An Introduction

[Guest guest]

Hi Ed,thanks for the interesting introduction. I'm glad to hear that

you are starting MTX because it works really well for many people.

Although you MAY suffer some side effects from the MTX, you should

also be aware that few people experience the kind of debilitating

side effects that you fear. Most rheumies prescribe taking 1 mg of

folic acid daily when on MTX. For many, this is sufficient to quell

stomach upset. Perhaps you should ask your rheumy if you should pick

up some folic acid tablets before starting MTX. Very, very few people

llose any hair on the dosages of MTX that we use to fight PA. Hair

loss is more common on the higher dosages used to fight cancer.

Those doses are over 40 times greater than what you'll be taking. If

you have a stomach medicine at the ready (an over-the-counter one

that works for you should be all that might be necessary), I doubt

that you'll feel unable to take care of your sons. If you are

concerned, perhaps you should start your MTX on a Friday night so you

won't have to worry about getting the boys ready for school for two

days after taking your first dose. Many people find that injecting

MTX removes the nausea. It took about 2 months before MTX kicked in

for me and when it did, I felt better than I had in years. I had to

stop taking it when it caused my liver readings to go sky high.

While on it, I had mouth sores and unceasing fatigue and brain fog

but I was glad to experience those things in order to be freer of

pain than I thought possible. All-in-all, my MTX experience was a

positive one. If MTX doesn't work for you, there are other medicines

out there including Remicade, Enbrel and Humira that work for many

people so don't despair - there is a lot of ammunition in the arsenal

to help you fight this disease.

Wishing you wellness,

Kathy F.

> Hi everyone,

> My name is Ed. I've been getting lots of great info from this group

> ans thought I'd take a minute to say hello and introduce myself.

> I'll be 40 this June, and have been diagnosed with PA since I was

18.

> It started slow for the first few years. Then, I had my first

> debilitating bout when I was 27. I remember not being able to move

> throughout the holidays and suffered a major depression. I went to a

> Rhumy and got things under control with Plaquenil and a few other

meds

> whose names escape me now. This worked great for several years. I

then

> weaned myself off the meds and had a remission that lasted about 5

> years. I call it a remission, because the pain was managable with

> OTC's most of the time. During this time I had alot of bad muscle

> spasms, though.

> Now, for the past several months, I've benn progressively getting

> worse with the PA. This time it is the worst its ever been.

> I now have a great Rhumy. I've been on Bextra for the past few

months

> with some success, but my areas affected continue to expand and

> worsen. My worst problem are my feet and toes. I can barely walk

alot

> of the time. X-rays show bone erosion. Also affected (very painful)

> are my Knees, hands and fingers, elbows and neck. I had Arthoscopic

> surgery in January for a severely torn rotator cuff. The pain from

> that has been constant throughout the years. I probably had 6 or

seven

> different x-rays and seen 4 or 5 different doctors, but all the

Doc's

> said that it was the PA, and I needed to learn to live with it. So,

I

> did. for almost 20 years. At times, I would do something simple with

> that arm and wnd up in excruciating pain for weeks or months from

it.

> I don't want to ramble on about the shoulder anymore, other than to

> say that after 2o years of having it misdiagnosed by many doctors, a

> nurse practitioner ordered an MRI. It showed a severe tear almost

> entirely through the whole cuff, all covered in various stages of

scar

> tissue. The initial tear happened and diagnosed as whiplash about 20

> years ago. Over the yeats, it turns out that it kept tearing a

little

> more and a little more until finally last year, I pushed a chair and

> heard a loud snap accomponied by incredible pain and could no longer

> move my arm. Thats when I finally got it properly diagnosed and

> repaired. I went to New England Baptist and had a great Ortho Surg,

> who does alot of work for the Celtics and Red Sox. He also is a

> proffesor at HArvard. My tear was so extensive, and the scarring so

> great that the Doc videotaped my whole procedure and uses it at

> Harvard for teaching purposes. So, now that painful shoulder blade

is

> just about my only good joint!

> But, back to my story..sorry for the shoulder regression!

> I'm going to be taken my first dose of MXT tomorrow. I tend to have

> problems with most of the areas affected by possible side effects

> listed already. Including recurring mouth csnkers, asthma, history

of

> ulcers, etc.. So, I'l very afraid of the side effects, although I do

> tolerate most meds very well (except for most Arthritis meds affect

my

> stomach).

> I'm wondering what sort of time table I'm looking at for expecting

> side effects.

> If I'm going to have nausea, for instance when am I most likely to

get

> it. How long after taking my dose? I am trying to figure out the

best

> time to take it, so I might be able to plan for symptoms a little.

> I'm an at-home dad (not single, thank God!!) with two VERY actice

> Autistic children aged 9 and 12( a whole other story for a different

> chat room, my 12 y.o. son is also Diabetic and Insulin dependent).

> But, I need to be able to take care of them in the afernoons and get

> them ready for school every morning. So, if say stomach reactions

> usually occur in the first 12 hours, I might be able to time my dose

> so it should hit while they're in school.

> And, vainly I ask when hair loss might start, if its going to.

> I have lots of questions and promise they will be brief. I'll ask

them

> during the week.

> If anyone has info that might help me, thanks in advance. Sorry this

> is sooo looooong!

> God Bless,

> Ed

[Guest guest]

Dear Ed,

Sorry to hear about how difficult things are for you. Are you taking MTX in

pill or injection form? I started on pills and became extremely ill to my

stomach and intestinal distress, but it only lasted for 1 or 2 days after taking

the medication. I lost a little bit of hair, but it all came back. If you

would like to ask more specific questions, you can ask thru the group or my

personal email address.

Please take care,

Carol M. in CA

[Guest guest]

Ed,

Here's the suggestions and rationale my doc gave me when taking mtx.

With a late evening meal (during the meal) when I can go to bed early and sleep

late the next day, if necessary. I've never had a stomach problem.

The early to bed rationale - you will sleep through the minor side effects

associated with the ingestion of the pills.

There is a mixed opinion on whether to take Folic Acid every day expect on mtx

day or to take it daily. But Folic Acid is supposed to help minimize side

effects such as canker sores and hair loss.

I do get a bit foggy for a couple days after my mtx day.

Personally, I'm fine in the morning but later in the day often want/need a power

nap. You might consider a nap before your boys return home.

Sure hope this helps Ed.

Sandy from swohio

Ed <ed@...> wrote:

Hi everyone,

My name is Ed. ...I'm going to be taken my first dose of MXT tomorrow. ...I'm

very afraid of the side effects, although I do

tolerate most meds very well (except for most Arthritis meds affect my

stomach).

I'm wondering what sort of time table I'm looking at for expecting side effects.

If I'm going to have nausea, for instance when am I most likely to get it. How

long after taking my dose? I am trying to figure out the best

time to take it, so I might be able to plan for symptoms a little.

I need to be able to take care of them in the afernoons and get

them ready for school every morning. So, if say stomach reactions

usually occur in the first 12 hours, I might be able to time my dose

so it should hit while they're in school.

And, vainly I ask when hair loss might start, if its going to.

I have lots of questions and promise they will be brief. I'll ask them

during the week.

If anyone has info that might help me, thanks in advance. Sorry this

is sooo looooong!

God Bless,

Ed

[Guest guest]

Hi ED...and all other new members! I used to take Metho in pill form and it

did make me sick but I now inject without any problems. Might be something

you want to try?

As far as hair loss...taking Folic Acid can help! Good Luck! (Va.)

[Guest guest]

Hi Ed,

My name is Keli i'm 25 with Pa, onset was about 12 yrs old finally

was diagnosed 4 yrs ago. I never took MXT due to the fact that i'm

female and have not had any children. I've been on various drugs and

I have to say the current combo of Enbrel, Vioxx and Sulfasalizine

has done a lot of good for the pain and inflammation. My guess would

be take it in the evening so you have the side effects at night and

could maybe sleep it off. Being that i've never taken the drug, i

cant' say for sure. I've had my share of side affects as well. I

actually when I was 16 ruptured my tendon in my right ankle, though

it took years to discover the problem and had surgery to repair it.

I too had a lot of scar tissue and the doc could not believe how

much. He actually said the tendon had ripped right in half which

they didn't realize in the mri. I hope you do get some answers and

relief from the pa pain.

Keli

> Hi everyone,

> My name is Ed. I've been getting lots of great info from this group

> ans thought I'd take a minute to say hello and introduce myself.

> I'll be 40 this June, and have been diagnosed with PA since I was

18.

> It started slow for the first few years. Then, I had my first

> debilitating bout when I was 27. I remember not being able to move

> throughout the holidays and suffered a major depression. I went to

a

> Rhumy and got things under control with Plaquenil and a few other

meds

> whose names escape me now. This worked great for several years. I

then

> weaned myself off the meds and had a remission that lasted about 5

> years. I call it a remission, because the pain was managable with

> OTC's most of the time. During this time I had alot of bad muscle

> spasms, though.

> Now, for the past several months, I've benn progressively getting

> worse with the PA. This time it is the worst its ever been.

> I now have a great Rhumy. I've been on Bextra for the past few

months

> with some success, but my areas affected continue to expand and

> worsen. My worst problem are my feet and toes. I can barely walk

alot

> of the time. X-rays show bone erosion. Also affected (very painful)

> are my Knees, hands and fingers, elbows and neck. I had Arthoscopic

> surgery in January for a severely torn rotator cuff. The pain from

> that has been constant throughout the years. I probably had 6 or

seven

> different x-rays and seen 4 or 5 different doctors, but all the

Doc's

> said that it was the PA, and I needed to learn to live with it.

So, I

> did. for almost 20 years. At times, I would do something simple

with

> that arm and wnd up in excruciating pain for weeks or months from

it.

> I don't want to ramble on about the shoulder anymore, other than to

> say that after 2o years of having it misdiagnosed by many doctors,

a

> nurse practitioner ordered an MRI. It showed a severe tear almost

> entirely through the whole cuff, all covered in various stages of

scar

> tissue. The initial tear happened and diagnosed as whiplash about

20

> years ago. Over the yeats, it turns out that it kept tearing a

little

> more and a little more until finally last year, I pushed a chair

and

> heard a loud snap accomponied by incredible pain and could no

longer

> move my arm. Thats when I finally got it properly diagnosed and

> repaired. I went to New England Baptist and had a great Ortho Surg,

> who does alot of work for the Celtics and Red Sox. He also is a

> proffesor at HArvard. My tear was so extensive, and the scarring so

> great that the Doc videotaped my whole procedure and uses it at

> Harvard for teaching purposes. So, now that painful shoulder blade

is

> just about my only good joint!

> But, back to my story..sorry for the shoulder regression!

> I'm going to be taken my first dose of MXT tomorrow. I tend to have

> problems with most of the areas affected by possible side effects

> listed already. Including recurring mouth csnkers, asthma, history

of

> ulcers, etc.. So, I'l very afraid of the side effects, although I

do

> tolerate most meds very well (except for most Arthritis meds

affect my

> stomach).

> I'm wondering what sort of time table I'm looking at for expecting

> side effects.

> If I'm going to have nausea, for instance when am I most likely to

get

> it. How long after taking my dose? I am trying to figure out the

best

> time to take it, so I might be able to plan for symptoms a little.

> I'm an at-home dad (not single, thank God!!) with two VERY actice

> Autistic children aged 9 and 12( a whole other story for a

different

> chat room, my 12 y.o. son is also Diabetic and Insulin dependent).

> But, I need to be able to take care of them in the afernoons and

get

> them ready for school every morning. So, if say stomach reactions

> usually occur in the first 12 hours, I might be able to time my

dose

> so it should hit while they're in school.

> And, vainly I ask when hair loss might start, if its going to.

> I have lots of questions and promise they will be brief. I'll ask

them

> during the week.

> If anyone has info that might help me, thanks in advance. Sorry

this

> is sooo looooong!

> God Bless,

> Ed

[Guest guest]

Welcome Yanosz,

Its a shame we have to meet under these circumstances, but glad you have found

this group. You will find much information and support. I am a 28 year old

female, mother of two, ailments too many to list. I've been unable to work for a

little over 3 years now. I live in Lake Placid, New York and will be buried in

snow for the next 5 months,,,, as I'm sure you know what that feels like ,,,

take care and be well.

kerri sue

Dennis W <betnden@...> wrote:

Every time I start feeling sorry for myself, I always seem to find someone

worse than me. I'm sorry you have to deal with all that in your relative youth.

Which leads me to the 'punch line'. Just what do you consider a " classic car " ???

I have about 10 pre-1970 in various states of restoration/storage, All Fords.

Dennis

[ ] An Introduction

Hi all,

I thought I'd take a minute to write an introduction into the

complicated world that is... Me... Call this an exercise in vanity if you

like. *smile*

I am a 27 year old male, residing in Two Rivers Alaska with my partner Rick,

my two Anatolian Shepherd service dogs, both boys, Dewey and Turk, and sled

dogs which Rick raises and trains.

Rick is a professional sled dog racer and runs a sled dog school and touring

company. I am a network securities Consultant/Administrator and I work out

of my home. My illnesses being what they are, I may not be able to work

forever but I am trying my best...

I was abused from infanthood till my eighteenth birthday. I was abandoned

by my family and grew up in various state institutions as a ward of the

state. I have several mental diagnoses and I deal with them the best way I

know how...

On the physical front, I am a chronic pain sufferer, (who with my probs

isn't?), who suffers from Fibro , Reflexive Sympathetic Dystrophy

and a condition called Ankylosing Spondylitis. This last is an autoimmune

disease in which the immune system attacks the joints...

I also have AML, acute Myeloblastic Leukemia. I have been on chemo for 7

years and, although I am not in remission, I am not any worse either. This

of course means I do not qualify for a marrow transplant since I'm not sick

enough...

Some of the things I enjoy are reading, writing poetry, blogging, email

lists, playing music, listening to music, cooking, traveling, running dog

sleds, training dogs, herbalism, research and classic cars.

I suppose that's all for now. I look forward to getting to know all of you.

Yanosz Descouedresz

[Guest guest]

Call of the Wild? Great movie! I've got a copy of it around here

somewhere. The cartoon was better than the movie, I think but that's just

my opinion.

Yan

Re: [ ] An Introduction

> Welcome, Yanosz!

>

> I'm so sorry to hear that you have had such a difficult set of challenges

in

> your young life. Glad to see that your sense of humor doing just fine.

>

> Why can't I get memories of " Call of the Wild " out of my head now?

>

>

>

> Not an MD

>

[Guest guest]

Hi,

Yes, Rick has been running in the Iditarod since 1976 and has won the race

five times...

If I may ask, where did you go to learn about sled dogs? Do you remember

what the name of the place or company was? Just curious is all...

Yan

Re: [ ] An Introduction

> Welcome to the group, Yanosz. This is a good place to come for support

> and sympathy. Our moderators, a and , keep us well informed

> about all kinds of arthritis and autoimmune diseases. It is nice that

> you are able to work out of your home; maybe because of that you'll be

> able to work longer.

>

> I went to Alaska the last of May and into June, and I loved it! The

> first week was a cruise in the Inside Passage, and we docked at

> Ketchikan, Juneau, and Scagway. Then we went by train up into the

> interior, into Denali National Park, and finally to Fairbanks.

>

> One tour that we took was to see and learn about sled dogs. It was

> fascinating to see how the dogs are trained and how obedient they are.

> We also went to a slide show shown by another sled dog husband and wife

> team. Also, when we took a riverboat tour in Fairbanks, we saw some

> more sled dogs. Does Rick run his dogs in the Iditerod?

>

> I really enjoyed my visit to Alaska. The scenery was breathtaking, and

> there were the prettiest, biggest flowers everywhere, except on the

> glaciers, LOL. It was really weird to see the sun just setting after

> midnight.

>

> But I'm afraid I couldn't stand it in the winter. Right now in North

> Carolina, I'm freezing. I hope you have a very warm place with lots of

> lights. I wonder how cold it is there now. How do you cope with the

> long hours of darkness? Does it make you depressed?

>

> I was lucky enough not to get rheumatoid arthritis until I was in my

> sixties. That was five years ago. It's well-controlled most of the time

> by Enbrel, one of the biologics, and also Celebrex.

>

> Again, welcome aboard.

>

> Sue

>

> On Monday, December 5, 2005, at 11:48 AM, Yanosz Descouedresz wrote:

> >

> > I thought I'd take a minute to write an introduction into the

> > complicated world that is... Me... Call this an exercise in vanity

> > if you

> > like. *smile*

> >

> > I am a 27 year old male, residing in Two Rivers Alaska with my partner

> > Rick,

> > my two Anatolian Shepherd service dogs, both boys, Dewey and Turk, and

> > sled

> > dogs which Rick raises and trains.

> >

> > Rick is a professional sled dog racer and runs a sled dog school and

> > touring

> > company. I am a network securities Consultant/Administrator and I

> > work out

> > of my home. My illnesses being what they are, I may not be able to

> > work

> > forever but I am trying my best...

>

>

>

>

>

[Guest guest]

Yes, I would consider those classic cars. *smile*

Yan

Re: [ ] An Introduction

> Every time I start feeling sorry for myself, I always seem to find someone

worse than me. I'm sorry you have to deal with all that in your relative

youth. Which leads me to the 'punch line'. Just what do you consider a

" classic car " ??? I have about 10 pre-1970 in various states of

restoration/storage, All Fords.

>

> Dennis

>

[Guest guest]

Kim,

Yes, it is pretty here where I live although Denali National Park is much

prettier. Alaska has some of the prettiest country in the US but then, I'm

biased. *smile*

It took me ten years to find a good doc. One who would not only help with

pain control but who wanted to find out what was causing the pain... Part

of my pain is due to Ankylosing Spondylitis, part is due to Fibromyalgia and

part is due to injuries I suffered at the hands of my abusers.

The only problem with my doctor, who is a neurologist/pain management doc,

is that his office is 100 miles away. It's a 200 mile round trip and

depending on the road conditions, it can take half the day or all day...

Still, that's a small price to pay for a doc who understands and is willing

to treat me properly.

If I hear one more doctor tell me to " take Tylenol " or " lose weight " I'll

scream. Tylenol does not work and I do not need to lose weight. I am 6'3

and weigh 126. I don't think I need to lose more weight... But I digress.

Yan

Re: [ ] An Introduction

> Welcome to the group! This is a wonderful group full

> of fabulous info and with abounding support!!! Wow!

> You along with so many others are so young for alll of

> this! I'm sorry for all that you have been through!

> Bless your heart! I can't imagine? It seems as though

> now, you have a really interesting life! Training

> sled dogs is cool! Is it really pretty where you live?

> How are the doc's there treating you? Dealing with

> mental issues is a toughy at times and yes, we must do

> the best that we are able to. That is all anybody can

> do. Poetry here is always welcomed! Food is good for

> the soul! Music can cheer a person up! Classic cars

> are really awesome! Anyhow, welcome and take care!

> Kim

[Guest guest]

Hi Yan,

We went by train to Talkeetna, then took a bus 50 miles to a lodge

belonging to Princess Cruise Line. We took a tour near there to the

Danly-Hall Dog Kennel. Bill Hall was the one who told us about how the

sled dogs are trained and how things work during the Iditerod.

In Fairbanks, we took a riverboat tour and saw Butcher's dog

lot. Jessie Rover works for the tour in the summer and gave us more

information about dogs.

Then we saw a slide show in Fairbanks by Ken and his wife

Gwen Holdmann, both of whom have run in the Iditerod, I believe.

Butcher may be the only one of these people who has won the

Iditerod.

Rick must be very good to have won five times. I will be sure to keep

up with it from now on. March will be here soon.

Sue

--- In , " Yanosz Descouedresz " <yanosz@c...>

wrote:

>

> Hi,

>

> Yes, Rick has been running in the Iditarod since 1976 and has won

the racefive times...

>

> If I may ask, where did you go to learn about sled dogs? Do you

remember what the name of the place or company was? Just curious is

all...

[Guest guest]

Yan, I thought that Alaska was beautiful, also. I really enjoyed going

up into Denali National Park. We took a wilderness tour that took

about 6-7 hours, and the scenery was breathtaking. It is great that it

is still an unspoiled wilderness. Mt. McKinley was clear of clouds

that day especially for us, so it was even more special. I got some

great pictures.

Throughout our trip, we seemed to bring good weather with us. We

experienced only one shower, and we were seeing a play inside at the time.

I enjoyed the first part of the trip, which was a cruise through the

Inside Passage. We docked at Ketchikan, Juneau, and Skagway, and took

tours on shore. One of the places we went to was Mendenhall Glacier.

We also went to a Salmon Bake.

The ship took us up into Glacier Bay, where it was absolutely beautiful.

Where in Alaska do you live?

Sue

--- In , " Yanosz Descouedresz " <yanosz@c...>

wrote:

>

> Yes, it is pretty here where I live although Denali National Park is

much prettier. Alaska has some of the prettiest country in the US but

then, I'm biased. *smile*

[Guest guest]

I live in Two Rivers. It's a *real* small town about 46 miles from

Fairbanks... Two Rivers is considered to be the dog mushing capitol of the

world. In our town, dogs outnumber people 4 to 1.

Yan

[ ] Re: An Introduction

> Yan, I thought that Alaska was beautiful, also. I really enjoyed going

> up into Denali National Park. We took a wilderness tour that took

> about 6-7 hours, and the scenery was breathtaking. It is great that it

> is still an unspoiled wilderness. Mt. McKinley was clear of clouds

> that day especially for us, so it was even more special. I got some

> great pictures.

>

> Throughout our trip, we seemed to bring good weather with us. We

> experienced only one shower, and we were seeing a play inside at the time.

>

> I enjoyed the first part of the trip, which was a cruise through the

> Inside Passage. We docked at Ketchikan, Juneau, and Skagway, and took

> tours on shore. One of the places we went to was Mendenhall Glacier.

> We also went to a Salmon Bake.

>

> The ship took us up into Glacier Bay, where it was absolutely beautiful.

>

> Where in Alaska do you live?

>

> Sue

>

[Guest guest]

Wow sounds like my dream town.

Cristen in NC ( a dog trainer too)

[ ] Re: An Introduction

>

>

> > Yan, I thought that Alaska was beautiful, also. I really enjoyed going

> > up into Denali National Park. We took a wilderness tour that took

> > about 6-7 hours, and the scenery was breathtaking. It is great that it

> > is still an unspoiled wilderness. Mt. McKinley was clear of clouds

> > that day especially for us, so it was even more special. I got some

> > great pictures.

> >

> > Throughout our trip, we seemed to bring good weather with us. We

> > experienced only one shower, and we were seeing a play inside at the

time.

> >

> > I enjoyed the first part of the trip, which was a cruise through the

> > Inside Passage. We docked at Ketchikan, Juneau, and Skagway, and took

> > tours on shore. One of the places we went to was Mendenhall Glacier.

> > We also went to a Salmon Bake.

> >

> > The ship took us up into Glacier Bay, where it was absolutely beautiful.

> >

> > Where in Alaska do you live?

> >

> > Sue

> >

>

>

>

>

>

>

>