21and new to having dermato, looking for guidance on how the treatment will be!

[zoeavacado]

I recently found I have dermatomyositis. My ck is high(450) and adolase is high as well.. I am only 21 so this is shaking my world a bit. I thought I just had rosacea for a few years, but the gottrons were what made me realize. No terrible muscle weakness just yet, but I am hoping to start treatment very soon.

My worst symptom is the red atrophic skin on my cheeks. I have lots of blood vessels and I am quite worried about how steroidal treatment will affect my already thin skin.

Sigh.

If any one has any advice on this I would be so grateful How long was your initial treatment with steroids?

[chickenB]

Hi I was diagnosed with dermatomyositis 6 years ago . I was quite poorly with it my muscle weekness was so bad that I couldn't even cut up my own food or reach to was my own hair but, now I work I run my own holistic therapy business. Initially I was on steroids and they made a huge difference, I've been off them now for several years. You my well be put on a immune suppressant but don't get disheartened I am proof that you can come through and lead a normal life. Hope this helps xx there are groups on Facebook that could join. I ve met two lovely ladies with the same illness that live close and we meet up now and then. It's fantastic to talk to someone who understands what you are going through and how you are feeling. Much love jane x

[Maggie7171 in reply to chickenB]

Hi Chicken B,

So glad you are doing well.

I have Polymyositis and I am now weaning down from predisone. I am at 7.5mg from the original dosage of 60mg. I am on 150 of Azathioprine for life I think.

My muscles are improving, but I the fatigue is not.

It gets me down, but hoping once off of predisone the fatigue will be less.

Thank you for sharing .

[zoeavacado in reply to chickenB]

Aw glad you're doing better! Thats awesome that you were able to get off steroids. Thanks so much for the reply, it helps alot!

[dermato]

3 year ago I became bed ridden muscular jelly pathetic wreck as a consequence of dermatomyositis....No energy and no strength. With the help of chemotherapy, predisalone and mycophenoatle and lots of alternative therapies I now live a more or less normal life on my small holding... hence lots of physical work.

huallaloulya!

My tip is that yo aspire to become age of your own healing... pay special attention to what you are feeding your gut, your mineral and vitamin deficiencies, and your breathing..... try taking copious amounts of Vitamins c. We are all unique... so explore what works for you. Hospitals will have their take, nutritionalists theirs and alterative health practitioners theres... your responsibility is to see what works for you.....There is hope.... good luck, Garry

[zoeavacado in reply to dermato]

Im im so sorry to hear youve had it so rough. Ive luckily not had any disabling muscle weakness, but ive found i absolutely can not do sit ups or my stomach with feel like its literally ripping apart. I appreciate the advice so much

[54Crafter]

Hi I’ve only just started my steroid tablets as it’s taken 8 months to diagnose me. I also have blood vessels on my cheeks been there a while so sorry but it’s to early for me to tell how tablets will affect me this way this. I have a lot of muscle pain but easing off a bit with tablets & makes me in my self so much better. The trouble is now I do t want to come off them lol. Sorry I’m not much help for you. One thing make up helps cover a few

[zoeavacado]

Aw well good luck with your treatment! Ive just been in shock about the whole thing hut it helps to hear other people’s experiences

[zoeavacado]

I can cover the vessels pretty easily with makeup but the hard thing is that i am just sooo sun sensitive. Hopefully whatever treatment i do will make me less sensitive to the sun

[Rabbitygal in reply to zoeavacado]

I am sorry to have to tell you this but most of the medication makes u MORE sensitive to sun I am on Mycophenolate and whereas I used to be able to spend all day pottering in the sunshine, I now have to be very careful.

On a happier note, I was diagnosed nearly tow years ago and admitted to hospital when my diaphragm and swallowing ability were just about to give up! I spent about 10 days in hospital, came out using a wheelchair and was ready to sell the car, get a bungalow and prepare myself to change my life completely - now I am happy to say the chair, mobility scooter and frame are all gone, I can walk 'normally' I drive, I craft again, I can climb the stairs, In fact I can do most of the things I did before. Yes I have my 'bad' days, I have to be VERY careful about anyone who has anything wrong with them as I seem to catch everything (immunosuppressants!) But do you know I feel great about things. I had a FABULOUS Rheumatologist who did everything humanely possible to help me. Please ask questions, please push for tests n treatments that you think may just help. YOU are responsible for your own health and Dermatomysotis need not be the end of everything xx