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, Where in MN are you from? I'm in Mankato.... I all of a sudden don't

feel so alone here in MN! Hang in there! I've been fighting this since I

was 21 and I'm about to turn 30 in a couple of weeks and I feel like its

accelerated so quickly I don't know what to do. I'd been able to keep it at

bay, but that's not so any longer. I've just changed jobs that has

WONDERFUL insurance so I'm going to make my name known at the doctors office

real soon! Take care!

Kim

>From: sdcreate@...

>Reply- egroups

> egroups

>Subject: Re: [ ] MTX question

>Date: Sat, 11 Nov 2000 00:34:58 EST

>

>Hi,

>I am new here too and I was wondering what MTX is?

>

>Thanks,

> D in Minnesota

>

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  • 1 year later...
Guest guest

Hi Diane,

It was good to read that hasn't been having anymore morning stiffness ...

but not so good to hear that she's been complaining of more pain : ( Could it

be that she's feeling so much better that she's able to be more active now than

in the past and maybe the pain is stemming from over-use of joints or muscles or

tendons that haven't been used to getting such a work-out? Maybe. I hope your

family's stomache virus is better by now, too.

Aloha, Georgina

----- Original Message -----

From: dbornscheu@...

I'm sure Riley's doctor is right that her cough is just a normal viral thing.

's been complaining of a stomach ache which I of course assume must

mean she has gastrointestinal bleeding from her NSAIDs. LOL. Then when my

husband and I both got it too, I decided it could possibly be something

normal. :) I guess we have to be paranoid. 's otherwise doing well.

Since the mtx kicked in, she's been free of morning stiffness. She has been

complaining of pain more often than she used to, so I'm not quite sure what

that means. I hope the mtx continues to work. It really has made a

difference. Hope Riley gets over her cough soon and her mtx kicks in too.

Have a great day!

Diane (, 3, pauci)

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  • 2 months later...

Hi ~

When I was on the MTX, I think it took at least a few weeks to start working,

possibly longer. I remember that I had to stay on my other medications for a

while~ maybe 1 or 2 months? But, I will say that once it kicked in it was like

a miracle. My only problem with it is that it always made me sick to my

stomach. After about 3 (?) years on the MTX, I've gone onto remission. I still

have some problem joints, and they seem to be getting slowly worse again, but

for the moment I'm off all meds. But, back to the main point, I think you need

longer than 2 weeks to see if it is working. good luck!!! julia :)

" A. Matera " wrote:Hello Friends,

I was just wondering for those of you on MTX..how long has it taken to get

into your system? I have only been on it for a little over two weeks, and I

am sure that I am rushing it, but I feel absolutely nothing at all..no

changes.

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

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Sue,

No, you aren't " rushing it " .....you are simply hoping that this will be a

" miracle drug " for you. Hey, it's worked for some. Unfortunately, I was one of

those who didn't benefit from it. Actually, the only " benefit " I got from it

was severe nausea & vomiting and hair loss. I was on it quite some time ago

(seems like eons!), so I don't remember exactly how long I took it before my doc

pulled it from my list of " things to do... " Maybe you are one of us who DON'T

have any luck with it??? Question the doc on it.....

love,

Chris

greywolf70@...

MTX question

Hello Friends,

I was just wondering for those of you on MTX..how long has it taken to get

into your system? I have only been on it for a little over two weeks, and I

am sure that I am rushing it, but I feel absolutely nothing at all..no

changes. I am taking 4 once a day, on Saturdays. I am probably trying to

rush the whole process I guess...a little too impatient, but I think I am

like this, because I have heard nothing, but " good " about this drug, so I am

anxious. I was weaning off the prednisone also, but I got down to 10mg

again and just started having problems again, so I stayed at 10 instead of

weaning. My goal and my rheumy's goal was to get off of the prednisone, but

I don't see that happening for a while. I am sure that everyone here takes

a different dose of MTX, but I was wondering what your doses are, and have

you had to go up on the dosage? I have been having very bad ankle problems

for the first time with this disease, and I know that there is definitely

something wrong, so I am anxious to talk to my Rheumy next week. My right

one is VERY sore and there is a lump on the inside of it. At times, I am

really having a problem walking. I guess I was expecting the MTX to work

magic on my ankle....kind of stupid thinking huh? Thank you for listening..

much love and hugs to everyone as always.

Love,Sue #2

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not stupid at all. MTXhelps.. I've had some big nasty lumps on shins

and forearms. Then they were gone. I can't get below 7mg of pred--- after

5 years. So I take it and lots of supplements. For me the cocktail is pred

mtx and Arava. Hang in there.

MTX question

> Hello Friends,

> I was just wondering for those of you on MTX..how long has it taken to get

> into your system? I have only been on it for a little over two weeks, and

I

> am sure that I am rushing it, but I feel absolutely nothing at all..no

> changes. I am taking 4 once a day, on Saturdays. I am probably trying to

> rush the whole process I guess...a little too impatient, but I think I am

> like this, because I have heard nothing, but " good " about this drug, so I

am

> anxious. I was weaning off the prednisone also, but I got down to 10mg

> again and just started having problems again, so I stayed at 10 instead of

> weaning. My goal and my rheumy's goal was to get off of the prednisone,

but

> I don't see that happening for a while. I am sure that everyone here

takes

> a different dose of MTX, but I was wondering what your doses are, and have

> you had to go up on the dosage? I have been having very bad ankle

problems

> for the first time with this disease, and I know that there is definitely

> something wrong, so I am anxious to talk to my Rheumy next week. My right

> one is VERY sore and there is a lump on the inside of it. At times, I am

> really having a problem walking. I guess I was expecting the MTX to work

> magic on my ankle....kind of stupid thinking huh? Thank you for

listening..

> much love and hugs to everyone as always.

> Love,Sue #2

>

>

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Hey, hey & yippy skippy, the party is on at 's tongight. And I

know you have the room ! But on the stipulation you don't go

around cleaning up first because there will be plenty of that to do

before we leave. Let's see, I can pick up quite a few in this side

of the country and we should be there around midninght! We shall

bring all the fun Sus, Love you and see ya soon !!! ;0)

wrote: or I am just over-stressed,tired, sore and in a bad

mood tonight and

> feel like complaining!

> Love, Sue #2

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I was just wondering for those of you on MTX..how long has it taken

to get

into your system?

Hi Sue#2,

I am taking the MTX tablets, which are 2.5mg each. I started taking

6 tablets for a total of 15mg. I took that for something like 3

maybe 4 weeks, then was increased to 7 tablets for a total of

17.5mg. I still had some swelling and fever going on. I was told at

the start of the MTX that it would be 2 maybe 3 weeks before a notice

of any improvement. That was a very correct estimate of time and

also before I really began to notice improvement. I split up the

dose on Sundays, real scientifically, 4 in da morning and 3 sometime

later in the afternoon. I have had no troubles or bad experiances

with the MTX so far and have been on it coming up six months. Was at

time started MTX on 30mg of predisone daily. Dropped to 25, then

22.5, to 20, on down to 17.5 yada yada yada. Am down to 8mg as of

yesterday and attempting to decrease 1mg every two weeks, wish me

luck. I sometimes think I feel a little stiffness and sorness in

fingers and wrists. I have taken so very few pain pills in the last

four months that I have a cherished stockpile of hydrocodone pills.

I pretty much got by taking tylenol arthritus strength when the

little pains happened. Was using up to six of those a day, and now

mostly take ONE before I crawl in the crib.

The stuff seems to be working for me, knock on wood. Would be nice

to get off the predisone and see if my chipmunk cheeks will go away.

I wish you the best of luck with the MTX my Sweet Sue.

Dan

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Alright!!! This sounds like a real good one!

I'll bring a bunch of those gel pens, and

Traci or Caroline are you bringing the toilet

paper???Or I can pick up a 24 pak on the

way. Everyone is invited aren't they Sue??

I'm bringing my own pot, because it's still

handy from yesterday...Melt are you coming

along then?? Please do!!

see you soon!!!!! Tricia

-- Re: MTX question

Hey, hey & yippy skippy, the party is on at 's tongight. And I

know you have the room ! But on the stipulation you don't go

around cleaning up first because there will be plenty of that to do

before we leave. Let's see, I can pick up quite a few in this side

of the country and we should be there around midninght! We shall

bring all the fun Sus, Love you and see ya soon !!! ;0)

wrote: or I am just over-stressed,tired, sore and in a bad

mood tonight and

> feel like complaining!

> Love, Sue #2

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Thank you Ron. Yes, I am definitely not willing to give up. It is way too

soon. I wish that it didn't take so long to find the right cocktail though.

Why does it have to take so long? URGHH! Just tired of waiting after two

long years I guess. Getting frustrated and anxious and just wanting some

relief, or I am just over-stressed,tired, sore and in a bad mood tonight and

feel like complaining!

Love, Sue #2

-- Re: MTX question

not stupid at all. MTXhelps.. I've had some big nasty lumps on shins

and forearms. Then they were gone. I can't get below 7mg of pred--- after

5 years. So I take it and lots of supplements. For me the cocktail is pred

mtx and Arava. Hang in there.

MTX question

> Hello Friends,

> I was just wondering for those of you on MTX..how long has it taken to get

> into your system? I have only been on it for a little over two weeks, and

I

> am sure that I am rushing it, but I feel absolutely nothing at all..no

> changes. I am taking 4 once a day, on Saturdays. I am probably trying to

> rush the whole process I guess...a little too impatient, but I think I am

> like this, because I have heard nothing, but " good " about this drug, so I

am

> anxious. I was weaning off the prednisone also, but I got down to 10mg

> again and just started having problems again, so I stayed at 10 instead of

> weaning. My goal and my rheumy's goal was to get off of the prednisone,

but

> I don't see that happening for a while. I am sure that everyone here

takes

> a different dose of MTX, but I was wondering what your doses are, and have

> you had to go up on the dosage? I have been having very bad ankle

problems

> for the first time with this disease, and I know that there is definitely

> something wrong, so I am anxious to talk to my Rheumy next week. My right

> one is VERY sore and there is a lump on the inside of it. At times, I am

> really having a problem walking. I guess I was expecting the MTX to work

> magic on my ankle....kind of stupid thinking huh? Thank you for

listening..

> much love and hugs to everyone as always.

> Love,Sue #2

>

>

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Hi

I'm also taking MTX at the same does you are 4 pills once a week,been on it

for 2 wks and haven't felt anything.

So far I'm feeling good but also weaning the prednisone.Its still at a high

dose, I just droped it to 35mg today.

Waiting to see what the blood test reads when I go this week for it......

thats where the truth comes out.

Good Luck

Fred G.

MTX question

Hello Friends,

I was just wondering for those of you on MTX..how long has it taken to get

into your system? I have only been on it for a little over two weeks, and I

am sure that I am rushing it, but I feel absolutely nothing at all..no

changes. I am taking 4 once a day, on Saturdays. I am probably trying to

rush the whole process I guess...a little too impatient, but I think I am

like this, because I have heard nothing, but " good " about this drug, so I am

anxious. I was weaning off the prednisone also, but I got down to 10mg

again and just started having problems again, so I stayed at 10 instead of

weaning. My goal and my rheumy's goal was to get off of the prednisone, but

I don't see that happening for a while. I am sure that everyone here takes

a different dose of MTX, but I was wondering what your doses are, and have

you had to go up on the dosage? I have been having very bad ankle problems

for the first time with this disease, and I know that there is definitely

something wrong, so I am anxious to talk to my Rheumy next week. My right

one is VERY sore and there is a lump on the inside of it. At times, I am

really having a problem walking. I guess I was expecting the MTX to work

magic on my ankle....kind of stupid thinking huh? Thank you for listening..

much love and hugs to everyone as always.

Love,Sue #2

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Sue

I have taken MTX - 15mg every Sat - for 2 yrs. I never realized it was doing

me any good until they tried to take me off of it. They took me off once in

May of 2001 and a week or so later the joints in my lower back locked up. I

tried to come off of it recently and have been in more pain than ever. So I

guess it does " some " good for me although it's so gradual I don't even notice

it.

If you have a problem with hair loss from the MTX or if you notice that your

hair is starting to change texture and color (getting very foggy looking) I

would recommend Nioxxin shampoo. Worked well for me :-)

Take care! ((hugs))

Lauri

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I have been on mtx for nearly 4 months now and havent really noticed a

significant improvement at all....although im only just increasing to 15mg

this week so maybe with the increase, who knows....good luck... Kate :)

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I think I should bring 36 rolls of TP this time. With more than a moments

notice, we may have more attending! I still have to develop the pictures of us

as mummies from the last surprise party at Tricia's. Midnight, eh? Guess we will

see who turns into pumpkins. Melt and I will be coming together. We may snatch

and Cassaria too. They are on our side of the country. Oh, and Marty too!

(Are boys allowed?) Of course they are... it's a party isn't it? Does anyone

have a copy of the record " it's my party, I'll cry if I want to? " I can't seem

to find mine. See you there with a party smile, Caroline

TLC wrote:

Alright!!! This sounds like a real good one!

I'll bring a bunch of those gel pens, and

Traci or Caroline are you bringing the toilet

paper???Or I can pick up a 24 pak on the

way. Everyone is invited aren't they Sue??

I'm bringing my own pot, because it's still

handy from yesterday...Melt are you coming

along then?? Please do!!

see you soon!!!!! Tricia

-- Re: MTX question

Hey, hey & yippy skippy, the party is on at 's tongight. And I

know you have the room ! But on the stipulation you don't go

around cleaning up first because there will be plenty of that to do

before we leave. Let's see, I can pick up quite a few in this side

of the country and we should be there around midninght! We shall

bring all the fun Sus, Love you and see ya soon !!! ;0)

wrote: or I am just over-stressed,tired, sore and in a bad

mood tonight and

> feel like complaining!

> Love, Sue #2

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Sue,

I started the MTX in January. I started out on the injectable because it is

easier on your system and I am so drug sensitive. I started out at 4 cc which is

10 mg. It took me about 2 hours to feel the drug but like I said, I am

chemically sensitive, have no caffeine and avoid food preservatives as much as

possible. However, the " flying high " I did from the drug was not the same as

feeling the less pain side effects. That did not happen for about 3 weeks and

really kicked in by 2 months. We had to split the dose to injections twice a

week because I " crashed " and could barely move or get out of bed by Thursdays. I

injected on Monday. We split the dose to 3 cc (7.5 mg) on Monday and 2 cc (5 mg)

on Thurdays. We upped it to 3 and 3 to see if we could get rid of my fevers. No

luck on that. We tried taking all 6 cc (15 mg) on Monday and it pretty near

killed me. Breathing took more energy than I had and I had to wait a week for it

to get out of my system. I am back to split dose again. Hope it goes well with

you. See you at midnight for your pity party! Its a long drive so I may start

early writing on my Toilet Tissue and just arrive wearing it!.That way, at least

you will be able to identify me. Smiles, Caroline

" A. Matera " wrote:Hello Friends,

I was just wondering for those of you on MTX..how long has it taken to get

into your system?

We may not be able to change the direction of the wind, but we can adjust our

sails.

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

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  • 7 months later...
Guest guest

Hi Judy,

I was on MTX, and I started getting side effects within two weeks. I lost a

lot of hair. My hair is very thick, but with the MTX it became very thin.

I didn't have any other side effects

Marlena SC

MTX question

Greetings all

I started MTX this weekend. 7.5mg orally. Does anyone have any

suggestions or things I should be looking out for. Also, can any one

tell me when you started to see side effects. ie hair loss, nausea

(sp). Thanks for your helpful information.

Judy, Pa

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Guest guest

Marlena

Thanks so much for the information. I too have very thick hair so

maybe the lost won't be so noticable.

Judy, Pa

> Hi Judy,

>

> I was on MTX, and I started getting side effects within two weeks.

I lost a

> lot of hair. My hair is very thick, but with the MTX it became

very thin.

> I didn't have any other side effects

>

> Marlena SC

>

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Guest guest

Hi Judy , I have been on MTX since October. 15 mg for about 2.5 months now.

I started to see hair loss about the beginning on December, so that would be

about 2 months after I started on it, but I was also diagnosed with Anemia

around that time so.....I never had nausea. Hope this helps.

Patti~Canada

>From: " Judy Moyer " <moyer@...>

ie hair loss, nausea

>(sp). Thanks for your helpful information.

>Judy, Pa

>

Please take the time to check out my homepage at

http://www.angelfire.com/hi2/peppermintp

and leave me a message there or just email me back.

Love you all

PattiPike<IMG height=12 src= " http://g

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Guest guest

Hi Judy, the side effects thatI got with mtx was nausea/diarrhea and

I got later the same day..I also had h/a, this was on 15mg IM we cut

it down to 12.5 the following 2 weeks and I was better..still took

Imodiums on the first couple of days for prevention but the nausea

was gone, then went back up to the 15mg and no nausea, or

diarrhea..little h/a but could not tell if it was from Remicade or

mtx since I got them on the same day. I have very thin hair so

thankfully have not noticed any hair loss. I do seem to have a

funny feeling in my mouth..no sores just a fuzzy feeling is the only

way I can describe it. good luck on it and it has helped me some I

think, not sure if its the remicade or the mtx thats gets me though

at least 1 week with only minor aches.

take care,

Pat from MA

> I started MTX this weekend. 7.5mg orally. Does anyone have

any

> suggestions or things I should be looking out for.

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Guest guest

Hi Judy,

This is Tricia from Wisconsin, I started MTX 1 1/2 years ago.

I started out with the "pills." I stayed with the pills for a year,

and they did help relieve much pain. The first week I took

the pills, I got *really* sick, so from then on I took the pills

over a period of several hours. I took 3 pills...and I spaced

them at least two hours apart. Also, I drank a full glass of

water with each pill. This has helped several in the group

take the pills without getting sick. Did your doctor also

prescribe at least one mg. of Folic Acid to take daily?

This helps to reduce certain possible side effects.

After a year on the pills, and only at the smallest dose to

do any good, (3 pills..71/2mg) I started to lose hair, and

get nauseated anyway. My doctor tried to have me increase

the dosage several times, but I always got too sick. Then I

asked about doing the injectable MTX, and my rhuemy

refused to write the script. I was so sick. I called The Mayo

Clinic in Rochester, and saw a rhuemy there who ordered

the injectable for me. I seem to do okay on the smallest

dose, and when I increase it makes me so sick. *But,*

I have a problem with most meds. it's a chemical thing

I guess.

Hope this info helps you some. Please let us know how

you feel.

~~tricia~~

**************************************************************************************

-- MTX question

Greetings allI started MTX this weekend. 7.5mg orally. Does anyone have any suggestions or things I should be looking out for. Also, can any one tell me when you started to see side effects. ie hair loss, nausea (sp). Thanks for your helpful information.Judy, Pa.

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Guest guest

Thanks Patti

It is so helpful to be able to talk to someone who can relate and

give useful information. Hope you have a good day.

Judy, PA

> Hi Judy , I have been on MTX since October. 15 mg for about 2.5

months now.

> I started to see hair loss about the beginning on December, so that

would be

> about 2 months after I started on it, but I was also diagnosed with

Anemia

> around that time so.....I never had nausea. Hope this helps.

> Patti~Canada

>

>

> >From: " Judy Moyer " <moyer@l...>

> ie hair loss, nausea

> >(sp). Thanks for your helpful information.

> >Judy, Pa

> >

>

>

> Please take the time to check out my homepage at

> http://www.angelfire.com/hi2/peppermintp

> and leave me a message there or just email me back.

> Love you all

> PattiPike<IMG height=12 src= " http://g

>

> _________________________________________________________________

> Add photos to your messages with MSN 8. Get 2 months FREE*.

> http://join.msn.com/?page=features/featuredemail

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Guest guest

Thanks Pat,

Funny you should mention the feeling in your mouth. I have had

the same and was thinking it was in my head. Thanks so much for your

response.

Judy, Pa.

> Hi Judy, the side effects thatI got with mtx was nausea/diarrhea

and

> I got later the same day..I also had h/a, this was on 15mg IM we

cut

> it down to 12.5 the following 2 weeks and I was better..still took

> Imodiums on the first couple of days for prevention but the nausea

> was gone, then went back up to the 15mg and no nausea, or

> diarrhea..little h/a but could not tell if it was from Remicade or

> mtx since I got them on the same day. I have very thin hair so

> thankfully have not noticed any hair loss. I do seem to have a

> funny feeling in my mouth..no sores just a fuzzy feeling is the

only

> way I can describe it. good luck on it and it has helped me some I

> think, not sure if its the remicade or the mtx thats gets me though

> at least 1 week with only minor aches.

> take care,

> Pat from MA

>

>

>

>

>

>

>

>

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In a message dated 4/7/2003 2:32:03 PM Eastern Standard Time, moyer@... writes:

Marlena

Thanks so much for the information. I too have very thick hair so

maybe the lost won't be so noticable.

Judy, Pa

>Hi Judy,

>

>I was on MTX, and I started getting side effects within two weeks.

I lost a

>lot of hair. My hair is very thick, but with the MTX it became

very thin.

>I didn't have any other side effects

>

>Marlena SC

>

Hello stilligans,

Boy, it's been a very long time since I've written on this loop. I generally read your posts but I'm too wiped out working full time to respond too much these day. Way, way too tired.

Wanted to respond on the mtx thread. I had very long, thick, curly hair. I started loosing lots of hair with the high pred or with the mtx, not sure which. It's been 4 years later and now I have very thin, straight hair that I had to cut short because the long hair looked stupid. I look in the mirror and still take a double take to not see me after 50 years with curly hair.

I have noticed recenlty that I'm feeling a bit queasy lately, don't know if it's from taking the drugs for so long or what. Although I gave up caffeine - again, and it seems to be getting a bit better. But certainly not normal - but why should anything be normal these days?

But hello to all of my old friends and new ones as well. Be well.!

Love Carole

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Guest guest

Judy, Please be aware of the hormonal changes that are common with MTX, most noteably the premature onset of menopause, that is reversable once the medication is stopped. This is what I'm dealing with now. Initially I had nausea and then some hair loss. Both have almost disappeared since starting taking it by injection. I have had my menses now X3 months after stopping it completely for a while. I have been on hormone therapy and today had a D & C-it is a real drag! I think it is an important issue to consider. from MA

Re: MTX question

Thanks Pat, Funny you should mention the feeling in your mouth. I have had the same and was thinking it was in my head. Thanks so much for your response.Judy, Pa.> Hi Judy, the side effects thatI got with mtx was nausea/diarrhea and > I got later the same day..I also had h/a, this was on 15mg IM we cut > it down to 12.5 the following 2 weeks and I was better..still took > Imodiums on the first couple of days for prevention but the nausea > was gone, then went back up to the 15mg and no nausea, or > diarrhea..little h/a but could not tell if it was from Remicade or > mtx since I got them on the same day. I have very thin hair so > thankfully have not noticed any hair loss. I do seem to have a > funny feeling in my mouth..no sores just a fuzzy feeling is the only > way I can describe it. good luck on it and it has helped me some I > think, not sure if its the remicade or the mtx thats gets me though > at least 1 week with only minor aches.> take care,> Pat from MA> > > > > > > >

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  • 10 months later...
Guest guest

Tomorrow we will know if Caitlin has indeed come down with a case of strep.

I hope and pray NOT!!!!! This could be a possible cause for the headaches,

but if not, then I will really have to look into the MTX possibility. I called

the rheumy today and because the nurse didn't hear me (a lot of noise in the

background) she didn't ask about the headaches until late, so no news on that

front yet. She did hear my first question about strep though, and he felt

that since she is on Cefzil she should be okay. However, her pediatrician feels

that because she is on such a low dose she could get strep again. What do you

do when the two doctors have different viewpoints especially on something

like this? I feel like calling the pediatrician and asking her to 'hash it out'

with the rheumy. By the way, the cardiologist, from his viewpoint, doesn't

think she needs prophylactic antibiotics, but to defer to the rheumy and/or

pediatrician, but they both have different approaches URGHHHH!

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