Re: Riley's rheumy visit

[Guest guest]

Thanks Eli,

Seems like some people want to automatically think that I am saying that NO ONE can tolerate metho. I swear I didn't say that(they can look back at my post) I just wanted to try and be helpful and share things with you all that may be helpful and the story in ARTHRITIS TODAY oh it was so touching it had me crying I am gonna try and find it again. It was just such a sad and touching story. Yes it's true and I knew this that you can try your child on any drug but you have to look and pay close attention to the side effects. Sorry if someone misunderstood. Big Hugs and best wishes to you and Riley from me and na. Thanks Again for being so nice.

skyley8@... wrote: Hi Diane, I'm thinking of putting her on the MTX. The nurse just told me that if it doesn't work we can still try the Kineret study in 4 weeks. I didn't realize that we would still have that opportunity if we needed it. I'm worried about her immune system with the MTX, what with her starting Kindergarten next year and all. Have you not had any problems 's immune system? I definitely don't want to put Riley through the shots if I don't have to. I think it's probably a good idea to try the non invasive drug first to see if it works. Then if we need it the Kineret is still there. The nurse also told me that the deaths from Enbrel and Remicade were in older people with other conditions as well as RA. Not that the drugs didn't have anything to do with it, but there may have been other factors involved. Thank you for helping me with this decision. Eli and Riley 4 poly

[Guest guest]

Eli-

So true. Picking a med now is not an irreversible decision. If it doesn't work or Riley doesn't tolerate it, you can always move onto other things. Just be aware that with mtx, it works by slowly building up in the system. You shouldn't expect to see results for at least 6 weeks, maybe more. For , it was the six week mark on the nose. One morning she just hopped out of bed and walked across the room like nothing was wrong. My husband and I just looked at each other and said, "Did you see that?" Re immune problems, I was really worried about that, too. has been in daycare/preschool around lots of kids. She has been sick at various time throughout the winter. She had strep, a stomache virus and various colds. However, at that age, even without being on an immunosuppressive drug, my other daughter was probably sick just about as much. It may be making her slightly more susceptible, but it honestly has not been a big problem. Best of luck.

Diane (, 3, pauci)

[Guest guest]

Jona-

I'm sorry you took my post as a personal attack on you. It was not intended that way. You raised a serious side effect about mtx. I agree it's important that people should be aware of the terrible things that can happen on these drugs. However, I merely wanted to present some of the good things about it, too. Someone reading just that post who knows nothing about it (and I don't mean you, but some of the parents whose children have just been diagnosed and who haven't done research) could panic and automatically avoid the drug. I'd hate for that to happen. I really apologize that I offended you when I was only trying to give Eli additional information.

Diane (, 3, pauci)

[Guest guest]

In a message dated 5/20/2002 2:23:45 PM US Mountain Standard Time, skyley8@... writes:

It's funny, I spoke to the ped rheumy at UCLA today and he said that she sounded like a good candidate for Kineret. I still think I'm gonna try the MTX first. Anyway, he asked me If I was in the medical field. I guess that all of the knowledge that you and everyone else have been sharing combined with my incessant reading is making me come across pretty darn smart!!! Isn't that a hoot!

Eli-

Good for you!!! This made me laugh.

Diane (, 3, pauci)

[Guest guest]

Val-

I've never heard of that test. Is it routinely done? While I've heard about and read posts about MAS, I still don't really understand what it is or why it happens. I certainly hope Rob doesn't get it. I keep thinking about asking 's doctor more about this and keep forgetting. Well anyway, glad I inadvertently helped you remember the name.

Diane (, 3, pauci)

[Guest guest]

Jona-

Thank you for your good wishes. Right back at you and na.

Diane (, 3, pauci)

[Guest guest]

Diane,

Your post helped answer a question I had last week - the fibrin D-dimer test

that the Doc was talking about tests for Macrophage Activation Syndrome - when I

read it in your post I remembered that it is exactly the words he used. He said

that even though that test was high or positive for the first time - that he

didn't think Rob had the syndrome because his other labs looked good. Now I

know what to look for - thank you, thank you.

Val

Rob's Mom (4,systemic)

In a message dated Mon, 20 May 2002 12:52:42 PM Eastern Daylight Time,

dbornscheu@... writes:

>Jona-

>

>I don't think anyone would dispute there are potentially serious side effects

>from methotrexate, most notably liver and lung problems.  On this list, we've

>even had a child die of complications from mtx (liver problems and macrophage

>activation syndrome).  However, there are potentially serious side effects

>from every medication.  Even seemingly innocuous NSAIDs can result in kidney

>failure or gastrointestinal bleeding.  However, I don't think you can dismiss

>a drug because a few people have had serious problems  with it.  With the

>proper screening, those problems should be preventable.  That's why regular

>blood tests are ordered with anyone taking mtx.  MTX has been around a long

>time and it is used safely and effectively in most patients.  Studies have

>been done on patients taking it up to 20 years.  A lot of the newer drugs are

>promising, but there just isn't as much data available on the potential

>long-term effects.  But there have been deaths from infection reported from

>drugs like Enbrel and Remicade.  Enbrel has been associated with demylenating

>symptoms (ms).  I don't know much about Kineret, but I seriously doubt all

>the potential side effects are known at this point.  My daughter is on mtx

>and has had no problems with it at all.  I feel very comfortable with my

>decision to put her on that medication, and it has worked very well for her.  

>In making a decision regarding medication, I think you need to do the

>research.  Look at the studies that have been done.  Talk to people who have

>used it.  You will find worse-case scenarios, but you can't look at them in a

>vacuum.  

>

>Diane (, 3, pauci)

>

[Guest guest]

Hi Eli,

I would say somebody has probably died from every drug out there.No

they dont always prescribe pred with MTX. is systemic and I hate to

sound dramatic but it keeps him alive.If we were to lower his pred to the

point the fevers and rash come back and we didnt do anything about it,it

is only a matter of time before his organs get involved,heart, lungs, brain,liver,splean.The

one child that died from MAS was systemic,started out as a flair then pneumonia

then brain swelling,he was also systemic.Just because most of us are pushing

for the MTX one mom did bring up a good point.They are treating this disease

more agressavelly then they used to,what they do now may not be the same

as what they did a year ago.Dont totally disregard the kineret because

of this list.I want on Remicade but his dr wants more trials on kids

especially systemic so he wont put him on it.There are other kids systemic

on this list that it is working absolute wonders on but for others its

not but they are still so much better than before.

Becki and 3systemic

skyley8@... wrote:

Hi

Becki,

You're right, knowledge is power. Thank you for sharing your knowledge

with me. It's funny, I spoke to the ped rheumy at UCLA today and

he said that she sounded like a good candidate for Kineret. I still

think I'm gonna try the MTX first. Anyway, he asked me If I was in

the medical field. I guess that all of the knowledge that you and

everyone else have been sharing combined with my incessant reading is making

me come across pretty darn smart!!! Isn't that a hoot!

How sad that children are dying from this drug. How scary to make

the choice to put your child on it after hearing that. It must have

been so very hard for you as it is for me. I suppose we just have

to hope for the best. I for one think that modern medicine is an

amazing thing and has done so much for so many people with so many horrible

diseases. I hate to put the medication into her beautiful pure little

body, but if it's a matter of saving her joints and lessening her pain.

I'm just gonna pray for the best.

I'm glad that the MTX has helped , I hope it does Riley. Do

they regularly prescribe pred with MTX? I hope gets his Enbrel

soon. Give him a hug from Riley.

Eli

and Riley 4 poly

[Guest guest]

Hi Diane,

I don't know a whole lot about the test - it is one they did frequently on

Robbie when they first made the diagnosis (along with all the other labs he was

having) and I couldn't find any information on the test then - and it was normal

so I concentrated about the other stuff then - and kinda forgot about it. Rob

sees his regular rheumatologist - and then the pediatric team evaluates

everything as a group - and they all trail in (sometimes) and check him out

(this is happening less, now that he is appearing more " normal " ) anyway - it had

been neg all along, and the rheumatologist didn't have that test done along with

all the others before his visit a couple of months ago - and the " team " thought

that was a bad idea, that he should be sure and have it done the next time -

which was last week - and this time it was high. I haven't been able to find

much on MAS, since you helped me remember - I guess I will have to go into the

archives (if I can remember my password for ! I emailed his rheumy

about it last friday - and haven't got a response back - which is very unlike

him - so I will wait and see - give him a little time - he may be busy. Thanks

again - I am really rambling - so I'd better close.

Val

Rob's Mom (4,systemic)

In a message dated Tue, 21 May 2002  1:16:20 PM Eastern Daylight Time,

dbornscheu@... writes:

>Val-

>

>I've never heard of that test.  Is it routinely done?  While I've heard about

>and read posts about MAS, I still don't really understand what it is or why

>it happens.  I certainly hope Rob doesn't get it.  I keep thinking about

>asking 's doctor more about this and keep forgetting.  Well anyway, glad

>I inadvertently helped you remember the name.

>

>Diane (, 3, pauci)

>

[Guest guest]

Thats Ok Diane, I didn't say that no one could tolerate metho I was only sharing my experience and I have already explained that I didn't mean for anyone to think that I meant for their child not to take the drug or that no child could tolerate it. I was only trying to help. I am sorry if I made you mad, and I am not mad and didn't take your post as a personal attack. You and Jami are in my prayers and I hope your doing good today! I'll be praying for Jami and all the other chidren in the world too! Jona, mom of na 2 poly

dbornscheu@... wrote: Jona- I'm sorry you took my post as a personal attack on you. It was not intended that way. You raised a serious side effect about mtx. I agree it's important that people should be aware of the terrible things that can happen on these drugs. However, I merely wanted to present some of the good things about it, too. Someone reading just that post who knows nothing about it (and I don't mean you, but some of the parents whose children have just been diagnosed and who haven't done research) could panic and automatically avoid the drug. I'd hate for that to happen. I really apologize that I offended you when I was only trying to give Eli additional information. Diane (, 3, pauci)

[Guest guest]

Thanks Diane. You've been a big help. They said that if it wasn't working after 4 weeks we could try the Kineret, but now I think I'll give it more time. I'm so scared to give her that first dose. We're doing it Sunday. We are doing the live vaccines on Thursday and the Doc want's some time in between. Makes sense to me.

take care,

Eli and Riley poly 4

[Guest guest]

Hi Becki, I think you're right about people dying from all drugs, I think we just have to take our chances and hope for the best. Some people may have a terrible reaction to certain drugs, but so many others are helped.

You do not sound at all dramatic, thank God the pred is helping , I'm sure it keeps many people alive and for that I am grateful. My mother has lupus and the pred saved her life at one point.

I have not ruled out the idea of using Kineret. I am going to try the MTX first. I think for my needle phobic kid a pill once a week as opposed to a daily shot is the better option. Especially if it just might do the trick. I sure hope it does.

Eli and Riley 4 poly

[Guest guest]

Eli,

is 3 almost 4 and he has learned how to swallow a pill.If it

doesnt work for you or if your interested when was diagnosed right

before his 3rd birthday took MTX for injection with preservative

in 4oz juice,he never new he took it untill he got switched to injections,my

request.

This doesnt appear to be the norm though,Ive only found one other rheumy

that does this for young children most just do shots,if they cant do pills.

skyley8@... wrote:

Hi

Becki,

I think you're right about people dying from all drugs, I think we just

have to take our chances and hope for the best. Some people may have

a terrible reaction to certain drugs, but so many others are helped.

You do not sound at all dramatic, thank God the pred is helping ,

I'm sure it keeps many people alive and for that I am grateful. My

mother has lupus and the pred saved her life at one point.

I have not ruled out the idea of using Kineret. I am going to try

the MTX first. I think for my needle phobic kid a pill once a week

as opposed to a daily shot is the better option. Especially if it

just might do the trick. I sure hope it does.

Eli

and Riley 4 poly

[Guest guest]

Eli,

is 3 almost 4 and he has learned how to swallow a pill.If it

doesnt work for you or if your interested when was diagnosed right

before his 3rd birthday took MTX for injection with preservative

in 4oz juice,he never new he took it untill he got switched to injections,my

request.

This doesnt appear to be the norm though,Ive only found one other rheumy

that does this for young children most just do shots,if they cant do pills.

skyley8@... wrote:

Hi

Becki,

I think you're right about people dying from all drugs, I think we just

have to take our chances and hope for the best. Some people may have

a terrible reaction to certain drugs, but so many others are helped.

You do not sound at all dramatic, thank God the pred is helping ,

I'm sure it keeps many people alive and for that I am grateful. My

mother has lupus and the pred saved her life at one point.

I have not ruled out the idea of using Kineret. I am going to try

the MTX first. I think for my needle phobic kid a pill once a week

as opposed to a daily shot is the better option. Especially if it

just might do the trick. I sure hope it does.

Eli

and Riley 4 poly

[Guest guest]

Eli,

I second the advice you have received about putting the medication in

ice cream or pudding. Our daughter takes her pred and her MTX this

way. Her grandparents thought I was nuts asking for some ice cream

for breakfast. She takes a big spoonful of ice cream and shoves all

the pills into it and then swallows. She can swallow the coated pills

like the Celebrex and Zantac but the ones that melt she can't do. She

couldn't get the calcium down because they are horse pills so they

switched her to Tums (wintergreen flavor) and she does fine with

those.

As for the folic acid, she only takes a general multivit with it and

has done well. It seems to depend on the person like so many things.

All of us seem to react so differently to medications. She has been

fortunate that way.

e with 15y.o. w/poly

[Guest guest]

Eli-

I was so scared about that first dose, too. In fact, my husband refused to

give it to for several weeks until he saw no dire effects were

apparent. Good luck.

Diane (, 3, pauci)

[Guest guest]

Becki-

That's great can swallow a pill. We have to crush everything up and

mix it with a little warm water and juice. That does get old.

Diane (, 3, pauci)

[Guest guest]

Thanks Diane, I'm sure she'll be fine. I just have to believe! She starts Sunday. Thank God my husband came home today. He is my rock! Take care.

Eli and Riley 4 poly

[Guest guest]

Eli and Riley

So glad your hubby is home. Let us know how it goes with the MTX. We'll keep all of you in our prayers.

and Rob, 13, JAS