DMARDS

[Guest guest]

Hi Patty,

Even though was treated for RF in the beginning by his ped his was such a rapid deteriation that his diagnoses was very cut and dry.We seen the rheumy 3 weeks from the very 1st symptom and was immediately put on high doses of pred.Because it takes 6 weeks of chronic symptoms to officialy diagnose he didn't start Methotrexate until 3 weeks later at his second appointment.

Hugs

Becki and 5 systemic

[Guest guest]

Hi Patty,

My son started taking Methotrexate while he was still in the hospital

during his first flare. So it was within the first month of his being

sick. The doctor explained that it takes some time to begin working, so

we started real quickly. He started at a typical beginning dose, 7.5mgs,

and we worked our way up to 15mgs in gradual increases.

They added a second DMARD after about a year, Hydroxychloroquine

(Plaquinel), because he still wasn't having a very good response. His

symptoms were still not controlled, despite taking NSAIDs

(Indomethacin) and daily Prednisone, too.

My son's arthritis was more persistent than a lot of others, though.

Atypical, I think, in that respect. He had some good days, with little

or no pain and stiffness, but mostly it was like one really long flare

that lasted for a few years. Frightening, really, because it seemed like

it would be that way forever. I am so grateful that, eventually, things

balanced out better. I think it was switching to injectable

Methotrexate, versus taking it by pill form, that made the biggest

difference for him. We eventually figured out that he hadn't been

absorbing enough of a therapeutic dose orally. Some kids don't. Once he

started taking it by injection we saw improvement.

Take Care,

Georgina

Emeraldsx3@... wrote:

> Hi All:

>

> I am reading/responding to emails and have a question. If your child was

> placed/is currently on DMARDs, how much time evolved before they started them?

> What did they use for meds beforehand?

>

> Thank you all.

> Patty

[Guest guest]

Hi Patty:

After a bit over three months that my daughter , then 7, was diagnosed, she went on MTX (I guess that this is the time to wait to rule out any allergic triggered arthritis that could go away by itself before this period). She's now 9 and totally controlled, taking no NSAID (Naprosyn) for long time now, just her weekly 12,5 mg shot of MTX and folic acid and been symptom free for long time now. She started on Naprosyn, though, even before confirming her diagnosis (had the "luck" that her ped had a JRA daughter so she knew right away with what she might be dealing). So for me, the early treatment is crucial. When she was first diagnosed, she had crooked stiff fingers, wrist, ankles and knee involvement, but after a few months of MTX everything went away, and luckily hasn't come back, except for a small flare this past summer triggered by a twist in her ankle. She doesn't even have morning stiffness anymore, so we are one of the blessed ones with a fast recuperation, but monitoring closely so we can keep it away. I am very much aware that the disease is asleep, not gone.

Best of lucks,

(9) poly

DMARDs

Hi All:I am reading/responding to emails and have a question. If your child was placed/is currently on DMARDs, how much time evolved before they started them? What did they use for meds beforehand?Thank you all.Patty

[Guest guest]

Hi, Patty. My son was diagnosed in Oct,2000. He was started on Celebrex

(NSAID) and rapidly maxed out to 800 mgs a day. By March,2001

sulfasalazine (DMARD)was added. It never worked quite the way it should

- was still having pain and stiffness and he was maxed on that at

3000 mgs a day - so that by Dec.,2001 MTX was put in place of the

sulfasalazine. Within a month, he was able to begin reducing the

Celebrex and is now at a point where he needs it only when flaring. He

takes 10 mgs MTX pills once a week, along with his folic acid. It has

been great for him. Right now, there is some concern with his back (that

is from the spondyloarthropy) but otherwise, his feet and ankles are

doing well. Michele (16,pauci & spondy)

DMARDs

Hi All:

I am reading/responding to emails and have a question. If your child

was

placed/is currently on DMARDs, how much time evolved before they started

them?

What did they use for meds beforehand?

Thank you all.

Patty

[Guest guest]

In a message dated 1/8/04 4:13:14 AM Eastern Standard Time, gmckin@...

writes:

<<

My son started taking Methotrexate while he was still in the hospital

during his first flare. So it was within the first month of his being

sick. The doctor explained that it takes some time to begin working, so

we started real quickly. He started at a typical beginning dose, 7.5mgs,

and we worked our way up to 15mgs in gradual increases.

>>

Hi Georgina:

This email is perfect timing. Caitlin had a fever today and a swollen thumb

and some spots (red spots). The rheumy has decided to start her on the two

exact meds you listed: Methotrexate and Plaquinel. I was going to send an

email out to the list as to what these two specific drugs do, etc. Are these

both

maintenance arthritic medications? Caitlin will now be on: Cefzil,

Prednisone, Methotrexate and Plaquinel. Doesn't that seem over the top? The

rheumy

was going to wait a few weeks to see how Caitlin did on the steroid taper, but

with todays symptoms, he has decided to start. Has anyone been on both at the

same time here?

<<They added a second DMARD after about a year, Hydroxychloroquine

(Plaquinel), because he still wasn't having a very good response. His

symptoms were still not controlled, despite taking NSAIDs

(Indomethacin) and daily Prednisone, too.

>>

Sounds like Caitlin minus the antibiotic.

<<My son's arthritis was more persistent than a lot of others, though.

Atypical, I think, in that respect. He had some good days, with little

or no pain and stiffness, but mostly it was like one really long flare

that lasted for a few years. Frightening, really, because it seemed like

it would be that way forever. I am so grateful that, eventually, things

balanced out better. I think it was switching to injectable

Methotrexate, versus taking it by pill form, that made the biggest

difference for him. We eventually figured out that he hadn't been

absorbing enough of a therapeutic dose orally. Some kids don't. Once he

started taking it by injection we saw improvement.

>>

Caitlin's presentation has been atypical also. I hope and pray she doesn't

take as long as your son did to get this under control, though we have seen

improvement already, so they sound different in that respect. How long was he

on

the Methotrexate oral before going the injectable route. Caitlin is

extremely needle phobic, so I am worried about that aspect.

Thanks so much.

Patty

[Guest guest]

In a message dated 1/8/04 9:10:15 AM Eastern Standard Time,

Arthurnator@... writes:

<< i Patty,

Even though was treated for RF in the beginning by his ped his was

such a rapid deteriation that his diagnoses was very cut and dry.We seen the

rheumy 3 weeks from the very 1st symptom and was immediately put on high

doses of

pred.Because it takes 6 weeks of chronic symptoms to officialy diagnose he

didn't start Methotrexate until 3 weeks later at his second appointment.

Hugs

Becki and 5 systemic

Hi Becki:

was dx'd initially with rheumatic fever? Was strep in his blood?

Forgive me, I know you have probably told me this before, but I have read so

much

lately.

I guess that's part of the reason Caitlin's rheumy has now added Methotrexate

to her meds, it's been well over 6 weeks and the steroids just aren't cutting

it.

Take care.

Patty

[Guest guest]

Hi Patty,

has been maxed out on 25mg MTX and maxed out on 200 mg Plaquenil at the same time.Not to mention being maxed out on Ibuprofin and prolonged steroid use.

They added the Enbrel along with the others.

Sounds like you have a GREAT rheumy and I bet before no time Caitlan kicks Arthurs butt.Aggressive is the way to go.The sooner the better.It sounds like they are leaning toward systemic JRA.It's not the end of the world, is proof of that.

Labs will become more frequent and a trip to the ped Opthomoligist every six months will be required to check for Plaquenil toxicity,very rare and if any problems do come up it's reversable.

I know you will have many questions,but wow what an awesome doc to start her on combination DMARD therapy.Georgina has sent many articles about adult rheumies starting patiants on combination to triple DMARD therapy,get the disease under control them wean off the drugs. is perfect his labs once again show it but the little green eyed monster wishes he was treated the same way.Caitlan is definately in GREAT hands.

Try not to worry about the drugs,the risk of the systemic JRA outweigh the risks.Both drugs have been used for a long time and the docs know alot about them.

I know we were all praying for strep induced arthritis,but again it's not the end.You will learn that Caitlan is one of the strongest persons you have ever met.JRA does something to our youngens,empathy,compassion,strength that you can not imagine.There is a saying around here.God gives special children special parents and he will not give you anything you can not handle.He also gave us Georgina who puts her heart and soul into this list.I fully believe with my whole heart and soul that without her would not be where he is today.Knowledge is power and she and this list have given me so much.I am thankful everyday that I can give my knowledge back and a ray of hope,and support others that are starting and going through our nightmare.

I noticed you said to , is it awful that your rheumy may not be a board certified pediatric rheumy.To answer your question yes and no.Usualy adult rheumies don't understand JRA but your rheumy sounds wonderful.If you like them and Caitlan likes them that is a plus.The aggressive aproach is an added bonus.You will have to always excuse my spelling.Born and bred in TN and even duiring AP english in high school the teachers were always upset about our spelling and use of contractions,lol.

So sorry that the fevers have returned and you didn't get the diagnoses we were all praying for.

Just to let you know.MTX and Plaquenil can take a few months to work.MTX 1-3 months and Plaquenil 3-6 months.Yes it is a real bummer but just the way it is.It's hard,real hard but just hang in there and have faith in God.Another thing is something that differintiates JRA from RA is you can just out grow it.Usualy by puberty.I know a long time when your child is so young but it has and does happen.Arthritis treatment has boomed in the last 5 yrs so keep your chin up and stay positive.

Sorry to have been so long,I am notorious for rambling.

Love and Hugs

Becki and 5 systemic

[Guest guest]

In a message dated 1/8/04 5:21:31 PM Central Standard Time, Emeraldsx3@... writes:

was dx'd initially with rheumatic fever? Was strep in his blood?

Forgive me, I know you have probably told me this before, but I have read so much lately.

Hi Patty,

While the ped had 4 opinions,viral arthritis,JRA ,RF and Lupas, scared the He## out of him.The rheumy said no way but he was given an antibiotic shot of Penecillan and put on asprin therapy.Our bigest problem was that there was a miscommunication between the ped and the rheumy.The rheumy "claims"he didn't know had the rash or fever.It wasn't until we took him to our niece's ped in Nashville that he got in.She actualy had to excuse herself to go cry and swore she would beg to get him in to Vanderbilt.He was in the next day and unofficialy diagnosed.Man this is bringing up some horrible memories.I so feel for those of you that are just being diagnosed.We honestly thought we were going to lose our baby.

Love and Hugs

Becki and 5 systemic

[Guest guest]

In a message dated 1/8/04 11:58:32 PM Eastern Standard Time,

Arthurnator@... writes:

<< has been maxed out on 25mg MTX and maxed out on 200 mg Plaquenil at

the

same time.Not to mention being maxed out on Ibuprofin and prolonged steroid

use.

They added the Enbrel along with the others.

S >>

Hi Becki:

Is on MTX, Plaquenil, Ibuprofin, steroids and Enbrel all together?

<<Sounds like you have a GREAT rheumy and I bet before no time Caitlan kicks

Arthurs butt.Aggressive is the way to go.The sooner the better.It sounds like

they are leaning toward systemic JRA.It's not the end of the world, is

proof of that.>>

We do like this rheumy. Of course, this is all new to us (but, I am

learning), so I really don't know the different approaches to take with JRA, but

he

seems to diligently working towards a definitive dx for Caitlin and getting her

free from symptoms. Is systemic JRA Still's Disease or are their different

forms of systemic?

<<Labs will become more frequent and a trip to the ped Ophthalmologist every

six

months will be required to check for Plaquenil toxicity,very rare and if any

problems do come up it's reversable.

>>

I feel like we live there with my three children. I haven't heard about the

ophthalmologist check up for Plaquenil. I better make an appointment now as

she books months in advance, as all specialists do. What type of eye problems

can is cause?

<>

Yes, every day I think of new ones. Especially when new meds are added. So

the MTX and the Plaquenil together are considered a combination DMARD therapy?

This is good? Thank God 's lab are 'perfect' Little green eyed

monster wishes he was treated the same way? Was he not treated aggressively in

the beginning? Is that what you mean? This route is a good route then?

<<Try not to worry about the drugs,the risk of the systemic JRA outweigh the

risks.Both drugs have been used for a long time and the docs know alot about

them.

>>

When I mentioned the new meds to my mother, she recognized them as cancer

drugs that were found to have an excellent effect on helping people with RA.

It's still so new that I haven't worried about the drugs to much, well the

steroids and the immune system, yes. I just want them to kick in and work for

Caitlin. Put the, whatever disease, at bay. Kick 'Arthur' in the you know what

and send him packing FOREVER, never to be seen or heard from again! A part of

me still is hopeful that she won't even need them long term, that this illness

will leave as quickly as it showed it's ugly face.

<>

I am still praying for this. We just don't know what it is yet. We just

keep moving forward every day and trying to get her feeling better. As I am

typing this she is upstairs arguing with her older sister, like old times LOL:)

<<You will learn that Caitlan is one of the strongest persons you have ever

met.JRA does something to our youngens,empathy,compassion,strength that you

can not imagine.There is a saying around here.God gives special children

special parents and he will not give you anything you can not handle.

>>

With the pain associated with JRA she will have to be strong to move forward.

Her twin sister has special needs so she, Alyssa and also Jen have known

from the get go that everyone is unique and that doesn't mean they are better or

worse than the other person. We were involved with a play with adults and

children with special needs and 'regular' people (they don't discriminate:). I

will never forget sitting in a big circle filling out our names, addresses,

etc. on a clip board going around. Alyssa had a man in his forties, with some

severe cognitive disabilities sitting next to her. He needed help and Alyssa

helped him without batting an eyelash. Like he was just a friend asking for

help, not a 40 year old man who couldn't read, etc. I was/am so proud of all my

girls. They truly see the inner person and help anyone who needs help. P.S.

She also became his 'helper' on stage. She was proud of herself and they had

a great time up on stage together LOL.

<<He also gave us

Georgina who puts her heart and soul into this list.I fully believe with my

whole heart and soul that without her would not be where he is

today.Knowledge is power and she and this list have given me so much.I am

thankful

everyday that I can give my knowledge back and a ray of hope,and support

others

that are starting and going through our nightmare.>

Thank God for Georgina starting this list and for all of you. I am fortunate

to have found this list. It's been a lifesaver. Thanks to for telling

me about it:) You are a ray of hope. I think you have probably answered

every single one of my gazillions of emails. Thank you:)

<>

I was a little concerned that he isn't listed as board certified in

pediatrics, but feel better after reading your email and others. I need to find

out

truly if he is or isn't. Caitlin and I really do like him. His nurse knows my

voice already LOL. I call whenever I have a question, etc. She's sweet. She

was dx'd with JRA 15 years ago, so she understands. I hope he is being

aggressive, though I really don't know what would be considered aggressive or

not.

<<You will have to always excuse my spelling.Born and bred in TN and even

duiring AP english in high school the teachers were always upset about our

spelling

and use of contractions,lol.>>

You are too funny. I used to proofread for a publisher and circle anything

that was wrong LOL. Now I couldn't care less if I mistype, well, sometimes I

couldn't care less LOL. You keep on typing however you wish and what works for

you, it works for me and I look forward to your responses.

<<So sorry that the fevers have returned and you didn't get the diagnoses we

were all praying for.>>

Thank you. Today the fever is behaving itself. Though last night she was

crying because her hand and knees were hurting:( She did quite a bit of writing

though with home bound school. Something she hasn't done in months. So I

told the teacher to take it easy with the writing. Still praying for a

definitive dx. Time will tell I hope.

<<ust to let you know.MTX and Plaquenil can take a few months to work.MTX 1-3

months and Plaquenil 3-6 months.Yes it is a real bummer but just the way it

is.It's hard,real hard but just hang in there and have faith in God.Another

thing is something that differintiates JRA from RA is you can just out grow

it.Usualy by puberty.I know a long time when your child is so young but it

has and

does happen.Arthritis treatment has boomed in the last 5 yrs so keep your

chin

up and stay positive.>>

I remember reading these take time to take effect. Hopefully, it will be

sooner or Caitlin doesn't flare to much in-between then. I am keeping the

faith,

well trying too:) God I hope and pray if it is JRA that she outgrows it and

soon:) I hope everyone outgrows it and soon:) I recently remember a woman I

met at our elementary school years ago. She was in pain and limping. I asked

her what happened and come to find out she has RA. I contacted her and she

has offered to help with any info, etc. I need. She understands a lot more of

this than I do, so it will be nice to get her perspective and experience too.

<<Sorry to have been so long,I am notorious for rambling.

>>

LOL, well I don't consider it rambling. I consider it a lifesaver. You have

a wealth of information that I need to know. Thanks for sharing and taking

the time to post.

Besides, did you get a look of how long my email is hehehehehe.

Take care.

Patty

[Guest guest]

In a message dated 1/9/04 12:07:16 AM Eastern Standard Time,

Arthurnator@... writes:

<< r bigest problem was that there was

a miscommunication between the ped and the rheumy.The rheumy " claims " he

didn't

know had the rash or fever.It wasn't until we took him to our niece's

ped in Nashville that he got in.She actualy had to excuse herself to go cry

and

swore she would beg to get him in to Vanderbilt.He was in the next day and

unofficialy diagnosed.Man this is bringing up some horrible memories.I so

feel

for those of you that are just being diagnosed.We honestly thought we were

going to lose our baby. >>

Hi Becki:

So the rheumy might have dx'd him with RF had he known about the rash and

fever? Why did the ped in Nashville excuse herself to cry? Did she think the

other doc had missed RF and caused to be sicker or undertreated?

We were worried we were going to lose Caitlin too especially when she was so

sick at the beginning and they were testing her for everything under the sun.

Then to be told of the possibility of heart damage and waiting on the tests

and results for 24 hours, NIGHTMARE! Thank God the tests were normal. Then the

rheumy wants her to have a bone marrow biopsy. That just about sent me off

the cliff too. Thank God, again, it was negative. When we got the report, I

realized they tested the marrow for HIV and Hep C, both negative, thank God. I

still worry though, every day. It's especially hard when we aren't even sure

what we are dealing with.

Take care.

Patty

[Guest guest]

Hi Patty,

No is not on all those drugs anymore.He was on them at the same time but now just takes 10mg MTX and 12.5mg Enbrel.Once he started the enbrel we were easily able to taper things to nothing.One more drop in MTX and he will be off that too.

The green eyed monster is that Caitlan is being treated very aggressively but not to aggressive.s doctors were good but it was slow going.It was almost a year before they added the Plaquenil.

I am trying to think of the Plaquenil toxicity to the eyes.It's late so I will get my PDR out tomorrow.I remember halos around lights then my mind goes blank. just got his reminder card from the Optho today.He has to go every year just because of the JRA and we found severe astigmatism from his first visit after starting Plaquenil. was only on the Plaquenil for about 6-7 months but Georginas son has been on it for years with no trouble,to my knowledge.

The MTX can kick in as early as 3-4 weeks but the Plaquenil takes a long time.If Cailtlan responds well enough to the MTX quickly they might drop the Plaquenil.

I never responded to the folic acid question. takes 1mg every day of the week.I asked about the 5mg pill and was shot down cold,don't know why.Mayby I will ask again since I can't seem to remember to give him his pill everyday since he came off the NSAID.Not only does it help with side effects it promotes cell division,just learned that yesterday.

Love and Hugs

Becki and 5 systemic

[Guest guest]

In a message dated 1/9/04 6:15:59 PM Central Standard Time, Emeraldsx3@... writes:

So the rheumy might have dx'd him with RF had he known about the rash and fever? Why did the ped in Nashville excuse herself to cry? Did she think the other doc had missed RF and caused to be sicker or undertreated?

Hi Patty,

No the rheumy told the ped there was no way it was RF because his strep had always been treated.The rheumy thought it was viral arthritas and would clear up on it's own in less then 6 weeks.The ped in Nashville cried because he was pitiful and we were DESPERATE. His rash and joint manifestastion was horific.If he hadn't gotten into the rheumy the next day he would have been hospitalized for sure.He was literaly contracted in a fetal position.

Hugs

Becki and 5 systemic

[Guest guest]

Georgina,

You are so sweet.I am just so grateful for this list.I used to just shake and nod my head yes to whatever the rheumies wanted to do.Later through the knowledge I gained here I became a key role in s treatment.You have helped so many and I am glad I can do the same,but not to your extent.

Love and Hugs

Becki and 5 systemic

[Guest guest]

Hi Patty,

I'm glad the timing of that post worked out well. Sounds like a good

plan, to move ahead and start the DMARDs to try to get things fully

under control as quickly as possible. Better to be safe than sorry, I

think, so it sounds reasonable to be aggressive right now and try to

keep things at bay, before the arthritis has a chance to do lasting harm

to your daughter's joints.

I just went and checked and Josh started taking the injectable form of

MTX back in mid-August, 1999. It was quite some time, four years, before

we made that switch. He was in the midst of yet another bad flare and

though we had increased his oral prednisone from 15 to 30mgs a day, his

white blood cell count was still way above normal and his SED rate was

creeping back up into the 60's again instead of immediately lowering

like usual. His hemoglobin levels were going down again, too. Hovering

around 9.

He had been doing well for a couple months so we lowered his prednisone.

I think it was from 17.5mgs to 15mgs. Our plan, all along, was to

gradually taper. He had breakthrough pain, immediately, like the first

or second day afterwards, but it's pretty common for the kids to

experience a temporary return of symptoms when you first decrease the

dose. Instead of getting better after a few days though he continued to

feel bad and got even worse. Full rash and low-grade fevers (around

101.5) started again. Being stubborn about wanting the taper to work

that particular time he/we actually toughed it out ... for a very long 6

weeks. Once he started having chest pains again and his breathing got

labored, with chosteochondritis pain, in addition to a lot of sore

joints and lots of fatigue and 'morning' stiffness (which lasted

throughout the whole day, most days) we finally gave in and raised the

prednisone dose back up.

Since it didn't work quite as quickly as we'd hoped to bring his labs

back within normal range and halt the joint pain and other symptoms, the

doctors felt we had to do something more. It came to the point where all

of a sudden it was obvious that seemed to be failing all the

conventional meds. It was either fly him to Honolulu and start him on

Cyclophosphamide IV Pulses or, less radical, try and see if switching to

injectable MTX (which he was maxed out on, according to his weight, in

pill form ~ at 15mg). We could do that here at home on Maui and there

was a chance that it might make the difference we were looking for. At

this time, the first biological (Enbrel) had just been approved for

kids. No study results yet, on kids with Systemic JRA though. It was

brand new. Being that Josh was so sick, the doctors wanted to work with

something that they had prior experience with, at least until they could

find out more about Enbrel. So we went the route of MTX.

My son, too, was extremely needle phobic. I even saught the advice of a

child psychologist we had seen previously, for other JRA-related issues

(to learn some imagery & relaxation methods to help Josh deal with the

physical pain, for advice about the effects of rapid body image changes

due to Cushingoid syndrome, for how to cope with 's loss of some

physical abilities when his disease was real active, as well as sibling

rivalry issues and better understanding of how sibling relationships can

change when one of them gets a chronic illness, etc.). We tried to get

him to express his fears and work through them by play-acting and

getting him more comfortable by actually holding and handling syringes.

It eventually paid off real well. Nowadays, he's even able to give

himself his own injections every evening ~ recombinant human growth

hormone. That's a whole other story, though. Having been on long-term

corticosteroid therapy, since he just turned six, he's got osteoporosis,

delayed bone age, and is of extremely short stature.

Anyways, I hope some of this was helpful for you. As you can see, we've

all basically been through sort of similar experiences. I guess,

sometimes, the longer you've been dealing with JRA the longer the posts

can be!

Stay well,

Georgina

Emeraldsx3@... wrote:

> In a message dated 1/8/04 4:13:14 AM Eastern Standard Time,

gmckin@...

> writes:

>

> <<

> My son started taking Methotrexate while he was still in the hospital

> during his first flare. So it was within the first month of his being

> sick. The doctor explained that it takes some time to begin working, so

> we started real quickly. He started at a typical beginning dose,

7.5mgs,

> and we worked our way up to 15mgs in gradual increases.

> >>

> Hi Georgina:

>

> This email is perfect timing. Caitlin had a fever today and a

swollen thumb

> and some spots (red spots). The rheumy has decided to start her on

the two

> exact meds you listed: Methotrexate and Plaquinel. I was going to

send an

> email out to the list as to what these two specific drugs do, etc.

Are these both

> maintenance arthritic medications? Caitlin will now be on: Cefzil,

> Prednisone, Methotrexate and Plaquinel. Doesn't that seem over the

top? The rheumy

> was going to wait a few weeks to see how Caitlin did on the steroid

taper, but

> with todays symptoms, he has decided to start. Has anyone been on

both at the

> same time here?

>

>

> <<They added a second DMARD after about a year, Hydroxychloroquine

> (Plaquinel), because he still wasn't having a very good response. His

> symptoms were still not controlled, despite taking NSAIDs

> (Indomethacin) and daily Prednisone, too.

>

>

> Sounds like Caitlin minus the antibiotic.

>

>

> <<My son's arthritis was more persistent than a lot of others, though.

> Atypical, I think, in that respect. He had some good days, with little

> or no pain and stiffness, but mostly it was like one really long flare

> that lasted for a few years. Frightening, really, because it seemed like

> it would be that way forever. I am so grateful that, eventually, things

> balanced out better. I think it was switching to injectable

> Methotrexate, versus taking it by pill form, that made the biggest

> difference for him. We eventually figured out that he hadn't been

> absorbing enough of a therapeutic dose orally. Some kids don't. Once he

> started taking it by injection we saw improvement.

>

>

> Caitlin's presentation has been atypical also. I hope and pray she

doesn't

> take as long as your son did to get this under control, though we

have seen

> improvement already, so they sound different in that respect. How

long was he on

> the Methotrexate oral before going the injectable route. Caitlin is

> extremely needle phobic, so I am worried about that aspect.

>

>

> Thanks so much.

> Patty

[Guest guest]

Hi Becki,

Your posts are so thoughtful and thorough. I really enjoy reading them

and I know I'm not alone in feeling very grateful to have met and gotten

to know you and little , through this list. So let me just extend a

very heart-felt thank you, for being here and also for taking the time

and effort to share your stories, your knowledge, and your wonderful

advice with the group. It's sad that we had to meet for the reasons that

we have but even though it was those unwanted circumstances that

initially brought us all together, having such a great group of online

friends really does help make living with JRA a little bit easier.

Thanks, for all that you do,

Georgina

Arthurnator@... wrote:

> Hi Patty,

> has been maxed out on 25mg MTX and maxed out on 200 mg Plaquenil

> at the same time.Not to mention being maxed out on Ibuprofin and

> prolonged steroid use.

> They added the Enbrel along with the others.

> Sounds like you have a GREAT rheumy and I bet before no time Caitlan

> kicks Arthurs butt.Aggressive is the way to go.The sooner the better.It

> sounds like they are leaning toward systemic JRA.It's not the end of the

> world, is proof of that.

> Labs will become more frequent and a trip to the ped Opthomoligist every

> six months will be required to check for Plaquenil toxicity,very rare

> and if any problems do come up it's reversable.

> I know you will have many questions,but wow what an awesome doc to start

> her on combination DMARD therapy.Georgina has sent many articles about

> adult rheumies starting patiants on combination to triple DMARD

> therapy,get the disease under control them wean off the drugs. is

> perfect his labs once again show it but the little green eyed monster

> wishes he was treated the same way.Caitlan is definately in GREAT hands.

> Try not to worry about the drugs,the risk of the systemic JRA outweigh

> the risks.Both drugs have been used for a long time and the docs know

> alot about them.

> I know we were all praying for strep induced arthritis,but again it's

> not the end.You will learn that Caitlan is one of the strongest persons

> you have ever met.JRA does something to our

> youngens,empathy,compassion,strength that you can not imagine.There is a

> saying around here.God gives special children special parents and he

> will not give you anything you can not handle.He also gave us Georgina

> who puts her heart and soul into this list.I fully believe with my whole

> heart and soul that without her would not be where he is

> today.Knowledge is power and she and this list have given me so much.I

> am thankful everyday that I can give my knowledge back and a ray of

> hope,and support others that are starting and going through our

nightmare.

> I noticed you said to , is it awful that your rheumy may not be a

> board certified pediatric rheumy.To answer your question yes and

> no.Usualy adult rheumies don't understand JRA but your rheumy sounds

> wonderful.If you like them and Caitlan likes them that is a plus.The

> aggressive aproach is an added bonus.You will have to always excuse my

> spelling.Born and bred in TN and even duiring AP english in high school

> the teachers were always upset about our spelling and use of

> contractions,lol.

> So sorry that the fevers have returned and you didn't get the diagnoses

> we were all praying for.

> Just to let you know.MTX and Plaquenil can take a few months to work.MTX

> 1-3 months and Plaquenil 3-6 months.Yes it is a real bummer but just the

> way it is.It's hard,real hard but just hang in there and have faith in

> God.Another thing is something that differintiates JRA from RA is you

> can just out grow it.Usualy by puberty.I know a long time when your

> child is so young but it has and does happen.Arthritis treatment has

> boomed in the last 5 yrs so keep your chin up and stay positive.

> Sorry to have been so long,I am notorious for rambling.

> Love and Hugs

> Becki and 5 systemic

[Guest guest]

In a message dated 1/9/04 10:31:42 PM Eastern Standard Time, gmckin@...

writes:

<< plan, to move ahead and start the DMARDs to try to get things fully

under control as quickly as possible. Better to be safe than sorry, I

think, so it sounds reasonable to be aggressive right now and try to

keep things at bay, before the arthritis has a chance to do lasting harm

to your daughter's joints.

>>

Hi Georgina:

I believe this wholeheartedly also. I just hope they kick in and prevent

damage to her joints and soon.

<< Once he started having chest pains again and his breathing got

labored, with chosteochondritis pain, in addition to a lot of sore

joints and lots of fatigue and 'morning' stiffness (which lasted

throughout the whole day, most days) we finally gave in and raised the

prednisone dose back up.

>>

Chest pains? What was the cause of this? Does this happen to him during

any/all flares?

<<It eventually paid off real well. Nowadays, he's even able to give

himself his own injections every evening ~ recombinant human growth

hormone. That's a whole other story, though. Having been on long-term

corticosteroid therapy, since he just turned six, he's got osteoporosis,

delayed bone age, and is of extremely short stature.

>>

Have you seen growth since he has started rGH? Jen started in October. They

keep saying someday she'll give herself the injections, but for now, I am

happy that she doesn't cry when it's time for the meds.

<<Anyways, I hope some of this was helpful for you. As you can see, we've

all basically been through sort of similar experiences. I guess,

sometimes, the longer you've been dealing with JRA the longer the posts

can be!

>>

All emails are helpful to me. Thank you for sharing your experience.

Take care.

Patty

[Guest guest]

In a message dated 1/9/04 11:41:51 PM Eastern Standard Time,

Arthurnator@... writes:

<< The green eyed monster is that Caitlan is being treated very aggressively

but

not to aggressive.s doctors were good but it was slow going.It was

almost a year before they added the Plaquenil.

I >>

Hi Becki:

I will take your word for it, that this is aggressive, you certainly have the

experience, I don't yet. Thank you for pointing the positive out with this

rheumy's route of treatment.

<<almost a year before they added the Plaquenil.

I am trying to think of the Plaquenil toxicity to the eyes.It's late so I

will get my PDR out tomorrow.I remember halos around lights then my mind goes

blank. just got his reminder card from the Optho today.He has to go

every

year just because of the JRA and we found severe astigmatism from his first

visit after starting Plaquenil. was only on the Plaquenil for about 6-7

months but Georginas son has been on it for years with no trouble,to my

knowledge.

>>

I am going to call Caitlin's eye doctor Monday to fill her in and see what

she suggests. Did the Plaquenil cause the astigmatism or did he have this

already? Caitlin wears glasses (when she feels like it is more like it) due to

being near sighted. She also has Duane Syndrome in her eyes so I will want her

followed even more closely as she already has something going on with her eyes.

<<months but Georginas son has been on it for years with no trouble,to my

knowledge.

The MTX can kick in as early as 3-4 weeks but the Plaquenil takes a long

time.If Cailtlan responds well enough to the MTX quickly they might drop the

Plaquenil.

>>

It's good to know that some can be on it for years with no trouble:) To drop

a med would be great:) Here's to dropping meds quickly:)

<<never responded to the folic acid question. takes 1mg every day of the

week.I asked about the 5mg pill and was shot down cold,don't know why.Mayby I

will ask again since I can't seem to remember to give him his pill everyday

since he came off the NSAID.Not only does it help with side effects it

promotes

cell division,just learned that yesterday.

>>

I am definitely asking about this Tuesday. How does cell division help?

Take care.

Patty

[Guest guest]

OK can someone rattle off some effective DMARDs at me?

I am on Enbrel, hydocodone and a NSAID--Naproxen. I feel its NOT the right combo

here........and after eading that DMARDs work better, I would like to know some

generic DMARDs that I could possibly ask for? (Medicaid only pays for three

generic, three name brand a month in Oklahoma--and all my namne brands are used

up).

LeAnn Cayer & Furbrats Blossom & Meriko

Heart Bandits American Eskimo Dog Rescue

Oklahoma Referral Chapter

Railroad Coordinator

www.heartbandits.com

[Guest guest]

LeAnn,

I'm not sure but I believe that MTX is generic. If it isn't is it possible for

you to get an override with a special request by your doc?

Axelrod

Re: [ ] DMARDS

OK can someone rattle off some effective DMARDs at me?

I am on Enbrel, hydocodone and a NSAID--Naproxen. I feel its NOT the right

combo here........and after eading that DMARDs work better, I would like to know

some generic DMARDs that I could possibly ask for? (Medicaid only pays for three

generic, three name brand a month in Oklahoma--and all my namne brands are used

up).

LeAnn Cayer & Furbrats Blossom & Meriko

Heart Bandits American Eskimo Dog Rescue

Oklahoma Referral Chapter

Railroad Coordinator

www.heartbandits.com

[Guest guest]

> OK can someone rattle off some effective DMARDs at me?

>

> I am on Enbrel, hydocodone and a NSAID--Naproxen. I feel its NOT the right

> combo here........and after eading that DMARDs work better, I would like to

> know some generic DMARDs that I could possibly ask for? (Medicaid only pays

> for three generic, three name brand a month in Oklahoma--and all my namne

> brands are used up).

Well, the Enbrel you are taking is basically a DMARD. But the most basic ones

I know are these:

Chloroquine: Don't know if it's sold in the USA. Here in Chile I can get it by

the generic name.

Hydroxychloroquine: Sold as " Plaquenil " both in the USA and Chile. Much more

expensive (but still among the cheaper ones), same effect as Chloroquine,

possibly less risk of secondary effects.

Methotrexate: Well known to forum members.

Leflunomide: I think Arava is the most common commercial brand.

Sulfasalazine: I think it's sold under the generic name.

And then the biologics like the one you are taking.

Probably I'm forgetting a few!

Cheers,

Manfred.

----------------------------

Visit my hobby website!

http://www.qsl.net/xq2fod

----------------------------

[Guest guest]

I took Sulfasalize EC for a while, $8 copay on my prescription plan.

I believe the brand name is Azulfidine EC. I took this, with Enbrel

and vioxx for about 4 months did so well, I came off of the

Sulfasalizine back in June. Now just on Enbrel and vioxx.

Hope this helps,

Keli

> OK can someone rattle off some effective DMARDs at me?

>

> I am on Enbrel, hydocodone and a NSAID--Naproxen. I feel its NOT

the right combo here........and after eading that DMARDs work

better, I would like to know some generic DMARDs that I could

possibly ask for? (Medicaid only pays for three generic, three name

brand a month in Oklahoma--and all my namne brands are used up).

>

> LeAnn Cayer & Furbrats Blossom & Meriko

> Heart Bandits American Eskimo Dog Rescue

> Oklahoma Referral Chapter

> Railroad Coordinator

> www.heartbandits.com

>

>

>

[Guest guest]

In a message dated 8/11/2004 3:05:36 AM Eastern Standard Time,

DeafEskie@... writes:

OK can someone rattle off some effective DMARDs at me?

Hi LeAnn...I am on Suflasalazine (brand name Azulfadine, but I get the

generic), which is not effective for some but has been effective for me!

[Guest guest]

Hi

I have been on Azulfidene NT for almost 6 months now and definitely feel

better. I also am on Bextra, Skelaxin, and Flexeril.

My energy level has returned and most of my joints other than my knee feel

much, much better.

My back is another issue. I have 2 herniated disks along wit some

degeneration. I have had two epidural injections--only temporary relief, then

two facet

injections (6 areas injected each time), some mild relief for a few days and

then back again. They are now suggesting a radio-frequency type of injection

where they burn the nerve, which is supposed to last up to one year. Any one

heard of this? Would definitely appreciate any input on the board or

privately.

Thanks

Barb

[Guest guest]

In a message dated 8/15/2004 4:58:14 PM Pacific Daylight Time,

xponder70@... writes:

Does he/she know about stoping/starting the prednisone? I

know you are on a low dose and haven't been on it for long, but

usually you must wean off of it, otherwise you can experience

extremely severe side effects. It can also throw you into an RA

flare. Just another thing to be talking to your rheumy about to

ensure you are being treated in the best way possible.

Jennie

No, she doesn't know I'm not taking it regularly, I don't see her again

until October. When I had the reaction to Plaquenil, she let me titrate some

Prednisone I had at home since I am an NP.

Abby

[Guest guest]

In a message dated 8/15/2004 4:58:14 PM Pacific Daylight Time,

xponder70@... writes:

Since RA is progressive, it's common for your meds to one day not

work as well. That is when you need to discuss your meds with your

rheumy. Does he/she know about stoping/starting the prednisone? I

know you are on a low dose and haven't been on it for long, but

usually you must wean off of it, otherwise you can experience

extremely severe side effects.

I will make sure I talk to her about all of this. It's all new in this

respect. I'm glad you all are here to bounce things off of. I didn't realize the

Sulfasalazine to be working so well .. and I certainly didn't realize that

stress would affect me so profoundly.

Abby