Re: I can't wait for a diagnosis!! :(

[Guest guest]

Hi Ed.

We haven't spoken before. I'm Mike (46, DM, and generally grouchy as

all get out).

The reaction to prednisone is pretty individual. I've read some

postings where the people claimed good results within a few days. In

other cases, there was not any noticable response for several weeks.

And, of course, the drug was not effective at all for a few.

Have you had your basic bloodwork done yet? I'm thinking of your CK

(or CPK) reading, your aldolase levels, and your seds rate (ESR)?

Good luck.

Mike B

> This waiting part is the pits! I did manage to get one of my docs

at

> work to order an elec chair for me though so hopefully that will

help

> in the mean time. If I do get put on prednisone how soon can I

> expect results? Or is it to individual to ask? I don't even get

> seen by the rheumy again until the 3rd so we can set up the leg

> biopsy. WAAAAAAAAAAAAAAAAAAAAAAA!!!

>

> Ed

>

> *what a whiner eh?*

[Guest guest]

Hi Mike. I've had blood work done about three times and each time

everything came back normal. I'm not sure about aldolase level.

From what I'm reading here, the problems with fatigue, etc. seem to

continue well into treatment. I guess if there were a quick-fix drug

everyone would be on it. Do you ever get your strength back?

Thanks for posting. I've been pretty grumpy myself lately.

Ed

> > This waiting part is the pits! I did manage to get one of my

docs

> at

> > work to order an elec chair for me though so hopefully that will

> help

> > in the mean time. If I do get put on prednisone how soon can I

> > expect results? Or is it to individual to ask? I don't even get

> > seen by the rheumy again until the 3rd so we can set up the leg

> > biopsy. WAAAAAAAAAAAAAAAAAAAAAAA!!!

> >

> > Ed

> >

> > *what a whiner eh?*

[Guest guest]

Hi Ed.

Some people do make a very good recovery, with return to normal

strength. Connie, who posts here, is one of those. So far, so am I.

But it can take a while.

I do feel sorry for those folks who have PM, because I think it is

generally much harder for the doctors to make the diagnosis. There

are so many other very similar ailments that have to be eliminated

from consideration first. But for us DMers, when your face and

fingers start to turn purple you provide the doctors with a good clue.

By the way, you don't really seem the whining type.

Mike B

> Hi Mike. I've had blood work done about three times and each time

> everything came back normal. I'm not sure about aldolase level.

> From what I'm reading here, the problems with fatigue, etc. seem to

> continue well into treatment. I guess if there were a quick-fix

drug

> everyone would be on it. Do you ever get your strength back?

>

> Thanks for posting. I've been pretty grumpy myself lately.

>

> Ed

>

>

[Guest guest]

Hey, Mike...my face never turned purple...it's

creeping up my neck tho! And my thighs are almost all

purple...how about yours? Gee....stop for a

moment...that does sound - weird - LOL!!!!

Ah Ed, diagnosing this stuff is like smoke and mirrors

according to a couple of docs I've run into. But hang

tough, research and ask questions...and do what ya

gotta do to take care of yourself!

Oh, and Ed, the " real " reason Mike is grumpy is cause

he just got out of the doghouse! Our Canadian friend

here had the temerity to suggest to his wife that she

have a Thanksgiving dinner with all the trimmings

ready and waiting for him when he got home from

work...in honor of us Americans, of course. Ah ha!

LOL!!

Lynn

--- Mike Boyce wrote:

> Hi Ed.

>

> Some people do make a very good recovery, with

> return to normal

> strength. Connie, who posts here, is one of those.

> So far, so am I.

> But it can take a while.

>

> I do feel sorry for those folks who have PM, because

> I think it is

> generally much harder for the doctors to make the

> diagnosis. There

> are so many other very similar ailments that have to

> be eliminated

> from consideration first. But for us DMers, when

> your face and

> fingers start to turn purple you provide the doctors

> with a good clue.

>

> By the way, you don't really seem the whining type.

>

> Mike B

>

>

> > Hi Mike. I've had blood work done about three

> times and each time

> > everything came back normal. I'm not sure about

> aldolase level.

> > From what I'm reading here, the problems with

> fatigue, etc. seem to

> > continue well into treatment. I guess if there

> were a quick-fix

> drug

> > everyone would be on it. Do you ever get your

> strength back?

> >

> > Thanks for posting. I've been pretty grumpy

> myself lately.

> >

> > Ed

> >

> >

>

>

>

[Guest guest]

My docs focus on aldolase, AST, ALT and CPK (muscle

enzymes...creatine, isn't it?) Get a copy of your

records and check out your own labs. I discovered

higher levels a few months before August when my

problems began that apparently didn't get any notice.

Lynn

--- Ed wrote:

> Hi Mike. I've had blood work done about three times

> and each time

> everything came back normal. I'm not sure about

> aldolase level.

> From what I'm reading here, the problems with

> fatigue, etc. seem to

> continue well into treatment. I guess if there were

> a quick-fix drug

> everyone would be on it. Do you ever get your

> strength back?

>

> Thanks for posting. I've been pretty grumpy myself

> lately.

>

> Ed

>

>

> > > This waiting part is the pits! I did manage to

> get one of my

> docs

> > at

> > > work to order an elec chair for me though so

> hopefully that will

> > help

> > > in the mean time. If I do get put on prednisone

> how soon can I

> > > expect results? Or is it to individual to ask?

> I don't even get

> > > seen by the rheumy again until the 3rd so we can

> set up the leg

> > > biopsy. WAAAAAAAAAAAAAAAAAAAAAAA!!!

> > >

> > > Ed

> > >

> > > *what a whiner eh?*

>

>

>

[Guest guest]

Hi Ed... Like Mike said, each case is very different. I was first put

on it Nov. 5th at 60mgs a day. By Dec. 20th I had developed steroid

myopathy and had to quickly reduce the pred. Everyone is so different

in how they handle Prednisone. My first few weeks of taking it, I felt

like a million dollars....

~ Vicki ~

[Guest guest]

Do I even dare ask what steriod myopathy is? As for the rest of the

posts, I really do appreciate the input and advice. This myositis

business seems to come from another planet, or you could swear it did

based on other people's reactions. I noticed it wasn't even listed

on WebMD.org LOL!! Thanks again for all the feedback ... it's

great! Hopefully one day I'll be able to add someone worthwhile to

help out someone else. Take care.

Ed

>

> Hi Ed... Like Mike said, each case is very different. I was first

put

> on it Nov. 5th at 60mgs a day. By Dec. 20th I had developed steroid

> myopathy and had to quickly reduce the pred. Everyone is so

different

> in how they handle Prednisone. My first few weeks of taking it, I

felt

> like a million dollars....

[Guest guest]

Just curious...don't throw anything at me...but have

you considered the antibiotic protocol?

Lynn

--- anzavic@... wrote:

>

> Hi Ed... Like Mike said, each case is very

> different. I was first put

> on it Nov. 5th at 60mgs a day. By Dec. 20th I had

> developed steroid

> myopathy and had to quickly reduce the pred.

> Everyone is so different

> in how they handle Prednisone. My first few weeks

> of taking it, I felt

> like a million dollars....

>

>

>

>

>

[Guest guest]

Lynn

My.......aren't we getting a little racy asking

about peoples thighs?????? <snicker>

Teddi

mailto:teddifromok@...

[Guest guest]

Ed,

Yes you should dare ask. lol

Sometimes the Prednisone (steroid) itself causes a Myopathy (muscle

weakness) on top of the Myositis (muscle inflammation).

Doctors who know what they are doing watch for this. If the CPK is

going down and the weakness continues then a steroid myopathy is

suspected.

That's why you here about people being put on other drugs such as

Methotrexate, and Imuran along with the Prednisone. These are what

they call " steroid sparing " protocols. As the Methotrexate, Imuran or

other drugs begin to work they can lower the Prednisone dosage.

Lowering or getting off Prednisone is always the goal. Prednisone is

a wonder drug sometimes but also cause a variety of problems when you

take it long term.

Hope that helps some.

BillG

Camarillo, CA

PM

> Do I even dare ask what steriod myopathy is? As for the rest of

the

> posts, I really do appreciate the input and advice. This myositis

> business seems to come from another planet, or you could swear it

did

> based on other people's reactions. I noticed it wasn't even listed

> on WebMD.org LOL!! Thanks again for all the feedback ... it's

> great! Hopefully one day I'll be able to add someone worthwhile to

> help out someone else. Take care.

>

> Ed

[Guest guest]

Hi Ed

They put me on 60mg prednizone and I started

seeing results right away......of course my PCP had

never heard of DM so he kept me on that

doseage for 8 mo.....oh, if I had only known

then what I know now.

Teddi

mailto:teddifromok@...

[Guest guest]

Teddi,

What was the result of staying on that much Prednisone

for so long?

Lynn

--- TeddiFromOK@... wrote:

> Hi Ed

>

> They put me on 60mg prednizone and I started

> seeing results right away......of course my PCP had

> never heard of DM so he kept me on that

> doseage for 8 mo.....oh, if I had only known

> then what I know now.

>

>

> Teddi

> mailto:teddifromok@...

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Racy? Oh heck, Teddi, at this point in my life that's

quite a compliment. Naw, I'm just goofy in my old

age.

Lynn

--- TeddiFromOK@... wrote:

> Lynn

>

> My.......aren't we getting a little racy asking

> about peoples thighs?????? <snicker>

>

>

> Teddi

> mailto:teddifromok@...

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Hi Lynn.

I think I'm lucky. The only time I have purple thighs is when I wear

my Barney jammies.

Stay warm.

Mike B

> Hey, Mike...my face never turned purple...it's

> creeping up my neck tho! And my thighs are almost all

> purple...how about yours? Gee....stop for a

> moment...that does sound - weird - LOL!!!!

>

[Guest guest]

See, and Teddi thought I was being racy!!!

LOL!!! Morning, Mike...warm is easy...we're in the

mid 60s!!

Lynn

--- Mike Boyce wrote:

> Hi Lynn.

>

> I think I'm lucky. The only time I have purple

> thighs is when I wear

> my Barney jammies.

>

> Stay warm.

>

> Mike B

>

> > Hey, Mike...my face never turned purple...it's

> > creeping up my neck tho! And my thighs are almost

> all

> > purple...how about yours? Gee....stop for a

> > moment...that does sound - weird - LOL!!!!

> >

>

>

>

>

[Guest guest]

So once the pred starts working is it prudent to start cutting the

dosage?

Ed

> Hi Ed

>

> They put me on 60mg prednizone and I started

> seeing results right away......of course my PCP had

> never heard of DM so he kept me on that

> doseage for 8 mo.....oh, if I had only known

> then what I know now.

>

>

> Teddi

> mailto:teddifromok@w...

[Guest guest]

Thanks Lynn, Like you I can't stress enough to get your lab report.

Sometimes something could be missed by your doctor and you are able to

catch it. I only wish I got my labs when I was seeing the doctor that

I left. He kept telling me the labs were ALL normal. When I got my

full medical record from them, I was shocked to see my labs were NOT

normal. I was very sick at the time and my CPK was only 225 .... very

low but still very sick.

But my sed rate, aldolase, ANA and ALT were abnormal.

Another reason why the doctors have to pay more attention to the patient

and how he/she feels. Not all labs will show great jumps in the

numbers. And, after being on the meds, you might still have pain or

symptoms and all labs are normal... it's the nature of the disease and

your doctor has to work on the problems.

~ Vicki ~

[Guest guest]

Lynn

Because he hadn't a clue what he was doing.

Sent me to rheumy when I first got home

then took it from there.....of course at that

time I hadn't a clue either so thought that

was normal.

,,,lynnf@... wrote

<<<What was the result of staying on that much Prednisone for so long?

>>>

Teddi

mailto:teddifromok@...

[Guest guest]

Lynn

You want racy? I had a bout of cellulitus earlier

and went to the doctor.......now when showing your doctor your leg is

the biggest thrill you

have had in a loooooooong time.........maybe I

need to get a life?!?

Teddi

mailto:teddifromok@...

[Guest guest]

Ed

It all depends.......this is our theme song......

everyone reacts differently. If the prednisone

seems to be working ask your doctor. A lot

depends on the bloodwork as well as the

physical signs.

Teddi

mailto:teddifromok@...

[Guest guest]

Me, too, Teddi!!! My leg is permanently tatooed from

a botched surgery job and cellulitis. I hate wearing

dresses for that reason. And yes, it certainly is

thrilling....talk about Barney!!

Lynn

--- TeddiFromOK@... wrote:

> Lynn

> You want racy? I had a bout of cellulitus earlier

> and went to the doctor.......now when showing your

> doctor your leg is

> the biggest thrill you

> have had in a loooooooong time.........maybe I

> need to get a life?!?

>

>

> Teddi

> mailto:teddifromok@...

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Ed,

I knew on Christmas eve morning of '98 when was two. He woke up that

morning and when I went to change his diaper, he wouldn't bend his legs for

me. I guess my gut instinct kicked in in that single moment and life has

truly never been the same. On Dec. 21st we had gone bowling and he had done

everything himself. d the ball, etc. He got worse daily over that

Christmas weekend. Mon. was the 28th and we took him in. Blood was drawn

as the Dr. suspected Juvenile Rheumatoid Arthritis. On Wed, ( couldn't

even bend down by this time) the results came back negative. On Thursday

saw his regular Dr. who had been out of town. She was shocked to see

how was acting and walking. She knew him well. She ordered an x-ray.

The X-ray tech took me aside to whisper to me that the radiologist had

already looked at the X-ray and hadn't seen a fracture. It was New Years

Eve and she didn't want me to worry while waiting for 's Dr. to call me

with the results. We had been praying for a fracture. I wanted to lay down

and cry when she told me. She had thought that would be good news. A

fracture I knew we could fix. 's Dr. consulted with a Juvenile

Orthopedist who told her to run a CPK test on the blood that had been drawn

the previous Monday. We didn't know what CPK was and we were told to wait

by the phone for the results. We received a call at 7:16 New Years Eve from

's Dr. who told us that his CPK level was 3700 and that was indicative

of only one thing. She then told us that had Duchenne's Muscular

Dystrophy. Duchenne's life expectancy is to around the age of 16. Luckily

my parents had been staying with us over the holidays as the next 72 hours

were the worst I've even had to live through. I remember throwing up,

passing out, my mom carried a paper bag with us as I would start to

hyperventilate at anytime. We had already decided to open our business in

Augusta, GA. We were living in Charlotte, NC at the time became ill.

Our office was to open Jan. 4th. The kids and I were going to move in the

spring and Jeff was going to commute the 2 1/2 drive every weekend and then

sell our house in the spring and move in the summer. The dx changed

everything. We went to Augusta the next day and rented out a house, a ranch

so wouldn't have stairs. My mother and I returned to Charlotte,

rented out our house there and packed us up in 3 weeks time. I remember

everything and nothing from that time. It seemed like such a chore to even

remember to breathe. was getting worse by the day so they decided to

do a muscle biopsy to see why his MD was so aggressive. The biopsy was done

on Jan. 22nd. We were not given any hope. They were very firm in their dx.

On Jan. 26th the phone rang again and it was 's Dr. calling us to

change his Dx to JDM. I had never heard of it but she told us that one of

the best J. Rheumy's was in Augusta, GA where we were already moving and she

had already made an appt. for 2/2. The rheumy hadn't wanted to

start steroids yet but 's Dr. and the orthopedist decided the sooner

the better and took his first done of steroids that night. We saw

results 2 days later. On Jan. 30th turned 3. That was quite a party!

So, for us, Dermatomyositis is a gift. I know that sounds odd and I would

do anything if it was me and not who had it, but we are certainly

counting our blessings. I have met many mothers who have sons with

Duchenne's MD. is a junior goodwill ambassador for the MDA.

Duchenne's is a devestating disease. I have spend a lot of time this week

at MCG sitting with a dear friend who's 8 year old who has MD is fighting

viral pneumonia. He is fighting for every breath. I wish for every family

that they would get the phone call that we did. I am sorry I got long

winded. It has been an amazing 3 years.

Cari

>

>Reply-To: OurMyositis

>To: OurMyositis

>Subject: Re: I can't wait for a diagnosis!!

>Date: Thu, 29 Nov 2001 04:13:37 -0000

>

>WOW! You must have been petrified before you found out what was

>wrong with him. Poor guy. So glad he's doing much better now.

>

>Ed

>

>

> > Ed,

> > was virtually a rag doll when he started the Prednisone. He

>could

> > hardly lift his head. He was sleeping with me at night because he

>couldn't

> > roll over by himself or even pull his own blankets off and on.

>Within 48

> > hours of his first Pred. dose, he was able to slide off the couch

>and stand

> > on his feet. He would still be leaning on the couch but it was

>amazing

> > progress. It was a good 9 months for him to be able to get up and

>down off

> > of the floor without help. Every one is different. Prednison for

>us was

> > mostly a very positive experience.

> > Cari

> >

> >

> >

> >

> > >From: " Ed " <ed@r...>

> > >Reply-To: OurMyositis@y...

> > >To: OurMyositis@y...

> > >Subject: I can't wait for a diagnosis!!

> > >Date: Tue, 27 Nov 2001 02:21:21 -0000

> > >

> > >This waiting part is the pits! I did manage to get one of my docs

>at

> > >work to order an elec chair for me though so hopefully that will

>help

> > >in the mean time. If I do get put on prednisone how soon can I

> > >expect results? Or is it to individual to ask? I don't even get

> > >seen by the rheumy again until the 3rd so we can set up the leg

> > >biopsy. WAAAAAAAAAAAAAAAAAAAAAAA!!!

> > >

> > >Ed

> > >

> > >*what a whiner eh?*

> > >

> >

> >

> > _________________________________________________________________

> > Get your FREE download of MSN Explorer at

>http://explorer.msn.com/intl.asp

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

My God I would have been beside myself if that would have been one of my kids. Looks like you held up well enough to make the smart decisions that mattered. Good on you!

I think the rheumy I have now is ok. He already admitted that he has only heard of this and not actually worked with a case. On the plus side he is receptive to what I tell him, unlike some of the military docs I've run into before. Some I just wanted to strangle.

So far today, the neck soreness seems to have lessened and I'm walking ok, weak though. I feel pretty drained even though I got over 7 hours sleep. I seem to have more difficulty reaching if that makes any sense. Guess we'll just have to wait and see what the rest of the day brings.

Take care.

Ed

I can't wait for a diagnosis!! > > >Date: Tue, 27 Nov 2001 02:21:21 -0000> > >> > >This waiting part is the pits! I did manage to get one of my docs>at> > >work to order an elec chair for me though so hopefully that will>help> > >in the mean time. If I do get put on prednisone how soon can I> > >expect results? Or is it to individual to ask? I don't even get> > >seen by the rheumy again until the 3rd so we can set up the leg> > >biopsy. WAAAAAAAAAAAAAAAAAAAAAAA!!!> > >> > >Ed> > >> > >*what a whiner eh?*> > >> >> >> > _________________________________________________________________> > Get your FREE download of MSN Explorer at>http://explorer.msn.com/intl.asp>_________________________________________________________________Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

Ed,

's Pediatrician also admitted that he knew nothing about the disease

but he would learn. I will take that any day over a Dr. who pretends to

know but actually knows nothing and uses arrogance to hide it. A doctor

willing to learn is a good thing. Many of us take articles or posts from

the internet into share with their Doctor. 's Rheumy is always eager

to hear what my friends on this site have to say about different subjects

and what their experiences have been. If he is willing to listen to you,

that's even better. Hope you are having a better day today.

Cari

>

>Reply-To: OurMyositis

>To: <OurMyositis >

>Subject: RE: I can't wait for a diagnosis!!

>Date: Thu, 29 Nov 2001 08:02:14 -0600

>

>My God I would have been beside myself if that would have been one of my

>kids. Looks like you held up well enough to make the smart decisions that

>mattered. Good on you!

>

>I think the rheumy I have now is ok. He already admitted that he has only

>heard of this and not actually worked with a case. On the plus side he is

>receptive to what I tell him, unlike some of the military docs I've run

>into

>before. Some I just wanted to strangle.

>

>So far today, the neck soreness seems to have lessened and I'm walking ok,

>weak though. I feel pretty drained even though I got over 7 hours sleep.

>I

>seem to have more difficulty reaching if that makes any sense. Guess we'll

>just have to wait and see what the rest of the day brings.

>

>Take care.

>

>Ed

> I can't wait for a diagnosis!!

> > > >Date: Tue, 27 Nov 2001 02:21:21 -0000

> > > >

> > > >This waiting part is the pits! I did manage to get one of my docs

> >at

> > > >work to order an elec chair for me though so hopefully that will

> >help

> > > >in the mean time. If I do get put on prednisone how soon can I

> > > >expect results? Or is it to individual to ask? I don't even get

> > > >seen by the rheumy again until the 3rd so we can set up the leg

> > > >biopsy. WAAAAAAAAAAAAAAAAAAAAAAA!!!

> > > >

> > > >Ed

> > > >

> > > >*what a whiner eh?*

> > > >

> > >

> > >

> > > _________________________________________________________________

> > > Get your FREE download of MSN Explorer at

> >http://explorer.msn.com/intl.asp

> >

>

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at

>http://explorer.msn.com/intl.asp

>

>

>

[Guest guest]

It's just barely starting to hit my shoulders. Maybe I should take

Baloo to my next appointment LOL!!

Ed

> Ed

> The problems in reaching is that you are using

> the big shoulder muscles. Before I was dx I

> couldn't lift a cereal bowl up to put it in the

> undercounter toaster oven.

> They say the squeaky wheel gets the grease

> so you need to be very vocal about getting

> dx. Take Baloo he looks tough enough...lol

>

>

> Teddi

> mailto:teddifromok@w...