Hi Amber. Hang in there until you see the Rheumatologist and the bloods are checked. I find the Rheumstologist has different things to say about the blood results than my GP. I know from what I read that the radek part of this disease is more difficult fir some to deal with than the underlying disease. Some people remain on 5mgs for life and most Rheumatologists are happy with that as its so low it almost does not matter and if it's helping that's fine. You have done amazingly well to get to 5mgs.,I have been stable now for over a year and off all the steriods. I still get times when my hands and knees play up, I think it's the arthritis bit which want to remind me every now and then. It happens when it's cold and damp but surprisingly when it's very hot. Hope this helps. You are doing so well Amber. Well done you. You are nearly there. Best wishes. Autumm

Amber. I meant the 'rash' part of this disease. This Ipad does its own thing!!!!! Autumm

I was on 25 mg MTX and Prednisone. It was the MTX that allowed me to get off the Prednisone. I can say that from 5 mg to off probably took me 3 years. We went very slowly with months between each taper. The thought is we were "sneaking" it out of my system. I don't know if this was really necessary but I was terrified of a relapse and needing to go back up to a much larger dose of Prednisone. I also switched to an every other day schedule to get my body used to not having it.

I don't say that to discourage you but to offer that it is very unlikely you will be successful in going from 5 mg to off. Autumn is right that most people with Myositis find they need to maintain a low dose of Prednisone ongoing.

Interesting enough, after my visit to Johns Hopkins last month, I am off MTX too. I'm waiting to see how that goes. It has been a month and I do have more aches and pains and I feel like I have a reduction in stamina but I'm not sure if it is related or not.

Work closely with your doctor on your taper schedule and follow their advice. Going too fast could put you right back on a higher dose. My first taper was too fast and I had to go back up to 60 mg and start the taper over. I can't tell you how disappointing that was to me.

Hi Amberhere, Your body will let you know what you can and cannot do with tapering Prednisone. If you have active disease, then a flare is a possibility if you taper too low. What is tapering too low? For some too low a taper might be 10mg and for others it might be below 5mg. It all depends on your disease activity. It does help to have the supporting DMARDs while you taper.

I look at it this way.. I can count my blessings if I only need to take lower dosages of any medication at this time. I know things could change at any time.

I have all the symptoms that you mention with the stabbing pains and puffiness. I especially do not like the icepick headaches that have a few moments of stabbing in the brain - no fun! I do think it is liver/kidney related issues for me. I recently went up to 6mg of Prednisone and I have some relief from the stabbing pains & puff.

I know that you will consider how you feel and your doctor's advice related to tapering. I wish you well on your choices.

Hi Lexis. It's interesting to read you have stopped the zmztX. I knew JH had suggested it but I thought you were waiting until your next visit. I hope it all goes well fir you and that finally this dusease has burnt itself out in your life. I wonder if the aches and pains are the arthritis bit if things, the MTX covers all that too and not surprisingly we get problems when we stop and reduce. I wish you all the best Lexis. You have Beeb a great role model and support fir me, you deserve to succeed with this. Best wishes. Autumm

Lexis. Sorry about the spelling mistakes, I have a MAD Ipad !!!!!!

Haha Autumn! I feel the same way sometimes. Much to my surprise, my Neuro here wasn't interested in moving up my appointment after my JH visit so I don't see her until March. I let her know the plan and she said "Good luck. Talk to you in March." It has been a little scary to not take anything at all...and not have someone watching my well being. The doctor at JH said it will take 1-2 months for it to come out of my system so honestly, I don't feel any different yet. It has been a month now. Actually I do feel different. I feel better not having chemo pumping through my body every week. I have more energy, my hair is starting to get fuller, and I feel more optimistic. Haha

Hi zlexis. It's great that you are doing so well one month in. It's lovely to hear you are feeling well. I will be thinking if you and waiting fir news. I think you still have the blood tests for a while or maybe that's just with Azathioprine. All the very best Autumm

My hands always hurt and my knuckles are swollen, but it used to be much worse. I had tapered down to 6 mg of prednisone but the pain was crazy. I had to go back to 10 mg and it is much better. The rash on my arms also improved when I went back to 10 mg

Thank you everyone for your replies - I have just seen my Rheumy and he has now advised to start tapering the steroid from 5mg to 4mg then by 1mg every 4 weeks to get completely off it BUT I am very wary of this. I usually taper by 1/2mg every 4 weeks if I'm lucky which was not agreeable by him and my doctor. They said 1/2 mg makes almost no difference but to me and I expect many of us, it does. Personally the way I think that it is my body and if it is meant to be that I taper by 1/2mg so be it. Do you think they go by the textbook too much?? Am I being too non-compliant??

I'm with you, Amber. Doctors rely on the recommended medical protocols, and that's understandable. They want to feel that they are doing what's best for us. However, we are all individuals and not always "textbook." In fact, I had one doctor who said that I was "unique" and definitely defied medical wisdom more often than not. Best wishes for figuring out what's best for you.

Hi Amber. I did it my way once I was at 10mgs. I tapered by 1mg a month. It took ages but it worked for me. You could try what he is asking and if it does not suit you then you will know he is wrong. This time the MTX has had enought time to help. I understand why Rheumatologists hate prednisone but you are really low on the dose anyway. Do let us know how it goes. You are doing amazingly well now Amber, well done. Autumm