Re: MTX Side Effects - to Missy

[Guest guest]

Wow, Missy, I find your email rather alarming. How about going to/finding

another rheumatologist, at least go for a second opinion.

Tons of luck to you both

snowdrift52003 <snowdrift52003@...> wrote:

Hi Missy,

Please talk to your doctor about folic acid. These days any

rheumatologist worth her/his salt prescribes folic acid along with

MTX. MTX severely depletes the body of folic acid. Folic acid

deficiency could be causing your daughter's tongue symptoms and

fatigue. I take 2-3 mg. a day. (Started out with 1 mg. but it wasn't

enough.) Sending good thoughts your way. It must be so hard to watch

your little girl go through this...

Sierra

> My tongue swelled a lot but I didn't know why. I got the answer

here, I

> wasn't taking enough Folic Acid. I was taking 1 mg per day, and it

wasn't

> enough. The Rummy I was using ignored that fact when he increased

my MTX to

> 1.2 cc. I went up to 5 mg of Folic Acid and after a while, a month

or so, it

> went back down to comfortable, but apparently the damage was done,

and it

> gets tender sometimes and is larger than it was. At least it's

better now.

>

> Dennis

>

> Re: [ ] MTX Side Effects

>

>

> > anyone on injectable mtx have a reaction as tongue swelling, or

feel it as

> > it went thru your veins? now my 2nd week off after almost 4 yrs.

still not

> > sure

> > what we will do next. my rheumi told me not to worry, many drugs

out

> > there.

> > but i only have medicare and the state plan which i may loose

because i

> > made

> > $80 too much last year. yes i am getting scared. remembering

what life

> > was

> > like before mtx

> >

> > kathy in il

>

>

>

>

[Guest guest]

I woke up thinking about your daughter and feeling concerned about

the quality of medical care she is getting. I don't know much about

JRA but your description of the prednisone use also raised quetions

in my mind. We know how damaging prednisone can be to the bones, and

I wonder about continued use of it on a growing child...? You didn't

say whether the plan was for short term use; that would not concern

me as much.

I would highly recommend getting a second opinion about 's

treatent plan from another rheumatologist--preferably someone who has

a lot of experience with juvenile RA.

Sierra

> > My tongue swelled a lot but I didn't know why. I got the answer

> here, I

> > wasn't taking enough Folic Acid. I was taking 1 mg per day, and

it

> wasn't

> > enough. The Rummy I was using ignored that fact when he increased

> my MTX to

> > 1.2 cc. I went up to 5 mg of Folic Acid and after a while, a

month

> or so, it

> > went back down to comfortable, but apparently the damage was

done,

> and it

> > gets tender sometimes and is larger than it was. At least it's

> better now.

> >

> > Dennis

> >

> > Re: [ ] MTX Side Effects

> >

> >

> > > anyone on injectable mtx have a reaction as tongue swelling, or

> feel it as

> > > it went thru your veins? now my 2nd week off after almost 4

yrs.

> still not

> > > sure

> > > what we will do next. my rheumi told me not to worry, many

drugs

> out

> > > there.

> > > but i only have medicare and the state plan which i may loose

> because i

> > > made

> > > $80 too much last year. yes i am getting scared. remembering

> what life

> > > was

> > > like before mtx

> > >

> > > kathy in il

> >

> >

> >

> >

[Guest guest]

Does your daughter go to a children's hospital? Or is there one near where you

live?

in WI

snowdrift52003 <snowdrift52003@...> wrote:

I woke up thinking about your daughter and feeling concerned about

the quality of medical care she is getting. I don't know much about

JRA but your description of the prednisone use also raised quetions

in my mind. We know how damaging prednisone can be to the bones, and

I wonder about continued use of it on a growing child...? You didn't

say whether the plan was for short term use; that would not concern

me as much.

I would highly recommend getting a second opinion about 's

treatent plan from another rheumatologist--preferably someone who has

a lot of experience with juvenile RA.

Sierra

> > My tongue swelled a lot but I didn't know why. I got the answer

> here, I

> > wasn't taking enough Folic Acid. I was taking 1 mg per day, and

it

> wasn't

> > enough. The Rummy I was using ignored that fact when he increased

> my MTX to

> > 1.2 cc. I went up to 5 mg of Folic Acid and after a while, a

month

> or so, it

> > went back down to comfortable, but apparently the damage was

done,

> and it

> > gets tender sometimes and is larger than it was. At least it's

> better now.

> >

> > Dennis

> >

> > Re: [ ] MTX Side Effects

> >

> >

> > > anyone on injectable mtx have a reaction as tongue swelling, or

> feel it as

> > > it went thru your veins? now my 2nd week off after almost 4

yrs.

> still not

> > > sure

> > > what we will do next. my rheumi told me not to worry, many

drugs

> out

> > > there.

> > > but i only have medicare and the state plan which i may loose

> because i

> > > made

> > > $80 too much last year. yes i am getting scared. remembering

> what life

> > > was

> > > like before mtx

> > >

> > > kathy in il

> >

> >

> >

> >