reply to Enbrel vs mtx

[Guest guest]

Diane, Thought I'd give you my two bits on this. :0) Having two

children w/jra we have been on just about every med you can imagine.

And guess what---we can't tolerate mtx at all. One of the few

families that have a really hard time with it. But, we have

reactions to celebrex, naprosyn, lots of the immunosuppresants too.

Gosh--too many to list. Anyhow, my view on this is start with the

least strongest med possible and work your way up. Methotrexate is a

wonderful drug for most kids and I would give my eye teeth if when we

started on it it would have worked. Same with naprosyn. I thought

man the mtx is going to be the key. Anyhow my point is this disease

sometimes responds to a med and just " goes to sleep " so to speak and

the child does fine. But then you may be on a med for a while and

all of a sudden it rears it's ugly head and it's like it's saying

OKAY, i've been quiet long enough. It's good to know you may have

other drug options. On the other hand if your childs jra is

aggressive then you have to be even more aggressive. The doctors

don't like to go back and try weaker meds, simply because most of the

time that doesn't work. If you jump in both feet and go to the top

of the med list you may end up having to back track and start all

over. Oh, I hope this makes sense. See, and Olivia can't

take MTX, or most other meds. We are on Enbrel and it has been a God-

send. But, over the last couple of months their jra has seemed to

catch another gear and I wonder, just what meds are left? But I also

know we have gave the weaker meds a fair shot. Now we are trying to

put them together and see if they can fight the disease that way. We

have added Plaquenil, vioxx and singulair(to Olivia) and this seems

to have helped some.

Discuss any questions and doubts with your Dr. You remember--you are

your childs best advocate. If you feel you need to have her jra

treated with the aggressive meds--then you go after it! You know

your child best of all. Geez--I hope I've not rambled to much and

you can get something outta this. Take care, Sharon

[Guest guest]

Sharon-

Yes, your response helps. Can you tell me what types of problems your

children had on the mtx? Also, my daughter was only diagnosed with jra at

the end of August. She's been on Naprosyn till now. It has helped somewhat.

Her swelling is a little less. She doesn't seem to be in significant pain.

She does have a contracture and a significant limp. This Dr. says if we can

get the disease into remission within the first year, there's a 50% chance it

won't come back (because she only has it in one joint). The conflict I have

is this: Do I come at this from the perspective she's going to have this

disease forever and be on major meds for the rest of her life, or that the

disease could be stopped in its tracks if it's treated aggressively early?

The other issue is, if I just let her stay on the Naprosyn and accept the

swelling and the limp, will that result in permanent joint damage? If I

weren't worried about these issues, I would definitely say let her stay on

the Naprosyn. She's not doing great, but she's not doing too bad. If she

doesn't seem to be in serious pain, maybe that's the best I can hope for.

As you know, there are no easy answers. I do appreciate the input of you

more experienced jra parents.

Diane

[Guest guest]

Sharon-

Thank you for being so long-winded. Not only don't I mind; I appreciate it.

Diane

[Guest guest]

Hi Diane,

My daughter, Kelsey, age 3 1/2, was diagnosed with poly jra in April of this

year. She, too, had a contracture and walked with a horrible limp, when she

was able to walk at all. Her affected joints include both knees, both

ankles, both wrists, some fingers and some toes. Her knees and wrists being

the worst. She has been on Naprosyn since diagnosis and went through 5

months of aggressive physical therapy (3X per week), which she could probably

still benefit from however our insurance refuses to pay for anymore this

year. Her doctor would like for her to at least have PT once every other

week, but for now its just not possible, as that is very expensive w/o

insurance paying. Pool therapy worked wonders, the warm water is an awesome

treatment for arthritis. Now, its been 7 months since she was diagnosed and

started Naprosyn and she is doing WONDERFUL. She can now straighten out both

of her knees completely, not only does she not walk with a limp now, she

RUNS!!! She can keep up with other kids her age with no problems now, and

this is something I was afraid of never seeing again. Her wrists still give

her the most problem, but compared to when she was first diagnosed they have

improved by about 95%, and for that I am also very thankful. Occasionally

her knees will appear slightly swollen in the mornings or at night, but after

her dose of Naprosyn she's fine again. On her worst days now, she experiences

a little pain and stiffness when she first wakes up, but is over it usually

within an hour. I was told by many people that Naprosyn alone did little or

nothing for their child, so I feel very fortunate we've had such results for

Kelsey. I do strongly believe the physical therapy has helped her more than

anything. Has your daughter had any therapy at all, or has her doctor

recommended it? If not, I would definitley ask. Don't think this is the

best you can hope for, your daughter's treatment can be affective with other

medication and/or therapy. If I knew 7 months ago how well Kelsey would be

doing now, it wouldve been such a comfort. She was very sick, and as you've

read in this looong, rambling letter she has improved GREATLY! You're right,

there are no easy answers and what works for one child may not work for

another, so try to stay positive and do hope for the best )

[Guest guest]

Kelsey's doctor prescribed EMLA for her to use for lab work. It doesn't take

the initial fear away, but once she was stuck she didn't feel any pain and

she stopped crying! It worked great for us, too.

[Guest guest]

Diane,

, Olivia and I (I'm in remission, I have dermatomyocitis)were

all on MTX at one point or another. We had ulcers from the mouth to

the " toot-toot " . Not just a few, lots, like I had more than fifty in

my mouth alone according to dr. I couldn't tell where they began or

ended. But he could and it was one of the most terrible reactions

he'd seen. Terrible tummy aches and diarrhea for the kids,

was the only one that had the elevated liver enzymes. It just didn't

work for us and we took folic acid too. Keep in mind, this is not a

normal reaction so, don't lose hope if your dr. puts y'all on it, it

may just be the med you need. As far as knowing what to do, well,

even with 7 years experience, two children with jra, the answer is

not easy. But for me I sort of look at it like this. If we are on a

med and it is doing just a " tad " then for us I consider that

unexceptable and so does our rheumy. The med needs to be doing more

good than the disease is doing bad. If you are seeing damage with

your child and more pain and flares than good days, my dr. would

advise a change. But you have many, many options because your child

is at the drug that is usually used to begin with. If you have a

little response to Naprosyn then maybe you'd have better response to

something else. But every one of our little ones bodies are so very

different that what goes for one doesn't go for the other. Diane we

deal with a mean, tricky disease. It doesn't like to be figured out

and sometimes I think the blasted thing has a mind of it's own! lol

What you basically have to do is evaluate everything that your child

is going through and see do you think there is something that will

offer more relief and slow down disease progression if you are

dealing with active disease.

and Olivia take the Enbrel injections. had been so

sick he was ready for whatever it took to make him better. He agreed

to take the injections as long as I gave them. He said he knew he

trusted me and even if I didn't do to well he still wanted me to give

them. And---I didn't do so hot. The first shot I gave him--it

hurt. He told me, Momma, it's okay, I know you love me and wouldn't

hurt me on purpose, you'll get better at it. And I've gotten

better. Olivia on the other hand---whew! typical gal. She screamed,

pitched a fit and did not, under any circumstances want the shots.

But, I did sit down and we talked and I told her, Olivia, you have to

take them, you can choose whom to give them (she chose me!) She was

so scared, but she sat there like a trooper, cried some but didn't

fight me. Neither of them like them, but after two shots was

signifcantly better. We had our worst flare about a month ago since

started he Enbrel 1 and 1/2 years ago. Olivia's response was much,

much slower she started showing minimal improvement in June after

being on the Enbrel since around last December. Whats so weird about

it is that has systemic and Olivia polyarticular. Poly is

the one that supposedly, statistcally, responds the best. They both

will tell you that they don't like the shots, but they like feeling

better more. So they take them, without a fight.

Also, around May or June I guess, the dr. prescribed a cream called

EMLA----yippee!!!!! This stuff is great. Deadens the skin, I leave

it on about 1 to 2 hours and it really helps. Sometimes they don't

feel a thing. But it is like a security blanket for them. They

don't want to take their shots without it. Call it a nerve pill in

cream form, hahahahaha!

On another note. I completely understand your feelings about wanting

your child to have the best med out there, but you are right, you

still have to worry about expense. had been on med since,

well forever it seems, he met all the criteria for Enbrel so he was

approved. Olivia did not. But, the dr. contacted the makers of

Enbrel, called Immunex, they helped him get the necessary

documentation to state medical necessity. Olivia's disease is

progressive and he let the insurance company know. Approve Enbrel,

it will be less expensive in the long run. They approved it, no

hassle, no problem. It costs $1,200.00 per child, per month for us.

Insurance has paid and I pay copays, to this point. If you do go on

Enbrel, let me know, there is a number to call, sorta like a help

line and they put you in touch with who you need to talk too. Also,

they file my insurance for me and take care of the worry of

recertification. So far it's been an easy experience. Hope it stays

that way. Take care, Sharon Sorry so longwinded--

> Sharon-

>

> Yes, your response helps. Can you tell me what types of problems

your

> children had on the mtx? Also, my daughter was only diagnosed with

jra at

> the end of August. She's been on Naprosyn till now. It has helped

somewhat.

> Her swelling is a little less. She doesn't seem to be in

significant pain.

> She does have a contracture and a significant limp. This Dr. says

if we can

> get the disease into remission within the first year, there's a 50%

chance it

> won't come back (because she only has it in one joint). The

conflict I have

> is this: Do I come at this from the perspective she's going to have

this

> disease forever and be on major meds for the rest of her life, or

that the

> disease could be stopped in its tracks if it's treated aggressively

early?

> The other issue is, if I just let her stay on the Naprosyn and

accept the

> swelling and the limp, will that result in permanent joint damage?

If I

> weren't worried about these issues, I would definitely say let her

stay on

> the Naprosyn. She's not doing great, but she's not doing too bad.

If she

> doesn't seem to be in serious pain, maybe that's the best I can

hope for.

> As you know, there are no easy answers. I do appreciate the input

of you

> more experienced jra parents.

>

> Diane

[Guest guest]

-

It's great Kelsey is doing so well. I'm surprised she wasn't put on anything

stronger than Naprosyn. How long did it take to see a significant

improvement after she started on it? 's been on it three months, and

she has improved somewhat in terms of stiffness and pain. The swelling never

seems to go down very much, though. She did see a physical therapist just

once for a consult/suggestions, and we're doing stretching exercises every

day to try to decrease the contracture. Her doctor thinks it has decreased

by a couple of degrees. I'm a little depressed though. Since the weather

got cooler (we're in Arizona), I've been taking her out walking more. She

won't go very far before she demands to be picked up or just sits down on the

sidewalk. She falls down alot. I don't think she's doing worse; I'm just

noticing it more. I guess I thought I'd see more of an improvement by now.

A month ago I was thinking how lucky we were that she wasn't doing worse.

Now I'm thinking, if it's not getting better, it'll probably get worse.

Emotional ups and down!

Diane

[Guest guest]

Diane,

It took Kelsey about 2-3 months after starting Naprosyn before we started

noticing such a significant improvement. There was a time frame over the

summer when she was flaring and her doctor was considering another medicine,

Tolectin, but fortunately we didn't need to change. Actually, we concluded

the flaring was due to a nasty UTI, leading into a kidney infection, she

developed as a result of using bubble bath, something we will NEVER use

again! I am also very surprised that she has not been put on anything

stronger, but for now I just consider ourselves lucky and we count our

blessings every day. I've also been quite surprised how well Naprosyn has

worked for her, I honestly didn't expect such results. I think what has

helped Kelsey the most was the pool therapy, and she really enjoyed it too,

as it was fun for her. I know what you mean about the emotional ups and

downs, I still have them as I worry about Kelsey all the time. Even though

she's been doing so well I know we can only take this thing one day at a

time, knowing things could go in the opposite direction overnight. I've

learned to appreciate all these good days and make the very most of them.

There are so many things I took for granted with my oldest daughter, age 8,

that I greatly appreciate now with Kelsey. Hang in there, I know its easier

said than done, but keep your chin up! These kids are truly amazing. Take

care,