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Dermatomyositis

Posted , 6 users are following.

louella57030
louella57030

I was diagnosed with Dermatomyositis in October 2014.  Do anyone know how long will the sore fingers and rashes last?

 

1 like, 9 replies

9 Replies

  • ajinus
    ajinus louella57030

    Posted

    Hi, Louella:  I've had mine a year.  The soreness comes and goes, along with the rashes, especially when they are trying to lower my prednisone.  Right now am in a flareup.  Down from 60 mg daily to 40/45 every other day.  Rash on scalp has exacerbated.  Hope you have better luck!
    • louella57030
      louella57030 ajinus

      Posted

      Hi Ajinus, thank you for replying.  I was taking 20 mg of prednisone a day but my doctor told me to )gradually reduce the mg each week.  So each week I reduced the prednisone down to 5 mg a day but had to go back up to 7 mg a day in addition to taking 2 pills of plaquenil (200 mg) a day.  My face is red and puffy and the back of my neck is very itchy.

      I thought that this dermatomyositis would be gone within six months but from what I have been readng, and what you have said, this disease is a lifetime disease.  I pray not because I cannot endure with this much longer.

      Do you know of a steroid that one can use instead of the prednisone to treat dermatomyositis?

       

    • ajinus
      ajinus louella57030

      Posted

      I was never offered anything but Prednisone. Am also taking methotrexate weekly (to help lower the steroid) and plaquenil once a day.  My rheumatologist wanted me to be completely weaned off the steroid in six months, but it's not happening.  

      I've developed painful ulcers on some of my knuckles that take forever to heal, and am getting some of my original arm weakness back with this flareup.  So now she is sending me to a new neuromuscular expert at our local teaching hospital who is supposed to be really good and a transfer from Mayo Clinic.  Am looking forward to getting some new info.  

      I start feeling sorry for myself until I read some of these other posts of people who have sores on their feet, etc.  My doctor said she has only 10 DM patients (I'm from a community of about 500,000 people), and some of them are in wheelchairs because their muscle weakness is so severe or have breathing/feeding tubes because they can't swallow.  Sometimes I feel very fortunate to only have the nagging symptoms I have.  I can work and do minimal exercise (mostly walking) and still enjoy my life.  It's just a big dissappointment compared to the life I used to have!  I'm sure you feel the same way.  

      Keep plugging away.  I'm hopeful all fo these symptoms will be gone one day!

    • sanjana19
      sanjana19 ajinus

      Posted

      Hi, I am (Sanjana T.Ram) 18years now suffering from Dermatomyositis from the age of 9 years , I was a normal child going to school until 6 standard, During that course found me having frequent falls during r physical classes. Consulted doctors to know exactly what the problem was and based on several tests found suffering from the above problem.

      This problem started progressing over the years was on Steroids and was frequently admitted to the hospital for fever and cold. The worst part was during fever my allergy of Red ness and itching would grow all over body and strong doses of steroid over a week or 10 days would reduce.

      i live in Bengaluru and Presently on wheel chair for all normal activities. i sit for long hours since i am unable to walk and counter pain in lower back (lower back) and weakness with hands and legs, all my daily activities are taken care by my mother and dad.

      Since steriods never worked i am on HOMEO medicines for the last 5 years and the only change is my redness and itching has not shown up. Kinldy help ime n suggesting if any treatment can help me.

  • lilsky
    lilsky louella57030

    Posted

    Hi,

    I was diagnosed 2yrs 5 months ago. I just never know what each day is going to be like so I just make the most of my good days. I have a busy live with 3 children, a dog to walk, a household to run and a very stressful job as a carer which I love. I don't have time to feel I'll but some days I don't have no choice as I feel so tired and weak. I do try and listen to my body because if I don't I suffer the next couple of days. I was put on steroids for a year, hydroxychloroquine (200)mg and methotrexate. It worked for a short while but hated the steroids due to the side effects i.e moon face, weight gain, etc. My rash totally went after about 8 months but then I had a bad flare up and it all came back. Since then its all been trial and error as my bloods are not picking anything up. I'm now yet again having another flare up, suffer kenetic tremors, slight muscle weakness and feel rubbish. I have now had my methotrexate increased and the hydroxychloroquine doubled. Its not working at the moment and I have cried many tears due to tiredness and pain but I have a very positive way of thinking because I have to for my children. I just try and live a normal life which is difficult because I am constantly reminded of this disease due to the unsightly sores on my hands, rashes all over and the constant pain, but I know there is always someone worse than me. Good luck for the future and stay strong.

  • melissa67180
    melissa67180 louella57030

    Posted

    I work for a great lady who has had conditions for 14 years we started using lemon juice for the rash which looks 60% better on inflammation an redness
  • sanjana19
    sanjana19 louella57030

    Posted

    Hi, I am (Sanjana T.Ram) 18years now suffering from Dermatomyositis from the age of 9 years , I was a normal child going to school until 6 standard, During that course found me having frequent falls during r physical classes. Consulted doctors to know exactly what the problem was and based on several tests found suffering from the above problem.

    This problem started progressing over the years was on Steroids and was frequently admitted to the hospital for fever and cold. The worst part was during fever my allergy of Red ness and itching would grow all over body and strong doses of steroid over a week or 10 days would reduce.

    i live in Bengaluru and Presently on wheel chair for all normal activities. i sit for long hours since i am unable to walk and counter pain in lower back (lower back) and weakness with hands and legs, all my daily activities are taken care by my mother and dad.

    Since steriods never worked i am on HOMEO medicines for the last 5 years and the only change is my redness and itching has not shown up. Kinldy help ime n suggesting if any treatment can help me.

    • melissa67180
      melissa67180 sanjana19

      Posted

      we use alot of lemon ginger honey mint and apple cider viniger w/mother for redness an swelling of skin.   how did u clear your skin besides steroids?
  • melissa67180
    melissa67180 louella57030

    Posted

    Try 2 lemons , a squeeze of honey , 3 capfulls of apple cider vinigare with mother , a couple skakes of ground ginger, some mint leaves fresh aprox 6, an some fresh aloe vera cutting blend and strain or leave in like a pair of panty hose an rub directly on rash every other day we use a heavy lotion we have seen results! She has been off cream for like 4 to 5 months now!
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