Guest guest Posted April 12, 2001 Report Share Posted April 12, 2001 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! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2001 Report Share Posted April 12, 2001 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! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2001 Report Share Posted April 12, 2001 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 > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2001 Report Share Posted April 12, 2001 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2001 Report Share Posted April 12, 2001 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@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2001 Report Share Posted April 13, 2001 > 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2001 Report Share Posted April 15, 2001 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2001 Report Share Posted April 15, 2001 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 !!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2001 Report Share Posted April 16, 2001 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2001 Report Share Posted April 16, 2001 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2001 Report Share Posted April 16, 2001 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2001 Report Share Posted April 29, 2001 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2001 Report Share Posted April 29, 2001 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 Quote Link to comment Share on other sites More sharing options...
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