why

and when they upped her steroid dose to 9mg am and 9mg pm. Thank God her

hemoglobin and hematicrit went up and have stayed up:) I know there is a

difference between low iron and anemia, but I can't remember how. Someone else

will

know, I am sure. Caitlin became anemic due to chronic illness, not from lack

of iron rich foods, etc. I hope the iron pills kick in quickly:)

<<

cream but needed to order the clear cover thingies ( cant remember the name)

anyhows they said the cream was $10 but the covers were $27!! I told them i

would take the cream and forget the patches. Im spending enough on RX's as it

is, and to be honest it looks like those things hurt to take off, kinda beat

the object of it all. So we will be using saran wrap )))>>

I remember those clear covers for the EMLA cream. $27 for them, please,

that's crazy. I had to use a lot of EMLA for some skin growths from my neck

(yucky) and I was told by my dermatologist to wrap my neck in Saran Wrap. I

hoped

I wouldn't get pulled over on my way to her office LOL, but it worked like a

charm:) We use EMLA on Caitlin now with any blood draw (lessens her anxiety

and I am all for that) and we plop on the EMLA and pull on the good ole Saran

Wrap, works like a charm for her too:)

Take care.

Patty

[Guest guest]

In a message dated 2/26/04 9:23:46 AM Central Standard Time, hburger64@... writes:

rx for the ema cream and asked for the largest tube available. When i tried to fill the rx they told me they had the cream but needed to order the clear cover thingies ( cant remember the name) anyhows they said the cream was $10 but the covers were $27!! I told them i would take the cream and forget the patches. Im spending enough on RX's as it is, and to be honest it looks like those things hurt to take off, kinda beat the object of it all. So we will be using saran wrap )))

Hi Helen,

First let me say congradulations on the good rheumy appointment.

On to Emla,we get it in 30 gram tubes and DO NOT use the occlusive dressings. screamed his head off getting that sticky stuff off.Saran wrap works great on arms but slides right off a thigh.We just buy medium sized gauze bandages and buy this wide cloth tape that sticks to itself, not skin,then use regular tape to be sure the cloth tape stays put.It works great for us.Another thing we have learned is Emla on for 1 hr takes the edge off.Emla for 2 hours makes you NUMB. can't even feel the alcahol wipe,something he used to hate.Just our experiance.

Hugs

Becki and 5 systemic

[Guest guest]

HI Helen:

I hope Nick's first injection goes well. Sounds like you have it all worked

out in your mind, that's great. Getting him involved as much as possible will

make him feel a little more in control. isn't ready to inject

herself yet, but I do let her do as much as possible to feel for in charge.

Someday she'll do it on her own.

I am beginning to feel like a nurse dispensing meds to everyone in my

household, even one of my cats is currently on an antibiotic for a urinary

infection

HONESTLY. Only person not taking anything is my husband.

Blue sounds like a great color choice LOL and yes, I did look a sight with

Wrap around my neck LOL.

Take care.

Patty

[Guest guest]

Hi Helen,

It sounds like the rheumy visit went well - I like that she is working with you

on the taper. Good luck with the pred - hopefully the mtx will help alot in

allowing the taper to go smoothly.

You were right to not buy the patches for the EMLA, Robbie hates them - his skin

is a little sensitive to adhesive anyway, and they do hurt coming off, we have

always used Saran Wrap - in fact I keep a little in my purse with tape for

unplanned blood draws. After I wrap the saran wrap around his arm, I tape it to

itself (not getting any tape on his skin - the saran wrap would hold pretty good

by itself, but this allows me to get shirt sleeves & coats off and on without

worry.) - I always put the EMLA on both arms - just in case. Last spring, the

only saran wrap I had was purple for Easter, and we sure got some funny looks

walking into the hospital for his blood draw - with purple saran wrap on both

arms!

Rob has never had to be put on Iron - but his blood counts would fluctuate a lot

with flares and with the meds, I suppose. Iron can be constipating - so Nick

may need some help with that. It should be taken with food - one article I read

said that it absorbs easier if taken on an empty stomach - but that most

people's tummies can't handle it and in most cases it should be taken with food.

With our kids and all the meds they have to take already, I would give it with

food. Also, Vitamin C helps the absorption of Iron - My Doc has me taking a lot

of Vitamin C with my Iron supplement.

I am praying for a swift, effortless taper of Nicks pred!

Val

Rob's Mom (6,systemic)

[Guest guest]

patty,

We switched to the injections for a few different reasons. Nick has a very sensitive tummy and the 1st 2 doses bothered it, the 2nd two were better but no gaurentee that the tummy upsets would not return. We were also told that the potential for liver problems is less in the injections than with the pills. Another biggie is that the medication itself if more effective as a SQ injection. We felt that if we are giving him this medication in the 1st place we should give it in the most benefical way. Not a lot of point of taking pills if you are not sure if they are really getting the benefit of the full dose. I guess its a personal choice. Our rhuemy seems to be a big advocate for the injections and i trust her judgement. Nick is ok with getting shots, but then again hes not had one yet )) the needles are TINY, and they dont go in very deep. We practiced on a pillow last night, just so he got to see and hold a needle. he wants to "push the plunger" so i think if hes more involved he will feel more in control and not as freaked. ill let him help draw the MTX and ill put the needle in but let him do the rest, with my help. We will see how it goes.

Nick low iron is a direct result of all the inflammation he is/was having not by the foods he ate. The iron really bothered his tummy this morning. Going to move it to a PM dosing, i thought he was going to throw up right before the bus came!!!

IM with you, the price of those patches were a rip off... perhaps ill go and get some pretty colored saran wrap, perhaps blue!!!! LOL I bet you looked a picture with that around your neck!!

Hugs Helen, mom to (6,systemic)

Hugs..Helen DH Dan DS's (20)(14)(12)Zachary(9)(6)

DD (4)>From: Emeraldsx3@... >Reply- > >Subject: Re: Nicks rhuemy appt. >Date: Thu, 26 Feb 2004 10:27:06 EST > >Hi Helen: > >I am thrilled to hear Nick's joints are looking better YIPPIEEEEEEE!!!!! Why >the switch from oral to injections? The reaction? How does he feel about >getting injections? > ><Anyone else dealt with this>> > >Caitlin was anemic to the point that they would transfuse soon. This is why >and when they upped her steroid dose to 9mg am and 9mg pm. Thank God her >hemoglobin and hematicrit went up and have stayed up:) I know there is a >difference between low iron and anemia, but I can't remember how. Someone else will >know, I am sure. Caitlin became anemic due to chronic illness, not from lack >of iron rich foods, etc. I hope the iron pills kick in quickly:) > ><< >cream but needed to order the clear cover thingies ( cant remember the name) >anyhows they said the cream was $10 but the covers were $27!! I told them i >would take the cream and forget the patches. Im spending enough on RX's as it >is, and to be honest it looks like those things hurt to take off, kinda beat >the object of it all. So we will be using saran wrap )))>> > >I remember those clear covers for the EMLA cream. $27 for them, please, >that's crazy. I had to use a lot of EMLA for some skin growths from my neck >(yucky) and I was told by my dermatologist to wrap my neck in Saran Wrap. I hoped >I wouldn't get pulled over on my way to her office LOL, but it worked like a >charm:) We use EMLA on Caitlin now with any blood draw (lessens her anxiety >and I am all for that) and we plop on the EMLA and pull on the good ole Saran >Wrap, works like a charm for her too:) > >Take care. >Patty Stay informed on Election 2004 and the race to Super Tuesday.

[Guest guest]

Hi ,

I was rereading my post - and I don't think I picked the best word when I said

the Iron absorbs easier on an empty stomach - it absorbs better (more iron

getting into the system) on an empty stomach if the patient can tolerate it -

not easier - it certainly isn't easy on the stomach, which is why most need to

take it with food. I find all vitamins very hard on an empty stomach.

Val

Rob's Mom (6,systemic)

[Guest guest]

In a message dated 2/26/04 4:16:27 PM Eastern Standard Time,

ajpranke@... writes:

<<

LOL - I feel like I am running a drug store out of my house! I just found

out I have a sinus infection and started Amoxicllian! Ugh! >>

That's exactly what I am on Ceftin for a darn sinus infection. That's okay

though, I panicked and thought I might have had strep. I'll take the sinus

infection.

[Guest guest]

That's odd that you have to pay for syringes. My doctor wrote a prescription for it but the pharmacist gave it to us for free. He's a really nice guy. He writes down when my Enbrel needs to be ordered so its always there when I need it. He's an awesome guy.

(poly JRA and Spondy, 19)

[Guest guest]

Helen -

I am glad Nick's joints looked better today. Why are you switching

days? Did your Rheumy suggest that?

I hope the injectable MTX works for you. I had to go to three

different pharmacies to get Caroline's med's. Finally, the last one

ordered it for me. They told me it would be best to fill it at the

hospital. Who knows. We get off lucky. Alan has teacher's health

coverage so we only pay $5, $15, or $20. We did have to pay $.40 for

the syringes for Caroline's mtx. Kind of weird.

Anyways. Hope these meds help Nick.

Alia and Caroline, age 2, pauci

>

[Guest guest]

Helen,

We’re currently dealing with anemia.

We first became aware of it in December. ’s docs have her on iron

and folic acid to fight the anemia. She also takes fiber supplements to help

fight the side effects of the iron pills. saw a hematologist last week at

her pediatrician’s request and we go back next week for a follow up. I

got the bill today for the blood drawn at the hematologist’s office and

all I can say is thank goodness for insurance! Anyway, we’re hoping to

get some answers at the follow-up about the cause of the anemia.

Liz (, 12, poly)

Nicks rhuemy appt.

Nick saw his rhuemy yesterday, his joints are all

looking good at this time, the swelling has gone down in his fingers. We are

switching him from oral to MTX injections starting this week and also moving

from sunday administering to friday nights. We are keeping the dose the same

for now.

We are continuing with the pred taper, she wrote down

a schdeule, but is kinda leaving it up to me to decide to move down or remain

longer at a particular dose if i feel its wise. She said it sounded like ive

done a lot of reading on pred tapers and seem to understand the ins and outs of

it ( thanks to you guys!!) The goal is to be down to just 5mg in the am by the

time we see her again at the end of march.

She has added iron pills to the list of drugs, Nicks

iron is pretty low. Anyone else dealt with this??

thats about it... we were given a quick lesson on how

to give the shot, i now have to wait for our pharmacy to get the MTX in..

hopefully it will be here by tomorrow.I did ask for a rx for the ema cream and

asked for the largest tube available. When i tried to fill the rx they

told me they had the cream but needed to order the clear cover thingies ( cant

remember the name) anyhows they said the cream was $10 but the covers

were $27!! I told them i would take the cream and forget the patches. Im spending

enough on RX's as it is, and to be honest it looks like those things hurt

to take off, kinda beat the object of it all. So we will be using saran wrap

)))

Hugs helen, mom to (6,systemic)

Hugs..Helen

DH Dan

DS's (20)(14)(12)Zachary(9)(6)

DD (4)

Take off

on a romantic weekend or a family adventure to these great U.S. locations.

[Guest guest]

Well I take enbrel and they provide a free sharpes container.. I dunno though otherwise.. shoe box maybe? Find out how your county disposes of biohazard so you can do it the right way.

(poly JRA and Spondy, 19)

[Guest guest]

I do have an extra sharpes container its a travel sized one.. somehow I ended up with three containers two travel sizes one normal size all from Enbrel. If you can't find out I'll send you my extra. Glad to hear nick is doing well.

(poly JRA and Spondy, 19)

[Guest guest]

Alia,

We are switching days because the day after taking MTX, Nick would be dragging big time... even with 13-14 hours of sleep it is hard to wake him up for school and even then he just cant seem to "get going" we have been lucky that one of the mondays was a holiday. But hes missed enough school and i would rather just do it friday night so hes got the weekend to get over it. I wanted fridays to begin with, but because of the 24 hr post MTX blood draw, i thought it would be easier getting to the lab on a monday. I have since found out that we can get blood drawn on a saturday. Any time his MTX is increased we will need to the 24 hr post MTX labs.

I didnt realize that Caroline was on the injectable too, have you given her a shot yet... my stomachs churning at the thought of it tomorrow. Im sure the 1st few will be scary, but will get better over time.

Im not understanding walgreens yesterday when they said my insurance wouldnt cover the MTX, but then its only $11 to buy outright, so I was not going to argue. By that time I think we had had a question on every RX i handed in... Thankfully they said they would be able to have the MTX there by today... im going to call in a bit just to make sure before my hubby stops on the way home.

I found out yesterday that Nicks rhuemy will NOT be at the walk (( shes heading to Israel today for 2 weeks to do some hospital work over there. Guess i wont find out about Nicks labs for a few weeks.. o well, its not like they change anything. But she is having a morphology done... this is where a pathologist looks under the scope at the blood cells to make sure theres no abnormalities. it would have been nice to find out thats all ok as soon as I could.

Hugs Helen, mom to (6,systemic)

Hugs..Helen DH Dan DS's (20)(14)(12)Zachary(9)(6)

DD (4)>From: "Alia Wegener-Pranke" >Reply- > >Subject: Re: Nicks rhuemy appt. >Date: Thu, 26 Feb 2004 18:32:19 -0000 > >Helen - > >I am glad Nick's joints looked better today. Why are you switching >days? Did your Rheumy suggest that? > >I hope the injectable MTX works for you. I had to go to three >different pharmacies to get Caroline's med's. Finally, the last one >ordered it for me. They told me it would be best to fill it at the >hospital. Who knows. We get off lucky. Alan has teacher's health >coverage so we only pay $5, $15, or $20. We did have to pay $.40 for >the syringes for Caroline's mtx. Kind of weird. > >Anyways. Hope these meds help Nick. > >Alia and Caroline, age 2, pauci > > > > Watch high-quality video with fast playback at MSN Video. Free!

[Guest guest]

Helen -

That is probably a better plan. I suspected that was what was up. Caroline is

not on the shot MTX, just the oral injectable MTX. Our Rhuemy wanted to start

with this before going to the shot. Ouch. I am not sure what we will do if we

ever have to go that route. I don't envy you or Nick.

That's too bad your Rheumy won't be there. Bummer! I didn't even ask if mine

was, but she's not the warm and fuzzy type so I wouldn't expect her...

That is so weird about the MTX and Walgreen's. I finally found it at Target, but

my co-pay was only $5. So, it must be fairly inexpensive. Odd. They had to order

it too. We had to buy syringes because I guess that is the only way to dispense

it.

Let us know how Friday's shot goes!

Alia and Caroline, age 2, pauci and uveitis

[Guest guest]

" I am beginning to feel like a nurse dispensing meds to everyone in my

household, even one of my cats is currently on an antibiotic for a urinary

infection HONESTLY. Only person not taking anything is my husband. "

LOL - I feel like I am running a drug store out of my house! I just found out I

have a sinus infection and started Amoxicllian! Ugh!

Alia and Caroline, age 2, pauci and uveitis

[Guest guest]

In a message dated 2/26/04 2:42:46 PM Central Standard Time, hburger64@... writes:

Im not understanding walgreens yesterday when they said my insurance wouldnt cover the MTX, but then its only $11 to buy outright

Hi Helen,

MTX is cheap but some insurance companies go by the fact that by medical literature it is not a self injectable drug but something that is given at a doctors office.We used to have drug coverage through Paid Prescriptions and Inj MTX and Folic acid was covered.Now we have express scripts and we had to pay for the MTX$15.09(oh my a whole 9 cents more)then pills.Folic acid was in the $4 range but now $7 something.Just an FYI.April 02 we had to lose some benefits but the agent forgot to add the drug plan.I went to get s MTX and it came back over $100 for 4 vials and we were supposed to get a big discount if that was the plan we chose.NOT!I asked the pharmacy what the actual cost was without insurance.Just under $40.I called the insurance company and they played total dumb.Well wasn't our insurance company but Express Scripts.Something allegal going on.

Hugs

Becki and 5 systemic

[Guest guest]

Free??? how nice, I had to pay $10 for a box of 100 yesterday. Which leads me to another question.. what does everyone do with the used syringes???

Hugs Helen, mom to (6,systemic)

Hugs..Helen DH Dan DS's (20)(14)(12)Zachary(9)(6)

DD (4)>From: bncknwurnumber@... >Reply- > >Subject: Re: Nicks rhuemy appt. >Date: Thu, 26 Feb 2004 17:10:33 EST > >That's odd that you have to pay for syringes. My doctor wrote a prescription >for it but the pharmacist gave it to us for free. He's a really nice guy. He >writes down when my Enbrel needs to be ordered so its always there when I >need it. He's an awesome guy. > > (poly JRA and Spondy, 19) Click, drag and drop. My MSN is the simple way to design your homepage.

[Guest guest]

Liz,

I would be very interested in what you find out. Please let me know...

thanks

Hugs Helen, mom to (6,systemic)

Hugs..Helen DH Dan DS's (20)(14)(12)Zachary(9)(6)

DD (4)>From: "Liz " >Reply- >>Subject: RE: Nicks rhuemy appt. >Date: Thu, 26 Feb 2004 14:26:50 -0500 > >Helen, >We're currently dealing with anemia. We first became aware of it in >December. 's docs have her on iron and folic acid to fight the >anemia. She also takes fiber supplements to help fight the side effects >of the iron pills. saw a hematologist last week at her >pediatrician's request and we go back next week for a follow up. I got >the bill today for the blood drawn at the hematologist's office and all >I can say is thank goodness for insurance! Anyway, we're hoping to get >some answers at the follow-up about the cause of the anemia. >Liz (, 12, poly) > > Nicks rhuemy appt. > >Nick saw his rhuemy yesterday, his joints are all looking good at this >time, the swelling has gone down in his fingers. We are switching him >from oral to MTX injections starting this week and also moving from >sunday administering to friday nights. We are keeping the dose the same >for now. >We are continuing with the pred taper, she wrote down a schdeule, but is >kinda leaving it up to me to decide to move down or remain longer at a >particular dose if i feel its wise. She said it sounded like ive done a >lot of reading on pred tapers and seem to understand the ins and outs of >it ( thanks to you guys!!) The goal is to be down to just 5mg in the am >by the time we see her again at the end of march. >She has added iron pills to the list of drugs, Nicks iron is pretty low. >Anyone else dealt with this?? >thats about it... we were given a quick lesson on how to give the shot, >i now have to wait for our pharmacy to get the MTX in.. hopefully it >will be here by tomorrow.I did ask for a rx for the ema cream and asked >for the largest tube available. When i tried to fill the rx they told >me they had the cream but needed to order the clear cover thingies ( >cant remember the name) anyhows they said the cream was $10 but the >covers were $27!! I told them i would take the cream and forget the >patches. Im spending enough on RX's as it is, and to be honest it looks >like those things hurt to take off, kinda beat the object of it all. So >we will be using saran wrap ))) >Hugs helen, mom to (6,systemic) > > > _____ > >Hugs..Helen >DH Dan >DS's >(20)(14)(12)Zachary(9)(6) >DD (4) > > > _____ > >Take off on a romantic weekend or >a family adventure to these great U.S. locations. > > > >

[Guest guest]

,

That would be great, thank you soo much. I did call my clinic yesterday and all they said was use a old milk jug. But ive read online not to do this. I just worry because i have a house full of kids!!

Let me know and send you some cash to ship it ))) are us able to empty these out once they get full, or what do you do??

Hugs Helen, mom to (6,systemic)

p.s how are YOU feeling, is the kidney infection clearing up yet. are you feeling any better?? I should go read your site shouldnt I )))

Hugs..Helen DH Dan DS's (20)(14)(12)Zachary(9)(6)

DD (4)>From: bncknwurnumber@... >Reply- > >Subject: Re: Nicks rhuemy appt. >Date: Thu, 26 Feb 2004 19:50:15 EST > >I do have an extra sharpes container its a travel sized one.. somehow I ended >up with three containers two travel sizes one normal size all from Enbrel. >If you can't find out I'll send you my extra. Glad to hear nick is doing well. > > (poly JRA and Spondy, 19) Say “good-bye” to spam, viruses and pop-ups with MSN Premium -- free trial offer!

[Guest guest]

Im feeling a lot better thank you for asking. I'll be happy to send it free of charge. Nick is such a brave little guy.. I'm terrified of the shots.. but I do it. At 6 I dont think i could do it. You can just send me your email address privately and I'll get it sent over to ya.

(poly JRA and Spondy, 19)

[Guest guest]

Hi Helen,

Just curious.Did Nicks rheumy write the script for a 4ml or 100mg vial?We only get 2ml vials and at a dose of 7.5mg we could get 5 doses.Also make sure the pharmacy gave you MTX with preservative.I am sure the rheumy gave you instructions but it has to be kept in the fridge and if you ever get MTX preservative free you can only use it twice.

When started back in July 01 multiple use was unheard of.One mom,no longer on this list realy came down hard on me.Patty has nothing on her when it comes to germ phobia.She had me thinking Vanderbilt were quacks and I was real upset about the whole thing.Everyone else was supportive and said if the rheumy said it was ok then it probably was. also took the shot kind in juice,another thing that was unheard of at the time.Now both are common practice.

Hugs

Becki and 5 systemic

[Guest guest]

,

You are such a sweetheart, thank you so much...

4410 162nd Ave NE

Ham Lake. MN. 55304

and thanks everyone for your exeriences, seems like theres different regulations for different states. Ill have to ask the health dept. I did ask walgreens about sharp containers and they didnt have any.

Hugs Helen, mom to (6,systemic)

Hugs..Helen DH Dan DS's (20)(14)(12)Zachary(9)(6)

DD (4)>From: bncknwurnumber@... >Reply- > >Subject: Re: Nicks rhuemy appt. >Date: Fri, 27 Feb 2004 04:24:17 EST > >Im feeling a lot better thank you for asking. I'll be happy to send it free >of charge. Nick is such a brave little guy.. I'm terrified of the shots.. but >I do it. At 6 I dont think i could do it. You can just send me your email >address privately and I'll get it sent over to ya. > > > (poly JRA and Spondy, 19) Find and compare great deals on Broadband access at the MSN High-Speed Marketplace.

[Guest guest]

Becki...

The MTX was not covered by our insurance. you can bet ill be calling to find out why, not that it makes much difference, but i want to know the answer.

We paid $12.59 for a vial that will last 2 1/2 months.. although there looks to be soo little actual liquid in there.

Time will tell..

Hugs Helen, mom to (6,systemic)

Hugs..Helen DH Dan DS's (20)(14)(12)Zachary(9)(6)

DD (4)>From: Arthurnator@... >Reply- > >Subject: Re: Re: Nicks rhuemy appt. >Date: Thu, 26 Feb 2004 23:31:09 EST > >In a message dated 2/26/04 2:42:46 PM Central Standard Time, >hburger64@... writes: > > > > Im not understanding walgreens yesterday when they said my insurance > > wouldnt cover the MTX, but then its only $11 to buy outright > >Hi Helen, >MTX is cheap but some insurance companies go by the fact that by medical >literature it is not a self injectable drug but something that is given at a >doctors office.We used to have drug coverage through Paid Prescriptions and Inj MTX >and Folic acid was covered.Now we have express scripts and we had to pay for >the MTX$15.09(oh my a whole 9 cents more)then pills.Folic acid was in the $4 >range but now $7 something.Just an FYI.April 02 we had to lose some benefits >but the agent forgot to add the drug plan.I went to get s MTX and it came >back over $100 for 4 vials and we were supposed to get a big discount if that >was the plan we chose.NOT!I asked the pharmacy what the actual cost was without >insurance.Just under $40.I called the insurance company and they played total >dumb.Well wasn't our insurance company but Express Scripts.Something allegal >going on. >Hugs >Becki and 5 systemic Get a FREE online computer virus scan from McAfee when you click here.

[Guest guest]

True! I would take a sinus infection over strep any day!

Alia

[Guest guest]

- yeah I am not sure why we had to either. Our Rhuemy wrote that they

wanted the syringes pre filled, but they told us they don't do that, but they

could give us some. Turns out that by giving us some they meant us buying some.

Oh well. Add it to Caroline's list of medical costs!

Alia and Caroline, age 2, pauci and uveitis