Re: questions about lab results()

[Guest guest]

In a message dated 12/20/04 6:08:52 PM Central Daylight Time,

sonia1md@... writes:

> looked at my window sill this morning as I started to get Aundreas

> morning drugs out for her and couldn't believe all of the vials of

> drugs that we have. Hardly any room left on the sil. :-(

>

> ,

> Please get the meds out of the window sill and in a place with no heat or

> steam,let alone sunlight.Keep them in a dry, cool but room temp place.Basicly

> just someplace that doesn't steam up like a bathroom,window or near the

> stove.The sun and moisture and high temps can effect the drugs potency.

> I am glad to hear the first dose of MTX didn't cause any trouble.What little

> stomache uneasiness should pass after a few doses.

> Hugs

> Becki and 6 systemic

[Guest guest]

Hi Becki,

I knew after I sent that post that I should have clarified window

sill. Its just a ledge in my kitchen. No sunlight, steam or other

worries. Always a good reminder though about proper storage of

medicine. I always try to be so careful about keeping the drugs out

of reach from children, animals etc. Well, the other day I had placed

all of Aundrea's meds on the table for her at breakfast time and she

went to get her glass of water and when she came back two fish oils

were missing and the vitamin was wet. Yep, the dog decided he had

found a tasty treat. I was glad he left the pred and plaquenil

alone.! :-)

Aundrea told me yesterday that she just felt great. She said " I don't

know how to explain it, but I feel so different. Different in a good

way " . I dont know if its just the steroids or if the mtx is already

making a difference. I know its suppose to take awhile, but I have

read in other posts where some benefits were noticed rather quickly.

I hope this was just a strange coincidence, but my husband called me

into the kitchen this morning and pointed to Aundrea's back. It was

absolutely covered with hair all over her shirt. I can't imagine that

this could be caused by the mtx so early and plus its suppose to be a

very RARE side effect. So, it must have just been a fluke.

(drea 9 systemic) -

-- In , Arthurnator@w... wrote:

> In a message dated 12/20/04 6:08:52 PM Central Daylight Time,

> sonia1md@y... writes:

>

>

> > looked at my window sill this morning as I started to get Aundreas

> > morning drugs out for her and couldn't believe all of the vials of

> > drugs that we have. Hardly any room left on the sil. :-(

> >

> > ,

> > Please get the meds out of the window sill and in a place with no

heat or

> > steam,let alone sunlight.Keep them in a dry, cool but room temp

place.Basicly

> > just someplace that doesn't steam up like a bathroom,window or

near the

> > stove.The sun and moisture and high temps can effect the drugs

potency.

> > I am glad to hear the first dose of MTX didn't cause any

trouble.What little

> > stomache uneasiness should pass after a few doses.

> > Hugs

> > Becki and 6 systemic

>

>

>

>

>

[Guest guest]

Hi ,

Most likely it's just the pred kicking back in.Mtx just doesn't work that

quickly,it takes time for it to supress an overactive immune system.Now we do

get

new parents who's kids just started MTX and will post how after just 1 dose

their child is better then a few days later things are bad again.Even when

things are bad there are days that they feel better.

I have heard of some people losing hair on MTX but I wouldn't think it would

happen that quickly.Was Drea wearing a dark colored shirt?Seems like we lose

several hundred hairs every single day.I would just monitor it.The time to be

concerned would be if she ran her fingers through her hair and she had alot of

hairs in her hand or all of a sudden a large amount of hair on the bathroom

floor.

Good luck with the MTX.s kicked back in 2 weeks ago after dose 6.

Hugs

Becki and 6 systemic

[Guest guest]

Hi, . My son was one of those who also had quick results. The only

time he had more problems was when we tried to reduce the dose. Then the

flare hit. Then he grew, so his dose had to be upped. But in general

felt much better after starting the MTX. I hope Aundrea continues

to feel better and you can lose the pred soon. Michele ( 17, pauci

& spondy)

Re: questions about lab results()

Hi Becki,

I knew after I sent that post that I should have clarified window

sill. Its just a ledge in my kitchen. No sunlight, steam or other

worries. Always a good reminder though about proper storage of

medicine. I always try to be so careful about keeping the drugs out

of reach from children, animals etc. Well, the other day I had placed

all of Aundrea's meds on the table for her at breakfast time and she

went to get her glass of water and when she came back two fish oils

were missing and the vitamin was wet. Yep, the dog decided he had

found a tasty treat. I was glad he left the pred and plaquenil

alone.! :-)

Aundrea told me yesterday that she just felt great. She said " I don't

know how to explain it, but I feel so different. Different in a good

way " . I dont know if its just the steroids or if the mtx is already

making a difference. I know its suppose to take awhile, but I have

read in other posts where some benefits were noticed rather quickly.

I hope this was just a strange coincidence, but my husband called me

into the kitchen this morning and pointed to Aundrea's back. It was

absolutely covered with hair all over her shirt. I can't imagine that

this could be caused by the mtx so early and plus its suppose to be a

very RARE side effect. So, it must have just been a fluke.

(drea 9 systemic) -

-- In , Arthurnator@w... wrote:

> In a message dated 12/20/04 6:08:52 PM Central Daylight Time,

> sonia1md@y... writes:

>

>

> > looked at my window sill this morning as I started to get Aundreas

> > morning drugs out for her and couldn't believe all of the vials of

> > drugs that we have. Hardly any room left on the sil. :-(

> >

> > ,

> > Please get the meds out of the window sill and in a place with no

heat or

> > steam,let alone sunlight.Keep them in a dry, cool but room temp

place.Basicly

> > just someplace that doesn't steam up like a bathroom,window or

near the

> > stove.The sun and moisture and high temps can effect the drugs

potency.

> > I am glad to hear the first dose of MTX didn't cause any

trouble.What little

> > stomache uneasiness should pass after a few doses.

> > Hugs

> > Becki and 6 systemic

>

>

>

>

>

[Guest guest]

Hi ,

was a stubborn child but no where near as bad as some.It took 25mg MTX

subq,200mg Plaquenil,900mg Ibuprofen and he was still steroid dependant.Finaly

got Enbrel through the 3 yr safety study up in Cincy and it changed

everything.Stoped the Plaquenil almost immediately,tapered the pred the

Ibuprofen and

then over about 18 months tapered off the MTX.Turned out Enbrel alone couldn't

control everything so 7 weeks ago restarted the MTX at just 7.5mg oraly and

at week 6 it seemed to kick in.Wrists are picture perfect and got his labs back

today and they are perfect also.See the rheumy tomorrow and expect to hear

the words 100%complete control again.

You can actualy go to Google and type in Larson and around # 7 is his

link to the story Cincinnati Childrens did.

I hope Aundrea doesn't have any trouble with the MTX. never did except

in the taper mode we switched to pills and he developed SEVERE gastritis.This

time around I am spliting the dose up over 24 hours and he is fine.I'm also

giving 75mg Zantac with each pill.I prefer the shots but he has some phobia

against the MTX shots,tolerates Enbrel fine and giggles like crazy duiring blood

draws.

Just try and hang in there and taper the pred slowely over the next 6-8

weeks.Honestly though at some point you will have to lower the dose enough to

see

if the MTX is working or if you have to increase the dose.That one was hard for

me because suffered constantly.He started at 7.5mg and only increased

2.5 mg every month or 2 while his steroids were decreased 3mg a week until a

full blown flare.

Enough rambling.Sorry just every now and then I have to go back to the bad

old days to remind me what could be.

Hugs

Becki and 6 systemic

[Guest guest]

Now we do get

> new parents who's kids just started MTX and will post how after

just 1 dose

> their child is better then a few days later things are bad again.

Yup, that was my kiddo. Immediate relief, then a little worse, but

overall much better. Her bad ankle is hardly ever hot any more and

her other joints are better as well.

I do worry about giving her an immuno suppressant, who knows what

could be going on in her body that is not being suppressed. I heard a

doctor on the radio discussing how transplant patients who have to

take imuno suppressants every day for years are more prone to cancer.

He also said if we could cut back to one or two doses a week it would

be better, but they can't. So I'm grateful that she only requires one

dose a week. Hopefully it'll keep doing the trick. Rotten desease...

Annie, who has been battling mice all week. Any tips for me? It's my

first time with mice, now I understand why people who don't like cats

have one anyway!

[Guest guest]

HI Michele,

Its good to hear that some people are having great results with the

MTX with minimal side effects. I go thru periods of thinking we are

getting this flare under control and then I can't help myself but to

go into a panic when I read about MAS and then all the drugs that

are being pulled from the market.

There are so many people praying for Aundrea and I just need to work

on not getting so consumed with fear about what may or may not

happen do to the use of all these drugs.

How long has been on MTX. What other meds is he currently

taking? I am hoping that this MTX kicks as we continue to taper the

pred. It will be so wonderful to get her off steroids again.

God Bless,

> > In a message dated 12/20/04 6:08:52 PM Central Daylight Time,

> > sonia1md@y... writes:

> >

> >

> > > looked at my window sill this morning as I started to get

Aundreas

> > > morning drugs out for her and couldn't believe all of the

vials of

> > > drugs that we have. Hardly any room left on the sil. :-(

> > >

> > > ,

> > > Please get the meds out of the window sill and in a place with

no

> heat or

> > > steam,let alone sunlight.Keep them in a dry, cool but room

temp

> place.Basicly

> > > just someplace that doesn't steam up like a bathroom,window or

> near the

> > > stove.The sun and moisture and high temps can effect the drugs

> potency.

> > > I am glad to hear the first dose of MTX didn't cause any

> trouble.What little

> > > stomache uneasiness should pass after a few doses.

> > > Hugs

> > > Becki and 6 systemic

> >

> >

> >

> >

> >

[Guest guest]

Hi Becki

I am sure the hair loss just has to be a coincidence. She was

wearing a dark shirt but really, I have never seen so much hair come

out all at once. My husband and I literaly had handfuls that we

gathered up to throw away.

I will keep an eye on it of course but I am believing that it had to

be just a one time thing.

Did start having problems again after dose 6 or was that when

things improved for him?

(drea 9 systemic)

- In , Arthurnator@w... wrote:

> Hi ,

> Most likely it's just the pred kicking back in.Mtx just doesn't

work that

> quickly,it takes time for it to supress an overactive immune

system.Now we do get

> new parents who's kids just started MTX and will post how after

just 1 dose

> their child is better then a few days later things are bad

again.Even when

> things are bad there are days that they feel better.

> I have heard of some people losing hair on MTX but I wouldn't

think it would

> happen that quickly.Was Drea wearing a dark colored shirt?Seems

like we lose

> several hundred hairs every single day.I would just monitor it.The

time to be

> concerned would be if she ran her fingers through her hair and she

had alot of

> hairs in her hand or all of a sudden a large amount of hair on the

bathroom

> floor.

> Good luck with the MTX.s kicked back in 2 weeks ago after

dose 6.

> Hugs

> Becki and 6 systemic

>

>

>

[Guest guest]

When n flares, her hair just falls out.

Re: questions about lab results()

>

>

> Hi Becki

>

> I am sure the hair loss just has to be a coincidence. She was

> wearing a dark shirt but really, I have never seen so much hair come

> out all at once. My husband and I literaly had handfuls that we

> gathered up to throw away.

>

> I will keep an eye on it of course but I am believing that it had to

> be just a one time thing.

>

> Did start having problems again after dose 6 or was that when

> things improved for him?

>

> (drea 9 systemic)

> - In , Arthurnator@w... wrote:

> > Hi ,

> > Most likely it's just the pred kicking back in.Mtx just doesn't

> work that

> > quickly,it takes time for it to supress an overactive immune

> system.Now we do get

> > new parents who's kids just started MTX and will post how after

> just 1 dose

> > their child is better then a few days later things are bad

> again.Even when

> > things are bad there are days that they feel better.

> > I have heard of some people losing hair on MTX but I wouldn't

> think it would

> > happen that quickly.Was Drea wearing a dark colored shirt?Seems

> like we lose

> > several hundred hairs every single day.I would just monitor it.The

> time to be

> > concerned would be if she ran her fingers through her hair and she

> had alot of

> > hairs in her hand or all of a sudden a large amount of hair on the

> bathroom

> > floor.

> > Good luck with the MTX.s kicked back in 2 weeks ago after

> dose 6.

> > Hugs

> > Becki and 6 systemic

> >

> >

> >

[Guest guest]

I have a little cousin who is 7 that had a heart transplant soon after he

was born. He used to take Cyclosplorine (sp?) and just recently was

switched to something different but I'm not sure what it is. He has to take

the immuno suppressant 2 times a day every day. I think it is a pretty high

dose too. Just the other week he had to have surgery on his stomach.a small

part of his small intestines had to be removed and they originally thought

it was cancer and actually called his parents and told them it was cancer

but thanks to all the prayers when he had to go for further tests

miraculously it was NOT cancer! What a relief and a BIG scare!!!! He was

actually found to have the Epstin Barr Virus which is pretty dangerous for

him since her pretty much has NO immune system. They put him on medicine

and had to go back to the doc Monday and is doing great!!!!!!

Re: questions about lab results()

Now we do get

> new parents who's kids just started MTX and will post how after

just 1 dose

> their child is better then a few days later things are bad again.

Yup, that was my kiddo. Immediate relief, then a little worse, but

overall much better. Her bad ankle is hardly ever hot any more and

her other joints are better as well.

I do worry about giving her an immuno suppressant, who knows what

could be going on in her body that is not being suppressed. I heard a

doctor on the radio discussing how transplant patients who have to

take imuno suppressants every day for years are more prone to cancer.

He also said if we could cut back to one or two doses a week it would

be better, but they can't. So I'm grateful that she only requires one

dose a week. Hopefully it'll keep doing the trick. Rotten desease...

Annie, who has been battling mice all week. Any tips for me? It's my

first time with mice, now I understand why people who don't like cats

have one anyway!

[Guest guest]

Hi ,

Well that would make alot more sense as to what was going on. I will

just have to kind of watch for hair loss and see if we have the same

problem during the next flare. How is n doing? Is she still

getting the injections or have they added another drug? Are her

joints swollen? What kind of side effects did she deal with when

taking the mtx? I bet she is nervous to take that again if its what

her doc ends up suggesting.-

It always amazes me how similar Aundrea is to n with some of

their different symptoms. I have seen your posts about the tanning

bed. I also have severe excema on my upper arms and occasionally on

my thighs. Its usually worse in the winter and I have found that

tanning helps with it. I always cover my face with a towel to try and

prevent sundamage to my face. (wrinkles :-()

(drea 9 systemic)

-- In , " WILLIAM PRICE " <bc.price@c...>

wrote:

> When n flares, her hair just falls out.

> Re: questions about lab results()

>

>

> >

> >

> > Hi Becki

> >

> > I am sure the hair loss just has to be a coincidence. She was

> > wearing a dark shirt but really, I have never seen so much hair

come

> > out all at once. My husband and I literaly had handfuls that we

> > gathered up to throw away.

> >

> > I will keep an eye on it of course but I am believing that it had

to

> > be just a one time thing.

> >

> > Did start having problems again after dose 6 or was that

when

> > things improved for him?

> >

> > (drea 9 systemic)

> > - In , Arthurnator@w... wrote:

> > > Hi ,

> > > Most likely it's just the pred kicking back in.Mtx just doesn't

> > work that

> > > quickly,it takes time for it to supress an overactive immune

> > system.Now we do get

> > > new parents who's kids just started MTX and will post how after

> > just 1 dose

> > > their child is better then a few days later things are bad

> > again.Even when

> > > things are bad there are days that they feel better.

> > > I have heard of some people losing hair on MTX but I wouldn't

> > think it would

> > > happen that quickly.Was Drea wearing a dark colored shirt?Seems

> > like we lose

> > > several hundred hairs every single day.I would just monitor

it.The

> > time to be

> > > concerned would be if she ran her fingers through her hair and

she

> > had alot of

> > > hairs in her hand or all of a sudden a large amount of hair on

the

> > bathroom

> > > floor.

> > > Good luck with the MTX.s kicked back in 2 weeks ago after

> > dose 6.

> > > Hugs

> > > Becki and 6 systemic

> > >

> > >

> > >

[Guest guest]

n gets her injections tomorrow. I think she is really looking forward

to it, for she knows the relief that it can bring. She has quite a few

swollen joints, so we will have to see what medication changes are coming.

Yes, I know tanning is bad, but n really suffered with the exzema. So

this winter she has no sores, no itching, and no exzema. After years of

creams and steroids with no relief, we finally have relief. It doesn't take

much tanning to accomplish it either. and n

Re: questions about lab results()

> >

> >

> > >

> > >

> > > Hi Becki

> > >

> > > I am sure the hair loss just has to be a coincidence. She was

> > > wearing a dark shirt but really, I have never seen so much hair

> come

> > > out all at once. My husband and I literaly had handfuls that we

> > > gathered up to throw away.

> > >

> > > I will keep an eye on it of course but I am believing that it had

> to

> > > be just a one time thing.

> > >

> > > Did start having problems again after dose 6 or was that

> when

> > > things improved for him?

> > >

> > > (drea 9 systemic)

> > > - In , Arthurnator@w... wrote:

> > > > Hi ,

> > > > Most likely it's just the pred kicking back in.Mtx just doesn't

> > > work that

> > > > quickly,it takes time for it to supress an overactive immune

> > > system.Now we do get

> > > > new parents who's kids just started MTX and will post how after

> > > just 1 dose

> > > > their child is better then a few days later things are bad

> > > again.Even when

> > > > things are bad there are days that they feel better.

> > > > I have heard of some people losing hair on MTX but I wouldn't

> > > think it would

> > > > happen that quickly.Was Drea wearing a dark colored shirt?Seems

> > > like we lose

> > > > several hundred hairs every single day.I would just monitor

> it.The

> > > time to be

> > > > concerned would be if she ran her fingers through her hair and

> she

> > > had alot of

> > > > hairs in her hand or all of a sudden a large amount of hair on

> the

> > > bathroom

> > > > floor.

> > > > Good luck with the MTX.s kicked back in 2 weeks ago after

> > > dose 6.

> > > > Hugs

> > > > Becki and 6 systemic

> > > >

> > > >

> > > >

[Guest guest]

Hi, . started the mtx in Dec of 2001, so 3 (!) years now. He

began on 10 mgs a week and is now on 12.5 mgs, due to his growth (he is

now 6'3 " ). He was on sulfasalazine before this, up to 3000 mgs a day,

and he took 800 mgs of Celebrex every day. Plus he takes Zyrtec for

allergies and has taken flovent for his asthma. Right now, he takes the

mtx once a week, and only 200 mgs Celebrex as needed. He has needed it

occasionally because he works outside in the cold. He needs his Zyrtec

in spring and fall, and his asthma has not acted up in a long time. I

hope he can outgrow that. He has taken steroids for his asthma in the

past - very short doses thank God, but I hated that then. I feel so for

the kids on it for long stretches. I hope is doing well today, and

you as well. Hugs, Michele ( 17, pauci & spondy)

Re: questions about lab results()

HI Michele,

Its good to hear that some people are having great results with the

MTX with minimal side effects. I go thru periods of thinking we are

getting this flare under control and then I can't help myself but to

go into a panic when I read about MAS and then all the drugs that

are being pulled from the market.

There are so many people praying for Aundrea and I just need to work

on not getting so consumed with fear about what may or may not

happen do to the use of all these drugs.

How long has been on MTX. What other meds is he currently

taking? I am hoping that this MTX kicks as we continue to taper the

pred. It will be so wonderful to get her off steroids again.

God Bless,

> > In a message dated 12/20/04 6:08:52 PM Central Daylight Time,

> > sonia1md@y... writes:

> >

> >

> > > looked at my window sill this morning as I started to get

Aundreas

> > > morning drugs out for her and couldn't believe all of the

vials of

> > > drugs that we have. Hardly any room left on the sil. :-(

> > >

> > > ,

> > > Please get the meds out of the window sill and in a place with

no

> heat or

> > > steam,let alone sunlight.Keep them in a dry, cool but room

temp

> place.Basicly

> > > just someplace that doesn't steam up like a bathroom,window or

> near the

> > > stove.The sun and moisture and high temps can effect the drugs

> potency.

> > > I am glad to hear the first dose of MTX didn't cause any

> trouble.What little

> > > stomache uneasiness should pass after a few doses.

> > > Hugs

> > > Becki and 6 systemic

> >

> >

> >

> >

> >

[Guest guest]

Hi ,

How wonderful that n is finally over some of the skin problems.

You certainly tried everything known to man to help her with that.

And to think tanning is doing the trick and she probably looks

awesome too!

I hope the injections went well for her today and that she can get

some could pain relief in those stubborn joints.

God Bless,

(drea 9 systemic)-

-- In , " WILLIAM PRICE " <bc.price@c...>

wrote:

> n gets her injections tomorrow. I think she is really looking

forward

> to it, for she knows the relief that it can bring. She has quite a

few

> swollen joints, so we will have to see what medication changes are

coming.

> Yes, I know tanning is bad, but n really suffered with the

exzema. So

> this winter she has no sores, no itching, and no exzema. After

years of

> creams and steroids with no relief, we finally have relief. It

doesn't take

> much tanning to accomplish it either. and n

> Re: questions about lab results()

> > >

> > >

> > > >

> > > >

> > > > Hi Becki

> > > >

> > > > I am sure the hair loss just has to be a coincidence. She was

> > > > wearing a dark shirt but really, I have never seen so much

hair

> > come

> > > > out all at once. My husband and I literaly had handfuls that

we

> > > > gathered up to throw away.

> > > >

> > > > I will keep an eye on it of course but I am believing that it

had

> > to

> > > > be just a one time thing.

> > > >

> > > > Did start having problems again after dose 6 or was that

> > when

> > > > things improved for him?

> > > >

> > > > (drea 9 systemic)

> > > > - In , Arthurnator@w... wrote:

> > > > > Hi ,

> > > > > Most likely it's just the pred kicking back in.Mtx just

doesn't

> > > > work that

> > > > > quickly,it takes time for it to supress an overactive immune

> > > > system.Now we do get

> > > > > new parents who's kids just started MTX and will post how

after

> > > > just 1 dose

> > > > > their child is better then a few days later things are bad

> > > > again.Even when

> > > > > things are bad there are days that they feel better.

> > > > > I have heard of some people losing hair on MTX but I

wouldn't

> > > > think it would

> > > > > happen that quickly.Was Drea wearing a dark colored

shirt?Seems

> > > > like we lose

> > > > > several hundred hairs every single day.I would just monitor

> > it.The

> > > > time to be

> > > > > concerned would be if she ran her fingers through her hair

and

> > she

> > > > had alot of

> > > > > hairs in her hand or all of a sudden a large amount of hair

on

> > the

> > > > bathroom

> > > > > floor.

> > > > > Good luck with the MTX.s kicked back in 2 weeks ago

after

> > > > dose 6.

> > > > > Hugs

> > > > > Becki and 6 systemic

> > > > >

> > > > >

> > > > >