CONFUSED

[Guest guest]

Dear ,

You are right about the folic acid. I asked my doc again yesterday about it.

Every day except the medication day.

One of the drawbacks to the methotrexate, and even the Enbrel is that

it does begin to wear off. You can discuss with your doctor using it every

five days. At the low dose you are on, I am guessing it would be possible.

The higher your dose goes, you may want to consider injecting yourself once a

week.

It is easier on the stomach and is absorbed better apparently. The needle is

so small it doesn't hurt much either.

Watch out for nausea and vomiting. Don;t forget that the first 24 hours after

your metho dose you may feel wiped out and tired - this is normal. I have

spoken to people in the past who do their shot right after supper - that way

they can sleep off most of the side effects. Just a thought...

Good Luck to you with everything, and keep up the questions!

[Guest guest]

I received my MTX shot yesterday, and MY Dr, told me to take 5mg of folic acid

on the day I take the shot, as opposed to the 3mg I take daily, he said the

5mg is for the nausea. I felt so exhausted and sick yesterday. I went to bed

at 930pm, but I could have gone to bed at 6pm. I felt like crap. I also had

shortness of breath and a cough. I cant stand this drug, and I dont feel

anybetter. To make matters worse, I asked the nurse if I can do it myself at

home, since I have to go into Santa , from Long Beach(30 miles) once a

week, She said NO, its a toxic drug and the dr wont let you do it yourself.

And, my insurance only pays for the shot. So, Im screwed once again.

Randi

[Guest guest]

I must be odd as I take mtx17.5mg. every Wed. and really don't feel any

different. I may feel sleepy about 2 hrs. later but that passes. I have no N

or V, and take folic acid every day. Each one sure is different. One thing I

hate is the fat side effects of pred. Wish I could get off that. Good

healthe to all. Just had to get my 5 cents in. Betty

[Guest guest]

In a message dated 2/25/99, 8:58:19 AM, onelist writes:

<< I ask him if I

should be taking Folic Acid and he wrote me a Rx

for it and said I should take one per day, even

on the day I take the MTX. I thought you didn't

take the Folic Acid on the same day? Anyone have

any thoughts about that?>

I have been taking the folic acid and MTX combination for a couple years now,

I also take the folic every day, as per docs orders. Works for me.

<Also, why is it that

MTX is taken only once per week.>

To allow your liver to recover?

< I have noticed that the day after I take it I feel much better

and that usually last until about the 5th day,

then it seems to start wearing off. >>

I have never noticed this.

Hapy trails - Rob Glover

[Guest guest]

,

I take my doses of Mtx. on Monday, Wednesday and Friday and each dose is

2.5 mg. This is the way my Rheumy instructed me to take it, and

explained to me that it keeps an even dosage in my body constantly so I

don't feel like it is wearing off. I fully understand what you are

saying. Why don't you ask your Rheumy if you can do this. Doing it

this way might just do the trick.

And I also take my Folic Acid every day. I was never instructed to do

it any certain way, I just assumed you take it everyday and my Rheumy

never said anything and I never asked, but I will the next time I see

her.

Angera

[Guest guest]

> Also, why is it that

> MTX is taken only once per week. I have noticed

> that the day after I take it I feel much better

> and that usually last until about the 5th day,

> then it seems to start wearing off. Seems like

> it might work better if it was taken twice per

> week?

My understanding is that taking mtx once per week, instead of daily, reduces

the potential for toxic side-effects in one way or another. There is supposed

to be some benefit from splitting it into 3 dosages over a 24 hour period

though.

My experience, after 20 years, is that if the benefits of the mtx wear off

before the week is over, it means that you aren't on a high enough dosage. I

used to live in a cold climate (Maine) and my PA is very cyclical (good in the

summer, and bad in the winter). As winter arrived, I could tell when it was

time to increase my dosage by the fact the benefits of the mtx didn't last for

a full week. When I was on a correct dosage I wouldn't feel the ups and downs

of my arthritis each week; it would remain at a fairly steady state.

However, that " fairly steady state " would gradually decline throughout the

winter and inprove in the spring and summer, but there wouldn't be any of the

weekly ups and downs.

I've always taken my folic acid daily. 1 mg. I never had much need for it -

only a few mouth sores very infrequently. I had few other side-effects from

the mtx.

Rick G (in CA)

[Guest guest]

> She said NO, its a toxic drug and the dr wont let you do it yourself.

That doesn't sound right. I'd talk to the doctor himself. There are plenty

of people that inject their mtx, themselves.

Rick G (in CA)

[Guest guest]

Dear Randi,

Call the docs office and demand to speak to him. Tell him that you understand

that it is common practice all over the world that patients inject their

methotrexate on their own once a week.

It will cost you a lot less. They prescribe the little vials and insulin

needles, the pharmacy considers it a prescription of course. No fee at the

docs office is necessary except for your monthly visit and bloodwork.

As for the nausea, try giving yourself the injection after supper so you can

sleep off the major part of the day. Also demand a prescription for Zofran.

it is very safe, and if you take it an hour before your shot and do follow up

doses for the first 24 hours -- you should not have any nausea.

Go get them girl!

[Guest guest]

MTX is very slow to get started and I find that it is slow to lose it's

effect. I am taking 20 mg/week for a few years now with 1 1/2mg folic acid

(I buy the suppliment -- it is cheaper than the rx.) When I developed a

sinus infection last month, I held off the MTX for 3 weeks before I really

started to notice the effect. I restarted this week and expect it will take

a few weeks to get back to where I was.

[Guest guest]

In a message dated 2/26/99 10:28:42 AM Hawaiian Standard Time, RSGinCA@...

writes:

<< There is supposed

to be some benefit from splitting it into 3 dosages over a 24 hour period

though. >>

This is the way I take it. Wed. 8pm, Thurs. 8am, Thurs 8pm. My rheumy said

that this way best treats the psoriasis. It has worked great on mine.

Trish

[Guest guest]

,

I was on celebrex and it didn't help at all. I just found out yesterday that I

have psoriatic arthritis. Now to decide on the med and whether or not I want to

take it. I am 46 and have suffered with psoriasis since I was 16.

Robin

[ ] confused

> ...I was on celebrex for 2 yrs. and it didn't seem to help

> either. Thanks!!

[Guest guest]

In my case the Vioxx hasn't helped much except I don't have visible

swelling in my knuckles (the affected area) The Dr. is keeping me on

that as well as starting the Methotrexate

> Hello everyone, I haven't been diagnosed yet but,There is no

doubt

> in my mind what has been going on with my body for the last 15

yrs. I

> am so glad to have found this site. There is so much support here.

> After viewing this group I decided to make an appt, with a rhuemy,

I

> went and he sent me for x-rays, he also put me on vioxx (I haven't

> noticed anything, should I ? ) I will return this week to see what

he

> says. I do know that after so many times that I've sought help

> because I didn't feel good with foot pain, lower back and hip

pain,

> finger, shoulder,BRAIN FOG , and neck pain that now I'll feel

> confident in telling a Dr. that I don't think this horrible pain

is

> related to the diabetes or for them to blame it on weight or

smoking.

> I'm 30 lbs. overweight and I quit smoking 2 months ago. So why do

I

> still feel like this? I'm very confused about all of the meds that

> are talked about here, and the symtoms talked about here. I've had

> psoriasis for 25yrs. I am 45yrs. old. Hope there will be answers

> soon. I was on celebrex for 2 yrs. and it didn't seem to help

> either. Thanks!!

[Guest guest]

We started using Houston enzymes July 15th and also seen regression for

the last 3 weeks, and it was very discouraging to say the least. We knew

we had to try to stick it out and 2 days ago we upped the dosage to one

capsule per meal (AFP) and presto he came out of it.

Confused

I am writing at the end of my rope. We have been implementing

a plan for our daughter including numerous supplements one being

enzymes. It seems when we started the enzyme this week we saw her

immediately regress and now unless pulled away she stims all day

long. This is a significant regression and so immediate (the day

she begins taking them). This is our second type of enzyme to try.

I have read that regression is possible, but I wonder if such an

immediate regression is a reaction or simply something we need

to " get through " to see the positive results. I would greatly

appreciate some feedback.

Regards,

Jill Fisk

[Guest guest]

I would call and talk with Devin directly. He would be best able to

advise you based on what your does/does not tolerate. Was your

daughter gfcf prior to enzymes? If not, it could be an immediate

withdrawl reaction which would ultimately be a good thing. Are you

seeing anything new that is good at all?

---

In , " j_d_fisk " <j_d_fisk@y...> wrote:

> I am writing at the end of my rope. We have been implementing

> a plan for our daughter including numerous supplements one being

> enzymes. It seems when we started the enzyme this week we saw her

> immediately regress and now unless pulled away she stims all day

> long. This is a significant regression and so immediate (the day

> she begins taking them). This is our second type of enzyme to

try.

> I have read that regression is possible, but I wonder if such an

> immediate regression is a reaction or simply something we need

> to " get through " to see the positive results. I would greatly

> appreciate some feedback.

>

> Regards,

> Jill Fisk

[Guest guest]

From what I have read on here many others have had this and it is a stage to

get thru.

Don't have personal experience of it but really hope some others who have

will answer you.

good luck

Julea )

Truly, it is in darkness that one finds the light,

so it is when we are in sorrow then,

that this light is nearest to all of us.

[Guest guest]

I just wrote in my prior message how " immediate " our son's regression/adjustment

period was. At the end of your rope is a good place to be, means you can't hang

yourself with it. I'll never forget, one mother posted during the adjustment

period, that if her windows were any higher, she'd jump out one of them. Another

one posted that it was a good thing her stove was electric. I've posted about

how difficult it is to go through a whole day and only have bruises and tears to

show for it ( mine). Never mind dinner, a clean house, laundry done, or errands

run. Enlist the help of family if possible. No, not to care for your child, to

care for you. They'll hear the tremor in your voice and be more than happy to

bring you take out, pick up your dry cleaning, bring you some 7-up, eggs,

whatever you're out of. You've got to make sure you are sane enough to handle

the adjustment without taking it out on your munchkin. So go in the garage,

scream, cry, break something, and this is what I always do, laugh, laugh because

it's funny and laugh because it isn't. This won't last forever.

Confused

I am writing at the end of my rope. We have been implementing

a plan for our daughter including numerous supplements one being

enzymes. It seems when we started the enzyme this week we saw her

immediately regress and now unless pulled away she stims all day

long. This is a significant regression and so immediate (the day

she begins taking them). This is our second type of enzyme to try.

I have read that regression is possible, but I wonder if such an

immediate regression is a reaction or simply something we need

to " get through " to see the positive results. I would greatly

appreciate some feedback.

Regards,

Jill Fisk

[Guest guest]

what other supplements r u giving? enzymes with thier releasing

better nutrition can unmask problems with other supplements esp too

high b doses.

it is helpful to give detail like what enzymes you are using.

also what is happening on the intestinal yeast front.

> I am writing at the end of my rope. We have been implementing

> a plan for our daughter including numerous supplements one being

> enzymes. It seems when we started the enzyme this week we saw her

> immediately regress and now unless pulled away she stims all day

> long. This is a significant regression and so immediate (the day

> she begins taking them). This is our second type of enzyme to

try.

> I have read that regression is possible, but I wonder if such an

> immediate regression is a reaction or simply something we need

> to " get through " to see the positive results. I would greatly

> appreciate some feedback.

>

> Regards,

> Jill Fisk

[Guest guest]

> I am writing at the end of my rope. We have been implementing

> a plan for our daughter including numerous supplements one being

> enzymes. It seems when we started the enzyme this week we saw her

> immediately regress and now unless pulled away she stims all day

> long. This is a significant regression and so immediate (the day

> she begins taking them). This is our second type of enzyme to try.

Which enzyme did you start with, and what foods did she eat at that

meal?

Dana

[Guest guest]

-Hi Janet,

In my case I continue to get damage with no obvious swelling. Mayo

did a bone scan to find " activity " . four docs had told me I had no

active PA and all my problems were fibro related.....and 4 docs were

wrong. helped us do a small pole, you may remember, and it

seemed sed rates and PA activity were not related. Most docs still

want some empirical data...observed swelling or elevated sed or

Creactive protien. I remember Cyndi provided us with a transcript

from an experrt chat in which Dr. Barry Waters said that PA can be

weird in that you can have a significant amount of arthritis present

with no visible swelling.

Trust your instincts!!!(You told me this once and it really helped)

If you feel you have PA involvement see another Rheum..don't wait

until your hands are as bad a mine. One of the docs who was wrong

about me is listed in " who's who among american doctors "

Hope this helps some....I was confused and doubted myself for awhile

too,

Marti

[Guest guest]

Hi Amy,

All of what you describe sounds like it " could " be PA.

Yes, you can have good & bad days. My guess is that without

treatment, you would end up having more & more bad days.

I'm not sure, but I would guess that your recent pregnancy & birth of

your child likely had many effects on your possible PA. (pregnancy

affects your body so dramatically it's only logical) I've read posts

saying it helped the Mom's PA and read others that said it worsened

the mom's PA. You should be concerned about MTX if you are nursing

or are considering the possibility of another child in the future.

If your concerns are only because of the warnings of possible side

effects, I urge you to read more, ask more questions of your rheumy.

MTX can have side effects, but so can aspirin. I've taken MTX for

almost 3 years and never had a single negative effect. In fact, it's

been very positive. I could barely walk, type, etc. Today, I am 99%

normal.

At any rate, get all the info you can and keep asking questions.

At least then you can make an informed decision regarding your

diagnosis and treatment.

Stay Well,

[Guest guest]

Amy

I had a reumy who at one visit said my swelling went away and she didn't

think I had pa anymore. That's rediculous. I never had much swelling. I

stopped

using her. My recent first visit with a new one went awful. It only took 10

minutes and I felt like I was having to prove to her that I had it. She said

if I didn't have psoriasis I couldn't have pa. also she said if it didn't

show up in x rays I didn't have it. i feel like i shouldn't tell docs i ,m on

med for depression and anxiety cause then they just think i'm a hypocondriac

nutcase. my mom has pa and several doc have diagnosed me. it's an insideous

invisible disease.

nancy

[Guest guest]

Hi Amy, my PA ( & P) also got much worse after my son was born. And my PA flares

sound alot like yours - bouncing around throughout the day. My presentation did

change a bit after my son was born - my flares last longer, involve more joints

and and are much more severe. Sounds like you are doing a great job of being

your own advocate with your doctor. I hope you find a drug that works for you

quickly. I wish I would have sought treatment right after my son was born. I

waited a long time - almost a year, and my disease was pretty out of control by

the time I started treatment.

take care,

Beth

aimrich28 <aimrich@...> wrote:

~~~My rheumy, who was sure I had PA before I got pregnant, is now

questioning thediagnosis and confusing the hell out of me. I'm not

flaring like I was before so when I went for my follow up, she

thought that it was strange that I was feeling so much better.

Doesn't this arthritis wax and wane? ~~~ Amy

[Guest guest]

Hi, we are pretty new to the enzymes as well. We did the GFCF diet for a couple

of years and we love the enzymes. Good places for more information are

www.danasview.net and www.enzymestuff.com I think those are right!? If not I

will post again in just a minute, sorry. I have been gone this weekend and have

almost 600 messages from all my groups to go through!!

I know not all kids can come completely off the diet with enzymes. The brand

most of us use is Houstons. Their website is www.houstonni.com I don't know

about samples with that company but their prices are really not bad and the

shipping time is quick. Many also have used Kirkman Labs products. Their

website is www.kirkmanlabs.com. You can get samples of products for $3. I have

used MANY of their products, wonderful company. Personally I like the Houstons

enzymes. I could always tell when had eaten off his diet too much. We

have added gluten back quite a bit but with the enzymes I am not seeing any

reaction. I am very nervous about adding any dairy but no one in our family

does dairy very well.

I also use Arbonne's Optimal Digest but that is a MLM (mass level marketing)

company and not everyone likes that. I only joined because my consultant is a

long time Christian friend of mine and I had been looking for products like the

company sells. I like the Optimal Digest because it also has herbs in it but I

use it just for me, not my son. I also take the Houstons enzymes and my IBS has

all but disappeared. I am a life long customer!

The Houston brand comes in capsules, powder and chewables. I started with two

enzymes and am going to add the third soon(many of use use three different

products to get the full range of enzymes). I started with the capsules, I

found they mix really well in ketchup. They don't go in carbonated soda,

volcano reaction. I am so thankful for someone giving me the heads up on that

one!! I so would have tried that. I just got the chewables I ordered while we

were gone so we are going to try those today. I hear they aren't bad tasting.

Can tell you more later!

There are a lot of people out there who medicate and probably need it. I am

blessed to have a son with autism that has responded so well to supplements that

he is only a mild case now. I believe in medication being a last resort and if

your son is not exhibiting extreme behaviors that would need medication there

should be no reason a doctor should give them to you. My opinion only!!!

You don't need a diagnosis to begin supplementation. There are many very

intelligent people on this group who can help you with supplement decisions.

Are you doing any supplementation? If so please post what and if not please

post behaviors you think are troublesome and we can try to help! The red

bottom, cheeks and smelly stools could be yeast. Was he on a lot of

antibiotics? This group can help with that!!!

I hope this helps!

renee030670@... wrote:

My son has been GFCF for about 3 months now and I am interested in starting

enzymes. Also I think he might be having a yeast problem. I am new to all

this and I am so confused on where to start. I wanted to start the enzymes this

summer so he will be on a good path by the time he starts school in the fall.

And he has a red rash on his bum and cheeks and has been having accidents in

his pants again. His bm's have been soft and light in color and very smelly.

That is the way they always were and he was always going in his pants until

we started the diet. Then they went to normal consistancy and he stopped

having accidents. Now we are back where we started. Help!

I thought I read some where that you could get samples. How?

Do I really have to get my 5 yro to take 3 or 4 pills with every meal? Or

more?

What company is more recommended ?

If any one can give me some advice I would really appreciate it.

My son shows sings of Asperger's syndrom. The powers that be in my area are

dragging their feet with a diagnosis. They just keep evaluating him and then

sending him to another doctor or pycologist. So I am doing this all on my own

right now. He is not a bad kid and I do not want to turn him into a zombie

with drugs.

Thanks for all your time

mom of 5

[Guest guest]

> And he has a red rash on his bum and cheeks and has been having

accidents in

> his pants again. His bm's have been soft and light in color and

very smelly.

This can be food intolerance, yeast overgrowth, or a few other things.

> That is the way they always were and he was always going in his

pants until

> we started the diet. Then they went to normal consistancy and he

stopped

> having accidents. Now we are back where we started. Help!

Which diet? If gfcf, consider also removing soy, or giving

Peptizyde/AFP Peptizyde.

> Do I really have to get my 5 yro to take 3 or 4 pills with every

meal? Or

> more?

I opened capsules and mixed them into peanut butter and honey. You

can also use applesauce, or other mixing ideas

http://www.enzymestuff.com/discussionmixing.htm

> What company is more recommended ?

I use HNI for my family with much success

http://www.houstonni.com/

Dana

[Guest guest]

:

You won't know what's wrong until you have all the tests done and you

speak with your doc. I understand how difficult it must be to wait

for that to be done. If it helps at all, I've had Pneumonia before

as well, and for some people it leaves scarring on your lungs. This

may be what is showing up on the x-rays. Just a thought. Again, you

won't know for sure until all the tests are completed.

Hang in there and take care,

> I am so confused. Today my rheumy called me and told me my chest

xray shows

> I have Right upper lobe pneumonia and to go see my regular doctor.

I don't

> feel sick like that at all. I have had pneumonia before, and it

leaves a

> definite impression on you. Anyway, I go see my internist and he

feels also

> I don't have pneumonia, but he isn't sure what is showing on my

films. So of

> course, the bad thoughts start running thru your mind. So now I

have to go

> for a ct scan on Oct. 3. He thinks its just a shadow of something,

and I am

> praying hard he is right! He also had the results of the xrays of

my hands

> and feet that were taken, and my hands were fine, and my feet are

showing

> all sorts of osteo arthritic changes. Now my hands and wrists hurt

worse

> than my feet and the films look fine? I swear, the more tests I

have done,

> the more questions there seem to be. Do I have RA or not? If not,

what on

> earth could it be. From what I read, and what the doctor tells me,

I have

> all the symptoms, so why isn't something difinitive showing up???

>

> Anybody out there have any insight to what might be going on? Boy

would I

> love to hear some theories!!

>

>

>

>

>

>

>