Hi Amber. I am so sorry to read your post. Don't get too down. Your Rheumatologist will hit this hard probably with the steriods, it won't be as much steriod as in the past and it won't take so long to taper, you will get on top of this, it's so rare to get there without flaring. Do ask your Rheumatologist what you need to do if you flare again so you can get on top of it before you see him. I agreed with my Rheumatologist that if I flare I go straight to taking 15 mgs of Prednisone and remain there until I see him. I always have the steriod with me even on holiday, just in case. You will get there Amber, it will be ok. Best wishes. Mary

So sorry to hear about your rash, amberhere. This might not be a comfort for you, but when it's cold my knuckles always get red and "angry", and my face starts to get bumps. Coconut oil usually helps me to keep things in check, but if not, I see my doctor. As Autumm said, you will get there. It's good that you're due to see your doctor next week. I'm sure s/he will recommend a good treatment plan for you. Best wishes for a quick recovery.

Hi Amberhere, I agree with Autumn to not get discouraged about going up on Prednisone. This disease has a lot of medication dosage fluctuations either up or down with the DMARDs.

I take 5mg Prednisone daily and I will flare if I attempt to go below the 5mg of Prednisone. I feel great on the daily maintenance dose of 5mg.

I noticed that you take MTX for DM. You might consider talking with the doctor about Cellcept. I have experienced great success with daily Cellcept. Many DM patients will mention that the Cellcept works the best for them. My rashes completely disappeared and there is no "blah" feelings like with MTX. My DM is probably considered as remission since I am on low doses of Prednisone & Cellcept with good disease management at this point. I know DM does move forward over time, but I do think the Cellcept has worked wonders for me. My liver has stayed in the status of fatty liver and I have not moved into type 2 diabetes. Do consider talking to the doctor if the Cellcept would be appropriate for you. Maybe the Cellcept might make a good difference for you.

Things will get better. Try to stay positive. Keep us posted.

I used to have the same classic signs of DM on my hands and lots of rash on my arms. It is gone after 2 years of treatment. It is definitely a sign that you need treatment. I take s, plaquinil, cellcept, and IVIG monthly soon to switch to Benlysta. It sounds like your going to need more prednisone. I know that this med is bad but without it, I don't think I would be functioning. Two steps forward and one back. That's what we do.

Hi again everyone - thanks for your really useful replies. It looks like I will have to up the Pred - my doctor gave me some different steroid cream but I don't think it will work on my hands. Oh dear, it is such a problem this DM. Don't know why after it has been in remission it would re-appear again. I agree, mccourtjs - I think it will be upping the Pred. Sometimes I feel like banging my head against a brick wall. Oh well, here we go again. At least we are all in the same boat if that's any consolation!! Best wishes to all. Amber

Amber. Have you seen your Rhumatologist about this. Autumm

Hi Autumm - no - my doctor has referred me back to my dermatologist. Best wishes Amber

Hi Amber. Might be an idea to ring your Rheumatologists Secretary so he can get you back onto the last dose of steriod that was keeping your DM at bay. Best to get it done quickly than to let it become a problem. Let us know how you are doing. Autumm

Has your doc talked to you about Vitamin D and Zinc? I was low in both. Talking supplements helped my rash along with an anti inflammatory diet of gluten free and low carbs. Be sure to check with doctor before you try anything since you are on meds and don't want some random supplement causing some other interaction issue.