Re: Crazy?

[Guest guest]

Crazy???Us??? Pahhhleeeesssee!!!

I have found either because my head is spinning from all that goes on or

whatever reason...that my hearing is getting worse. I hear things like my

6 yr old saying " Cream of wheat at 8 ? " and he actually said " Are we

watching a show at 8? " or I ask my sweetie what he is doing and I hear: " I

just bought an iguana. " When actually it was " I am getting a drink of

water. " Now in my own defense on that last one he lives {for now} outside

of Seattle WA and I am in Massachusetts and he is crazy so that one could

have happened.

And I do things like put the masking tape in the refridgerator and pack my

children lunch for school on Saturday...but other than stuff like

that...nope all is perfectly normal here.

[Guest guest]

Dear ,

This is too funny. I do the same thing. I lose my concentration and my

train of thought fairly easily. I mix up my words and even repeat myself

from time to time. My memory at times also seems to be going. Your

definitely not alone and I am just as sane as the next person. I am pretty

sure any way.

Love,

jatw@...

[Guest guest]

OK -- so are we really having memory problems from Stills? our meds? or

what??!!

[Guest guest]

the whole memory thing is just too scary. i have the same problem and

sometimes i just get so confused and i have to take a few minutes to try and

remember what i am doing

[Guest guest]

I think it is because of the meds but I am not an official on this.

I do know Prednisone causes problems in that area. Melt

> OK -- so are we really having memory problems from Stills? our

meds? or

> what??!!

>

>

>

[Guest guest]

Would it really hurt to take her off the MTX and monitor her activity via

physicals and labwork is what I would ask. Yes, she is young and you want to be

agressive but if she could have good control without it why not give it a shot?

The worst that will happen is she will have to go back on it. Unfortunately, if

my son was going through this he would somehow think it was cool as he likes to

be different so I cannot relate it any way. He enjoys being diabetic!

If I sneeze funny my Rheumie yanks a medicine. When I took Orencia I had my

breasts swell horribly and costochondritis. It was close to my menstrual cycle

but he was fearful of a reaction and told me not to take it. If this is such a

problem I can't imagine that your rheumie wouldn't entertain a trial run of

discontinuing MTX. MTX does aid in the biologics but isn't the whole reason why

they work well for some. Most of the time you only need a small dose too. So

if your child's dose is high try lowering maybe.

If I get a few ulcers in my mouth from MTX the rheumie lowers it. I would

imagine if I was having bald spots he would do the same.

Shandi

[ ] Crazy?

Am I crazy to want to take my 13 yo daughter off MTX because she is losing

her hair in great clumps? If she had cancer I wouldn't stop chemotherapy.

Am I crazy to do this?

She cried for a couple of hours tonight and we bought a couple of hats but

she is so depressed about the hair loss and the big bald spot on top of her

head is getting bigger every day.

I wonder how much faster RA will progress without the MTX if I keep her on

Humira and Minocyn. My doctor is convinced that Humira works best when

accompanied by MTX.

I don't mean to be whining here, but I value your input because you all are

living with this disease and I'm not. I'm just trying to keep my daughter

as healthy as possible both physically and emotionally.

Lori in NJ

[Guest guest]

Lori, Losing hair is very upsetting. I know personally how it upset me and I'm

way past 13 (several times 13 in fact) How much mtx is your daughter taking?

Maybe it would be possible to reduce the amount. At 15-20 mgs mine was falling

out by the handfuls but at 7.5 or 10 mgs I only have a little loss and a lot of

new hair coming back in and with the others meds (enbrel & minocin) I feel that

I have my RA in control. Also on the reduced MTX I have less fatigue. Maybe you

could try reducing the MTX for a while and see how she does with the hair loss

and how she feels on a reduced dosage. in TN.

Lori Maynard <lorimaynard@...> wrote:

Am I crazy to want to take my 13 yo daughter off MTX because she is

losing

her hair in great clumps? If she had cancer I wouldn't stop chemotherapy.

Am I crazy to do this?

She cried for a couple of hours tonight and we bought a couple of hats but

she is so depressed about the hair loss and the big bald spot on top of her

head is getting bigger every day.

I wonder how much faster RA will progress without the MTX if I keep her on

Humira and Minocyn. My doctor is convinced that Humira works best when

accompanied by MTX.

I don't mean to be whining here, but I value your input because you all are

living with this disease and I'm not. I'm just trying to keep my daughter

as healthy as possible both physically and emotionally.

Lori in NJ

[Guest guest]

If it were my daughter...................

I would tell the dr that the loss of hair to a teenage girl could cause more

emotional issues and scars than the RA ever could do. Then ask, isn't there

something else that you can try, can he lower the dose even for a short while?

Why is she on such a powerful drug, is she in an advanced stage? Is there such

a thing? I " m fairly new to RA so I'm not sure why she is taking this one. I

don't take it, I'm on Imuran, Plaquenil and low-dose (finally) Prednisone.

Has she been on other drugs before this one? If she had cancer and was on

chemo, I would tell her to bite the bullet, loss of hair is nothing compared

with loss of life, BUT maybe there are other drugs for RA that she might be able

to use that won't cause the loss of hair. Her dr needs to understand the

emotional upheaval she is going through, AND she needs to understand that she

can still be herself, without her hair. Surely she has seen the tv commercials

with little kids losing their hair to cancer, tell her it will grow back even if

you don't know that for sure that it will. Maybe you could go wig-shopping and

try to make it a tiny bit of fun. Don't think that I don't understand what she

is going through, my daughter was dx with juvenile diabetes at 16. No loss of

hair, but still an emotional time for her too. It's hard enough just being a

teenager, this added burden must be hell for both of you.

Keep on holding on.............

Patsy

El Mirage, AZ

DX 2005 Stage 1 PBC

AIH/SLE/RA/COPD

[ ] Crazy?

Am I crazy to want to take my 13 yo daughter off MTX because she is losing

her hair in great clumps? If she had cancer I wouldn't stop chemotherapy.

Am I crazy to do this?

She cried for a couple of hours tonight and we bought a couple of hats but

she is so depressed about the hair loss and the big bald spot on top of her

head is getting bigger every day.

I wonder how much faster RA will progress without the MTX if I keep her on

Humira and Minocyn. My doctor is convinced that Humira works best when

accompanied by MTX.

I don't mean to be whining here, but I value your input because you all are

living with this disease and I'm not. I'm just trying to keep my daughter

as healthy as possible both physically and emotionally.

Lori in NJ

[Guest guest]

Thank you all again.

For the record, is on 25 mg of MTX per week by injection. Since I

fill the syringe, this week I'm only going to give her half of her normal

amount.

Some have asked why so aggressive. She does have a severe case of RA (if

there is such a thing as severity of RA). When she was finally diagnosed in

February of this year she couldn't even walk. It came on her rapidly and

ravaged every part of her body. It's been a tough year. My dad was

diagnosed with RA when he was about 22 years old and spent an entire year in

the hospital. Bad disease. I hate it. Don't we all!

Some have asked what else she takes. Since February she has been on

Prednisone and Lodine every day. She started Prednisone at 40 mg per day

and now is down to 5 mg per day. She and I have set a personal goal of

getting her off Prednisone by the end of November and so far, so good. On

April 4th she began weekly injections of Humira and about a month after

starting that, she began MTX injections as well. Of course she also takes

Folic Acid since starting MTX.

She's done pretty well on these drugs until now. Her hair has been steadily

thinning over the last few months, but since she had very thick hair it

wasn't really a problem. This weekend however it began falling out in huge

clumps. She has a bald spot right on the top of her head in the front about

the size of her fist. Every day it gets bigger.

Tomorrow is when she is due for MTX again and like I said I am only going to

give her 12.5 mg instead of the full 25 mg. Next week I think I will give

her less than that. But ultimately I think she needs a little break from

the MTX.

Yesterday I started her on Minocin and I think I would like to see if she

can tolerate it and let her body have a rest from MTX for a few months. I'm

having her take a probiotic called Florastore every day to help counteract

the disruption that can take place in the intestines from antibiotics.

Our rheumy has discussed using Rituxan and Cytoxan (I'm sure I've misspelled

these) in conjunction with one another via two days of IV infusion in a row.

I think after the holidays I would be willing to consider this more

seriously if we could give her a 3 month break from MTX first and then

assess her progress on just the Minocin, Lodine and Humira.

Anyway, that's what I'm thinking and this is my tentative plan. Thank you

all for listening and for the advice and support you've offered. We (,

my husband and I) truly appreciate the collective experience and wisdom of

the people on this loop.

Lori in NJ

[Guest guest]

" If I sneeze funny my Rheumie yanks a medicine "

Shandi, I had a Rummy that was like that and I was so bad off with his

(mal)treatment that I was welcoming death over living in such pain and

disability. He would pull meds from me and not do anything in place of it. I

finally had too much so I went back to my old Rheumy, and he immediately put

me on my anti-inflammatories and pain meds that worked. In 2 months, I could

get around without much help, and now am back to doing things I had given up

on earlier. The most important thing I did was to get to a Rheumy that was

active and not afraid to take a chance if it was to help me.

I would strongly recommend finding another Rheumy, one that will do what's

right rather than covering his/her own butt!

Dennis in Eastexas

" It's not Rocket Surgery "

Re: [ ] Crazy?

> Would it really hurt to take her off the MTX and monitor her activity via

> physicals and labwork is what I would ask. Yes, she is young and you want

> to be agressive but if she could have good control without it why not give

> it a shot? The worst that will happen is she will have to go back on it.

> Unfortunately, if my son was going through this he would somehow think it

> was cool as he likes to be different so I cannot relate it any way. He

> enjoys being diabetic!

>

> If I sneeze funny my Rheumie yanks a medicine. When I took Orencia I had

> my breasts swell horribly and costochondritis. It was close to my

> menstrual cycle but he was fearful of a reaction and told me not to take

> it. If this is such a problem I can't imagine that your rheumie wouldn't

> entertain a trial run of discontinuing MTX. MTX does aid in the biologics

> but isn't the whole reason why they work well for some. Most of the time

> you only need a small dose too. So if your child's dose is high try

> lowering maybe.

>

> If I get a few ulcers in my mouth from MTX the rheumie lowers it. I would

> imagine if I was having bald spots he would do the same.

>

> Shandi

[Guest guest]

Lori,

You aren't crazy. You are in a very difficult situation.

Whatever you decide to do for , I would be sure to discuss it with Dr.

Lehman. He should be aware of all medications and supplements (Reliv,

Florastore, and any others) is taking and at what dosage. A second

opinion from another pediatric rheumatologist might be a good idea, too.

Something to bear in mind: RA that develops in middle age versus RA that

develops at age 12 are not exactly the same. Treatment approaches may differ

considerably.

Although Dr. Lehman may seem unsympathetic about 's hair loss, he may

be thinking that, because of the nature of her disease, she is at high risk

for permanent joint and/or organ damage without the MTX. He may be thinking

that she would remain on MTX until her disease appears to be well-controlled

and then scale it back. I would ask him about it. Is he aware of how upset

is about her hair falling out?

One of the reasons researchers believe that Humira works better with MTX is

that it is thought that MTX suppresses the formation of antibodies directed

against the Humira. Without the MTX, 's body may make anti-Humira

antibodies, and the drug may become less effective for her. I would ask Dr.

Lehman about this also.

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

RE: [ ] Crazy?

> Thank you all again.

>

> For the record, is on 25 mg of MTX per week by injection. Since I

> fill the syringe, this week I'm only going to give her half of her normal

> amount.

>

> Some have asked why so aggressive. She does have a severe case of RA (if

> there is such a thing as severity of RA). When she was finally diagnosed

> in

> February of this year she couldn't even walk. It came on her rapidly and

> ravaged every part of her body. It's been a tough year. My dad was

> diagnosed with RA when he was about 22 years old and spent an entire year

> in

> the hospital. Bad disease. I hate it. Don't we all!

>

> Some have asked what else she takes. Since February she has been on

> Prednisone and Lodine every day. She started Prednisone at 40 mg per day

> and now is down to 5 mg per day. She and I have set a personal goal of

> getting her off Prednisone by the end of November and so far, so good. On

> April 4th she began weekly injections of Humira and about a month after

> starting that, she began MTX injections as well. Of course she also takes

> Folic Acid since starting MTX.

>

> She's done pretty well on these drugs until now. Her hair has been

> steadily

> thinning over the last few months, but since she had very thick hair it

> wasn't really a problem. This weekend however it began falling out in

> huge

> clumps. She has a bald spot right on the top of her head in the front

> about

> the size of her fist. Every day it gets bigger.

>

> Tomorrow is when she is due for MTX again and like I said I am only going

> to

> give her 12.5 mg instead of the full 25 mg. Next week I think I will give

> her less than that. But ultimately I think she needs a little break from

> the MTX.

>

> Yesterday I started her on Minocin and I think I would like to see if she

> can tolerate it and let her body have a rest from MTX for a few months.

> I'm

> having her take a probiotic called Florastore every day to help counteract

> the disruption that can take place in the intestines from antibiotics.

>

> Our rheumy has discussed using Rituxan and Cytoxan (I'm sure I've

> misspelled

> these) in conjunction with one another via two days of IV infusion in a

> row.

> I think after the holidays I would be willing to consider this more

> seriously if we could give her a 3 month break from MTX first and then

> assess her progress on just the Minocin, Lodine and Humira.

>

> Anyway, that's what I'm thinking and this is my tentative plan. Thank you

> all for listening and for the advice and support you've offered. We

> (,

> my husband and I) truly appreciate the collective experience and wisdom of

> the people on this loop.

>

> Lori in NJ

[Guest guest]

i know it is extremely hard-especially for a 13 yo to accept hair loss-after

all, kids are very mean. however, mtx works for the progression of joint

damage. i have seen it in my own xrays-even after 1 year of treatment. i was

diagnosed at 19 and i hate being on it. but, your daughter and i are very

fortunate that it was diagnosed early on in the disease and that also means we

can have a brighter future. i know the doctor's comment of wigs was very

superficial and insensitive, but it's only b/c he knows that mtx will work for

her-almost like it's not an option to be off of it. do what your head tells you

this time, instead of your heart. i know that's reverse advice but this sucks

and hopefully it will give her a more controllable life.

brooke in pa

>

> From: " Lori Maynard " <lorimaynard@...>

> Date: 2006/10/24 Tue PM 10:08:35 EDT

> < >

> Subject: [ ] Crazy?

>

> Am I crazy to want to take my 13 yo daughter off MTX because she is losing

> her hair in great clumps? If she had cancer I wouldn't stop chemotherapy.

> Am I crazy to do this?

>

>

>

> She cried for a couple of hours tonight and we bought a couple of hats but

> she is so depressed about the hair loss and the big bald spot on top of her

> head is getting bigger every day.

>

>

>

> I wonder how much faster RA will progress without the MTX if I keep her on

> Humira and Minocyn. My doctor is convinced that Humira works best when

> accompanied by MTX.

>

>

>

> I don't mean to be whining here, but I value your input because you all are

> living with this disease and I'm not. I'm just trying to keep my daughter

> as healthy as possible both physically and emotionally.

>

>

>

> Lori in NJ

>

>

>

>

>

>

>

>

[Guest guest]

Hi Lori: I am currently taking 17.5 mg/week and my hair is falling

out a little bit. I too am several times over 13 and it still kills

me as I have almost waist length hair. However, I did see my rheumy

yesterday and she put me on a higher dose of folic acid (leuko ????)

that you take once a week. evidently from what the pharmacist says,

that is given at hi doses of mtx to alleviate some of the side

effects. We shall see.

Best of luck with your daughter. I did speak with my rheumy

yesterday and she said that in order to satisfy the insurance

companies, they had to show that they had " tried " drugs like mtx in

order for the enbrel, etc to be covered. Have any of you seen that

to be tru?

Best of luck to you and your daughter. Vicki

> Am I crazy to want to take my 13 yo daughter off MTX

because she is losing

> her hair in great clumps? If she had cancer I wouldn't stop

chemotherapy.

> Am I crazy to do this?

>

> She cried for a couple of hours tonight and we bought a couple of

hats but

> she is so depressed about the hair loss and the big bald spot on

top of her

> head is getting bigger every day.

>

> I wonder how much faster RA will progress without the MTX if I

keep her on

> Humira and Minocyn. My doctor is convinced that Humira works best

when

> accompanied by MTX.

>

> I don't mean to be whining here, but I value your input because

you all are

> living with this disease and I'm not. I'm just trying to keep my

daughter

> as healthy as possible both physically and emotionally.

>

> Lori in NJ

>

>

[Guest guest]

>

> I did see my rheumy yesterday and she put me on a higher dose of

folic acid

HI Vicki,

What dose of folic acid are you taking?

Thanks,

[Guest guest]

I'm taking Leucovorin (folinic acid) at 10 mg per week (12-14 hours

after the methotrexate dose). I just took my first dose about 30

minutes ago and I'm feeling a little bit nauseous and probably

shoudl have taken it with some food. I will next time.

Vicki

> >

> > I did see my rheumy yesterday and she put me on a higher dose

of

> folic acid

>

> HI Vicki,

> What dose of folic acid are you taking?

> Thanks,

>

>

[Guest guest]

Vicki, yes by all means eat before you take any meds.

It helps!!!! I always eat before taking any meds.

Clare

________________________________________________________________________

Check Out the new free AIM® Mail -- 2 GB of storage and industry-leading spam

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[Guest guest]

Hi,

I just want to jump in on two points ... first I take 25 mg of MXT

and 2 mg of folic acid (along with other meds ... Remicade,

prednisone etc.)and have no hair loss at all. So, I think it is a

very individual thing.

The second is that my heart hurts for your daughter and for you. We

faced a very similar situation where my daughter, who has an

autoimmune disease (eosinophilic gastroenteropathy and a few other

things going on) that made it necessary for her to eat nothing by

mouth (since age 2 yrs.) and wear a backpack with a pump in it that

slowly pumped a special formula into her through a gastric tube.

Well, as she got to 5th and 6th grade she became very depressed

about being different and avoided school. We went to several

counselors with her (psychologists and psychiatrists) where she was

told things like " I'd be depressed too if I could never eat and had

to wear that. " not very helpful but certainly expensive.

We felt very alone and her gastroenterologist would only tell her to

get tough and struggle through or she would get very sick again.

Unfortunately, being very sick and sitting in the hospital for a few

weeks with 24 hour nurturing with me my sounded pretty good to her.

It got to the point that I had to seriously look at whether I could

continue treatment knowing it would give her a better future but

also knowing there was a risk of her trying to kill herself and

having no future. It was such a hard decision. We opted to not have

her wear the pack anymore at school. It meant her blood sugars

dropped during the day and she couldn't get the calories she needed

to maintain her weight, much less grow. She was already very thin.

It paid off in our case and with added calorie boosts in her formula

she continued on. She came home after a few days without the pump

and said it was amazing and that all the kids were treating her like

she was normal. One of her teacher called me and said it was an

amazing transformation and that she had her head up, she smiled and

talked to people and even laughed. It was great for her but still

worried us. We were very lucky that she went into remission about 2

years ago and has remained in remission ever since. Her doctor, a

specialist in her disease who we travel hundreds of miles one way to

see, says to be prepared because it will be a hard fall when it

returns.

On the other hand I have to tell you that her best (e-mail) friend

who has the same disease tried not wearing the pump and ended up on

TPN (where she is fed through an IV line going into a port near her

heart)which completely bypasses her digestive system. It is very

dangerous because if any germs get in the line the kiddos become

septic and land in the ICU very seriously ill. Two kids with her

disease have died this year from sepsis.

OK long story … but my point is this … it has to be your decision.

For us that meant sitting down with Theresa and explaining the

possible consequences of stopping the tube feedings during school

and we all agreed on a one month trial and then if her weight wasn't

the same or any other problems came up, she was back on pump.

One of my saving graces in all this was a group for parents of

kiddos with the disease and a sub group for that that is just

parents of teenagers. I don't know what is available for parents of

children with RA, but try to find one, or maybe someone else know of

one … or maybe you could start one.

I am sorry this is so long, but I just wanted to share our

experience and tell you that my heart gores out to you and your

daughter.

in St. Louis

[Guest guest]

I have a new Rheumy because of a move. I've been on MTX, Humira, Asacol (large

colon antibodic for auto immune colitis, take 12 daily) as well as high blood

pressure meds and thyroid supplement. My new Rheumy had me go off of the MTX. He

insists that the Asacol and the MTX are similar enough to do the same job and

with the combination of the two drugs, my liver could just fail. I have been off

the MTX for 2 1/2 months except the week I was very sick and suspected it might

be because I came off the MTX and I have to admit, I really haven't noticed any

difference. I am still on the Humira.

Just FYI, there must be other drugs other than MTX that your daughter could take

and not lose her hair.

Colleen

[Guest guest]

I take Leucovorin after my MTX too, but I've never had any problem

with it at all. Maybe because I time it so that I take it right

before I go to bed?

> > >

> > > I did see my rheumy yesterday and she put me on a higher dose

> of

> > folic acid

> >

> > HI Vicki,

> > What dose of folic acid are you taking?

> > Thanks,

> >

> >

>