Dermatomyositis

Posted by buttons @buttons, Sep 21, 2011

Does anyone else have this disease?

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@ccates75

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!

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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 ?

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@ccates75

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!

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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.

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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!

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@dbdeer

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!

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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

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@dbdeer

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!

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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 

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@dbdeer

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!

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

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@dbdeer

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!

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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

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@dbdeer

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!

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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

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@dbdeer

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!

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Amen!

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@buttons

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

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I was diagnosed with Dermatomyositis with MDA5 antigens and ILD in February 2021. My doctors wanted to put me on Cellcept, which my insurance denied, my Rheumatologist appealed it three times, with no luck. I am now on Azathioprine to treat my ILD, I would prefer Cellcept, does anyone know if there is anything I can do to get Cellcept? Currently I have rheumatologist and pulmonologist specialist doctors, I also went to Mayo Clinic in Rochester Minnesota in September of this year for second opinion on my treatment options. Mayo confirmed my diagnosis, and were in agreement with my doctors on my treatment plan. My current treatment plan is to continue on Azathioprine, have PFT every three months, and if ILD Progresses, they want me to start IV Infusion of Rituximab, which terrifies me. I would rather get Cellcept if possible.
Thank You,
Kathryn

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