Re: newly dx

September 24, 2004

Hi there sugar,

How are you doing? I know it's scarey when you get that diagnosis. You've got to give yourself time to accept it. There are lots of people here who can help you with that.

My name is Suzie & I've has HCV since 1969 & I have cirrhosis. You can live with this disease for many,many years - I have. I've been on treatment(tx) twice but did not respond. I know many people though who have cleared the virus & I will be trying again within the next few months.

So, relax & give your mind a chance to catch up.

Suziesugarmagnolia28613 <sugarmagnolia28613@...> wrote:

hi i was just dx'ed with hepc..And i'm more than a little scared.I was just wondering if anyone ,could tell me if I'm crazy or not..For years I have been feeling "sick" always feeling like I'm gonna puke, bruising real easy,I shake and twitch alot,and I have severe cramping in my whole body..Is this normal? I still have gotten my biospy,but that will be at the end of thios month..Any way if anyone could ans these ??'s for me that would be great.. thk u.

Next time I'm coming back as a cat .

September 26, 2004

Hello Newly Dx,

Hang in there and breath.

I was pretty darn scared in the beginning too - and had

tons of questions. I have a website set up that can maybe

answer a few of your questions and I've got some diet tips

on there too. To answer one of your questions - No, you are

not crazy. Many of the things you mentioned could be possible

symptoms of hepC. If your liver is challenged and toxic from

inflammation & hepC you could not be absorbing your nutrients

and your liver not filtering your blood properly which could

result in all kinds of 'symptoms' down the line. I had horrible

headaches, was tired alllll the time, and I was almost fired

from work for forgetting things and just had a general lack of

enthusiasm about anything. HA! Know that you are not nuts!

And know there are solutions. Ask alot of questions - please

find out your genotype - and don't feel pushed or pressured into

starting INF TX. There's lots and lots of opinions here

concerning TX and for me I'm a genotype 1a and have read that

most genotypes 1a & 1b just don't respond to TX so I chose not

to do INF TX and have been quite successful with Alternative Tx!

Today I feel great and my numbers have been way way down for

years now. So please ask questions and feel comfortable with

what your own heart tells you.

Hope this helps.

There's lots of us here to help with big hearts.

Love,

=====

(`'·.¸(`'·.¸ ¸.·'´) ¸.·'´)

«´¨ Love,

** ¨`»

(¸.·'´(¸.·'´ `'·.¸)`' ·.¸)

¸.·´

( `·.¸

`·.¸ )

¸.·)´

(.·´

`*.

*.

The whole world can love you, but that love

will not make you happy. What will make you happy

is the love coming out of you. That is the love that will

make a difference.

~~~ Don Ruiz ~~~

http://alternativehopeforhepc.com

http://alternativehope.royalbodycare.com (membership discount pkgs.)

***Free Audio Tape & Info Pak - Call: 877 367-9875***

The Q2 Energy Spa - http://alternativehopeQ2energy.com

January 14, 2006

Hi.. I've been on Methotrexate for almost 2 years at 1cc / week and have not

had any side effects to speak of.. Maybe fatigue, but nothing that going to bed

early doesn't fix. I guess being sun sensitive is a side effect but I always

wear sunscreen so I've not been too affected by this..

Drugs are different for everyone, so if this one doesn't work for you (though

it took me at least 3 months to notice an improvement) do try another drug..

there are many out there so don't feel that you are limited.

Wishing you well! in Ottawa, Canada

dudette1967 <tish@...> wrote:

Mild P, fibro x14 yr.unbearable joint pain to RD.DX PA Sjorgrens,

Started MTX.First dose last thurs 4pm. very exhausted and naucious by

bedtime.Wiped out fri, joints feel tiny bit better, but still

exhausted sat sun,Diarrhea mon, yeast infection starts tues, still

wiped out but unable to sleep. slept good tues night, Wed fatique

easily, still have yeast,slight sore throat.Dreading thursday mtx

dose.Is this how it goes every week or do sx get better and SE's

decrease?How long for all benefit felt and SE's Decrease? I was

already losing my hair before and now it's really falling out. just

turned 39 yesterday and am female.Have a 5and 7 Y/o. Are you sun

sensitive the entire week or just a day or two after pills. How long

do people take this? Does PA go into remission? Is there a med that

has fewer side effects and doesn't make you sun sensitive. How often

should i have blood work. I don't have another app't for six weeks.Did

any one else get a yeast infection?(ladies)did yogurt work or do treat

more agressively? And does it come back often if your on MTX long

term.? Sorry for all the questions but I have been miserable this

week, with not much improvement in PA and not liking the idea of

another few weeks like this one befor calling it quits on this med. I

have good RX ins. Thanks to all of you and your sharing. I finally had

some hope when i found this site after dx given that i wasn't a

hypochondriac or wimp. Sorry so choppy sentences huge fog also problem

with mtx.

January 14, 2006

Hi Tish...sorry to hear that your having trouble with the side

effects.

I can answer a couple of your questions...

1) You can remain on MTX indefinately as far as I know assuming your

liver enzymes remain normal. That's my plan.

2) PA can go into remission. For many it does. For others it doesn't

and I fall into that category. No rhyme or reason why it does or

doesn't, although most people have identified triggers, ususally

foods that aggravate your symptoms. I don't drink milk, eat eggs or

peanut butter. Those are my triggers. Unfortunately, this doesn't

alleviate my joint problems, just the P.

3) There are other DMARDS(disease modifying drugs) you can try if

side effects from MTX don't wane or add one of the Biologics like

Enbrel or Humira. Studies seem to indicate a coctail approach to

treating P/PA is most effective meaning, take a DMARD like MTX

and a Biologic like Enbrel at the same time.

4) Your doctor should definately be checking your blood on a regular

basis, usually every 4-6 weeks. Maybe even every 2 weeks at first or

when you increase the dosage. The longer you're on it and bloodwork

comes back normal, the longer you can go. I wouldn't go more than

three months between testing.

5) Did your doctor prescribe folic acid pills for you? If not he

should. It helps minimize the side effects, especially stomach

problems. I recently learned that MTX actually keeps your body from

processing folic acid, but for some reason you can still take folic

acid supplements to prevent or subdue the side effects and the MTX

still works. Go figure.

Michele

Dallas

January 15, 2006

Hi all again

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.]

> Mild P, fibro x14 yr.unbearable joint pain to RD.DX PA Sjorgrens,

> Started MTX.First dose last thurs 4pm. very exhausted and naucious by

> bedtime.Wiped out fri, joints feel tiny bit better, but still

> exhausted sat sun,Diarrhea mon, yeast infection starts tues, still

> wiped out but unable to sleep. slept good tues night, Wed fatique

> easily, still have yeast,slight sore throat.Dreading thursday mtx

> dose.Is this how it goes every week or do sx get better and SE's

> decrease?How long for all benefit felt and SE's Decrease? I was

> already losing my hair before and now it's really falling out. just

> turned 39 yesterday and am female.Have a 5and 7 Y/o. Are you sun

> sensitive the entire week or just a day or two after pills. How long

> do people take this? Does PA go into remission? Is there a med that

> has fewer side effects and doesn't make you sun sensitive. How often

> should i have blood work. I don't have another app't for six weeks.Did

> any one else get a yeast infection?(ladies)did yogurt work or do treat

> more agressively? And does it come back often if your on MTX long

> term.? Sorry for all the questions but I have been miserable this

> week, with not much improvement in PA and not liking the idea of

> another few weeks like this one befor calling it quits on this med. I

> have good RX ins. Thanks to all of you and your sharing. I finally had

> some hope when i found this site after dx given that i wasn't a

> hypochondriac or wimp. Sorry so choppy sentences huge fog also problem

> with mtx.

>

January 16, 2006

Hi , I have been taking MTX for a year now and was put on folic

acid right along with it. My rheumy said it lessens the side

effects and it certainly has for me...I have absolutely no side

effects at all except that it has helped the pain tremendously! I am

up to 8 pills of 2.5 mg once a week. Good luck to you!

Sharon

> > Mild P, fibro x14 yr.unbearable joint pain to RD.DX PA Sjorgrens,

> > Started MTX.First dose last thurs 4pm. very exhausted and

naucious by

> > bedtime.Wiped out fri, joints feel tiny bit better, but still

> > exhausted sat sun,Diarrhea mon, yeast infection starts tues,

still

> > wiped out but unable to sleep. slept good tues night, Wed fatique

> > easily, still have yeast,slight sore throat.Dreading thursday mtx

> > dose.Is this how it goes every week or do sx get better and SE's

> > decrease?How long for all benefit felt and SE's Decrease? I was

> > already losing my hair before and now it's really falling out.

just

> > turned 39 yesterday and am female.Have a 5and 7 Y/o. Are you sun

> > sensitive the entire week or just a day or two after pills. How

long

> > do people take this? Does PA go into remission? Is there a med

that

> > has fewer side effects and doesn't make you sun sensitive. How

often

> > should i have blood work. I don't have another app't for six

weeks.Did

> > any one else get a yeast infection?(ladies)did yogurt work or do

treat

> > more agressively? And does it come back often if your on MTX long

> > term.? Sorry for all the questions but I have been miserable this

> > week, with not much improvement in PA and not liking the idea of

> > another few weeks like this one befor calling it quits on this

med. I

> > have good RX ins. Thanks to all of you and your sharing. I

finally had

> > some hope when i found this site after dx given that i wasn't a

> > hypochondriac or wimp. Sorry so choppy sentences huge fog also

problem

> > with mtx.

> >

>

July 29, 2007

Hi Maurene,

I am not real good with the technical stuff but it sounds to me the Gleevec

is working somewhat since it is lowering you wbc. I was dxed in April of 04

and been on Gleevec since. I was lucky and it put me in remission very fast

but I do suffer side effects that make me unable to work. The thing is my

docs tell me since it is working to just handle the side effects. But some

people do have severe side effects to the point they cannot take Gleevec,

what sort are you having? I have fatigue, bone pain, nausea, and I also have

trouble with eating.

I can tell you that I have blood work once a month and see my doctor every

three months. I would ask if the Gleevec is causing damage to your organs

before I would go off of it. I know my side effects were very bad at first.

Terry

On 7/29/07, maurene59 <maurene59@...> wrote:

>

> 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

>

July 29, 2007

>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.