Hi Amber. It is great to read you are down to 1mg. How amazing is that. I am sorry about your hands but I hope this too will go in time. Try putting a total sun block on them even in the winter and when you are just in the house. It might help and worth a try as everything I read about DM tells to avoid sunlight even when the sun is not out and flourescent lighting which is everywhere we go. I also read that these new energy saving light bulbs are to not be used by people with DM. It's all worth a try Amber. You are doing just great this year and even better next year. Best wishes. Autumm

Hi Amberhere, Congratulations on the 1mg of Prednisone. I know you have worked hard toward the goal of removing the steroid and it is great to hear of your success!

Plaquenil is a rash reducer but not a rash remover. The steroid creams are known to help with hand rash. I would not know about getting off the Plaquenil. Most people who completely get off their steroids usually stay on the other DMARD. I would love to get off of Cellcept, but that just is not going to happen.

Keep working hard at improved health. Best Wishes.

Hi Amber. Great news that you are down to 1mg of prednisone! I hope your hand rash settles. Wishing you all the best and good to hear your update. Merry Christmas!

any advise on using prednisone and methotrexate in combination? Been using prednisone 60 mg down to 15 mg and now the DM has all flared up again with fatigue and rashes all over. any help out there???

Hi, Steve, and welcome to this group of nice people. I hope you will be encouraged here. I'm not able to answer your question, because the only med I've taken for PM is prednisone. But others on here have been on both methotrexate and prednisone, so hopefully they can give you insight. Best wishes to you.

I Steve. I am sorry you are flaring on your Meds. You don't mention how long you have been taking your Meds. Drugs like MTX can take up to three months or longer to kick in and help you get off the steriod. Other drugs like Imuran take even longer. The prednisone needs a long slow taper. I have PM. It took 20 months to taper off the steriods and I did it very successfully without flaring. Do you know what auto antibodies you have as these will help your doctor to manage your DM and find the right Meds. Sometimes we have to try more than one med to find the right one. I am assuming you have now gone back up to your last dose of steriod when you were not flaring, try again when it all settles down. Best wishes. Autumm

Hi Steve, Welcome to the group. Autumn mentioned the medications well. A flare while tapering means you have hit the level of active disease. You will need to increase your medication dosages as advised by your rheumatologist until your CPK and other scores get under control. It took me three months at 60mg Prednisone and 20mg MTX at the beginning of my DM, before my CPK and other scores lowered significantly to allow for tapering. Tapering too quickly without the disease under control will cause a flare.

There are different medication dosage levels for each person depending on disease activity. Tapering is not a race. Doctors will use different tapering schedules. My taper was very slow and down by a half milligram every fourteen days. If I did not totally feel well and stable, then I would stay on a particular level of Prednisone for a while until I felt stable.

It is not uncommon to flare while tapering, so try and be patient. I learned a lot about patience from DM, and yes, patience is not always easy. Do not be afraid to ask friends & family for help or assistance during this difficult beginning period too. I had to ask for help shopping for groceries (the bags were too heavy!), I needed help getting dressed, driving, etc.. at the beginning of my DM.
Things will get better, but they do take time and patience.

Do visit The Myositis Association website www.myositis.org for more info on DM/PM.

We are here for you. Welcome to the group. Do read the posts on this site too. Best Wishes.

I took both Prednisone and MTX. I had to get up to 25 mg of Methotrexate before I could successfully taper the Prednisone and we tapered at a snails pace. My doctor was shocked I was successful as many people are not. When I say slow, I'm talking a few years.

What is your dose of Methotrexate? How long was your taper down to 15 mg of Prednisone and what was the schedule? I found an every other day schedule was best for me but understand that is not a regular schedule. I stayed at some levels for 3 months or more. I was on 3 mg for over 6 months. I went down 1/2 mg each taper once I got down to a lower dose.

I appreciate all your comments and suggestions. I hope we all can find that combo and patience to get thru this. It looks like it's a long haul game and all your support means a lot. thank you

Hi SteveSpringer - Perhaps your MTX needs to be increased? Or your steroid may have to be increased again just while you are flaring then start to taper again when you feel better.The steroid is a love/hate affair - Love it to feel better and hate it when trying to taper as it can give withdrawal symptoms similar to the flare itself. I have experienced this several times as I am now down to 1mg but it has been a very long time and tapering down at 1/2 mg at a time roughly every 4 to 8 weeks. I would suggest having another word with your Doctor or Rheumy - as most people have said, it is a very slow process to feel better and to taper off the steroid.

Thank you, Amber, for sharing information which will be helpful to me. My rheumatologist has found a good combo of meds, which have improved my condition, but I was unaware that itching, redness of hands, etc. were connected to DM. I thought maybe it was reaction to other medications from other doctors. How do I get all the medical caretakers on the same page?
One discovery which has made a major change for me is the past year of acupuncture treatments which have restored muscle strength and balance.
May your posts continue to help others. Grandragon

Thank you all for your comments and suggestions. I'm going to give the 20mg prednisone and 15mg of MTX several weeks to see if it kicks in. Given all your comments I think it's a timing issue and I'll give this DM treatments the time. since I've reduced from 60mg to 15mg of predisone, rash, pain and sores have appeared all over again. I don't know if increasing predisone by 5mg will help but maybe with the addition of 15mg of mtx we'll see. keep you all posted and thanks for the support

see previous comments from me

Hi Steve. I think you have the right approach to this by going up on the Prednisone and sticking at the 20mgs until the MTX kicks in. This should take 6/8 weeks, don't forget to take your folic acid and walk if you can find the energy right now. We are here. Best wishes. Autumm

I did a lot of research on DM and got my wife onto treatment of a combo of MTX and IVIG. Amazing results for the better after the IVIG, Skin rash, itching all gone. Energy back to almost normal. The IVIG did the trick but it took several doctors to convince that this was the way to go. Had to fire three doctors until I found the right one that would take an aggressive approach with the IVIG and MTX combination.