Hi Amberhere. I live in London. Autumm

Yes I'm from the UK!!!!

Hi Ricky and welcome. How are you doing. Autumm

I have DM . Pretty bad at the moment. Pain is so so bad. Any ideas for the pain?

Hi Autumn.

Hi there Ricky. What Meds are you on and where is the pain. How long since you started treatment. Autumm

Hi Ricky23, good to hear from you and welcome to these lovely people - Autumn I wasn't sure if you were UK or not at first.. Its good to know there is a couple of people here but thought there may have been more. I suppose as the condition is rare and not many people want to join a support group. Good to hear from you both!!

Hi Amber. Live in Sputh East London. Greenwich. If you are reading this Ricky, we are here and we do understand. It takes a while for the Meds to kick in and the pain to go. You will get there. Best wishes. Autumm

Hi Autumn. Got diagnosed with DM 2 weeks ago... although ive had it 4 months. I have the rash everywhere now inc scalp!! I wake up every morning with a swollen face!!
I am not on any meds. I was too frightened to take predisone. I have a tablet phobia unfortunately. My muscles are killing me so psinful in my dhoulders arms wrists... also thighs and ankles. I am taking a natural tablet Zymactive but after 2 days haven't seen any change. I had DM before but I was diagnosed eith Ovarian cancer once I had the op it went. So now there is a question mark if the cancer is poss back.
Its an awful illness this DM for me a thousand times worse than the cancer. I have lost my life and feel very suicidal frankly.
How are you doing? What meds are you on and how is life for you? X

Hi Ricky. So sorry to read your post. You have to hit this disease hard and fast and so you must take the steriods. It's not forever, it's just until the inflammation goes down. Your life is worth far more than any phobia. The Meds will deal with it and take the pain away and you can go on to have a good and pain free life. I no longer need steriods. I finished them at Christmas. I continue to take the Azathioprine to suppress my lung inflammation as I have the JO-1 antibody. I wish you had the time to get treatment for your phobia, bottom line is you don't so please, please take the Meds. Let us know what you decide and how you are doing. Best wishes. Autumm

Hi Ricky23 - please don't despair - I felt exactly like you and cried nearly all day every day for quite a while and got very depressed BUT there is hope and I have now got through 1 year of DM. I totally agree with Autumn - you do need the meds to get get through it and fast.- I didn't want to take the Prednisone as I am on high blood pressure tablets and underactive thyroid tablets. The bottom line was if I didn't take them I would feel worse so I "took the plunge" so to speak and felt a lot better after 2 weeks. I wasn't on a high dose but I can honestly say that when you feel a bit better things get better. I also take a sparring DMARD - Imuran - but that didn't agree with me so they put me on Plaquenil which cleared up the rash well but didn't dampen down the muscle pain and swelling. I am now on MTX (6th week) and things seem to be getting a lot better. I have now to taper my steroid but will take my time. You MUST take the meds - I know its difficult but please do it and let us know how you are doing.

Hi Autumn. Can I ask what side effects youad with Presidone ? Great to hear from you! X

Hi there Ricky. I can honestly say apart from finding it hard to sleep in the early days I felt extremely well on steriods and they gave me energy and strength and made me feel good along with getting rid of all that inflammation and giving me my life back. Yes, I put on a few pounds but not now, yes I found it a bit hard at times to taper down but I did it. I am no stronger than the next person but I did it. I took them for fourteen months, longer than my Rheumatologist would have liked but I came down very slowly. I am taking Azathioprine which has been a really good drug for me. I am well and stable and was extremely ill in August 2012. If you police the Internet you will get all the worse possible scenarios for the Meds we need, the DMARDs are borrowed from the oncologists but we take them in tiny doses compared to what cancer patients are given and all the stuff written in based on that. Those of us who do really well take the Meds. Please give it a try, we will support you, you can do this. Autumm

Will Presidone help with the muscle pain and itching? The last few days I have woken to my face like a football and I've not even taken any meds yet!!
I am ABSOLUTELY TERRIFIED of taking these tablets...

Hi Ricky23 - Prednisone helped with the muscle pain and slightly with the itching - I also take Plaquenil which really helps with the rash as well. Most meds, even paracetamol can have side effects but these are very small. Plus you are kept on eye on with blood tests.