Hi Amber. Best to tell the doc about the rash and don't taper anymore at the moment as you are feeling rough. Are you able to contact the Rheumatology Department for advice. Try not to worry, it's never as bad as we think. Autumm

Thanks Autumm, I'm probably being over sensitive- you know how we are!! I won't taper anymore just in case and will contact the Rheumy as soon as possible. Thanks and hope you are keeping well.

Hi Amber. I'm glad that you are hanging in there with the tapering but sorry to hear that things are rough. It's hard to know if we are starting to flare and easy to feel paranoid about the symptoms, I'm discovering. Do you see your doctor before you are due to go to 3 mg? I'm at 8 mg now and due to go to 7.5 tomorrow but have a rash now too, so thinking maybe I should stay at 8 mg for another week or two. Do you usually taper even if you have a rash? I did but maybe I shouldn't have..so hard to know what is best to do. Anyway, wishing you all the best as you are so close to being off this drug. I look forward to the time that I can be on such a low dose. Take care.

Hi Sammy W, thanks for your reply, I do see the doctor next week so will ask the question and hope the rash has gone by then! Usually I don't get a rash whilst tapering, just the horrible aches and pains but these go a little after a few weeks. Just keep ploughing on, but this MTX is worse as makes me feel sick for a couple of days but I understand this is "normal". Take care and best wishes.

Hi Sammy. It's great that you are getting on with your taper so well. I am sorry you have a rash and of course it might be nothing, check with your doctor before lowering again. You are almost there, it will be great when you finally get off it. I am three years from diagnosis taking no steriods now but still worry about every little rash or pimple, it's normal after all we have been through. Autumm

Amber, I hear ya about the methotrexate. I am sick for a day but it's hard to face every week. I think I would trade being on a low dose of prednisone if I could stop taking that! I'm not going to taper again until I check with my doctor. Thanks to you and Autumn for the encouragement. It's so helpful to talk with people who have gone through the same thing. I hope you both have a nice weekend.

Amberhere and Everyone, This article is great for DM skin issues:

Skin Disease in Dermatomyositis - What Patients And Their Families Often Want To Know by Richard D. Sontheimer M.D. http://escholarship.org/uc/item/44b9b9xs

Skin rash can mean to check liver.

Cellcept is taken daily and does not have the MTX hangover. Always talk to the doctor if your medication is annoying. Our meds should help us function well on a daily basis.

Best Wishes.

Hi Trpt. I read this when you first posted it. It is without doubt the most informative and best article I have ever read anywhere on Myositis. Thank you for posting again. Autumm

@trpt1
I must have missed this article when you posted it before. It's really a great and informative article. Glad you posted it again.

I am glad to have found the article on DM skin issues. I am always looking for new information on DM/PM since new findings on our disease are always coming out.

I hope the information is helpful. Naturally, always talk with the doctor to make sure the products of your interest will work for your skin issues. Best Wishes.