RE: Re: methotrexate/To Cathy from Missy

[Guest guest]

Hi ,

My daughter, , is six and has been on MTX for four years now. She started

out when she was two taking 25 mg. of Methotrexate Injections once a week. She

did have some of her hair fall out. More like a lot of thinning. But that's a

high dose for someone who weighed 29 lbs. The arm hair kind of diminished, and

her eyebrows kind of thinned. Unbelievably and ironically though, the " baby fur "

she was growing on her face from the Prednisone DID NOT fall out until she got

off the Prednisone. What's up with that???????!!!!!!(she was on 67 mg of

Prednisone a day for a while- gained 25 lbs.) She gets a little tummy upset I

guess. But, it's not like the cancer patients you see on tv with their chemo

vomiting all night --I don't think.

Really, don't be scared of it. It has helped . She did take the pills for

awhile, but the docs said she wasn't absorbing it enough, so they switched her

to the injections. NEVER did I think I could stick my BABY, but you just do what

you gotta do. I think that's my new motto. LOL Good luck with everything.

By the way anyone else on Remicade that has developed antibodies to it and had

to switch to Enbrel - could you please email me and tell me how the side effects

are? has been so sick since Dec and they don't think the Remicade is

working anymore. She doesn't really have any side effects from the Remicade that

I've noticed, and I'm so scared of the injection site reactions of Enbrel. Also,

does it burn going in? HELP! I can't imagine giving Em a shot every day with

Kineret, so I guess her options are limited. Any advice???

Thanks,

Missy

sandelur <jesschaz@...> wrote:

Hi ,

My husband has been on 10 mg of methotrexate since the beginnging of

the year. The only side effect he has had is a little bit of uspet

stomach. The wonderful people out here told us he should take it at

night before bed and that works fantastically. He sleeps through

most of the nausea. Also he takes it on friday nights that way he

does not have to get up early on saturday and if he doesnt feel well

he can sleep. Other than the little bit of upset stomach he has not

had any problems with it.

Have a great day,

>

> Hi to all,

> I am due to start taking methotrexate this wknd. (10mg.pills) and

was

> wondering about the side effects. For those who have suffered

through

> them, how quickly did you start to feel them? Right away or after

a

> few weeks? Also, anyone who suffered hair loss. How did it

happen?

> Thinning, clumps, over time, right away?? I'm going to be taking

folic

> vitamins with it, but am a little anxious what to expect. I hear

the

> injections offer less side effects, but for insurance reasons,

they're

> not an option right now. Also, if anyone can suggest some easy

reading

> books on RA that I might give to my boyfriend. He's been very

> supportive, but I can see from the look in his eyes, that he can't

> understand it. I don't blame him, very few who don't have it or

have

> someone close who has can understand. Thanks in advance for any

help.

>

>

[Guest guest]

I would advise you to get the twice-weekly 25 mg Enbrel. I tried the

once-weekly 50 mg, and the needles were so dull that I would think that

it's just not going in. Besides that, it didn't seem to last the full

week.

The 25 mg does not burn at all going in for me. Occasionally I will

have an injection site reaction, but it's like a mosquito bite. Most of

the time I don't have a reaction. When I do, I put some Sarna lotion on

it. That's the best anti-itch medication that I've tried. I have no

adverse side effects from Enbrel, except these occasional injection

site reactions.

I really hope that the Enbrel will work well for . It seems to be

my miracle drug.

Sue

On Thursday, April 20, 2006, at 06:03 PM, MELISSA CRIGLER wrote:

>

> By the way anyone else on Remicade that has developed antibodies to

> it and had to switch to Enbrel - could you please email me and tell me

> how the side effects are? has been so sick since Dec and they

> don't think the Remicade is working anymore. She doesn't really have

> any side effects from the Remicade that I've noticed, and I'm so

> scared of the injection site reactions of Enbrel. Also, does it burn

> going in? HELP! I can't imagine giving Em a shot every day with

> Kineret, so I guess her options are limited. Any advice???

[Guest guest]

Hi Missy,

I read the following and I'm wondering how long your was on Remicade

before it stopped working for her. Also, how long did she take high doses

of Prednisone? My daughter (also ) has been on 40 mg since 2/27. She

has gained 22 lbs so far and I have to say for a girl who is almost 13, this

is a very bad thing. We have tried several times to reduce the dosage, but

every time she gets down to 30 mg, she is in excruciating pain. In fact,

today I brought her back up to 40 mg until we see the rheumatologist again

Monday. She has had three weekly doses of Humira so far and so far no

positive results, but that could be because I tried to reduce the Prednisone

too soon. I hate Prednisone and really want her off it. I think the doctor

is going to want to start MTX soon and I hope that will help with the

weaning off the Prednisone. Does anyone know if you can take Prednisone and

MTX at the same time?

From what I know of Enbrel, the injection doesn't hurt. If you're already

giving MTX injections, you should have no problems with it.

Lori

_____

From: [mailto: ] On

Behalf Of MELISSA CRIGLER

Sent: Thursday, April 20, 2006 6:04 PM

Subject: Re: [ ] Re: methotrexate/To from Missy

Hi ,

My daughter, , is six and has been on MTX for four years now. She

started out when she was two taking 25 mg. of Methotrexate Injections once a

week. She did have some of her hair fall out. More like a lot of thinning.

But that's a high dose for someone who weighed 29 lbs. The arm hair kind of

diminished, and her eyebrows kind of thinned. Unbelievably and ironically

though, the " baby fur " she was growing on her face from the Prednisone DID

NOT fall out until she got off the Prednisone. What's up with

that???????!!!!!!(she was on 67 mg of Prednisone a day for a while- gained

25 lbs.) She gets a little tummy upset I guess. But, it's not like the

cancer patients you see on tv with their chemo vomiting all night --I don't

think.

Really, don't be scared of it. It has helped . She did take the pills

for awhile, but the docs said she wasn't absorbing it enough, so they

switched her to the injections. NEVER did I think I could stick my BABY, but

you just do what you gotta do. I think that's my new motto. LOL Good luck

with everything.

By the way anyone else on Remicade that has developed antibodies to it and

had to switch to Enbrel - could you please email me and tell me how the side

effects are? has been so sick since Dec and they don't think the

Remicade is working anymore. She doesn't really have any side effects from

the Remicade that I've noticed, and I'm so scared of the injection site

reactions of Enbrel. Also, does it burn going in? HELP! I can't imagine

giving Em a shot every day with Kineret, so I guess her options are limited.

Any advice???

Thanks,

Missy

_____

[Guest guest]

Lori, I've been taking Prednisone and MTX since 1990 and have had no

reactions from either of them until recently when I tried to wean off the

Prednisone. My tongue had been swelling, and last year I found out from this

site that my problem was likely not enough Folic Acid. As I cut down on

Pred, pains I didn't have before started making it's presence known. The

Sciatic nerve was apparently inflamed and was causing a lot of pain and

other sensations, so I went back up on Pred and the problem diminished

again.For now, I love Prednisone!

Dennis

RE: [ ] Re: methotrexate/To from Missy

> Hi Missy,

>

>

>

> I read the following and I'm wondering how long your was on Remicade

> before it stopped working for her. Also, how long did she take high doses

> of Prednisone? My daughter (also ) has been on 40 mg since 2/27.

> She

> has gained 22 lbs so far and I have to say for a girl who is almost 13,

> this

> is a very bad thing. We have tried several times to reduce the dosage,

> but

> every time she gets down to 30 mg, she is in excruciating pain. In fact,

> today I brought her back up to 40 mg until we see the rheumatologist again

> Monday. She has had three weekly doses of Humira so far and so far no

> positive results, but that could be because I tried to reduce the

> Prednisone

> too soon. I hate Prednisone and really want her off it. I think the

> doctor

> is going to want to start MTX soon and I hope that will help with the

> weaning off the Prednisone. Does anyone know if you can take Prednisone

> and

> MTX at the same time?

>

>

>

> From what I know of Enbrel, the injection doesn't hurt. If you're already

> giving MTX injections, you should have no problems with it.

>

>

>

> Lori

[Guest guest]

Hi Lori,

You can absolutely take Prednisone and MTX at the same time. has been on

MTX for four years, and Prednisone off and on for four years. She was on high

doses for almost a year!! She has osteoporosis from it and they said she

wouldn't grow any taller while she was on it, but amazingly she did. Yes, the

weight gain is almost the worst side effect of the Prednisone for Em, mostly

because she can't move all her body weight sufficiently. All the other kids are

crossing the monkey bars, and she can barely hold her weight just by hanging on

them. When she was three she stopped walking for almost a year because the extra

25 pounds on her originally 29 pound frame just stressed her body too much. It

was awful, her back hurt, her feet were killing her and she wouldn't wear ANY

shoes whatsoever. She said any of them hurt her feet. I tried tennis shoes that

were a size bigger, and we eventually went to soft fluffy slippers.

Does your get fevers as well as the pain?? What do you give her for

pain. Sorry if I'm being nosey. Just wanted to know what all the options are.

has already been on Naprosyn, Vioxx (gone now), Some other one I can't

remember, and a steady supply of Motrin.

Can you tell me what Humira is? Is it an IL-1 inhibitor or a TNF inhibitor?

Oh, has been on Remicade for four years and I'm not convinced it's not

working for her yet. She is having pain again since November when she got

pneumonia. (I guess it turned her immune system into overdrive.) She really

did have two good years without any pain meds. That DAMNED pneumonia. While she

was on the Prednisone she had strep throat 7 times in a year and countless

bladder infections. Is Humira a shot?

Oh, gotta go for now, Thanks,

Missy

Lori Maynard <lorimaynard@...> wrote:

Hi Missy,

I read the following and I'm wondering how long your was on Remicade

before it stopped working for her. Also, how long did she take high doses

of Prednisone? My daughter (also ) has been on 40 mg since 2/27. She

has gained 22 lbs so far and I have to say for a girl who is almost 13, this

is a very bad thing. We have tried several times to reduce the dosage, but

every time she gets down to 30 mg, she is in excruciating pain. In fact,

today I brought her back up to 40 mg until we see the rheumatologist again

Monday. She has had three weekly doses of Humira so far and so far no

positive results, but that could be because I tried to reduce the Prednisone

too soon. I hate Prednisone and really want her off it. I think the doctor

is going to want to start MTX soon and I hope that will help with the

weaning off the Prednisone. Does anyone know if you can take Prednisone and

MTX at the same time?

From what I know of Enbrel, the injection doesn't hurt. If you're already

giving MTX injections, you should have no problems with it.

Lori

_____

From: [mailto: ] On

Behalf Of MELISSA CRIGLER

Sent: Thursday, April 20, 2006 6:04 PM

Subject: Re: [ ] Re: methotrexate/To from Missy

Hi ,

My daughter, , is six and has been on MTX for four years now. She

started out when she was two taking 25 mg. of Methotrexate Injections once a

week. She did have some of her hair fall out. More like a lot of thinning.

But that's a high dose for someone who weighed 29 lbs. The arm hair kind of

diminished, and her eyebrows kind of thinned. Unbelievably and ironically

though, the " baby fur " she was growing on her face from the Prednisone DID

NOT fall out until she got off the Prednisone. What's up with

that???????!!!!!!(she was on 67 mg of Prednisone a day for a while- gained

25 lbs.) She gets a little tummy upset I guess. But, it's not like the

cancer patients you see on tv with their chemo vomiting all night --I don't

think.

Really, don't be scared of it. It has helped . She did take the pills

for awhile, but the docs said she wasn't absorbing it enough, so they

switched her to the injections. NEVER did I think I could stick my BABY, but

you just do what you gotta do. I think that's my new motto. LOL Good luck

with everything.

By the way anyone else on Remicade that has developed antibodies to it and

had to switch to Enbrel - could you please email me and tell me how the side

effects are? has been so sick since Dec and they don't think the

Remicade is working anymore. She doesn't really have any side effects from

the Remicade that I've noticed, and I'm so scared of the injection site

reactions of Enbrel. Also, does it burn going in? HELP! I can't imagine

giving Em a shot every day with Kineret, so I guess her options are limited.

Any advice???

Thanks,

Missy

_____

[Guest guest]

Hi Missy,

doesn't get fevers. She is in a LOT of pain however, especially in

her back, hands, wrists, knees and feet. Today she has been having a lot of

trouble walking up the stairs in our house.

She is on Lodine which is an NSAID for swelling and pain. It isn't helping.

I also give her Tylenol, but pain management is one of the things I really

have to talk to our doctor about. She is on 40 mg per day of Prednisone and

she is on weekly shots of Humira. Humira is a TNF inhibitor. I don't know

if it is working well or if I sabotaged it by starting to wean her off

Prednisone shortly after her first dose. I have a feeling my doctor is

going to say it is the latter. I had her down to 30 mg Prednisone, but the

pain was so bad she could hardly walk, so today I increased her back up to

40 mg until we see the doctor Monday.

Humira is given by sub-coetaneous injection usually once every two weeks,

but in our case, he prescribed once per week. The medicine itself REALLY

burns going in, so it is usually not prescribed in very young children where

pain is a huge factor. In those cases, Enbrel would be prescribed either

once per week, or 2x per week. I believe Enbrel is also sub-coetaneous.

Is your able to go to school, or does she miss a lot because of her

illness? When you say she was not on meds for 2 years, did you mean just

pain meds, but that she was still taking MTX and Remicade? How often do you

have to take her for Remicade infusions? Has she ever gone into complete

remission?

Are you happy with your rheumatologist?

Lori

_____

[Guest guest]

Hi Lori,

gets high fevers and the characteristic rash of Systemic JRA. My Em

also scoots down the steps on her rear if her hips and legs hurt too much. Right

now Em is on 3 MLs of Prednisone. Which, I think is just 12 mg. She has NEVER

been off meds completely. She's always been on MTX and Remicade. She was off

steroids for 2 years with no a lot of flares/symptoms. She's never been in

remission and the docs said she may never bee completely off meds. Methotrexate

(MTX) is sub-q right now for Em every Friday. I use LMX-5 numbing cream on her

leg before I give it, but she says it still burns going in. HUMIRA would NOT be

an option if you say it burns a lot. Lori, she starts on Wednesday saying, " I

don't want the weekend to come, this week is going to fast, I hate Fridays

because I have to get my shot. " How sad is that??!! A kid dreading the weekend.

If the docs would let me I'd change the day but right now I don't want to change

anything I guess with her flaring.

She does miss some school. She's had to go into the hospital a few times, and

when she gets her Remicade infusion she misses all day. (That's once a month).

I do like her Rheumatologist. He's really nice and the nurses are too. You

know, I'm sure, that you end up dealing with the nurses as much or more than the

actual doctor. We go to St. Louis Children's Hospital and they really are

GREAT!!! She has to go to an opthamologist twice a year to make sure the

Prednisone hasn't given her cataracts or glaucoma. And to make sure the JRA

hasn't given her uveitis. (eye infection I think is what that is). I got her

nurse to write an excuse for her to be late when she's not feeling well in the

a.m. If she's limping but can walk and has less than 100.5 fever I take her in

the a.m. after she's had motrin. Because by the time she's been there for an

hour she's much better. If I always kept her home, it would just be too much

school missed. Her teacher is wonderful, it's a small school (I went there and

had the same teacher) LOL The church and school both know about her because

they helped sponsor her Arthritis Walk last year. If Em

feels bad right when she gets there, she is allowed to put her head down, and

doesn't have to sit in a circle on the floor during story time. She gets to move

a chair over. (A lot of times, especially in the a.m. she can't actually get up

off the floor, and I think it would be embarrassing for the teacher to help her

up.) Although the teacher had to carry her up to chapel and choir (that's two

flights of steps). And, as I said this teacher is rather older. They are great

there. I just feel so badly that she's gained so much weight. She can't fit into

any of her favorite clothes, but tries really hard to. She wants to wear shirts

that are her favorite but look really bad being so tight. I try to tell her that

it's too hot for it or cold for it so she'll change. I just don't want anyone to

make fun of her. Does your get any trouble at school from teasing and what

not? God don't you wish we could just take it away from them and have us just

deal with it ourselves?????

I get soooo frustrated. Especially at the park when she just can't keep up with

the other kids. Well, gotta go pick her up and her sister is 8 from school.

It's nice to meet you, someone with another daughter dealing with the same

things as mine.

Missy

Lori Maynard <lorimaynard@...> wrote:

Hi Missy,

doesn't get fevers. She is in a LOT of pain however, especially in

her back, hands, wrists, knees and feet. Today she has been having a lot of

trouble walking up the stairs in our house.

She is on Lodine which is an NSAID for swelling and pain. It isn't helping.

I also give her Tylenol, but pain management is one of the things I really

have to talk to our doctor about. She is on 40 mg per day of Prednisone and

she is on weekly shots of Humira. Humira is a TNF inhibitor. I don't know

if it is working well or if I sabotaged it by starting to wean her off

Prednisone shortly after her first dose. I have a feeling my doctor is

going to say it is the latter. I had her down to 30 mg Prednisone, but the

pain was so bad she could hardly walk, so today I increased her back up to

40 mg until we see the doctor Monday.

Humira is given by sub-coetaneous injection usually once every two weeks,

but in our case, he prescribed once per week. The medicine itself REALLY

burns going in, so it is usually not prescribed in very young children where

pain is a huge factor. In those cases, Enbrel would be prescribed either

once per week, or 2x per week. I believe Enbrel is also sub-coetaneous.

Is your able to go to school, or does she miss a lot because of her

illness? When you say she was not on meds for 2 years, did you mean just

pain meds, but that she was still taking MTX and Remicade? How often do you

have to take her for Remicade infusions? Has she ever gone into complete

remission?

Are you happy with your rheumatologist?

Lori

_____

[Guest guest]

Yes, you can. When I was started on mtx, I was also kept on prednisone

to bridge the gap until the mtx started working.

Sue

On Friday, April 21, 2006, at 09:14 AM, Lori Maynard wrote:

> Does anyone know if you can take Prednisone and

> MTX at the same time?

[Guest guest]

Hi Lori and Missi,

My heart goes out to both of you. My daughter's problem was not pain but

diabetes back in the " dark ages " was difficult. She hated to see morning come

because of painful shots. I know what you are dealing with is worse. The first

year dealing with this her school was wonderful and otherwise she would not have

been able to stay in school. So much has changed since then I'm glad there are

at least some schools that are sensative to the childs need.

And I know you would take it from her if you could. Bless you both.

BVan (Betty)

[Guest guest]

Hi Missy,

My is the oldest of five children (my others are 10, 8, 5 and 2) and

we've always home educated them. This year as she started to get so sick I

realized what a blessing homeschooling really is because otherwise she would

have missed a ton of school. There are days she is too sick to do more than

two or three subjects, and since our rheumatologist is almost 2 hours away

we miss a whole day whenever she has an appointment.

At some point if you feel chatty, I would love it if you could email me off

list to tell me how you have adjusted to having a sick child. I have to

tell you that though my faith has been fairly strong in other areas, this is

really getting me. I have no idea how to even make vacation plans or

anything anymore because I never know how will be feeling. Also,

having lived with for 12 years as a healthy child and seeing her

blossom into a talented and beautiful young lady who has now been blindsided

by this horrible disease has been emotionally difficult for me. It is as

though I am mourning the death of the once vibrant child I had, wondering if

she will ever be able to have hopes and dreams again. I hate to sound

melodramatic, but that's where I am right now. I would really appreciate

any advice you can give about how to deal with the emotions of this.

Lori

_____

From: [mailto: ] On

Behalf Of MELISSA CRIGLER

Sent: Friday, April 21, 2006 3:23 PM

Subject: RE: [ ] Re: methotrexate/To from Missy

Hi Lori,

gets high fevers and the characteristic rash of Systemic JRA. My Em

also scoots down the steps on her rear if her hips and legs hurt too much.

Right now Em is on 3 MLs of Prednisone. Which, I think is just 12 mg. She

has NEVER been off meds completely. She's always been on MTX and Remicade.

She was off steroids for 2 years with no a lot of flares/symptoms. She's

never been in remission and the docs said she may never bee completely off

meds. Methotrexate (MTX) is sub-q right now for Em every Friday. I use

LMX-5 numbing cream on her leg before I give it, but she says it still burns

going in. HUMIRA would NOT be an option if you say it burns a lot. Lori,

she starts on Wednesday saying, " I don't want the weekend to come, this week

is going to fast, I hate Fridays because I have to get my shot. " How sad is

that??!! A kid dreading the weekend. If the docs would let me I'd change the

day but right now I don't want to change anything I guess with her flaring.

She does miss some school. She's had to go into the hospital a few times,

and when she gets her Remicade infusion she misses all day. (That's once a

month).

I do like her Rheumatologist. He's really nice and the nurses are too. You

know, I'm sure, that you end up dealing with the nurses as much or more than

the actual doctor. We go to St. Louis Children's Hospital and they really

are GREAT!!! She has to go to an opthamologist twice a year to make sure the

Prednisone hasn't given her cataracts or glaucoma. And to make sure the JRA

hasn't given her uveitis. (eye infection I think is what that is). I got

her nurse to write an excuse for her to be late when she's not feeling well

in the a.m. If she's limping but can walk and has less than 100.5 fever I

take her in the a.m. after she's had motrin. Because by the time she's been

there for an hour she's much better. If I always kept her home, it would

just be too much school missed. Her teacher is wonderful, it's a small

school (I went there and had the same teacher) LOL The church and school

both know about her because they helped sponsor her Arthritis Walk last

year. If Em

feels bad right when she gets there, she is allowed to put her head down,

and doesn't have to sit in a circle on the floor during story time. She gets

to move a chair over. (A lot of times, especially in the a.m. she can't

actually get up off the floor, and I think it would be embarrassing for the

teacher to help her up.) Although the teacher had to carry her up to chapel

and choir (that's two flights of steps). And, as I said this teacher is

rather older. They are great there. I just feel so badly that she's gained

so much weight. She can't fit into any of her favorite clothes, but tries

really hard to. She wants to wear shirts that are her favorite but look

really bad being so tight. I try to tell her that it's too hot for it or

cold for it so she'll change. I just don't want anyone to make fun of her.

Does your get any trouble at school from teasing and what not? God

don't you wish we could just take it away from them and have us just deal

with it ourselves?????

I get soooo frustrated. Especially at the park when she just can't keep up

with the other kids. Well, gotta go pick her up and her sister is 8 from

school. It's nice to meet you, someone with another daughter dealing with

the same things as mine.

Missy

Lori Maynard <lorimaynard@...> wrote:

Hi Missy,

doesn't get fevers. She is in a LOT of pain however, especially in

her back, hands, wrists, knees and feet. Today she has been having a lot of

trouble walking up the stairs in our house.

She is on Lodine which is an NSAID for swelling and pain. It isn't helping.

I also give her Tylenol, but pain management is one of the things I really

have to talk to our doctor about. She is on 40 mg per day of Prednisone and

she is on weekly shots of Humira. Humira is a TNF inhibitor. I don't know

if it is working well or if I sabotaged it by starting to wean her off

Prednisone shortly after her first dose. I have a feeling my doctor is

going to say it is the latter. I had her down to 30 mg Prednisone, but the

pain was so bad she could hardly walk, so today I increased her back up to

40 mg until we see the doctor Monday.

Humira is given by sub-coetaneous injection usually once every two weeks,

but in our case, he prescribed once per week. The medicine itself REALLY

burns going in, so it is usually not prescribed in very young children where

pain is a huge factor. In those cases, Enbrel would be prescribed either

once per week, or 2x per week. I believe Enbrel is also sub-coetaneous.

Is your able to go to school, or does she miss a lot because of her

illness? When you say she was not on meds for 2 years, did you mean just

pain meds, but that she was still taking MTX and Remicade? How often do you

have to take her for Remicade infusions? Has she ever gone into complete

remission?

Are you happy with your rheumatologist?

Lori

_____