Newbie

January 15, 2001

hi janik

walcome to the group glad you found us.

myself i can not tell you any magical pill to take

away the pain as i can not take even tylenol at the

moment because of a GI problem. i don't lift anything

heavy, i nap and take lots of hot baths. i also have a

wonderfull dr.schools chair insert i sit on to relax

me zzzzzzzzzzz....

try fennel tea

ginger tea (yuck)

i'm still looking for more stuff to try at the moment.

i'm sure someone here will have some ideas for you.

rhoda

--- Janick Masse <janou_pou@...> wrote:

> Hello to all!

>

> I'm a newbie to the list, but I have been lurking

> for the last few

> days, and have got to " know " some of you...

>

> Some info about me. I'm 31, mother of a wonderful 9

> month old baby

> boy and working as a pathologist (laboratory

> physician working mostly

> with a microscope) in a large canadian university

> hospital. I was

> diagnosed last week with severe hypothyroidism.

> However, I came to

> clinical attention for a severe (unable to walk or

> get dressed),

> abrupt onset, polyarthritis. Although I was told

> that polyarthralgias

> are frequent in hypothyroids, according to the

> rhumatologist,

> arthritis (ie objective synovitis with arthralgias)

> is not at all

> typical of hypothyroidism. Hence, I'm presently

> under investigation

> for probable rheumatoid arthritis, with a

> differential diagnosis of

> lupus or rheumatic fever. The rhumatologist has put

> me on vioxx 50 mg

> a day (until his clinical diagnosis is confirmed),

> which I have to

> taper down tomorrow to 25 mg a day. The vioxx

> diminished my symptoms

> about 80% until 2 days ago. The pains and stiffness

> are getting

> progressively worse, and I'm really scared of

> lowering the dose of

> meds... The rhumatologist prescribed prednisone

> " just in case " I

> might need it before my next visit (scheduled for

> next Tuesday). I

> took the week off from work last week, and came back

> to work today

> (where I am as I type).

>

> I guess what I'm looking for here is moral support

> (cuz I'm really

> scared that this diagnosis will ruin my career) and

> ideas on how to

> alleviate the pain (other than medications).

>

> Janick

> from Montreal, Canada

>

> Chat room: chat/

> Web pages for our group:

> http://rheumatoid.arthritis.freehosting.net/

> http://www.rasupport.webprovider.com/

> Change subscription options:

>

_______________________________________________________

January 15, 2001

Welcome Janick.

RA is a very painful disease, and there aren't a lot of non-medication pain

relief options. Before taking prednisone, I would call the doctor and ask

if you can stay on the higher dose of vioxx. It sounds like the vioxx was

helping you at the higher dose. If you were here last week, we had lots of

discussions about the dangers of prednisone. If you can possibly stay away

from it, you will do your bones a big favor. Exercise is very important,

but shouldn't be done while flaring. Stretching and keeping as much

flexibility as you can is painful, but should be done if possible. Some

people like ice, others like heat. Did your symptoms start before your

pregnancy?

a

----- Original Message -----

From: Janick Masse <janou_pou@...>

< egroups>

Sent: Monday, January 15, 2001 1:51 PM

Subject: [ ] Newbie

> Hello to all!

>

> I'm a newbie to the list, but I have been lurking for the last few

> days, and have got to " know " some of you...

>

> Some info about me. I'm 31, mother of a wonderful 9 month old baby

> boy and working as a pathologist (laboratory physician working mostly

> with a microscope) in a large canadian university hospital. I was

> diagnosed last week with severe hypothyroidism. However, I came to

> clinical attention for a severe (unable to walk or get dressed),

> abrupt onset, polyarthritis. Although I was told that polyarthralgias

> are frequent in hypothyroids, according to the rhumatologist,

> arthritis (ie objective synovitis with arthralgias) is not at all

> typical of hypothyroidism. Hence, I'm presently under investigation

> for probable rheumatoid arthritis, with a differential diagnosis of

> lupus or rheumatic fever. The rhumatologist has put me on vioxx 50 mg

> a day (until his clinical diagnosis is confirmed), which I have to

> taper down tomorrow to 25 mg a day. The vioxx diminished my symptoms

> about 80% until 2 days ago. The pains and stiffness are getting

> progressively worse, and I'm really scared of lowering the dose of

> meds... The rhumatologist prescribed prednisone " just in case " I

> might need it before my next visit (scheduled for next Tuesday). I

> took the week off from work last week, and came back to work today

> (where I am as I type).

>

> I guess what I'm looking for here is moral support (cuz I'm really

> scared that this diagnosis will ruin my career) and ideas on how to

> alleviate the pain (other than medications).

>

> Janick

> from Montreal, Canada

>

> Chat room: chat/

> Web pages for our group: http://rheumatoid.arthritis.freehosting.net/

> http://www.rasupport.webprovider.com/

> Change subscription options:

>

January 16, 2001

Janick,

Welcome to our group. You will find lots of support here and people who

have been down this road for many years. We do understand your fear. The

fear is quite normal and most of us experienced it when we were first

diagnosed. Actually, as quickly and as hard as your arthritis hit - may be

a good sign. There are cases where young women in the 30-40 year age

bracket are hit quite severely and then the RA goes into remission and does

not return. I hope you are one of those wondrous cases but if not we will

be here to help you over the hurdles.

As far as pain relief other than medication, we all have to experiment to

see what works for us. My favorite is my electric blanket but I try not to

fall asleep with it on. The blanket is easy to move to the places that hurt

the most. Have you tried visualization? That is quite effective for some

people. That does not mean the pain is in your head only that you use your

head to decrease the pain.

Please don't be afraid of pain medications if you need them. For many of us

they add quality to our lives and allow us to live more normally. When I

was diagnosed over 30 years ago, doctors did not believe in using narcotic

medications for chronic pain. If my pain had been adequately treated for

many of those years, my life would have been richer and more fulfilling. I

can't change those years but I can insist on adequate pain treatment today.

Of course, I want my head clear because I have a full time job so I am

sometimes a nightmare for my doctor.

You also had asked about the flu vaccine, I take it every year and have

never had a problem with it. I also had the pneumonia vaccine and ended up

with pneumonia anyway.

If your have questions or just need to vent, we look forward to hearing

from you.

Pat

January 16, 2001

Janick-

Hi and welcome. My name is LaVina and I too am 31 years old. It is a very

scary thing to be diagnosed with a disease that has no cure. However, (this

may sound weird but...) now is a good time to be diagnosed-as opposed to 5-10

years ago. There are new drugs out now that can really slow the progression

of RA. I am currently on Enbrel and take Vicodan as needed for pain, and

also Voltaren (anti-inflammatory) as needed. Right now I still do everything

I used to do - maybe a little slower at times and maybe with a little more

pain/stiffness/soreness but I still do it. My advice would be to stay as

active as you can, take it one day at a time, and be thankful everything you

can do. I don't think at this point you whould be focusing on whether your

career is over or not.

This is a great support group where you can ask any question you need to -

there are so many wodnerful and knowledgeable people here.

April 1, 2001

,

no you are not the only male. my son is 12 yrs old and has had JRA

since he was 4yrs and was dx with related lung disease when he was 6yrs old.

he is an amazing child and is the bravest man i know. If there is anything we

can do to help you just lets us know. you came to the right place for support.

shelly and jesse

April 1, 2001

,

I already answered a's post, so I hope you saw it. I just wanted to say

welcome to you. I am also in FL, in ville. Where do you live? We do

have a few other males here. One of them is also named Terry, so he signs

off as Ohio Terry and I use Tery - FL (I am female). Again, welcome to our

group. Tery - FL

April 1, 2001

,

Also I forgot to ask (we are a nosey bunch here) what kind of OTC meds does

your doc have you on. Mine is very picky about any OTC meds that I take.

Tery - FL

April 2, 2001

Hi Tery

I am not at all secretive, I just did not want to bore all of you

with my list of OTC meds. And thanks for the welcome. My Doctor has

me taking Glucosamine & Chondroitin 2000/1600mg per day, Vitamin C

2000mg per day and extra strength Tylenol 2000mg per day. He said the

Tylenol should reduce the swelling from another angle from the way

the NSAIDS work. I thought I had heard Tylenol was bad for your liver

but I take them anyway.

I live DeLand Florida (next to Daytona Beach). Daytona is good place

not to be this weekend, the traffic is horrible.

Thanks,

> ,

> Also I forgot to ask (we are a nosey bunch here) what kind of OTC

meds does

> your doc have you on. Mine is very picky about any OTC meds that I

take.

> Tery - FL

April 2, 2001

,

We were neighbors before i moved to Alabama. The kids and i use to live in

Daytona. As a matter of fact, my ex husband still lives there. by the way my

ex and i are best friends. He use to work with a fellow that had RA. Wonder

if you may be that fellow.lol. take care and please consider cutting back on

the tylenol. I use tylenol alot for headaches and i am wondering if that is a

cause of my current state of health since nobody seems to know why iam not

feeling well.

shelly

April 2, 2001

Hi ,

Welcome to the group. You will find many friends here. Everyone is very

helpful.

Me Mom

----------

> From: kwpatb@...

>

> Subject: [ ] Newbie

> Date: Sunday, April 01, 2001 4:37 PM

>

> Hi Everyone,

>

> I am the new guy a was talking about before. My name is and

> I live in Florida. I am registered on your site but I am sending this

> direct, I hope it makes it. I saw that asked about my MTX dose

> and it is oral and the Folic Acid dose is 1mg per day. I am doing

> better than I did last week after my MTX dose, maybe the Folic Acid

> helped.

>

> I also take three 200mg tablets of Plaquenil per day and two 75mg

> tablets of Arthrotec. My doctor also has me many over the counter

> drugs. I have been fighting this for two years now thinking they

> would find a quick fix for me but reality is hitting me now. I am

> very glad I have found your site an I am getting your Emails every

> day. I hope I am not the only male in your group,I know that fewer

> men get RA but I did see that it was still about 25% male.

>

> It Helps To Hear From People Who Know What It Is Like.

>

> Thanks For Being On-Line,

>

> R. WIlson

>

> kwpatb@...

>

February 1, 2004

--- Hi Fiona, what I did is do a search engine on Pubmed.com or other

medical journal sites so you can access articles, or we have articles

here on the " files " link on the left.. The other girls know more

than me here so they'll guide you thru more info! blessings, Iggy

In , " fionahorse2000 " <fionap@i...>

wrote:

> Hi all,

> I'm new here, but unfortunately not new to the pain and hassles of

> implants. I'm very confused though.....where can I get more

> information about the symptoms related to implants ? I have a

myriad

> of questions !

>

> Fiona

February 9, 2004

Ann

Mine were both contsaminated with fungas, basteria and mold. I had them

analyzed by Dr. Blais in Canada.

shari

February 9, 2004

Fiona,

That craving for lemon is a signal to pay attention to your liver. Lemons and other sour citrus are very beneficial to the liver, and helps flush it out. I absolutely love lemon anything, and I realized that it was my body crying out for help, actually my liver. Go with it....our bodies do tell us things we should listen to! I found the liver flushes to be so helpful to me, made me feel great!

Patty

----- Original Message -----

From: Fiona Parkinson

Sent: Monday, February 09, 2004 2:05 AM

Subject: Re: Newbie

Hmm....thanks for this Rogene, gives me much to mull over, and yes, my symptoms haven't progressed in the way these auto-immine diseases usually do...they pitch up, then vanish again.....all except the weight gain ( how I WISH that would vanish !!!) and the hairloss...sounds like good info this, Ann !

Because of my job ( hypno therapy) I have used a lot of hypno on myself to minimise symptoms and help my body cope, and I'm sure I would have been alot sicker if I hadn't done so....my body keeps telling me what it needs...some days it is a long bath with aromatherapy oils and candles, other days it doesn't want me to switch on the radio/TV, the "noise" bothers me, I need peace and quiet..other days I don't feel like eating, or certain foods seem unappealing...when I go with it I'm OK, if I ignore this stuff I definitely get worse. Lately I've been needing to drink a lot of water, which I never , ever do ( I just don't get thirsty, a sign of adrenals/thryoid out of whack). Last month I had the strangest sensation of feeling...well, oily, like I had oil oozing out of every pore, and even inside me, so I couldn't stand the thought of eating anything oily/fatty, but craved stuff like lemons......maybe thats just my brain playing tricks on me, but I'm giving my instinctive "body sense" the benefit of the doubt...

Fiona

April 22, 2004

: it's our pleasure to have you as a member.

Be sure and check out our extensive dessert section in the recipe file.

Some are sweetened with fruit or sucralose or splenda. Have you tried

substituting fruit or even splenda sweetened tea to satisfy your sweet

tooth?

I often mix unsweetened cocoa with water and sucralose for a chocolate

" fix " . Put in a few drops of water at a time until you get the texture that

you like. It's delicious. For a CR " hot fudge sundae " ladle this " hot

fudge " sauce this over a small amount of sugar-free ice cream (although in

your case, you probably can't tolerate the artificial sweetner they use in

the ice cream).

on 4/22/2004 3:16 PM, Noblet at cynth25@... wrote:

> so a little

> overweight. entirely due to sugar consumption which, at times, I just

> cannot break the habit. I finally discovered that I can tolerate

> Splenda once in awhile, so hopefully that will help me over the rough

> spots. Other sugar substitutes give me headaches and just seem to be

> toxic. At any rate, your site is so helpful and e-mails from your

> group are informative and do not come in overwhelming amounts, which

> is nice. Thanks for having me.

April 28, 2004

Hi 264:

Yes, the fasting issue is interesting. Since Dr. Spinders's mice

were fed three times a week at 9:00 am I guess we can assume that

fasting is not sizeably deleterious. Whether it provides added

benefit would be good to know. Is it possible to get the citations

for the studies you mention below as being referenced in the November

2003 issue of 'Health'?

My guess is that, whatever the difference, the most part of the

benefit comes from the decline in calories. But it would be nice to

find good evidence for what the effects of fasting really are.

Rodney.

I assume the 'Health Magazine' you refer to is the same one as the

website: www.health.com/health/ Unfortunately access to the

website is only available to magazine subscribers.

>

> All the talk about the mice research is interesting, but the one

> thing that hasn't really been explored is the fact that they only

> ate everyother day. So is it the calorie reduction or the fasting

or

> the combination that provides the benefit?

>

> The November 2003 issue of Health magazine contains an article

> quoting studies that intermittent fasting offers even greater

> benefits than drastically cutting back on calories every day.

> According to the article, The National Institute on Aging is

> organizing a study to see if eating only during a 4 hour period

each

> day and fasting for the remaining 20 will improve glucose

metabolism

> and cardiovascular health. (Sorry, couldn't find an online version

> of the article)

January 2, 2007

Please know that you are not alone. There are many people here and in your

community that will be there for you. However, I think you are feeling alone

because there are not as many people to speak with regarding symptoms and if

that is the case, you came to the right spot.

I did not have any real symptoms, pre-diagnosis. However I was having a lot

of fatigue and started gaining weight that I just could not get off. (I

know most CML side effects show weight loss, but a few of us experienced weight

gain.) After starting on 400 mg of Gleevec and increasing every two weeks to

800 mg, I plain felt lousy. Nausea, vomiting, bone pain, muscle pain and

hemorrhage, among the worst. However, after I reached the highest dose for

about 30 days, most of the worst of it subsided and I found ways to lessen

their

severity.

It is sometimes tough to discern what symptoms are caused by medication, CML

or something else (insert getting old, old sport injury, etc.) however, over

time you will learn to differentiate them.

I am sorry to hear of your diagnosis, but over time you will feel better and

get used to your new life.

Happy New Year.

With warm regards,

Matt

ville, FL

DX January of 2005

Gleevec Since May 2005

Father of 3

_mtmaynor@..._ (mailto:mtmaynor@...)

In a message dated 1/2/2007 8:34:01 A.M. Eastern Standard Time,

godeepdive2004@... writes:

Hello everyone.

My name is and I am a newly diagnosed CML patient. I was

diagnosed on December 13 2006, and after confirmation that I indeed

had the bcr/abl chromosone I started gleevec on December 21 2006.

I am a breast cancer survivor, (diagnosed March 2004, 2

lumpectomies, chemo, and radiation all completed by January 2005),

so I am no stranger to the world of oncology and all the stresses

that go with it. This time however, I have been feeling

more " alone " as I have been unable to find a support group in my

area. I was quite pleased to have stumbled on this group, and

although the circumstances really suck for all of us, I am glad to

have the opportunity to meet you all. I have read many of the

postings and am thankful that they are there for me.

A question I have for everyone right away is " how awful did you feel

at the beginning of all this? " . Everything I have read leads me to

believe I should feel a lot better than I do. I don't know my

numbers yet...so I can't tell you what they are, but I was diagnosed

in the chronic phase. I feel really crappy all around though.

Severe fatigue, pain under my left ribs (that seems to be abating

though), dizziness, just plain old wonky. Those are the symptoms I

had before diagnosis and still have....of course since gleevec I

have added some side-effects to go along with the symptoms. I am

having difficulty discerning which is which though. How long does

it take for the symptoms of the disease to abate?

Thanks a lot

January 2, 2007

Hi brenda welcome so to speek.You are one year later of my diagnosed I had cml

wc 154000 I had gleeces 800 for 2 weeks AND I FELT BAD AFTER YOU GET TO 400

THINGS I HOPE WILL SETTLE DOWN FOR YOU dec 23 05 was my timeof diagnosed.

[ ] Newbie