Re: (unknown)

[Guest guest]

Hi Cari.... gosh it's really great hearing from you. And I'm soooo

happy that is doing so well. Now, if we can just get our to

get better and be able to go home.... I know that Joy really needs a

break.

Anyway, about the group and Onelist.com

I know that if you put it in like Ourmyositis.... it won't work. You

have to use OurMyositis..... the capital M makes the difference. Of

course now that they have merged ... who knows for sure....

Cari, what is IGG shot? I've never heard of it before... Hope you and

your family had a great Easter.

Hugs to all of you today..

Vicki

[Guest guest]

hi my name Adannia and i am 17 and i was diagnose with DM in 1998 and to tell

the truth it was a terrible journey it hard and very long still now im

putting up with, because of the simple fact that prednisone has cause me so

many side effects and by telling you this i dont want you or your son to be

scared just worried abotu the situaiton now and then later we will see what

happens, just put all your faith in the lord up in heaven he could really do

anything. i hope this does not discourge you at all, and if it does i sure

did not meant it the way.

take care

Adannia ( luna)

[Guest guest]

> I was so interested in reading your message. My 4 year old

> daughter has just been diagnosed with JDMS. We just finished her

> first IV Solu-Medrol last Friday (3 days). She will do 3 days again

> this week and next. She is on 5mg of prednisone in between. I

> haven't noticed many changes yet.

Our had six months of Solu-Medrol therapy last year. It worked

wonders for her, and she had essentially no side effects from the

infusions. At first, they will monitor her lab results closely - they

will be looking for a strong improvement within a few weeks. The

clinical improvements will take longer - it usually takes several weeks

or months before strength and endurance return, but sometimes it

happens much quicker.

> Caroline is a patient at Texas

> ish Rite Hospital. Do you have any tips for us as we begin this

> journey? I have to admit I am a little overwhelmed by the whole

> experience that I hardly have any questions yet. What kind of

> treatment did they start with when he was first diagnosed?

> Thanks for your help! It helps knowing there are other parents and

> children going through this. Thanks again, L.

I don't know if you've seen my JDMS Diary yet, but you may find it

helpful. It's a lot to read all at once, but take your time, there's a

lot of good stuff in there, so people tell me.

http://www.ralphb.net/JDMS/

For a start, check out my recent interview about JDMS, which

specifically includes some advice I have for others in the same

situation:

http://www.sevenquestions.com/new7q/ralphbecker.htm

Good luck to you at this trying time. If you do think of questions,

we're here to try to answer them for you.

Ralph

==========================================================

Ralph Becker http://www.ralphb.net/

Will Juggle for Food. RKBA!

[Guest guest]

Hi ,

Another option you might want to research is one that was pioneered by a Dr.

McPherson Brown, over 50 years ago. His ideas were not widely

accepted at the time, but he continued to treat patients according to what

he believed, and his patients got better. What he believed is that these

diseases are caused by an infection, most probably a mycoplasma. Finally,

with the help of modern laboratories, more people (including doctors) are

indeed finding out that Dr. Brown was right. There is lots of info at the

following sites: www.rheumatic.org and www.roadback.org

I would also recommend that you read The New Arthritis Breakthrough by Henry

Scammell.

I have been on this treatment for two years, and I am doing very well. Let

me know if you would like any more information. I would be happy to share

with you.

take care and welcome!

Connie Hache

[Guest guest]

Hi Luna

I also take the Prednisone and have been able to decrease down to 3 mg a

day. I've had the side effects with this drug. What side effects are

you having? Hope your feeling better.

Vicki

[Guest guest]

Hey Vicki!

Down to 3mg of pred?....way to go gal......I

can;t seem to get lower than 5......

Luna

Myside effects inclued oestioporosis .....I lost

3 " which I couldn't afford (4'10 " at my tallest)

cataract surgery on both eyes.....high cholestrol

........bad teeth and lots of borderline stuff...

In all fairness I must say that I am being

successfully treated for oestioporosis (Fosamax)

and the high cholestrol (Lipator) and that

without the predisone I wouldn't be able to

function on my own now.........It's a love/hate

relationship.....lol

Teddi

[Guest guest]

Hi Teddi... well, we'll see how long it lasts. Since I have such a

terrible time with prednisone... weight gain, osteoporosis, swelling of

internal orgins, headaches, swelling of the throat, and Prednisone

myositis.... the doctors feel that, no matter what, it might be to my

best interest to get off the drug altogether. Now, we don't know how

long that will last. I did have to start my shots of Enbrel on Saturday

because I have no energy at all and that makes it hard for me to

breath....My lung specialist has told me she would much rather have me

get off the Prednisone and she can perscribe a cortical inhaler just for

my lungs if I start to have problems breathing. She's also concerend

about the drug going through my body. Like I said....we will see how it

goes.

I'm so glad to hear your doing better Teddi just take your time and get

rested up.

Joy, that is the greatest news yet. I go see my doctor on Friday so

I'll be mailing a card to then. Lots of hugs to all of you.

Vicki

[Guest guest]

Vicki wrote

<<Teddi just take your time and get

rested up.>>

Yeah, right! I ordered a new computer table last

week........gave myself a week to clear a place

for it......naturally the spot I wanted to put it was

4 " too short!.......I move something 6 " and set

down to rest, etc......and Thurs is getting REAL

close......lol

Teddi

[Guest guest]

Teddi, are you getting a computer? OMG, I'm going to be the only one on

Webtv before to long. Need a couple of other things like a digital

camera for my daughter first.... you know how that is.

Vicki

[Guest guest]

Vicki

Yeah, am seriously considering a computer

......for one thing I'm getting tired of clicking

on a URL that starts http and have Webtv

can't go there because it has to start http

AGHHHHHHH

Besides I want to be able to scan my jewelry

and get it out so people can see it.......Now

all I need is some $$$$ to back up my " wants "

Teddi

[Guest guest]

Hi Cari,

Dr. Franco, of Riverside, California initially did a blood test on me

that looked for past infection of Fifth's disease (also known as the

sakie virus.) He told me that there is speculation that one of the

causes of DM is a prior infection of Fifth's. Sort of wierd, huh? It looks

like your got the cart before the horse.....the DM before the Fifth's

disease. I do know that Fifth's disease is quite common in children,

though.....and of course we know that DM isn't real common.

Also, since you have to change doctors anyway, if you are interested in

looking for a doctor who is interested in complimentary therapies regarding

these diseases, I might be able to help you. Through another support group,

there is a list of doctors from across the country (and elsewhere) who are

using not only standard therapies, but also additional therapies. This list

includes many knowledgable doctors, including Dr. Trentham, from Beth

Israel Hospital, a partner of Harvard Medical School.

Let me know if you are interested in the list. I am very happy that

is doing well, for the most part. That makes all the difference!

take care and hugs, too,

Connie Hache

(unknown)

> Good Morning to all,

> A big welcome to our newest members Catzmeow,(love

> that name) and yorkiland. My name is Cari and my 4

> year old son, , has juvenile Dermatomyositis.

> His CPK is in the normal range and he is doing quite

> well at this time.

> , So happy you have found a great doctor. He

> sounds like he is very open minded to different

> alternatives. That is wonderful and so rare. I

> understand what you mean about the office staff. The

> office staff at my children's pediatrician's office

> act like they are granting you a great privilege just

> by setting an appointment. The last time I was in,

> the nurse told me she was too busy to call the

> prescription in so it would be ready when I got to the

> drug store. It was 7:30 at night and the kids hadn't

> eaten dinner yet. We didn't get home until 8:30 and

> it was a school night. I was furious. A few days

> later I got a letter in the mail from them and they

> are dropping our Blue Cross/Blue Shield plan. Now I

> have to find a new pediatrician that is familiar with

> DM. Ugh. I hate that has to get used to

> someone else. My 8 year old daughter Shelby dx with

> strep yesterday so had to be seen also. They

> put him on antibiotics because he had a yucky nose and

> also dx him with " fifth's disease " . The biggest

> symptom is a lacy rash on his face and truck. With

> , who knew? Lacy rash, red face, welcome to our

> world.

> Vicki, loved the Wal-Mart story! I hate to ask, but

> what is ISP? Happy Sunday to all!

> Cari and

>

> __________________________________________________

>

[Guest guest]

Hello everyone...

Cari... changing doctors might be a blessing for you. All of us have

gotten so use to putting up with doctors who don't care, nurses with

personalities of a spider, uncaring office workers. I put up with that

for years thinking it was that way with all health care providers. Not

so... the clinic where I go now is so nice. The nurses are wonderful

and have great personalities. If I call for a refill or want to talk to

the doctor they make sure it gets done.

After I told my doctor what I had put up with for years he gave me a

good bit of information.

He said no one should be treated like that... he said start complaining

and changes will be made. If the gal who gets you another appointment

is rude, tell her so. Once people stop taking this, thinking that we

have no other choice, then things will change. We have to remember.....

it is US or family members who are sick...not THEM. So don't let them

push you around. It takes so little to be nice and it takes more effort

to be nasty.

The first time I went to my new dentist office I was confronted by a

very young gal who didn't smile at all much less answer my questions.

She was very rude and acted like I was bothering her just in making

another appointment. I remembered what my doctor had told me so I

politely asked the girl if we had met before....she said no with her

little attitude. Then I asked her if I had offended her in any

way....again she said no... I then asked her " Then why are you treating

me like I shouldn't be bothering you, I just want to make another

appointment " .... she was floored... she didn't know how to respond. I

also told her I would not tolerate this kind of treatment. My next

visit, she was pleasant and I did ask how her day was going. We started

a conversation... I couldn't believe it. But I do know it works. No one

should have to feel like these people are doing us a big

favor...especially in the health care profession. So Cari, I know it

will be a pain but you just might find someone much better....also,

contact the MAA for a doctor in your area.... I think if you go to there

web site you can just put in your zip code and it will take you to the

nearest office....or is that the MDA...either one will be able to help

you. Happy hunting and I hope everyone has a wonderful weekend.

Oh by the way Cari.... I am going to try the hammock... LOL.... oh

Wal-mart is going to love me if I get stuck in that.

ISP is Internet Service Provider.... I know you had trouble on your last

addy, so I wondered if it was your ISP that was a problem for you.

[Guest guest]

I'm sorry everyone for sending this out again but I hadn't removed my

html coding for Catz when I first sent this out. This is for you

Catz....

Hello everyone...

Cari... changing doctors might be a blessing for you. All of us have

gotten so use to putting up with doctors who don't care, nurses with

personalities of a spider, uncaring office workers. I put up with that

for years thinking it was that way with all health care providers. Not

so... the clinic where I go now is so nice. The nurses are wonderful and

have great personalities. If I call for a refill or want to talk to the

doctor they make sure it gets done.

After I told my doctor what I had put up with for years he gave me a

good bit of information.

He said no one should be treated like that... he said start complaining

and changes will be made. If the gal who gets you another appointment is

rude, tell her so. Once people stop taking this, thinking that we have

no other choice, then things will change. We have to remember..... it is

US or family members who are sick...not THEM. So don't let them push you

around. It takes so little to be nice and it takes more effort to be

nasty.

The first time I went to my new dentist office I was confronted by a

very young gal who didn't smile at all much less answer my questions.

She was very rude and acted like I was bothering her just in making

another appointment. I remembered what my doctor had told me so I

politely asked the girl if we had met before....she said no with her

little attitude. Then I asked her if I had offended her in any

way....again she said no... I then asked her " Then why are you treating

me like I shouldn't be bothering you, I just want to make another

appointment " .... she was floored... she didn't know how to respond. I

also told her I would not tolerate this kind of treatment. My next

visit, she was pleasant and I did ask how her day was going. We started

a conversation... I couldn't believe it. But I do know it works. No one

should have to feel like these people are doing us a big

favor...especially in the health care profession. So Cari, I know it

will be a pain but you just might find someone much better....also,

contact the MAA for a doctor in your area.... I think if you go to there

web site you can just put in your zip code and it will take you to the

nearest office....or is that the MDA...either one will be able to help

you. Happy hunting and I hope everyone has a wonderful weekend.

Oh by the way Cari.... I am going to try the hammock... LOL.... oh

Wal-mart is going to love me if I get stuck in that. ISP is Internet

Service Provider.... I know you had trouble on your last addy, so I

wondered if it was your ISP that was a problem for you.

[Guest guest]

Hi Cari,

I am sorry to hear that must endure the words of the ignorant adults out there. That is sad that he is now self conscience about his rash. I don't understand why people have to be so stupid and mean.

What a sweet and tough little guy is to not complain about his pain. He sounds young, what is his age? You may be right in that he may not think about the pain and just think it is a part of everyday life.

That will be wonderful if he doesn't have a flare up and is off all meds by the fall. I'll keep him in my prayers, as well as yourself...stay strong. It must be so difficult making the decisions you must make on 's behalf, but you must be making the right ones since he is so close to getting off of the meds.

Thanks for sharing,

*karen*

..

[Guest guest]

,

Thank you so much for this wonderful reassurance! You have me smiling from ear to ear! I am so excited and praying we will be able to have a baby.

Keep us posted on how you are doing. I pray you aren't getting a flare.

warm hugs,

karen

dm

..

[Guest guest]

Hi ...

The way you described your legs is how I get when I'm up and moving.

When it hits, I get so weak and my legs are like rubber. Sometimes

it's all I can do to get to a place to sit down or if I'm home, to make

it into the house. I'm only suppose to be up no more than 2 hrs a

day.... I've had every test run for it and nothing shows up. They

think it's the disease. I will get really sick if I'm outside in the

sun....

Sometimes I wonder if it's related to my body temp rising so fast. I

can really heat up this body. When I'm home I use ice packs to cool my

body temp down. Both my Rheumy's said that they see this in autoimmune

diseases. Oh great....when I was younger I was cold all the time...now

I feel like someone just lit a bonfire inside me....Nope, it's not a

hot flash....this is very different...

When I got on the Prednisone my blood pressure went up. 130/110....now

it's starting to come down .... my last check was 120/70.

I'm falling apart guys.... but I guess it could be worse. Can you

imagine having this diease in the early 1900's?

Vicki-PM :~)

[Guest guest]

Hi and everyone

you mentioned having this disease and having normal labs... sounds

pretty strange doesn't it? When I had my first normal lab I couldn't

figure out why then did I still have the pain, feel awful, and weak....

Here it is over a year now with normal labs and while I'm doing better

than I was, I still feel the muscle pain, chest pain, and weakness can

hit at any time. I've talked to a few other people with the JO-1 and

they have the same symptoms. The doctors do know that the JO-1 can make

you just as ill like the PM would. It's like a double wammy...

One of the questions that was on the MAA Q & A site I sent out

yesterday, did talk about something regarding the disease going into

remission then it jumps back up later on. I found that interesting. I

don't think remission is a word that I will find.

I sent away for the survey through the MAA on PM...did anyone else see

this? Joanna (MAA) is sending some other articles that she thought I

would find interesting. I did ask to find out more about the JO-1. Can

hardly wait to get it.

My gosh, I look like I already died and they dug me back up if I didn't

wear my makeup.... My eye's look like two burnt holes in a blanket....

Not a pretty sight at all. Speaking of hair... I haven't colored my

hair in years but it's really bothering me now. My hair is baby fine

and about 40% gray.... I'm thinking of dying it to give me some extra

color....

Pretty sad when you have to find ways to make yourself NOT to look sick.

Are you planning anything good for the weekend?

[Guest guest]

Happy Saturday morning to all of you...

, how long ago were your first labs done? I don't know how long

doctors and the clinics/hospitals keep there records but you might be

able to call and ask them for copies.

I have a question for the group. Why do some Myositis patients see only

Neuro's while the rest of us see Rheumy's????

I've only seen a Neuro twice when I had my EMG done....then I went back

to my Rheumy..... Just wondering since I've seen more and more people

stick with a Neuro .....

Fern, you wise person you, I've got a question for you...... In my

research I've seen where the Sed rate is a marker for PAIN level...but

I've also seen that it's a marker for INFLAMMATION....so which one is

it???

, here are the numbers on my lab reports.

SED RATE .....0 - 30

CPK................21 - 215

My Sed rate is 23 and my CPK is 62.

I would also be interested in finding out more on your CPK level and

chronic disease. In my research I found that the labs to fluctuate

daily and it would be useless to have labs done to often. A doctor

that spoke at one of the seminars said that the CPK level doesn't mean

that a person is well. They have patients with normal (like me) CPK's

and still are very ill....

I think this is where the antibodies you have play an important roll. I

would like to know more about that.

When I was going to Sharps clinic, Ibuprofen was all he would give me

for pain. As the pain became worse he would just up my level of

Ibuprofen. When I transferred to Scripps clinic they were not to happy

with me taking the ibuprofen and told me not to take it again. I think

at that time my liver counts were high and they though I might have

damage...but I came out of it fine.

I wish I could remember where I read this but the article said that if

you had inflammation in your muscles longer than 6 months it could leave

permanent damage.

LOL... I don't even go to the dump without my makeup on. I don't want

to scare anyone. I think the sign idea is perfect. Maybe a bumper

sticker.... that would be one way to let everyone know that this disease

is REAL!

I know a gal who's a nurse in Calif that is going to be interviewed at

the hospital in NH. She can hardly wait to get out of good ole Calif.

Looks promising for her. I think she has 4 interviews and one is in a

town called Nashua..... is it pretty in NH?

Well, hope everyone is doing fine and planning on a relaxing weekend.

Take care everyone.

Hugs

Vicki-PM

[Guest guest]

,

Let me know if you come to N.H., we are here! We are loving it and my

husband and I are thinking about asking his boss to transfer him here

permanently. We of course will pray about this major decision, but the pace

of life is so much slower up here and my husband really needs that. His job

here would also be better.

Fern

[Guest guest]

Sed rate stands for sedimentation rate of the blood. They actually put the

blood in a special tube and see how fast it settles. The liquid part floats

to the top and the solid part settles in the bottom. The rate at which it

settles is the sed rate. It is most definitely a marker for inflammation,

but it isn't an exact science. The reason you will see them refer to it as

a pain marker is because anytime there is inflammation, there is usually

pain.

With all these problems I have had breathing, my sed rate has been normal

and I obviously have some muscle inflammation. In fact, you can see some of

my muscle inflammation. It does make me wonder if the reports that say if

you have had the disease a long time undiagnosed can cause some of your labs

to return to normal is correct. My CPK is within normal limits too, but I

was so sick they almost put me in the hospital. So far the only lab that is

abnormal is my high ANA. They haven't finished the antibody tests yet, that

will be done in August when we get back from vacation.

Gentle hugs,

Fern

[Guest guest]

> ,

>

> Let me know if you come to N.H., we are here!

Hi Fern! We are kind of hoping to get up there around the 24th or so

for just a few days. Depends on if his vacation time for the 23th +

is approved and he should know tomorrow. It takes us maybe 4- 41/2

hrs to get " thay-a " from " hee-ah " . That's how " Mainiacs " talk, tho,

not necessarily New Hampsire-ites. I have a stepsister-in-law in NH

too. Are you on or near Winnepesaukee? Isn't that what you said? My

stepmother's sister and her husband recently sold their home there,

for, I believe, over one million- how much over I have no idea. Maybe

several! Some of her family members are very interesting- she had an

Uncle who was a NYTimes Theater Critic for years, and he

started an enclave in Whitefield(where we go) complete with a theater

building, that was also home to the Portland, Maine symphony- when it

got it's start.... sorry 'bout rambling - lots of interesting history

there! You must take a ride on the long, gorgeous highway meandering

thru the Whites- the views are breath-taking (as long as you can

breathe!)I'm in my brain fog, so the name of the highway is escaping

me even tho I've been on it a few times- oh- the Kankamangus

Highway!!! yippee- I remembered. More later- will let you know, and

enjoy yourself! Hugs,

[Guest guest]

,

We are living in Holderness, N.H. which is between Ashland and Meredith. We

will be here until August t 26. Come to find out, we are right on " Golden

Pond " .

Gentle hugs,

Fern

[Guest guest]

Fern, thank you for the info on the Sed rate. I agree with you on the

inflammation. I also have some inflammation not only in my hands but my

lungs as well and yet my sed rate is still in the normal range. In the

beginning I thought if my CPK dropped down to normal I would be alright

again.... Boy, was I surprised when I felt like someone ran over me with

a truck. It has been a roller coaster ride ever since.

Sleep well everyone.

Vicki-PM

[Guest guest]

Hi to all, II am still here. Just have had all kinds of problems with

my computer. The list is getting so big. I am doing quite well. Skin

has broken out very badly though. I have gone down on steroids. I seem

to have a problem sleeping now . Is that from going down on steroids?

Does anyone know? I have nver had a problem sleeping before. Helen

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[Guest guest]

Helen, Helen, Helen.... I'm so happy to have you write. I was wondering

how the heck you were doing. Last time you wrote you said you were

doing much better so I thought you were just kicking up your heels on

the beach.

I'm sorry to hear your having problems again. My gosh, just when you

think you're on the mend then something else hits you. I have always

had a problem getting to sleep, which is related to the disease, so I

have to take something for it.

I was able to get off the Prednisone and that lasted only two weeks. I

started taking 5mg a day. You might try just 5 mg and see if that not

only helps your skin but makes you sleep again.

Are you still working? Helen, remember your article that was on either

the MDA site or the MAA site....do you know if it's still there. I can

look if I know which one it was on. I would love to share it with the

others that haven't seen it.

Hope your able to keep in touch with all of us. We love to hear more

from you.

Lots of hugs to you

Vicki-PM