Re: Re: newly dx

[Guest guest]

In a message dated 16/01/2006 13:30:06 GMT Standard Time,

john_colbey@... writes:

Have read a few messages and was wondering if anybody else have been given

folic acid to take alongside the Methotrexate to relieve the symptoms?

{Editor's Note: Absolutely. It is almost universally done here in the US.

Kathy F.]

Hi ,

...................and I am pretty sure here in the UK too.

[Guest guest]

Hi ,

I have been on mtx for almost two years combined with folic acid and Remicade.

All was fine until they tried to increase my dosage to 6 pills (2.5mg) and then

I experienced mouth sores, BIG TIME. I tried taking more folic acid, but

nothing helped. The doctor did give me a mouth wash which helped for short

periods of time, but told me if I was to remain on this drug long term, we

needed to drop the dosage as I couldn't live with the mouth sores. I dropped

back down to 5, then 4, then 3 and while the mouth sores cleared up, my mouth

has remained 'sore' and sensitive. I ended up stopping the mtx all together,

but still my mouth is extremely sensitive. That was in August or September, but

recently I have had a minor flare in my right hip which has caused me to return

to 3 pills per week. So far no increase in mouth pain, but it's too early to

see if it helps with the pain...

And there you have it....

[Guest guest]

I had been on remicade and mxt for about a year and a half and lost my insurance

so went on my husbands and started my first humira injection on the 3rd of

january along with taking mxt pills at home. i gave myself my first injection

on monday the 9th and did pretty good, only drew a little blood and a bruise

about the size of a quarter, but no pain and it didn't hurt at all. i was

really scared to give myself the injection for fear of doing it wrong, but so

far so good. i am also on prednisone and feel like i can do anything. i am 53

years old and live in napa, ca. i'm having an ultrasound done on my legs to

rule out any blood clots because i have so much pain in them from the knees

down. i have to say my rhumy dr. harrington in napa has been my god for the

last 2 1/2 years. he and his staff are absolutely fabulous. i call him the

energizer bunny because he is always full of energy and makes you feel better

just watching him move. i have been very lucky compared to some of

the other members of this group. i read these postings and it just breaks my

heart to hear about how much pain some of them are in. i know what that feels

like and have been on my own regimin of medications for the pain. i don't have

the psoriasis on my skin, only had it on my scalp, but it cleared up completely

with my first remicade treatment 2 years ago. my husband gives me massages to

my legs and feet or where ever else i'm hurting. i'm back to work now and

hoping to continue on my humira. i'm receiving it for free because i enrolled

in a patient assistant program my rhumy gave me so they pay $300 a month towards

the cost for 6 months. i hope to have blue cross coverage by april 1st so maybe

then i can get it covered by them, if not i will apply to humira again for

assistance. if anyone's interested in this program, please let me know and i

will give you the information. hope everyone has a good week

martincoyless@... wrote:

In a message dated 16/01/2006 13:30:06 GMT Standard Time,

john_colbey@... writes:

Have read a few messages and was wondering if anybody else have been given

folic acid to take alongside the Methotrexate to relieve the symptoms?

{Editor's Note: Absolutely. It is almost universally done here in the US.

Kathy F.]

Hi ,

...................and I am pretty sure here in the UK too.

[

[Guest guest]

hi i donot have these things but am here for anyone to talk to that needs me god

bless you all, i am so sorry for all of the pain and trouble that you go through

everyday. you are troopers and heros in my book. i donot know what to say really

except please hang in there and have faith please donot give up love you all

tina

[ ] Re: newly dx

>HI ....I too am new to this cite...diagnosed in April....have been on gleevec

with some

success....the white count is down but the side effects are horrific.... I too

don't know what

all the numbers mean. My dr (onc, hemotologist) says I'm health....in the mean

time I have

terrible pain in both legs (treated for gout), terrible water retention...

chills, nausea and my

face is so swollen, it's distorted. (I used to be pretty) Am taking 400 mg

daily....wish I

could cut it down but doc refuses. Does this ever get better? And did I mention

uncontrollable diahrea. I have trouble losing weight. Hanging in there.

> Hi all, I am new to this message board and new to this disease. I was

> dx this past may. I am taking the Gleevic without much luck..side

> effects. My onc. says this is the last try with this drug. Either the

> drug or the cml crashed my hormone levels..I cryed for 2 weeks.Was put

> on hrt and have at least stopped crying.My vision has gotten so bad it

> is effecting my job.( i am a heart monitor tech at local hospital) I

> like my onc. alot; but guess I don't ask enough questions cuz I have

> no idea what all these posts are about. I know my spleen is enlarged;

> but it only hurts when the cat or dog walks across it. I am not sure

> if I am supposed to be having more tests; wouldn't the onc say so? All

> I have had is the bone marrow fish, and the cardiac stress (after

> chest pain)Blood draws every other day and now 2 monthly.How do you

> all find out all your levels, and what do they mean? All I know is my

> wbc is down to 65 from 135. What else do I even ask? My weight loss is

> starting to worry me a little. Is not that I don't have any to lose;

> but does it slow down a little? No matter what I eat or drink...it

> still comes off. Please help the newby figure this all out. Thanks

>

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