Dermatomyositis is Deadly Serious

 
David BesnetteI received an email recently from one of our site visitors, commenting on our page about Dermatomyositis and assisted living.  She commented that it’s a helpful page, and she genuinely wanted to express her condolences and sympathy for what happened to my mother-in-law, who succumbed to this horrible condition at age 81, after successfully beating Cancer.

This kind person who sent the comment in watched the video that I embedded on the page – a video of a nursing giving a general overview of Dermatomyositis.   Her problem with the video is that she downplays the seriousness of this disease, basically saying it is a skin issue, causing rashes, pink cheeks, and other fairly non-serious issues.

She does not, however, describe the more serious end of Dermatomyositis.  Although she does say that people get progressively weak, she stops short of saying that anything worse can happen as a result.  She implies that many or most people can stop the progression, and even reverse the effects of DM.

Her email:

“I’m so sorry for your loss. My heart goes out to you and your family. I found your story by searching for dermatomyositis on Google+. I have DM and it’s so rare it’s hard to find articles, or people for that matter. I noticed the video you have on here, I have so many issues with this video. It makes the disease sound like ‘a flu’ and she also says something about ‘around 2 years’ and then it’s gone. It makes me wonder if she’s ever really dealt with the disease.  Let me say I am in no way berating you for linking to the video, if you search for DM this is the first vid that pops up and most others are too clinical. DM is such  a misunderstood disease not only because it just sounds like a skin condition, but because there’s not much about it online. That brings me back to that video…I wish there were more info about it out there. Thank you for writing your article and sharing your story. Awareness is key in finding a cure.  Hugs to you and your family. I’m really so sorry for your loss.” Michelle 

Make no mistake, Dermatomyositis took my mother-in-law’s life in a very grim, uncomfortable way.

Dermatomyositis is serious and took mom's life

Sure, mom, back in July 2011, when she was just coming off of beating Cancer was having some other unusual, slight symptoms, such as general weakness and fatigue, we thought it was really just due to the massive chemo she had just gone through.   She seemed like she was on the mend, and even joined us on a great summer vacation to California.

By October, she was having trouble lifting her arms to open cabinets, and to adjust the blinds.  She was finally diagnosed with the beginning stages of DM.

Ever resolute, she soldiered on in life, determined to live many more years in relatively good health, and with her new lease on a cancer-free life.

Not to be, though.  Within another few months, she couldn’t even walk.  She had, as we found out, resorted to crawling around the house, always stoic, not wanting to ask for help.   She was on a heavy regimen of the usual-suspects of awful, toxic meds needed to treat this condition – all which seemed to not help at all or just make things worse.  Additionally, her living in a more small-town, rural area provided her with what we thought was a “C-Team” of choices for doctors.  Seems like one doctor would recommend one course of action, and another would completely contradict that.   Nobody seemed sure about the best course of action to treat it.

By spring, mom had been placed in a Skilled Nursing facility.  She was on a feeding tube, unable to move at all, really, and confined to a bed.    We wanted to research more homelike assisted living facilities in her area, but unfortunately, none would have her as long as she was on a feeding tube.   We were told that she would be a candidate as long as she could eat – so that was the goal during that time, to get mom off of the feeding tube, so we could get her out of the nursing environment that was not of her choosing, into a facility that was more comfortable and possibly housed friends of hers that she knew.

It was never to be.  Mom passed away in May of that year, about 7 months after initial diagnosis of DM.   Weakened, unable to do anything for herself, attached to tubes, we think she just gave up.   Her existence was one of extreme discomfort and misery.

So, please don’t ever let someone say that DM isn’t, or can’t be a serious, life-threatening issue. Of course, there are those who do well, and overcome it for the most part, just like anything else.  But, it can, and does kill (to not sugar coat it).

I hope that clears it up, and adds to the “overview’ video I included.   DM has a wide range of symptoms and seriousness, and it not simply confined to skin issues and general flu-like symptoms.

Dermatomyositis can be deadly serious.

For More:

http://www.mayoclinic.com/health/dermatomyositis/DS00335

http://www.assisted-living-directory.com/content/dermatomyositis-assisted-living.cfm

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13 thoughts on “Dermatomyositis is Deadly Serious

  1. Kimberly

    I was diagnosed with dermatomyositis, polymyositis a couple years ago. It started w a rash that didn’t itch on my neck an face it took a few months before one night I started itching all over and that morning I was so weak I couldn’t even get out of my bed. My arms legs everything was so weak an extremely heavy feeling. The first doctor thought it was lupus but after a skin and muscle biopsy UCSF diagnosed me. I was on prednisone before diagnoses to help w mobility because I couldn’t even walk I would fall a lot an crawl or slither on the floor til I could get to a place where I could grip something to get up this could take up to a hour of trying over and over. Getting off a toilet was literally impossible so raised toilet seats I had put in. I couldnt swallow i would choke on the smallest things i was diagnosed w now dysphagia I got progressively worse prednisone gave me osteo necrosis on top of it. Onto injecting methotrexate w lower dose of prednisone. Helped a bit but not much. Finally I was put on rituxan infusions this helped me a lot I am now about to go on my third round of infusions. I’m a 49 year old female. Was diagnosed at 47. I know how hard this connective tissue disease is an what it does to your body an the heavy toll medicines take on you also. Also how hard it is to find people in health care that have ever dealt with it because it is so rare. So for anyone else out there who has this I wish the best an feel free to email me.

  2. Kelli

    I was diagnosed in June 2014. I have been on 80mg of prednisone and 3 tablets of methotrexate for 3 months. I am started to taper off the prednisone to 60mg. and 50 mg. alternating days. I have increased the methotrexate to 5 tablets a week. This is a terrible disease. I never know what the day will hold. Some days I have more strength and others I lay in bed wondering if I can make it to the bathroom. The worst part is knowing that 6 months ago I was fine. In my head I still am but my body has decided to take a sabbatical of some sort. I hope that I can recover or at least go into remission. I am so sorry to read this article about your mom. I hope that she is in a happier place.

  3. David Post author

    Kelli, I so appreciate your comment and sympathy for ‘mom’ – it was a horrible end for her, and I think she has to be in a happier place now. I hope that you go into remission..permanently if possible. I wouldn’t wish this stuff on anyone.
    Thank you again.

  4. Crystal

    I am so sorry for your loss and pray you may find some peace in the midst of the angst. I too was recently diagnosed with Dermatomyositis/Polymyositis. I just turned 32 years old last month. I was officially diagnosed 2 months ago but began having symptoms 6 months ago. I’m not sure if it was because of my age or what but for almost 4 months I was basically just ignored. Was told that I was “too young to be experiencing the symptoms” that I was describing. I have 3 children, the youngest being 2 years old. None of them understand why Mommy falls for no reason and unfortunately it is happening more and more now. I keep looking for the Silver Lining or The Light at The End but I just can’t see either. My Fiance and my family are so amazing and supportive but I don’t think that they truly understand what I think and how I feel with this. Last week they said Dysphagia had started and from everything I have read and heard, that is usually the “beginning of the end.” I hope that isn’t right. I apologize for how this sounds but it’s kinda nice to know there are others out there fighting the “good fight” right alongside me. It would be great to stay in contact and try to emotionally support one another. I pray for you all!

  5. Maudrisha Smith

    On April 9, 2012 our 19 year old daughter was diagnosed with dermatomyositis and went through a lot more than I can sit here and type. She passed away at the age of 22 on August 3, 2014. We shared the first half of her story on giveforward.com. This disease came out of nowhere for my baby.

  6. David Post author

    Maudrisha, I am so sorry for you, and your family. It is simply beyond imagination to me to have a daughter, so young, fall victim to this nasty disease. I went to Giveforward to read more, but since it was the homepage, I wasn’t sure what story was yours. Perhaps you could share the direct link to your daughter’s story. I’ll keep digging to see if I can find it. Thank you again – your comment was no doubt difficult to write. I wish you sincerely all the best during your grieving process.

  7. Barbara

    I was diagnosed in Mar. 2015 and went from stooped walking to wheel chair in less than 30 days.
    I am doing all kinds of alt. protocols in addition to big pharma drugs and am improving. High density nutrition is v. helpful…all organic fruits/vegs. plus grass fed meats, free range chicken and wild caught fish.,
    Detoxing, colonics, physical & occupational therapy, respiratory and swim therapy…………all making positive change.
    Herbs and super foods all helping. Don’t settle for just what Drs. tell you…too rare for them to know…..each case is unique to patient. You must be your own advocate and researcher.

  8. maria

    i am 32 yrs old i was diagnosed with type 1 diabetes at age 11, i have 4 kids and a year ago this month was diagnosed with DM , i am on prednisone and methotraxate and IV infusions a month. i was good got about 8 month after my diagnose but got sick again during the summer.its a hard disease i hope there is one day a cure.

  9. Sher

    Having dermatomyositis with ILD (oxygen 24-7) for over 12 years! I’m 54 now and it’s been a hard road but God will never give you more than you can handle! On cellcept for the dermatomyositis. I notice I’m getting weaker by the way I walk, when I’m really tired I seem to not pickup my right leg. Had uterine cancer last year. This disease is nothing to fool around with, yes you will probably die from it. Mine has slowed progressing but has never stopped altogether. My lungs are all scarred up. I have gone this far by the Grace of GOD! Keep your head up smile, laugh, keep good family and friends around you! Pray, pray pray!!! I am praying for all of you- Sher

  10. Mary

    My dad was put on tube feeding and predisnione IV when he went to a hospital 3 months after he had the disease. the doctor said he would be alright in 2 weeks but he died of silent attack while in treatment. I still do not know the reason that caused his death and I am so sad. When his disease started he went toa nearby hospital that gave oral predisnone and ever since he started predisnone he could not get
    out of bed on his own. I wonder why he died so early. He was just 68 years.

  11. David Post author

    Heartbreaking. Our story is the same, we did not expect it to end in death. I wish I had an answer for you, but this disease just seems to take over. For mom, she simply couldn’t swallow. Before mom got sick I had never heard of such an awful condition. Again, I wish I had something more comforting or useful to say. This illness leaves more questions than it provides answers for.

  12. Cynthia Writesel ( I'm the patient in the video for Acthar )

    I been living with Dermatomyositis since 2005. I’m 63 now and it’s been a roller coaster ride and just doesn’t stop! My heart goes out to your family with your loss of your mother. I was on so many different medications but nothing was working. My body became so toxic to prednisone . In 2013 I went to a new doctor and he took me off all medications because I was so broke out on skin to muscle weakness he wanted to start new. Best thing that ever happened to me! Started taking Acthar gel injections twice a week and with in two months my body from inside out was improving! Amazing results. I know everybody is different but I learned to step out of my fears and know that all medications have side effects. I went for it and choose Acthar. I’m so happy it gave me my life back. My skin improved and my muscles have gain strength and movement. Still have weakness but compared to where I was at it was a lifesaver for me. H.P. Acthar Gel. Ask your doctor about this drug. It worked for me.

  13. David Post author

    Cynthia, thank you so much for your comment and kind words. Roller Coaster ride is a very accurate way to describe it. Thank you too for your tip on what has been working for you – that is so helpful to our readers. Is the video on our site..the one you are in? If not, can you send me a link to it?

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