Re: New OurMyositis member

[Guest guest]

Hi Teddi, Yes I am out here. Just been busy. I've been doing very well

with the IVIG treatments but have stopped. They only gave me a set

amount of treatments and now the Doctor is concerned about side affects

which is kidney failure. So we are considering what to do, My energy

level increased it's wonderful. Am looking into the possibility of

antibiotic treatment to. Love Helen

[Guest guest]

Hi there, You are right treatment is on outpatient basis. I wasn't

admitted to the hospital. My treatments were about 7 hours for 2 days in

a row. I think treatments go according to your weight. I had altogether

treatments for 6 months so that is considered 6 treatments. I would be

understandably tired after spending all those long days at hospital even

though I had a bed. But after that my energy has increased greatly It's

worth it. Try it I recommend it. Love Helen

[Guest guest]

Hi Vicki, I know when I was on cyclosporine it knocked me out. I felt

like a zombie. It's awful stuff.....for me anyway. Steroids have ruined

my bones. I am so skinny and so very weak and frail. People are afraid

to hug me in fear of breaking me. My elbows are bent I have very little

strength. Go for the IVIG GOOD LUCK. Love and blessings Helen

[Guest guest]

Dear Vicki,

Wow! that was quick. I just signed up 15 minutes ago. I just happened to

stumble on to this site, and am interested in hearing other people's

stories.

My name is Cindi, I'm a graphic designer and I'm from Kearney, Nebraska.

I've had polymyositis since I was 17, I'm 24 now. I relapsed once a couple

of years ago, but other than that I've been in remission.

I have never talked to anyone with poly before, so I was excited to get your

e-mail. I don't want to bore you too much (at least until you get to know me

more) So, why don't you tell me more about yourself?

thanks for writing back so soon!

cindi

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[Guest guest]

Hi Cindi... I'm so happy you joined. I don't get to talk to many people

with PM either. It seems to me that there are more DM people around

then the PM.

I'm so happy to hear that your in remission. I was diagnosed in Oct. of

98. In Nov. of 98 confirmed by a lung biopsy with Interstitial Lung

disease. I also have the Anti-Jo-1. Do you have any idea what

antibodies you have? I'm always curious to find out what people have,

as far as the antibodies go.

Right now the problem I'm having is no energy at all. I'm tired all the

time. I just wish I could have one day a week where I really felt good

enough to get up and do normal things. I'm still hoping. I understand

that the younger you are when it hits, you have a better chance of

remission. I had just turned 53 when it hit me but I really think I

had it for at least 4 to 5 yrs before. I was having trouble with my

breathing in 95 and was told it was nothing. I just take one day at a

time now.

[Guest guest]

Dear Vicki,

I really don't know what antibodies I have, I must admit, I'm not very

educated in this at all, for having it as long as I have.

I was diagnosed in June of '92, and unlike you I knew pretty much right away

something was wrong. It was my senior year in high school and I was active

in softball, flag corp, basket ball and worked at a day care. it seemed like

it happened practically overnight. i couldn't twirl the flag a certain way,

my fastball looked like my change-up, and I couldn't even wipe off the table

after the kids got done eating lunch. So unknowingly I did the worst thing I

could and worked out more because I thought I was just out of shape. It all

happened in about a weeks time, on monday I didn't have enought umph on my

free-throw, by sunday I couldn't lift myself out of the bath tub.

My freshman year was the hardest time in my life so far. the regular

problems with being away from home for the first time and meeting new

people, compounded by looking like a balloon from the prednisone and trying

to take a full load while still sleeping 10-12 hours/day.

But now I'm doing better, I'm just anxious to be completely rid of this.

I've been taking so much medication for so long that I gag (especially on my

methotrexate) and am sick to my stomach ALOT, and I never want to get out of

bed in the morning - although I've never been the kind to want to get out of

bed . (I hope I'm not boring you with all of this!)

Do you go in for checkups with your doctor, or what's your routine? I have

been going in quartly for the last 3 years or so. My CPK has been pretty

steady at 200 for a couple of years. It seems like the first time I was

diagnosed it was about 18,000 or so. Does that sound right?

I suppose my story seems pretty boring to you since I've been in remission

for so long, so I appreciate your interest.

I have two main concerns at this stage in the game. One is that the

medication is making my bones and joints really weak, and I just wonder if

anyone is concerned about that, or if there is any alternative, or what this

means down the road. two is that I was told by my doctor not to think about

ever having children because the medication I take causes miscarriges, and I

could relapse during pregnancy, and even if I were to be " cured " , my body

may not respond correctly. Basically he told me to just forget about it. But

the little information I have got my hands on has pretty much contradicted

what he said. I thought I could find out what people's experiences were.

I'm anxious to hear from you! Take care!

cindi

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[Guest guest]

I would like to WELCOME our newest member j5522@... to the list. My

name is Vicki and I'm from Southern Calif. When you feel comfortable,

please tell us a little bit about yourself. Hope you enjoy your stay.

Vicki

[Guest guest]

Dear Everyone,

Hi!!! My name is Ann-Marie and I am new to the list. I have MCTD, but

my features and symptoms are most like PM. Unfortunately right now I am in

a big flare. My CPK is 3300 and I feel pretty bad. My meds are all

increased. (especially the Prednisone and Methotrexate). If this doesn't

get it under control, I may need to have IVIG treatments. If any of you

have or have had these treatments and could tell me a little about your

experiences with them, I would appreciate it. Thanks for welcoming me to

your list. i look forward to getting to know all of you.

Ann-Marie

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[Guest guest]

Hi Ann-Marie.... Happy to have you aboard. Since I am unfamiliar with

the term MCTD, can you tell me what it is? I know what your going

through. I seem to go into one flare after another yet my CPK doesn't

go up that high and is still in the normal range. The Prednisone

doesn't agree with me so I'm now down to 5 mg a day. They're afraid to

put me on the Metho because one of the side effects is it can cause

pneumonia and I already have a lung disease. Helen is our member who

has been on the IVIg with good results. Although you don't get the

effects right away. I'm sure when she see's your post she will fill you

in on what to expect. I tried the Cyclorsporine and I got really sick.

I see my doctor on Wednesday so it will be interesting to see what they

have decided to do with me.

Give me some insight to the MCTD when you can. I sleep my life away

anymore so take your time.

[Guest guest]

Hi Ann-Marie

Welcome to the group.....we are a little quiet

right now .........I am not familiar with the

initials MCTD ....do you mind giving a short

crash course.....lol......I'm Teddi...live in Oklahoma and have

dermatomyositis.....

We have a gal named Helen on the list and

I believe she takes the IV's.....Helen! are

you out there?

Teddi

[Guest guest]

Hi...MCTD is Mixed Connective Tissue Disease. Apparently from what I've

read, it used to be considered an " overlap " syndrome (ie, a " combination " of

diseases) but in 1972 was considered a disease in its own right. It is

called MCTD because it has features of several autoimmune diseases: PM/DM,

lupus, RA, and scleroderma. After a matter of time, the illness usually

presents predominant features of two of the illnesses--mine being PM mostly,

then lupus. I hope this helps. Thanks for your interest. I could sleep

forever!!! have a good day...

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[Guest guest]

Hi Helen... I'm so happy to hear that you've got some energy. I would

love to be able to have at least one day a week with enough energy to go

somewhere and not get tired. How many treatments did they allow and if

I remember correctly you were put in the hospital while you were getting

the treatments. Can you tell us more as to how long each stay was. I

do remember my doctor saying that If I had to get IVIg it could be on an

outpatient basis. The treatment would last about 6 hrs. How did you

feel after the treatments each time? Hope you had a good day.

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[Guest guest]

Glad to see you back and so happy the

treatments were beneficial.......we know

what you have been doing....... laying out

on the beautiful sunny beach snickering at

us poor snowbound mainlanders!!!!..now

don't deny it....lol....hope you can help our

new member with info on the IV treatments

......think you are the only one on the list who

has tried it.

Hugs

Teddi

[Guest guest]

Hi Helen, Hey... thank you so much for the information. I've decided

that I'm going to talk to my doctor about it. I need energy. I sure am

tired of sleeping all the time and looking at 4 walls. It's just the

pits. I do know the doctors were talking about a new drug to use on me

a couple of months ago but wanted to try the Cyclorsporine on me first.

I'm always willing to try new drugs since this might help others. I go

see my Rheumy on Wed. so we'll see what happens. Hope your having a

sunny day and keep in touch. Hugs to you.

Vicki

[This message contained attachments]

[Guest guest]

Hi Helen.... You know the steroids are not good to begin with, but I

wish I could loose this weight. I'm about 50# overweight due to the

Prednisone. I'll know tomorrow what they plan on doing. My lung

specialist contacted my Rheumy to let him know that I failed my lung

function test. So, I'm sure they will do something different tomorrow.

Thank you for the info on the IVIg. Gives us all something to think

about. Have a great day tomorrow. Hugs to you kiddo.

Vicki

[Guest guest]

Helen

That is one side effect I would like to get

(skinny) when I was hyper thyroid did I

loseweight???.....no.........That seems to

the only symtom I never get!...lol

Teddi

[Guest guest]

Dear Vicki--

Good luck with your appointment. I'll send a prayer your way. I go to the

pulmonologist on Friday--tis the season! I have gained 30 pounds from the

Prednisone and hate it. A good friend of mine who has lupus reminds me

often what her doctor said to her: " Fat or dead. " It kind of stops me in my

tracks when I think of it.

Keep your chin up!

Ann-Marie

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[Guest guest]

Please WELCOME our newest member, yorkiland@..., to our

group. My name is Vicki and when you feel comfortable please tell us a

little bit about yourself. We have a great bunch of people here so we

hope you enjoy your stay.

[Guest guest]

Vickie:

I read you web page - what you wrote is exactly the materials I want in the

book, if you will grant permission to use it.

Thanks,

Jim

[Guest guest]

Thanks, Vickie, for permission. No, you said it strongly and forceful; if I

changed a word, I would be unkind.

Thanks,

Jim

[Guest guest]

Thank you so much Vicki for filling me in about what you've been through.

The website didn't work for me and then I figured out why...there is a space after the "index.html " just after the L and so it didn't work for me...I removed the space and clicked on "refresh" and your site came up beautifully.

This is the one sent to us...that little bit of extra line at the end is a space and it makes all the difference in the world =

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

Below is the link without the space.

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

I apologize that I haven't had the chance to read it just yet, but I will. Thank you for the sending the url, I will take a look later.

I agree with you about weight lifting, it is a way to sculpt our bodies. But some do tend to go overboard and give it a 'bad' name. I'll bet your body was awesome too! Last month I purchased new Weidier machines and new dumbbells and the works for my husband. He is training me how lifting to rebuild my lost muscle. After 5 years of not exercising, I am in need and the doctors did say they now feel it is to our benefit to continue exercising. So slowly, I am getting into it. =

I am so sorry to hear about your house fire. I can definitely see how the stress of dealing with the loss of your furbabies and your home could send you into a monstrous flare. I just couldn't imagine. I am so sorry. I have a 15 year old kitty and a 19 mos. old puppy dog, I just love them so much and feel they help me in so many ways.

The Anti-Jo-1 is something new to me. I have not heard of this before. The only lung problems I have experienced was when I had Pleurisy for about 7 weeks off and on. I just couldn't imagine the pain you must have to deal with on a day to day basis. Is this under control at this point?

The difficulty swallowing is something I have dealt with...sometimes my throat feels like it just doesn't want to allow the food to pass...and it is a painful struggle. It hasn't happened often, but it has happened. Is this part of the myositis?

You are so right in that we must keep a sense of humor and the positive attitude. I don't believe I would make it without those two things. My nickname is, and always has been, Sunshine. No matter how cloudy the situation, I am always looking for the positive and finding it and smiling. Things are meant to be for a reason, we are to just go with the flow and not question why. Your doctor sounds like mine too! He is always thrilled to see that I am coming in, the one here where I live. He sees mostly older patients that just complain about the smallest little things and I am always peppy and happy and smiling. You know, the best part, smiling is contagious.

=

I am going to see my gynecologist and ask her when it would be safe to start trying for a family. I do wan to know that the Metho is gone. I probably should continue to take the folic acid daily too...but I'll ask her to be safe. I'll let you know if she says there is a test to make certain the Metho is gone, but I can't imagine there would be a test for that.

Enbrel sounds dangerous. Please be careful taking it. You probably over do like most of us when we feel good...let's do it all = and suffer the consequences later. Am I right? I've been there and done that sooooo many times myself. =

I appreciate you starting this list so very much...I just cannot thank you enough! For the past 5 years, I have really felt so alone, and I realize, I'm not alone there. Thank you, thank you, thank you!!!!

And thank you for listening and understanding...no one really understands what I have had to deal with here and it is nice to have you all to talk to. Thank you.

Take care and have a wonderful day!

*karen*

..

[Guest guest]

What about the url too? Including the url in the book...just a thought.

=

*karen*

Re: Re: New OurMyositis member

Vickie:I read you web page - what you wrote is exactly the materials I want in the book, if you will grant permission to use it.Thanks,Jim

..

[Guest guest]

Hi Jim... yes you have my permission.

I'm so glad you computer users were able to read it. I had some write

to tell me that they couldn't read it.

Also, I'm not a wiz at writing so if there are any errors, feel free to

change it.

[Guest guest]

Please WELCOME our newest member, jennifer@..., to

our list. , when you feel comfortable please tell us a little

bit about yourself. We hope you enjoy your stay.

Vicki-PM, List owner

[Guest guest]

Please WELCOME yet another member, swtlotus3@..., to our list. When

you feel comfortable please tell us a little bit about yourself. We

hope you enjoy your stay...

Vicki-PM, list owner