hello

[Guest guest]

Hello ,

Welcome to our group. I was first dx with Polymositis in 1991, after 3

biopsy,s I now have IBM. Yes, some of us have pain--mostly in the muscles.

Seems like my pain is worce at night--for some reason. We all like

questions, so if you have any, be sure and ask us O>K>

Ev.

[Guest guest]

Good Morning

I also have PM, Osteoarthritis, Raynauds, Restless Leg Syndrome,

myositis of the eyes (can't remember the correct term), Interstitial

Lung disease, muscle pain and fatigue daily....but I don't have FM yet!

I was diagnosed in Oct. of 98...I'm also on SSDI.... just received my

Medicare card which starts in Feb.

One day I have energy to go to the store and the next 5 days I'm only

out of bed long enough to feed my critters. Just going to the grocery

store wipes me out. I tried an electric cart for the first time on

Tuesday after I went to the doctors office. I have learned that I'm a

dangerous person to have in a grocery store, in a cart.

I'm on Celebrex for the pain and I really love it.... while it doesn't

work for others.

I'm down to 3mg of Prednisone. I do take a steroid inhaler which makes

lowering my prednisone easier. I take Imuran at 150mg a day until next

week then I'll drop to 100mg. I take Effexor to sleep at night.

Do you have any lung involvement ???

Take care,

Vicki-PM

[Guest guest]

Hi Catt,

My son doesn't have PM, but juvenile DM (JDMS).

He was diagnosed in Jan 99. He is in remission and

thankfully doing very well. Welcome to such a

wonderful, supportive group of people.

Cari and - JDMS

--- Catt Harmon wrote:

> Hello, everyone, and Thank you for the warm welcome.

> I have had Polymyositis since the early 1990's.

> Originally diagnosed

> with RA but through a muscle biopsy Polymyositis was

> proven. I also

> have Fibromyalgia and Osteoarthritis. I have a lot

> of muscle pain and

> fatigue. I am on Social Security Disability. I

> would be interested

> in hearing from others with Poly and how they are

> doing.

>

> Sincerely,

>

>

>

>

__________________________________________________

[Guest guest]

My pain is the worst first thing in the morning and at night too. I think

the pain at night is because we have been up and using our muscles all day

and they become tired.

Gentle hugs,

Fern

> Hello ,

> Welcome to our group. I was first dx with Polymositis in 1991, after 3

> biopsy,s I now have IBM. Yes, some of us have pain--mostly in the

muscles.

> Seems like my pain is worce at night--for some reason. We all like

> questions, so if you have any, be sure and ask us O>K>

> Ev.

[Guest guest]

Hi .... One thing about Imuran is that it takes a good 6 months for

the drug to build up in your system before it starts to work.... My CPK

has been between 35-60 for over a year now... In fact all my lab tests

are normal.... it's so darn frustrating but the doctors now know that a

person can still have pain and feel horrible and have normal labs.

This last doctors visit my doctor and I talked about my delima with

paying for my meds... seems we could change from the Enbrel to

Remecade... but I would have to go into the clinic and have a nurse give

me the injections. He didn't know all the info but will look into it.

Hope you had a good day .

~ Vicki ~Myo Info

[Guest guest]

Thank you everyone for welcoming to the OurMyositis egroup.

Re: Hello

> Hello ,

> Welcome to our group. I was first dx with Polymositis in 1991, after 3

> biopsy,s I now have IBM. Yes, some of us have pain--mostly in the

muscles.

> Seems like my pain is worce at night--for some reason. We all like

> questions, so if you have any, be sure and ask us O>K>

> Ev.

>

>

>

>

[Guest guest]

Vicki,

Hi, I am feeling much better emotionally. I have spent some time talking to

my husband's family about and we are getting support from everyone

but his Mother. She, however, is simply threatened by me because she too

had a problem child that she did not do a good job with and I think she is

jealous because she knows we are doing a better job than she did. Sad that

she cannot just be thankful that we are more knowledgeable. It doesn't mean

that she is some bad person because she didn't know what to do. She was

married to an alcoholic and was working very long hours trying to support

five kids, so I have the utmost respect for the way she tried. She did the

best that she could do with the resources that she had. I am just lucky

that my resources are better. I also learned that she is in therapy, but

too embarrassed to talk about it. Funny isn't it? So I know that it isn't

me, it is her and I have to understand that she must be hurting and I happen

to be an easy target. Of course that doesn't mean that I will take

disrespect or her talking down to my children about me, but at least now I

have some insight into what is going on and maybe my responses to her will

be different. I believe God is using me and maybe that is why I am such a

sore spot with her.

is doing better and we have had some really productive conversations

in the last few days and he did much better with his school work last week

and earned some rewards.

also stayed up late with me last night to talk about his grandmother

and his brother. He had lots of questions and we really had some special

time together. He said that he wanted to help his brother, but he knew that

it might make him more upset to have his little brother helping him with

school work so we decided it wasn't a good idea. But I did tell him how

proud I was of him for caring.

I have been resting especially since my fall on Thursday. Yesterday and

today have been the worst as far as being sore, but hopefully that will be

better tomorrow since I have been so good about taking it easy.

I will write to you all as soon as I can about my doctor's visit on Monday.

Gentle hugs,

Fern

[Guest guest]

Fern,

You sound a little bit more upbeat. So Glad. Glad

also that things are looking up with your son.

Understand about the mother-in-law thing oh so well.

Don't let her burdens become yours. Hope your aches

are less today.

Thinking about you,

Cari

--- Starflower wrote:

> Vicki,

>

> Hi, I am feeling much better emotionally. I have

> spent some time talking to

> my husband's family about and we are getting

> support from everyone

> but his Mother. She, however, is simply threatened

> by me because she too

> had a problem child that she did not do a good job

> with and I think she is

> jealous because she knows we are doing a better job

> than she did. Sad that

> she cannot just be thankful that we are more

> knowledgeable. It doesn't mean

> that she is some bad person because she didn't know

> what to do. She was

> married to an alcoholic and was working very long

> hours trying to support

> five kids, so I have the utmost respect for the way

> she tried. She did the

> best that she could do with the resources that she

> had. I am just lucky

> that my resources are better. I also learned that

> she is in therapy, but

> too embarrassed to talk about it. Funny isn't it?

> So I know that it isn't

> me, it is her and I have to understand that she must

> be hurting and I happen

> to be an easy target. Of course that doesn't mean

> that I will take

> disrespect or her talking down to my children about

> me, but at least now I

> have some insight into what is going on and maybe my

> responses to her will

> be different. I believe God is using me and maybe

> that is why I am such a

> sore spot with her.

>

> is doing better and we have had some really

> productive conversations

> in the last few days and he did much better with his

> school work last week

> and earned some rewards.

>

> also stayed up late with me last night to talk

> about his grandmother

> and his brother. He had lots of questions and we

> really had some special

> time together. He said that he wanted to help his

> brother, but he knew that

> it might make him more upset to have his little

> brother helping him with

> school work so we decided it wasn't a good idea.

> But I did tell him how

> proud I was of him for caring.

>

> I have been resting especially since my fall on

> Thursday. Yesterday and

> today have been the worst as far as being sore, but

> hopefully that will be

> better tomorrow since I have been so good about

> taking it easy.

>

> I will write to you all as soon as I can about my

> doctor's visit on Monday.

>

> Gentle hugs,

> Fern

>

>

__________________________________________________

[Guest guest]

Hi to Everyone,

I went to my Reumatologist, yesterday. My DX is still " Steroid Myopothy "

'He said we can't go any lower than 10 mgs. of Predisone, because I start

getting weaker. He wants me to get exrays of my knees. When he gets the

report back, He wants me to come once a week, for 3 shots (one shot a week)

It's calledHyalgan

I have heard of it, but forgot where I read about it. It's a jell, and its

supposed make your knees stronger--I will let you know how it works. By the

way I'm still on 50 mgs of Imuran. And yes Predisone does make you bruise--I

tell friends, not to look at me cross eyed, or I will bruise!! Vicky, this

Medicine Program is for the birds! I have one approved for 30 day supply and

I have to fill out some forms to get the remainder of the 6 month supply.

But, boy you end up working for it--it sounds so easy. Are you having any

trouble Vicky? The Pred. is cheap, but I have Diovan (blood pressure) and

for a 100, its $105.00. Can't afford many like that. I'm celebrating my

birthday today. Too close to Christmas, huh? I rec'd a call from Ca. this

morning from a friend that I grew up with--we have known each other ever

since we were 6 months old and believe me, thats a long time!!!! Enough

about me--hope everyone is feeling better than ever.

Love , Ev. We are expecting a freeze tonight--very unusal for south

Texas!!

[Guest guest]

Hi Vicki.

Sure, I'd be pleased to ship out cookies to all and sundry on this

list, but since I've never made them before, and I didn't take Home

Ec. (something about a concern that I might burn down the school), I

could use some helpful hints. To start with, do you use a low or high

setting on the barbecue?

As for Reynaud's, I have to admit that, as I was writing my last

message, I got the feeling that I was " whistling in the graveyard, "

and that I might get a little better acquainted with that syndrome

than I am at present. When I was out shoveling snow this morning

(drat all rheumatologists and their ideas of what makes for " good "

rehab exercises!) my fingers were getting cold and numb a little

faster than I thought they should. Not a good sign.

Oh well, the driveway is clean, I made it to work, and I don't have a

barn that needs work. This is the good life!

Take care and keep warm.

Mike B

[Guest guest]

LOL.... Oh Mike... Your a man after ME own heart.... barbecued

cookies...YUM YUM....LOL Don't forget to go to the hardware store and

buy some tight knit fencing so the cookies don't fall through the

grill....LOL If I remember correctly you have to use a lot of yeast in

the cookie mix when you bake on the BBQ.....try using 4 cubes of yeast

for one batch of cookie mix. That should work!

I had to buy below zero ski gloves to wear outside. Something I'm sure

you already have. But, as the disease has progressed I also have to

wear wool liners. The tips still get cold but I can handle it.

Now about your Rheumy... I thank my ever loving stars I DON " T have

him... LOL

Although he must think your strong enough to do it.

It's raining right now so the barn will have to wait. Don't have too

much further to go and I'm eager to finish this project.

Take care and let us know how those cookies come out.

Vicki-pm

[Guest guest]

If you want cookies, I will make real homemade fantabulous cookies. And mail

them out to you guys. Send me an address.

Deneen

[Guest guest]

REALLY Deneen are you serious ?!?!?! Home made cookies at Christmas are the best !!! Maybe we should all make some and mail to each other so we'd have a variety !!!!

"May the last sound you hear tonight be a purrrrrrrrr"

>^..^<

[Guest guest]

I'm totally serious.

I love to bake. Keeps me sane

I thought I could address one package:

TO: Vicki at the Barn

Figure the postman would have to know what I am talking about!

Deneen

[Guest guest]

Hi All

Hmmmmm..i'm at 10mg of pred and I can't

notice much change in side effects......still

like a blimp.....fluid retention still there...I

can't do anything without swelling up like

a blowfish......bruising and skin breaking

still here.....when does it get better?????

Teddi

mailto:teddifromok@...

[Guest guest]

Hi Ev.... You might try going up on the Imuran by 50mgs. The current

dose your on is for patients who are more stable. I just recently went

down to 50mgs a day. Started out on 150mgs. I also had the steroid

myopathy and that was the main reason for me to go on the high dose of

Imuran. Now, I'm down to 3mgs of prednisone. I also think the Enbrel

has a lot to do with that.

Might be worth a try.

I thought the medicine program gave you 3 months of meds and then every

6 months to a year (depending on the companies standards) you had to

fill out the paper work again or have the doctor resubmit his form

again.

I haven't sent my paperwork in yet. I'm currently looking at other

sites and I found the companies themselves that I can go through. It's

probably all the same though.

By the way, I'm sorry I missed your Birthday but I do hope you had a

good one. So I hear your just a mear babe in the woods? Just 45 are

ya? Doesn't matter as long as you had a good day.

Happy Birthday and many, many more.

Gentle hugs

Vicki-pm

[Guest guest]

Deneen.. your just about right about the postman knowing me....lol Of

course everyone heard me this morning. I went down to the barn early an

started in... I was yelling at the boards.... only because I don't have

the strength to do what I want. So, I came back up to the house to

figure a way to do it. It will come to me, I just can't let this get

the best of me.

Where there's a will.... there's a way !!!

Vicki-pm

[Guest guest]

Teddi.... the side effects I was talking about were the steroid myopathy

which affected all my internal organs as well. That is all gone. The

heavy pressure in my eyes is gone. My blood pressure came down to a

normal level. My nosebleeds stopped. My horrific headaches are gone.

Now I only get mild ones.

Now, your asking what I have left????? Well, I'm left with a large body,

a hump (Prednisone Water Tower) on my back which is somewhat smaller now

but it's still there, I still have some fluid retention, and I also blow

up like a blowfish (very good way to describe it) when I do anything. I

still have the bruising but it's not as bad as what it use to be.

You ask when will it get better....This is it kid!!!! I don't think it

gets any better than this......LOL

Hope your having a great day....

Hugs

Vicki

[Guest guest]

Hi Sherry

Welcome to the group......As to steroid treatment....everyone reacts

differently..

with me it is a love/hate relationship..without

it I wouldn't be able to do anything..with it I

lead a normal life with a few limitations...there

are sideeffets from the steroids but the doctors

monitor you closely so they don't get out of

hand....and again different people .......

I'm Teddi and was diagnosed with DM

(dermatomyositis) 5 years ago.

Teddi

mailto:teddifromok@...

[Guest guest]

Hi Sherry....

You didn't mention if you had a rash or not. If you don't, then at

your age I would say you have PM (Polymyositis). That's what I have.

Prednisone does have it's bad points but it's the only way to bring down

the inflammation in your muscles. I started out at 60 mg a day but 4

weeks I developed a steroid myopathy (which is rare). I started taking

the Imuran so the Prednisone could be lowered.

Two years later I'm now down to 3mg a day. I also take Imuran, Enbrel

and Celebrex.

I had to stop working in August of 98, I was 53 at the time.

The Prednisone will cause weight gain and moon face. You'll need to

take calcium for your bones. As your CPK level falls into the normal

range your doctor will start to decrease the Prednisone. I also take

Vit. C & E, Potassium and my Calcium.

If you haven't gotten your tests back yet you might also ask your doctor

what antibody you have....

How long did it take before your doctor diagnosed you?

If you have the ability to stop working or just take 3 or 4 months off

from work... you'll feel so much better. Rest is so important with this

disease and naps are the best.... I almost feel like the electric

company.... " Save Energy " !

Every time I find something on the internet I put it on my web site...

You might find something interesting there.

http://www.angelfire.com/in2/mandy2/Med2.html

Hope this helps some.

Take care,

Vicki-PM

[Guest guest]

> Dear Vicky,

The thing is - just before I started having symptoms I had a

horrible rash. They treated me for everything imaginable but without

any success. My doc says it is doubtful that I have dm, but he wants

to be sure. I am just along for the ride it seems. I don't like not

having any control over this illness. I consider myself pretty sharp,

or I used to be, but now I feel very helpless at times. I have prayed

long and hard to see what lesson could be learned through all of

this, and I came to the conclusion that I needed to quit relying on

me and start relying on God. I need to quit worrying about tomorrow

and deal with today. Tomorrow may not get here. Oh, I feel better!

Sorry for dumping all of that in your lap. I tell my students to make

those long stories short; I guess I should take my own advice.

~~Sherry

>

> Hi Sherry....

>

> You didn't mention if you had a rash or not. If you don't, then at

> your age I would say you have PM (Polymyositis). That's what I

have.

> Prednisone does have it's bad points but it's the only way to bring

down

> the inflammation in your muscles. I started out at 60 mg a day but

4

> weeks I developed a steroid myopathy (which is rare). I started

taking

> the Imuran so the Prednisone could be lowered.

> Two years later I'm now down to 3mg a day. I also take Imuran,

Enbrel

> and Celebrex.

> I had to stop working in August of 98, I was 53 at the time.

>

> The Prednisone will cause weight gain and moon face. You'll need

to

> take calcium for your bones. As your CPK level falls into the

normal

> range your doctor will start to decrease the Prednisone. I also

take

> Vit. C & E, Potassium and my Calcium.

> If you haven't gotten your tests back yet you might also ask your

doctor

> what antibody you have....

> How long did it take before your doctor diagnosed you?

>

> If you have the ability to stop working or just take 3 or 4 months

off

> from work... you'll feel so much better. Rest is so important with

this

> disease and naps are the best.... I almost feel like the electric

> company.... " Save Energy " !

>

> Every time I find something on the internet I put it on my web

site...

> You might find something interesting there.

>

> http://www.angelfire.com/in2/mandy2/Med2.html

>

> Hope this helps some.

>

> Take care,

> Vicki-PM

[Guest guest]

Hi Sherry......First, don't worry about the length of your post or how

much you complain.... We all have done it and we have all been where you

are right now. Was your rash across your face area? The other

individuals that have DM will jump in here and help me out....cause I'm

not sure if the rash starts on the face or other places.

When you said you don't like not having any control over this

illness.... Oh boy, that's me for sure. I know and my doctors know that

I'm my own worst enemy. I had it in my mind that if I gave in it would

get me.... HA! It's just the opposite. If you don't give in and

rest.... it will get you and knock you back in bed. This disease takes

time to mend the muscles and rebuild.... Rest is one of the best ways

for that. Also, just by the nature of this disease... you might have a

hard time falling asleep.... Without the proper sleep at night .... deep

sleep.... your muscles can't repair themselves and you'll feel very

fatigued the next day.

I'm a firm believer that everything happens for a reason... Only God

knows what that is... We'll just have to wait to understand it.

MY THRILL FOR TODAY: I just noticed that another bone in my face is

showing. My face will soon be back to normal...it's just the rest of my

body that's shot!

Take care,

Vicki-pm

[Guest guest]

Vicki, You hit the nail on its head! I've told my family for several years that when I start feeling fatique, it's like you unplugged my extension cord. I really lose energy when it's hot or I'm in the sun.

Ev, It's wonderful that you have someone to chat with and share with. Wonderful for you both. Good luck.

, Don't overdo at work. Remember to rest lots. I don't know what your job is, but I was able to put a small couch in my office and rest on it during the day. Just 15 minutes can make a world of difference. Good luck.

[Guest guest]

Sue

I have two couches right here beside me but there is a glass window looking

out onto the street we are on. Also, when clients come in they use them and

they might get a bit frightened if they came in and my big butt was laid out

snoozing !!! Does sound inviting though but actually so far I havent been

tired at all. Did die at 8:00 last night though and it was wonderful !!!!

[Guest guest]

Good Morning Everyone...

Mike, I just saw on the " Today Show " that in Quebec City, Canada....they

have built an ICE hotel. Inside temp stays at a very warm 26°. The

hotel will last approx. 3 months then it will melt. People are already

staying there..... How far away is this from you.... I know nothing of

Canada as I'm sure you can tell.

Hope your doing great today.

Vicki