Pred, going up or down

It’s really tough, and probably inappropriate for us to give specific dosing advice. Everyone’s dosing is so very unique. I have titrated my dose fairly frequently over the last few years while trying to finding the right biologic. We seem to have finally hit on the right one, and now I am struggling to slowly wean my prednisone down. So, as many people say, trying to find the lowest dose that is effective is important. As is being able to function! Are you able to reach out to your Rheum or their nurse through their portal for more guidance? It is also important to get their advice on when you need to carefully wean down. Sudden decreases in doses can be problematic. I know I haven’t been really helpful, but I do Hope for you to get the relief you need, Jo

Hi . My wife, Kelly Mack (a contributor here), also is on 5mg of prednisone a day, with an emergency prescription for bad days/flares. As Jo said, exactly how much is pretty individualistic. Kelly is pretty judicious in adding prednisone - usually an extra 5mg or less. One thing that is important is tapering back down after increasing prednisone. The tapering can depend on how large the increase, duration, individual physical circumstances ... For this, as Jo also mentioned (I point this out as evidence that the experience for long-term patients with this issue is pretty consistent), the guidance of your rheumatologist might be very helpful. Also, is there a specific reason you cannot start any other treatment for at least three months? Are you having a procedure? I ask because it can also be necessary to adjust steroids for a procedure. Best, Richard (RheumatoidArthritis.net Team)

Thanks, rheumy left it up to me. I guess that means experiment up or down myself. I’m trying 10 today. Will step back down to 5 when I feel better. I guess it is a very individual thing. Rheumy just said go up as far as 20 when you need to and then step back down to 5. As far as overall I am a complex patient. Plaquenil was our hope but it created severe side effects right out of the gate. Plus I am almost blind in one eye. Many other meds like MDX are contraindicated for me because I have another autoimmune disease (PBC) that adversely impacts the bile ducts in the liver. Exposed to TB 30+ years ago, long story on treatment for that. I’m on Medicare. So those are ALL complicating threading the needle on other drugs. We’re waiting 3 months because my 40th wedding anniversary is coming in May/June and have a big trip that has been planned for 3 years to where we got married in the South Pacific. Can’t be experimenting with anything new now. So she basically told me just move the dose up or down as you need to during the next 3 months. I guess what I was wondering was how bad do you get before you titrate up? That is what I was curious about for other patients. My issues are mostly with hands and feet. She also told me to see my podiatrist if the feet get bad. So as a newbie and with this big important trip coming this is where I am at. Overall I am fine 75% of the time with 5mg, can still do pretty much all I want. I’m a swimmer so swim every day. But there have been some days, especially when I tried to go down to 2.5 that my body was in open rebellion. So back up to 5 but would take about 3-4 days to feel good again. Yesterday was the first time 5 wasn’t working so well. Anyway that’s my story. Cheers

I have been self-regulating my prednisone for years so let me tell you how I do it, which, of course, is in no way an endorsement or recommendation that you should do it this way. I am simply illustrating how I engage in the practice of self administering prednisone for posterity. I first set a target of where I want to be at, say, a year from now and, say, five years from now. A year from now I'd like to be down to 6mg a day, and five years maybe 4mg a day. So that means my baseline right now is 7mg. If I had a bad day, I don't immediately go up. First, I try to decide if it's a one-day fluke, or if it may be a days or weeks-long issue. If it's simply a day or two issue and I'm trying to get a session of "overdoing it" tamped down, I'll take an extra 5-7mg one day and then half that the next day and then back to normal on the third day. If it's something more long term or serious, I will lay out a week where I start at 3x the normal amount and then use 7 days to go all the way back down to normal by reducing it an equal amount each day. This knocks out almost 99% of issues that increasing prednisone can help, at least in my case. As I said this is in no way instructions on how to do your own self-administering, but I wanted to share what works in my case. If there's anything else we can do to help, let us know! Keep on keepin' on, DPM