Hi again Ricky, The doctor put me on 15mg prednisone last year when I was first diagnosed - it did take a few days to get into my system but when it did it really helped. A lot of my results were OK - this DM works in mysterious ways sometimes. I am starting to feel a lot better now the MTX is beginning to kick in so hopefully I can taper again. It does take a while as I had tried other sparing meds.. It just takes time and try not to worry. Take care.

Amber. Its good to read that you are starting to feel better. That is great news. This thing is such a Marathon. Its lovely to read about good progress. Autumm

Hi Amber. Great to hear from you. I am on day 4 of starting my 15mg no huge difference yet... do they take a while to kick in? Or maybe my dose is too low. I know hardly anything.. will I need other drugs as I see others talking of various other things! Do some just need the Presidone? X

Hi Ricky. As it's such a small dose it might take a while. Perhaps if you don't see improvement you can now go up on the dose. Usually the Rheumatologist will introduce other drugs such as MTX or Azathioprine, there are others, these will help you to control the disease as you start to come off the prednisone. I take Azathioprine and have been finished with the prednisone since Christmas. Keep up the good work and let us know how you are doing. Autumm

Back to GP tonight to see how I am on tabs. Not felt so good today...

Hi Ricky. Good luck and all the best for your doctor visit. Trust him and let him help you, it will go slowly but it will go well. There will be good days and bad days at the beginning of treatment but the bad days get less as the treatment works. Autumm

Hi Autumn. Saw GP last night. He says I look much better... I did feel so much better but today I feel a bit rubbish no idea why... im so pleased eith myself (ridiculous I know) I have now today gone up to 20mg... huge huge step for me!! My rash hasn't changed but its only been 6 days on meds.
Has anyone else had or got like sores that scab over? I have a couple.. very sore. Doc said its impetigo?? Now starting antibiotics. Are these normal? To be honest I really dont know much of this illness!! Overlaps... bloods... etc..
Thank you for your support and I hope you are well xxx

Hi Ricky. Sorry to hear about the impetigo. Its a common enough thing and if you are stressed out and ill and feeling low these things happen. The antibiotics will sort it out. Great that you are taking more prednisone, it's also good to know your doctor is saying you look better and that you feel better. You will have good days and bad days. Pay real attention to your diet now, lots of fresh fruit and vegetables and yoghurt, boost your immune system and get as much walking in as you can and are able to do. I never want to do any of it but feel so much better afterwards. I bought a pedometer for about 5 and use it to measure steps, my rheumatologist suggested 10,000 steps daily. Took ages to get there but its worth it. Hope someone else can advise you about DM. There is a fab lady on here called Nanny. She uses lots of alternate things to help with diet and skin. Its lovely to know you are moving forward. Best wishes. Autumm xx

Thank you Autumn. Before my cancer and now this illness I used to run and walked 5 milrs every day. So heartbroken when I had to stop. Even walkung the dog has been a nightnare but I am walking round the fields behind us... come back exhusted but so want to get my life back.
We have cancelled our holiday to Greece as I believe its not possible to go out in the sun... is that right?
Does it ever go? Or is this it for life? I definitely want to get my diet healthy now... x

Hi Ricky - glad you are feeling better - we all have "off" days - sometimes you feel like rubbish and tearful but other days you can feel positive. I take the attitude I won't be beaten by this and I believe you have to push on even though there are days you want to give up. I try to think of things to do every day - even if its going on the computer!!

Hi Ricky. I don't have DM. I have PM so no skin problems. I take Azathioprine so always wear a hat, long sleeves and factor 50 in the sun as the Azathioprine can cause problems. I go to Turkey several times a year with no problems. Think about holidays in late September or early October, I love Turkey then. Start a new discussion about DM, the sun and travel. You will get lots of response. Yes, there is life after this. You will learn and know more about it than your doctor and you get used to managing it and what is right gor you. Great you have made a start on walking, ho a bit further every day and take your Meds. Roll on booking that holiday!!!!!!! Autumm x

Hi Ricky, I have DM - I am on Plaquenil for the rash on my hands and eye, neck. I have taken this for several months now - it took about 5 months to kick in properly. I too have a dog and last year I could hardly walk him as holding the lead was really painful and my legs felt like they were in treacle every time I took a step. I managed but looking back I don't know how - you seem to get an inner strength from somewhere which I believe comes from being very determined and even cross! I am now able to walk well and take my dog out for quite a while. Autumn is way ahead of me and finished her taper very successfully - PM/DM medication seems to go in stages - first the Prednisone then whilst on the steroid the DMARD is gradually introduced to get you off the steroids. In an ideal world none of us want meds but the right ones are really good at giving you back your quality of life. I agree with Autumn about covering up in the sun - buy a good sun tan lotion and pay particular attention to the back of your hands. If you add a new discussion/topic as Autumn has said, there are lots of lovely people who can give your their opinions and try to help. I have found this group exceptionally helpful. Take care.

Thank you for your positive post!! Makes me have so much more hope!!
I am on my 3rd week of presidone. Up to 20mg from 15mg. I feel so well like a light has come back on. The pain is so so much better. I am able to walk better and want to get up in the mornings now. The past 6 months had been horrific.. as I know you all suffer the same and worse. The only thing is the rash is taking a while to clear still there but if I had to chose pain or rash... I could live with the rash but not the pain!!
At the moment I have a really bad sore on my upper buttock... it will not heal and is so painful. I am on antibiotics but they are doing nothing. Doc says its impetigo. .. but I don't think it is. Has anyone else had this problem?
Doc going to taper my tabs next week... I'm worried is it a bad thing??
Sorry for all questions!! Hope all are well out there xxx

Hi Ricky - glad to see you have started a new discussion - you should get some helpful replies. I am very surprised your Doctor wants to taper your steroids already!! I am still on them after a year although it is a small dose. For the rash I am also on Plaquenil which did clear it up. As to the sore - I haven't had one but someone in the discussion may have had the same experience. Glad you are feeling so much better.

Yes I was wondering why taper after just a month.... waiting to see if anyone replies re sores!! Thank you xx