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Dermatomyositis

Posted by @buttons in Lung Health, Sep 21, 2011

Does anyone else have this disease?

Tags: lung conditions

Grayb38 likes this
ahrrsnh3

Posted by @ahrrsnh3, Oct 29, 2011

Within the past month my 4 yr old has been diagnosed with dermatomyositis. He started with the rash and we are having trouble with over-lying symptoms because he also has Cerebreal Palsy. They are looking at starting him on Methotrexate.. but first he has to have an EMG. How were you diagnosed? There is not a whole lot of info out there on this, it seems extremely rare. We are seeing an Rhuemotologist but I truly feel he is unsure about so much of this disease.

buttons likes this
terrie

Posted by @terrie, Nov 6, 2011

OMG, I so feel for you. I am a mom and a dermatomyositis suffer. I had to do an EMG too, yuck. The Dermatologist saw me and said yep, this is DMS (my shorthand for this nastiness). I also had blood work and a BIG muscle biopsy to verify DMS and not polymyositis, etc.. I am one month + in on high dose prednisone and so far not getting better but I also have other issues that are making it difficult to treat. There doesn't seem to be a lot that they know. I too feel frustrated and in the dark but, Mayo has saved my life before and the life of my son so I have faith they are doing the best they can.

buttons likes this
buttons

Posted by @buttons, Nov 9, 2011

I have had this for over 8 years. I also have the lung problem with it. Am on o2 24-7. Hang in there been where you are with the high dose of prednisone. I also see a rumetologist ( can not spell) for my muscles and a lung doc. The mayo really helped me 8 years ago. You will be very moody from the meds. and very hungry. Pray alot.

buttons

Posted by @buttons, Nov 9, 2011

Hi, am so sorry your child has this. I have had mine for 8 years. My doc. did not know what i had so he sent me to the Mayo and they diagnosed it. It is rare but it seems more are getting it. I was on Methotrexate, now on Imuran. Am holding my own. I do have the lung problem with it. My rhuemotologist is great, because he has seen older adults with this disease, if yours is unsure find another one or bring him all the info. about this disease and he can read up on it. Am praying for your child and you. It is hard but I am here for ya.

barbl

Posted by @barbl, Nov 14, 2011

I have had it for three years and it started with the skin and continuing decline in all muscle strength getting to the point I had problems swallowing. The muscle biopsy was the final indicator. I think everyone is still uncertain about the disease. I started out with methotrexate but started losing hair, so now am on imuran. I have also received two series of IVIG treatments and will probably have more the beginning of the year. It is a long haul and continuing battle. I had a previous specialist that didn't listen when I told her I was getting weaker again. She just kept telling me my blood tests were fine. My general physician sent me to Mayo and the drs there told me the blood tests were not good indicators of muscle involvement. The drs I have are listening and very informative. I see them every six months or as needed. If you are having problems with your current dr, find another.

buttons likes this
buttons

Posted by @buttons, Nov 14, 2011

Thanks barbl for the imput. Hang in there. I still have not found many with the lung problem like I have. I read everything on this disease from all clinics. There is alot of info. out there.

barbl

Posted by @barbl, Nov 27, 2011

When I was first diagnosed, I searched for info, but there wasn't much out there. Of course, that was a few years ago. Evidently this has changed, or you're better at searching it out. I did find a book called "Dermatomyositis" on Amazon for well over $100. Not sure I wanted to invest so much if it was a medical text. I'll have to search again.

buttons

Posted by @buttons, Nov 29, 2011

I checked into everything on the net. Also since this disease effects muscels ( cant spell today) check the MS web site. Found infom there also.

vickis

Posted by @vickis, Feb 28, 2012

In 2007 I was diagnosed with Dermatomyositis. The disease had progressed to the point that I was unable to move on my own or swallow. Today, however, I am drug free, but not completely cured. In the beginning I addded changes to my diet, a supplements and high doses of prednisone. Thankfully, within a few months they brought me back to a normal life. There were several other medications that my doctor recommended I take. I decided against them and I am thankful that I was able to continue without them. I dont know what the answers are beyond seeking the Lord and allowing Him to direct you to better health, giviing your body nutrients, minerals and anti-oxidants, and removing as much sugar from your diet as you can. In 2007 I couldnt find any information regarding Dermatomyositis and was surprised to find you all today (I looked on this site years earlier). I heard a holistic doctor say, "auto-immune diseases have risen 80% since the late 80's. I hope you are all better today than when you posted your writings!!!

buttons

Posted by @buttons, Feb 28, 2012

Thank you Vicki S. The Grace of God and prayer is the only way I have lived this far with this disease. Going on my 9th year! Still have good days and bad starting getting this little twitch in my muscles these last few months. My lungs are the same still on oxygen, but you do not give up and you keep going forward!

adamsmom

Posted by @adamsmom, Apr 9, 2012

You are so right about finding information about this disease. Our journey started in 2001 right before 911, that was the most emotionally taxing year of my life. We went through the oral chemo, steriods, and IVIG treatments at a Childrens Hospital in Dallas. They were amazing, with diabetes and out of the age range of 16 we were not looking too hopeful. Again as everyone has commented that it is by the grace of God's love that my son survived this illness. He was told he would become totally blind because of the diabetes, and that he would not have children. Well here we are 11 years later and the dermato is back but he can see enough to take care of his 4 children, God is Good and Merciful. Our concern now is for my son to be strong enough to do what he can to care for his kids while his wife is the bread winner. Great grandma is coming down to help with meals at least until school is out and I can take over. Right now my main concern is finding a healthy meal regiment for Adam to have as much strength as he can. We used Advocare 11 years ago, so we are looking at protien rich foods and supplements to help this time around. Good luck to all with this illness. Maybe we can launch a blog with the grace of God to educate others.

buttons likes this
ccates75

Posted by @ccates75, Sep 22, 2012

I have been recently diagnosed with DMS, with Interstitial Lung Disease, and COPD with emphasema (sp?). My diagnosis came last April after being symptomatic since 2006. Mine started from what I can tell alot differently than others. Mine started with 3 episodes of Bell's Palsy, brain and lung infiltrates. They had misdiagnosed it as sarcoidosis, neurosarcoidosis and Lupus. I still don't know if they even have it right. I have been to 4 states worth of specialtists, including the Mayo in Rochester, before coming to TX and getting the diagnosis through a thigh biopsy and a lung biopsy. The Mayo clinic had actually told me that this was all in my head!! And that I was just sleep deprived, had Sleep Apnea and was depressed. I still have not had a stable lab work set up since diagnosis, so frustrating and hurting so bad in the mean time! I don't know much about DMS than what I read online, which isn't much. So I am hoping to hear feedback from people that are going through the exact same thing! Anything helps!

buttons

Posted by @buttons, Sep 22, 2012

Dear ccates, I am going on my 10th year with DMS and ILD, was doing good for about 3 years then this summer I had caught a bug and my disease flared up big time and had to have another bronchoscopy done. Now am on prednisone again but tappering down and on cellcept, so far so good. We caught it in time to ware I did not do any more scarring in my lungs. I have learned to rest when your tired! Find a good rhumitologist ( can not spell) and a good lung doc. You know your own body. I was diagnosed at the mayo by a doc who was retired and just helping out for a few weeks. He at that time had only seen maybe 75 people in his career with DMS and ILD.
Did they do blood work and check for Anti-Jo 1 ? If they have not tell them you need that blood work done. Look up it up on the net. Do not give up, keep plugging along and make them listen to you. Am here for ya. If ya have nay more ?

ccates75

Posted by @ccates75, Sep 29, 2012

Good Afternoon Buttons, Yeah, if I go by the date of when I first became ill and symptomatic, this is my 6th year with this. So glad to hear they caught your bug in time! I have had a few bronchoscopys myself, ugh, is all I can say. Right now I am on pain medicine and Imuran. I do have a great team of dr.'s thank God. I have a rheumatologist and a pulmonologist. My scarring in my lungs is a little worse now than last year. Because of the ILD they can't put me on Methotrexate. Cause I guess it would just do further damage to the lungs. I am glad I have finally found somebody with the lung problems as well as DMS, that I can relate to. I'm not sure if they chacked for the Anti-Jo 1, but I know they have done everything under the sun, but I will ask my rheum. dr. when I see her next. But I just can't seem to get to a stable spot with the meds that I'm on. It seems like every 3 months or so, my labs come back all screwy. So, I am waiting. Because that's all I can do...It just sucks because there is never a day where I completely feel OK. I'm not expecting to feel 100%, but everyday, it's either, im in alot of pain, headache for days on end, or nauseated all day. Ugh. Thanks for replying, it's nice to have someone to talk to.

dbdeer

Posted by @dbdeer, May 18, 2015

Dx DMS IN 1998. Re prednisone 2 years, then methotrexate for 4 years. Have been in remission, sort of, since 2004. Just diagnosed with interstitial lung disease and doc wants to put me on cellcept, but no go per Blue Shield. How do others get this okayed by insurance? Or is it because I'm on Medicare and "FDA has not approved its use for this disease"? Praying for miracles to happen here!

buttons

Posted by @buttons, May 18, 2015

Hi,
I'm on cellcept and on Medicare they do cover this drug but your doctor may have to write them a note.
So sorry you have this disease, I'm on my 13 year with it and ILD. Went to the Myosistis Association conference last year, it is in Florida this year but if you can go, they have doctors there and so many classes with so much info. Check them out on line.
Will pray for you

dbdeer

Posted by @dbdeer, May 18, 2015

Thank you, Buttons, for both the info and the prayers. My doc has spent at least 1 hour on the phone with Blue Shield, and the answer each time has been a resounding no. What state are you in and what is your supplemental insurance? If it's Blue Shield, I'm gonna have a hissy fit!!!    Hope to hear from you soon.  Blessings, 
Db 

buttons

Posted by @buttons, May 18, 2015

Hi,
I live in Wyoming and my insurance is Medicare Blue RX thru Blue Cross and Shield.
Where do you live?

dbdeer

Posted by @dbdeer, May 18, 2015

Hi,I live in Northern California. My next step is to document those folks who have been taking cellcept for DMS/ILD and having it paid by insurance.  I can then have something in my hot little hand to show the insurance folks.  Thank you for the info.Peace, 
Db

adamsmom

Posted by @adamsmom, May 19, 2015

When my son was first diagnosed in 2001 we had Blue Cross Blue Shield and it covered his drs and meds. When he came of age he qualified for State Medicade.
 And let us not grow weary while doing good, for in due season we shall reap if we do not lose heart.
Galatians 6:9

Myriam likes this
buttons

Posted by @buttons, May 19, 2015

Amen!

Myriam likes this

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