Hi Amber. I am sorry to hear about your pain. Tapering can bring joint and muscle pain as can drugs like MTX and Azathioprine. Hope the bloods look ok. Best wishes. Autumm

Hi Autumn, yes, bloods were OK thank goodness - white blood cells up now a lot more than the other month. I am still on the MTX, Plaquenil - hoping to taper steroid from 8mg to 7mg in a couple of weeks time. Its hard to decide when to taper down again isn't it? Take care.

Hi Amberhere, tapering brings pain to most of us. When I get to 10mg of Prednisone, I will taper down by a half milligram and my body adjusts with less aches & pain too. I will not taper lower until any bad feelings are gone. I make sure I am stable before going lower on Prednisone.

Tapering brings a strain to the kidney adrenal glands and that is one of the reasons for the crummy feelings. Tips like tapering by a half milligram, Not tapering lower until feeling stable, watching blood pressure are helpful things to lessen the bad taper feelings. I like to drink some Gatoraid while tapering. You could ask your doctor if Gatoraid would be appropriate for you. The Gatoraid has a nice blend of hydration, sodium and sugar that does a nice job for me in supporting my kidneys.

Sometimes my doctor would raise the dosage of my other DMARD while tapering Prednisone to control the disease and avoid flare. I have active DM. I am one of those who is unable to go below 5mg of Prednisone without a flare. My doctor told me that I will always stay at 5mg of Prednisone unless I flare. Many other people are able to successfully taper off the Prednisone completely. The other DMARD is used to replace the steroid for disease control.

In my case, there is a difference in feeling between tapering aches and hitting active disease which triggers a flare. If I feel aches then that's a taper feeling. If I feel pain in both arms and my liver begins to elevate then that's a flare while tapering and I have hit active disease. I found that I must feel stable/normal before tapering lower. Any pains then I run blood work to make sure it is not a flare.

I hope this makes some sense. Good luck with your tapering.

Thanks trpt1 - I am due to see the Rheumy nurse next month so will see if they are going to put my MTX up from 15mg to 17.5mg while I am tapering. It is difficult to know what to do for the best sometimes - this DM is really hard work to say the least!

If you are hurting, you need more meds. Either more Methotrexate or you need to increase your Prednisone....or both. Give them a call. You can't wait a month.

Hi Amber. It's always difficult with the taper. If you have pain and still swelling in your hands maybe you don't taper again until you see the Rheumatologist. Also Amber, you have not been on the MTX very long and it's not a very high dose. I know you are improving a little at a time. That's a good sign. Autumm x

I had to laugh, not at you but at us. I try not to move at all as I woul dbe swapping out one pain for another. Do I move and cause a pain or do I stay still and deal with the same pain My feet and hands look like blown up balloons and if I move the pain increases to include my entire legs whereas if I stay still they include mainly my feet and ankles. I find myself blowing out air as if I am blowing them up but this is to deal with the level of pain I am having at the time or expect when I do move. Right now I am home alone which I am not suppose to be, but what can I do when my daughter who is the only person who can be with me has to work part time and I want a cup of hot tea. I either go without or try to get it myself which I will have to do. So I wil endure the pain as I go the few feet to heat up the water for my tea. Sometimes I heat the water in a microwave which I don't like to do but it takes less time than to heat on the stove. It is hell either way. So yes we swap out one pain for another and those who do not have to deal withthis pain can't understand it at all and those who have lived with us and watched our faces as we go thru it try to pretend that we can handle it and that we are doing great when in fact they wish that they either can take it away or are tired of looking at us making these ugly faces,which they try to pretend are still attractive. Not proofing

Hi brendacayton - first so sorry you feel so bad - this condition varies so much from person to person. I feel let off a bit more lightly at the moment. Can they increase your meds or painkillers? I totally agree - our loved ones I think do not accept the condition and its the usual - you look OK. I have come across this so much since having DM. Inside you want to yell at them but you can't. I want to say "I hurt every day but you can't do anything about it" usually my friends are always complaining about headache, backache, depressed. Is it that serious?? Sometimes I think it is very selfish of me to feel really annoyed with them but I have to remind myself that they and my family are, I think, in denial. They do not accept the seriousness of DM/PM.