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Hi Annette,

Welcome to the list. Sorry that I took so long to say hello; it's been

a busy week so far. Like Cari, I have a child with JDMS (Juvenile

Dermatomyositis), a 10YO girl named was was diagnosed a little

over 3 years ago. If you're interested, I have documented 's

journey with JDMS in a Diary format and it is published online. You

can read it at: http://www.ralphb.net/JDMS/

I'll take a shot at some of your questions:

1) has not had any permanent muscle damage, but it can happen,

especially if dx is delayed.

2) Not - whe she flared, there was a definite correlation between

her clinical condition and lab results.

3) Not everyone gaine weight on Prednisone (there are few absolutes

when it comes to medication), but it takes a tremendous effort and diet

control to prevent it. Plus, some people are naturally less

succeptible to side effects than others.

4) Currently, is at 100% strength and stamina. At her worst, she

had trouble climbing a set of stairs.

Ralph

> 1. Have any of you suffered muscle damage?

> 2. Do any of you experience a flare-up even though the blood work

> shows no sign of one?

> 3. Does everyone gain weight on prednisone?

> 4. What is the level of your fatigue?

> Thanks in advance for any answers you may offer. I'm glad to be a

> part of this group. It's a relief to find understanding. Annette

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

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

Will Juggle for Food. RKBA!

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Good morning, Ralph, and thank you for responding to my message. I have a

niece named . It's always hard to hear about a child with a medical

problem. Most of us would be glad to take on her discomfort and leave her

free of symptoms if we only could. I'm going to log on to your diary this

morning. Thanks for giving me the address. My thoughts are with , you

and the rest of your family. Also, thanks so much for your answers to my

questions. Every little bit of info helps, as you well know. Please give

my best. Annette

Re: a few questions for you

Hi Annette,

Welcome to the list. Sorry that I took so long to say hello; it's been

a busy week so far. Like Cari, I have a child with JDMS (Juvenile

Dermatomyositis), a 10YO girl named was was diagnosed a little

over 3 years ago. If you're interested, I have documented 's

journey with JDMS in a Diary format and it is published online. You

can read it at: http://www.ralphb.net/JDMS/

I'll take a shot at some of your questions:

1) has not had any permanent muscle damage, but it can happen,

especially if dx is delayed.

2) Not - whe she flared, there was a definite correlation between

her clinical condition and lab results.

3) Not everyone gaine weight on Prednisone (there are few absolutes

when it comes to medication), but it takes a tremendous effort and diet

control to prevent it. Plus, some people are naturally less

succeptible to side effects than others.

4) Currently, is at 100% strength and stamina. At her worst, she

had trouble climbing a set of stairs.

Ralph

> 1. Have any of you suffered muscle damage?

> 2. Do any of you experience a flare-up even though the blood work

> shows no sign of one?

> 3. Does everyone gain weight on prednisone?

> 4. What is the level of your fatigue?

> Thanks in advance for any answers you may offer. I'm glad to be a

> part of this group. It's a relief to find understanding. Annette

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

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

Will Juggle for Food. RKBA!

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Annette,

Here are my answers:

1) was diagnosed very quickly, therefore, there is no permanent muscle

damage.

2) Since beginning Prednisone, has not experienced a flare. (Everyone

knock on wood) His lab results returned to normal, however, long before his

muscles did.

3) became very puffy the first few months he was on Prednisone. He

was only comfortable in elastic waste pants. It was worse after his

afternoon naps. He would wake up with his face so swollen he could hardly

open his eyes. After the first nine months or so he seemed to level off and

the puffyness disappeared. He is still on 2.5 mg. of Prednisone every other

day and is very slim and tall. The Prednisone halted his growth at first

but we were told that once he got to a maintenance level he would catch up

to where he would of been without the Prednisone. His Dr. was right. He

really shot up once he got to 5mg.

4) does seem to fatigue easily but he is so active it is hard to know

how tired he would be anyway. At 's worst he couldn't walk or even

bear weight on his legs. He couldn't hold his own head up or even roll over

in his sleep by himself. Now he is fine.

6) Thanks for the kind words. I would gladly trade places with , as

any parent would. I have learned so much from him. I try everyday to show

the courage and positive attitude that he does.

Hugs,

Cari

>From: annflam@...

>Reply-To: OurMyositis

>To: OurMyositis

>Subject: a few questions for you

>Date: Thu, 12 Apr 2001 11:09:32 -0000

>

>Good morning everyone!

> I'm a new member and I'm still trying to learn how to use Yahoo.

>I THOUGHT I sent this message a few minutes ago, but it appears to

>have gotten lost. I'd really appreciate any answers you may offer

>for these few questions I have. This is the first time I've had an

>opportunity to discuss DM with other patients.

> 1. Have any of you suffered muscle damage?

> 2. Do any of you experience a flare-up even though the blood work

>shows no sign of one?

> 3. Does everyone gain weight on prednisone?

> 4. What is the level of your fatigue?

> 5. Who among you had to retire from your profession prematurely

>because of DM?

> 6. A personal note to the lady who is the mother of the five-year-

>old little boy who has Juv. DM: My heart goes out to you. It's

>terrible when children have to go through things like this. Please

>know I care.

> Thanks in advance for any answers you may offer. I'm glad to be a

>part of this group. It's a relief to find understanding. Annette

>

_________________________________________________________________

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Dear Annette,

Welcome to the list--we have a great group of people! I am Ann-Marie and I

technically have Mixed Connective Tissue Disease(MCTD), an autoimmune

disease with features of lupus, scleroderma, and PM. My disease most

closely resembles PM, so I joined this wonderful list.

As far as the prednisone goes, I don't know of anyone who has been on it

long term who HASN'T gained weight. and I (in our next life) are

going to design fashions for women on Prednisone, featuring caftans for each

season!!!!!!!!!!! I have gained 30 pounds over 7 years and miss my 'lil 120

on the scale. My fatigue varies--I usually feel like I was hit by a

truck--sometimes a train, and last winter when I was really flared, like the

Titanic had come. I hope this helps a little--wishing you peace and

healing...

Ann-Marie

_________________________________________________________________

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Hi Annette

I'll try to answer what I can for you.

1. Have any of you suffered muscle damage?

I'm sure I have...no dr has ever said but I

can feel that I have no muscle tone at all.

      2. Do any of you experience a flare-up even though the

blood work shows no sign of one?

So called " remission " in DM just means that

your blood work is normal.... you still have

the pain, depression, fatique, etc even if

you don't have a flare........and yes flares

happen without blood work changes

      3. Does everyone gain weight on prednisone?

I've never met anyone who didn't......I had

Tiger Cat on predisone and he even got

the " pred pudge "

      4. What is the level of your fatigue?

It changes....sometimes I feel real energetic

and other times I hardly have the energy to

get out of the recliner

      5. Who among you had to retire from your profession

prematurely because of DM?

I was already retired but it certainly changed

my life.......I was a " snowbird " ...RVing in

Arizona in the winter and lived on theOregon

Coast in the summer......let's just say I had

my wings clipped!

      

Teddi

mailto:teddifromok@...

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> Good morning everyone!

> I'm a new member and I'm still trying to learn how to use

Yahoo.

> I THOUGHT I sent this message a few minutes ago, but it appears to

> have gotten lost. I'd really appreciate any answers you may offer

> for these few questions I have. This is the first time I've had an

> opportunity to discuss DM with other patients.

> 1. Have any of you suffered muscle damage?

> 2. Do any of you experience a flare-up even though the blood

work

> shows no sign of one?

> 3. Does everyone gain weight on prednisone?

> 4. What is the level of your fatigue?

> 5. Who among you had to retire from your profession prematurely

> because of DM?

> 6. A personal note to the lady who is the mother of the five-

year-

> old little boy who has Juv. DM: My heart goes out to you. It's

> terrible when children have to go through things like this. Please

> know I care.

> Thanks in advance for any answers you may offer. I'm glad to be

a

> part of this group. It's a relief to find understanding. Annette

Annette,

I have PM and was dx'd late. I've had extensive muscle

deterioration on my thighs and biceps. Almost a third of my thighs,

and my biceps are like mush. From what I understand they will never

come back.

I have flare-ups when I over exert myself. I haven't gained weight,

however, my face got puffy and I have mood ups and downs. I had to

close my hearing aid business because of the fatigue factor. Lost my

hair from the Meth.... and???? Hopefully the future will be better. I

would really like to know who else had Mono.? I had it twice also

when I was young.

Most of us have a difficult time dealing with the disease. I too

have great feelings for those children who have any of the related

diseases.

God bless all.

Bo

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Anne-Marie...it helps more than a little; it helps a lot. I gained 30 pounds

the day after I started taking pred. :-) and it's been with me ever since!

Talk soon, Annette

Re: a few questions for you

Dear Annette,

Welcome to the list--we have a great group of people! I am Ann-Marie and I

technically have Mixed Connective Tissue Disease(MCTD), an autoimmune

disease with features of lupus, scleroderma, and PM. My disease most

closely resembles PM, so I joined this wonderful list.

As far as the prednisone goes, I don't know of anyone who has been on it

long term who HASN'T gained weight. and I (in our next life) are

going to design fashions for women on Prednisone, featuring caftans for each

season!!!!!!!!!!! I have gained 30 pounds over 7 years and miss my 'lil 120

on the scale. My fatigue varies--I usually feel like I was hit by a

truck--sometimes a train, and last winter when I was really flared, like the

Titanic had come. I hope this helps a little--wishing you peace and

healing...

Ann-Marie

_________________________________________________________________

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

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and I (in our next life) are going to design fashions for women on Prednisone, featuring caftans for each season!!!!!!!!!!

Ann-Marie

Im working on patterns already. Will make sure they are with me when I leave this lovely body !!!

My cats knead me !!!!

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Hi Annette :-)

Sorry for the late reply to your survey. As you might recall when I contacted you last week, I tried to give you "my story" as written on the www.rheumatic.org site. Unfortunately, the site has been down since then and they tell me it will be up in a few days, give or take. In the meantime, you can (hopefully) access the site at this address: http://203.38.143.27/ and my story appears at: http://203.38.143.27/connie.htm Please feel free to discuss this option.....it is becoming more common to have doctors agree to use it for diseases related to RA like dermatomyositis, in addition to RA itself.

As for your questions......

1. Have any of you suffered muscle damage?

My legs seem fine but my arms might have suffered a slight amount of damage before I was put on the antibiotic treatment. Still, I can lift a 3 gallon jug of water up to top off the water level in the aquarium. Most importantly .....I can open the big glass doors of my favorite department store whereas when I first got sick those doors were a real challenge :-)

2. Do any of you experience a flare-up even though the blood work shows no sign of one?

My CPKs have been normal for almost a year and a half. The only flares I notice involve my skin rash. Sometimes it is completely clear and now and then it will give me the red semi-painful eyelids and a little bit of involvement down the side of my face. Also, the crow's feet wrinkles on that side are more noticeable. I read that the reason for this is due to the breakdown of the connective tissue.

3. Does everyone gain weight on prednisone?

Annette, the nice thing about the antibiotic therapy is that most people are able to get off of or never start prednisone. I'm sure this is totally foreign to the doctors who are inexperienced in this treatment. Having never had to take prednisone, I feel very lucky although I KNOW I would have gained a lot of weight if I had been on it.

4. What is the level of your fatigue?

Somewhere around the time that my CPK's returned to normal my fatigue level finally normalized, as well. I have heard from other antibiotic therapy users that the fatigue factor is the last thing to improve...but it will eventually.

5. Who among you had to retire from your profession prematurely because of DM?

I didn't have the option of retiring..... couldn't find anyone else to take my job of homemaker/housewife/chief cook and bottle washer/bill payer/taxi driver/errand runner. Eventually, as our college kids totally drain our budget, I know I'll be out in the real world one of these days.

Hope this helps! Looking forward to sharing any and all with you later, too. Please feel free to ask any questions that come to mind.

Take care,

Connie

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Connie...I downloaded your story site and read it. I found it interesting, but was quite surprised to discover that your symptoms and mine (I, too, have DM) are so very different. The muscle weakness is similar, but the foot pain and other symptoms are not what I experience. I guess this disease has many faces and presents itself in many ways, huh? Thanks so much for answering my questions and for the web site help. Annette

-----Original Message-----From: JHACHE Sent: Monday, April 16, 2001 5:24 PMTo: OurMyositis Subject: Re: a few questions for you

Hi Annette :-)

Sorry for the late reply to your survey. As you might recall when I contacted you last week, I tried to give you "my story" as written on the www.rheumatic.org site. Unfortunately, the site has been down since then and they tell me it will be up in a few days, give or take. In the meantime, you can (hopefully) access the site at this address: http://203.38.143.27/ and my story appears at: http://203.38.143.27/connie.htm Please feel free to discuss this option.....it is becoming more common to have doctors agree to use it for diseases related to RA like dermatomyositis, in addition to RA itself.

As for your questions......

1. Have any of you suffered muscle damage?

My legs seem fine but my arms might have suffered a slight amount of damage before I was put on the antibiotic treatment. Still, I can lift a 3 gallon jug of water up to top off the water level in the aquarium. Most importantly .....I can open the big glass doors of my favorite department store whereas when I first got sick those doors were a real challenge :-) 2. Do any of you experience a flare-up even though the blood work shows no sign of one?

My CPKs have been normal for almost a year and a half. The only flares I notice involve my skin rash. Sometimes it is completely clear and now and then it will give me the red semi-painful eyelids and a little bit of involvement down the side of my face. Also, the crow's feet wrinkles on that side are more noticeable. I read that the reason for this is due to the breakdown of the connective tissue.

3. Does everyone gain weight on prednisone?

Annette, the nice thing about the antibiotic therapy is that most people are able to get off of or never start prednisone. I'm sure this is totally foreign to the doctors who are inexperienced in this treatment. Having never had to take prednisone, I feel very lucky although I KNOW I would have gained a lot of weight if I had been on it.

4. What is the level of your fatigue?

Somewhere around the time that my CPK's returned to normal my fatigue level finally normalized, as well. I have heard from other antibiotic therapy users that the fatigue factor is the last thing to improve...but it will eventually.

5. Who among you had to retire from your profession prematurely because of DM?

I didn't have the option of retiring..... couldn't find anyone else to take my job of homemaker/housewife/chief cook and bottle washer/bill payer/taxi driver/errand runner. Eventually, as our college kids totally drain our budget, I know I'll be out in the real world one of these days.

Hope this helps! Looking forward to sharing any and all with you later, too. Please feel free to ask any questions that come to mind.

Take care,

Connie

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Hi Annette,

I'm glad you could finally access the site and my story. Yeah.....my symptoms (especially the initial ones) really baffled my doctor(s). They didn't really fit into any one diagnosis....maybe it was more like mixed connective tissue disease rather than strictly DM. The foot pain is more similar to RA and I don't know where the neuropathy zinger-like sensations fit in.....I'm just glad they're gone :-)

All in all, the antibiotic therapy pretty much works for a large variety of rheumatic diseases, so I guess the actual diagnosis isn't that important in this instance.

Take care,

Connie

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  • 2 weeks later...
Guest guest

Annette, I know it has been quite a while since you asked these questions,

but I think some of my answers are different from the others, so I will

answer them for you.

> 1. Have any of you suffered muscle damage?

I don't know because the proper testing has not been done.

> 2. Do any of you experience a flare-up even though the blood work

> shows no sign of one?

Definitely. My bloodwork was normal during my worst flare-up and some

doctors refused to believe I was sick. Thank goodness for a terrific PCP

who knows what I am going through.

> 3. Does everyone gain weight on prednisone?

Usually, but it varies tremendously due to how you approach it. I was on

prednisone for 9 months and gained 25 pounds. I was told this was a very

low weight gain for the amount of prednisone I was on and for the duration.

It doesn't feel low to me, it feels horrible. I will be glad to loose it!!!

> 4. What is the level of your fatigue?

My level of fatigue is very low particularly in the winter months, but low

even in the spring and summer.

> 5. Who among you had to retire from your profession prematurely

> because of DM?

I had to retire but we were not completely sure what my true diagnoses were

until three years later and we still don't have all the information we would

like. I have horrible luck finding a good and cooperative specialist.

Gentle hugs,

Fern

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Fern...Again, thanks from the bottom of my heart. Annette

Re: a few questions for you

Annette, I know it has been quite a while since you asked these questions,

but I think some of my answers are different from the others, so I will

answer them for you.

> 1. Have any of you suffered muscle damage?

I don't know because the proper testing has not been done.

> 2. Do any of you experience a flare-up even though the blood work

> shows no sign of one?

Definitely. My bloodwork was normal during my worst flare-up and some

doctors refused to believe I was sick. Thank goodness for a terrific PCP

who knows what I am going through.

> 3. Does everyone gain weight on prednisone?

Usually, but it varies tremendously due to how you approach it. I was on

prednisone for 9 months and gained 25 pounds. I was told this was a very

low weight gain for the amount of prednisone I was on and for the duration.

It doesn't feel low to me, it feels horrible. I will be glad to loose it!!!

> 4. What is the level of your fatigue?

My level of fatigue is very low particularly in the winter months, but low

even in the spring and summer.

> 5. Who among you had to retire from your profession prematurely

> because of DM?

I had to retire but we were not completely sure what my true diagnoses were

until three years later and we still don't have all the information we would

like. I have horrible luck finding a good and cooperative specialist.

Gentle hugs,

Fern

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