Dermatomyositis

Hi,

When I was diagnosed in 2012 I didn't know what to expect was going to happen to me as I felt and looked OK apart from the rash I had. As time has gone on I now suffer with very sensitive skin, and my joints and muscles extremely uncomfortable. It feels like I have done too much exercise and so if I sit down for even ten minutes I feel myself stiffening up and then loosen off after a couple of minutes walking, but I can't keep standing up and sitting down and so on as getting back up is getting very painful. I am now just tired all of the time and starting to struggle at work. I assumed it was a flare up but my bloods were fine so after a meeting with my consultant I have now been told I also have fibromyalgia. So difficult when I also have a family to look after I just don't know what will be next.

Hi Lilsky, How long after the rash did the muscles get weak etc??

I have had the rash for 18 months and still no muscle issues and the doctor said I am now unlikey to get muscle problems now ... He sais if there is no muscle involvement within 2 years its unlikely to develop...

Hi,

Sorry I didn't reply sooner. I'd say it was about 18 months after my diagnosis. I can't do things that are repetitive, simple things like hanging washing out, even after holding a phone to my ear, I drop it after so long. I have now been told I have to have special insoles in my shoes as my knees are over compensating caused by my muscles in my calf's. I have been advised to exercise but not to over do it as I have terrible pains now from waist down and in my arms. I'm going to have my cortisol levels checked too, this is the hormone that gives you the get up and go mode. Its just over 2 years of been diagnosed and I know I'm getting worse but I don't say anything as I don't want to worry my family.

Hi again, interesting that my specialist said if there is no muscle involvement after 2 years it probably wont crop up ever.. when it wasnt until 18months after diagnosis for you. I havent had anything other that red bumpy skin on hands, shoulders and face and hair loss so far, you never know when thingscan start up...

 

HI again, I was just wondering how you now? Is your muscle pain any better or worse and how are you coping with family commitments? It must be very draining trying to not worry your family too much, I think you deserve a medal!  Paula

Hi, I did not know that Iron makes dermatomyositis worse.  I was prescribed it as my hair was falling out and was told that this would

help.  I was told when taking metrotrecate a person should take folic

acid, which I believe is iron so that it lessons the hair falling out.  Maybe  folic acid and iron are two different things.  I should have

said folic acid as that is what is on the prescription.  Does anyone

know anything about this and are they two different things?

 

Thank you for the advise.  Now that I know I will be sure never to take iron.  I thought I was doing well as my rash is not like it used to be and I don't itch very much any more.  I still have a CK level that is a bit high and my muscle weekness is still there.  I am off the IVIG which is so nice.  My hair still comes out so easily and I seem to loose a fair amount every day but at least it still grows and isn't as bad as it was .

Its nice to have someone to talk with as I dont know very much about this and any advise is very much appreciated.

 

Good advice!  Iron is not a supplement to be taken lightly due to potential toxiicity and without consulting your doc!  My sister has DM and is losing some hair.  We thought is was due to the Prednisone or Methotrexate.   She was told early on to take B12.  My advice to her was to take a B Complex tablet.  The B vitamins in combination support the nervous system and I could never figure out why the docs will single out just one B!

If you take a B complex do so in the morning with food.  It can keep you awake at night.  Also the niacin can cause skin flushing which may look like a rash - DMers don't need another rash!  That said -  niacin, when not used in excess, dilates the blood vessles and improves your brain function.  And, of course, talk with your doc before taking any supplement!  Blessed be!

Was diagnosed with dermatomyositis in March and I'm on same regimen of meds, except now reduced to 50 mg of prednisone per day and 8 pills of methotrexate once a week (and never the plauenil).  My finger irritation comes and goes.  Still have red rash across the nuckles of one hand and very sensitive cuticles, which also comes and goes.  Tips of fingers tend to get dry and cracked. I don't have the painful fingers except when I develop sores.  Was told by my rheumatologist to stop using a cortisone cream because it thins the skin, but recently was seen by a dermatologist at a teaching university, and she prescribed clobetasol propionate ointment, .05%, twice a day application.  It is very greasy so I tend to only apply at night.  I use a keyboard every day for work so just use a good hand creme with no fragrance, etc., for every-day use to keep hands from getting too dry.  Good luck!

My sister has DM.  I highly recommend Jerry Williams' Myositis Support Group which has a site for patients and another for caregivers.  Jerry has polymyositis and, though he's always suffering, he's an amazing, tireless  advocate for all those with myositis and muscular dystrophy!  I'm a registered nurse and am being trained to be one of his site administrators.

I spoke to my sis yesterday and she mentioned her hands: The inflamed cuticles and the callous-like areas on her fingers.  She wears household gloves any time she's using cleansers or even simply working with water.  She lives near Colorado USA, which is cold and dry in the winter, and has always had dry skin: the DM has made it so much worse.

Though wearing protective gloves is vital if you notice that your hands are getting worse after wearing them you may have a latex allergy!  Check the labels. 

Sis's doc is weaning her off of prednisone and she's now on Methatrexate which has helped he so much!  And Blessed Be to you all!

Thanks good advice!  Not everyone knows about cortisone's sde effects.  It's so tempting to use because it does bring relief.  Good luck with your drug regimen!  My sister with DM is doing better with less prednisone and the addition of methotrexate!

Hello greengirl

I am 48, have 2 girls (15 and 20) and live in France. It all started for me on august 18th. It went very quick. One week later I was in hospital. I am still on prednisole (went from 30 to 10mg in 3 months),plaquenil 2x200, cetirizine (for the skin rashes), pilocarpine for the dry mouth, tramadol for the pain. Was put on colchicine this week but I couldn't stand it and stopped after the second day. I take Alprazolam for anxiety when i wake up at 2 am and can't sleep. I have arthritis in hands,feet, elbows,knees... am waiting for results on Sjogren's Syndrome.. Cetirizine really works for my hands and putting them in warm water. My husband bought me an ebook, so i don't have to carry books or turn pages. A lot of rest. Hands on the side next to the body when I am sleeping. I use Avene cold cream twice a day for hands and feet. I still have pain sometimes in my hands and feet especially when the weather is rotten.i am often very tired and sleep up to 12-14h a day but everyone is fantastic and really helpful. My family doctor has also been of great help. My hospital doctors treat my symptoms but act as if I don't exist (no explanation " you don't need to know", no advice whatsoever). I go on all the international sites to find advice and talk about it with my GP.If you have any other ideas for the pain, do not hesitate. I got a lot of advice for Sjogren's syndrome and it helped a lot.

Glad to hear your sister is doing better.  Just an update...had an appt with rheumatologist last week and lowered my prednisone to 45 mg every day, along with the methotrexate, and added plaquenil 200 daily. Rash on body is almost gone but still have the hand rash and developing ulcers on knuckles which are very painful, I'm assuming since they tend to open when I bend my fingers.  Muscle strength has increased in arms.  Still have leg/feet cramps.  Am feeling much stronger so am going to attempt light aerobic exercise, like walking, and see if I can tolerate it.  I really miss my early-morning walks!  Keep me posted on your sister...and Happy Holidays!