Hi there. Tapering prednisone is no picnic. It can be a difficult process some but not all of the time. You might want to look up Prednisone withdrawal symptoms. I had most of the symptoms you describe but not the swollen face. Muscle and joint pain are common as is fatigue. Don't taper too fast. If your labs remain ok you just have to push through the symptoms and it us important to eventually be off this medicine as it brings problems of its own. I hope the taper goes well for you. Its a great feeling when it's finished. Autumm

Hi Melwally. I have been on 9mg Prednisone for quite a while - went down to 7mg the other month but had big problems with hands swelling more than usual and stiffness. I have also been on Plaquenil for 6 months as Rheumy hoped I could keep on that and get rid of the steroids - unfortunately it didn't work so I am having to start MTX very shortly with a view to tapering the steroids again. I have put on a bit of weight and my face is rounder than usual and this past 2 months I have been eating everything in sight!! Hopefully the MTX will work and I can start to taper successfully. Good luck with your taper, you will get there in the end.

Hi Melwally, Your tapering schedule sounds fine. Tapering can be very uncomfortable. You will need to watch your blood work to make sure that you do not begin to flare. Make sure that you take the other DMARD whether it is MTX or whatever med the doctor prescribed. The other DMARD helps to control and slow down the disease processes. Tapering is successful when the other DMARD holds back the active disease. The idea is that the other DMARD will eventually replace the prednisone in keeping the disease at a low level of activity.

If I feel weak during a taper, I will not taper down further until I feel totally stable. If my legs are heavy and my arms feel weak at all, then I will not taper lower. Tapering prednisone is not a race. The whole point of our meds is to feel well on a daily basis. Not feeling well is a sign of tapering too fast.

The moon face issue is unfortunately almost part of being in the DM/PM club. My moon face did not get pronounced until a couple years being on the steroids. I also have the big belly and some weight gain. I was 98 lbs for most of my life up to age 48. I am now age 51 and I weigh 134 lbs. I wear a lot of wrap around skirts which allow for weight gain & loss. My dresses went from small to large. I went from size 2 to size 8. I would suggest not going out to buy new clothes yet, because you are too early in the process. Eventually, you will settle in on a new size. I suggest adjustable size clothing.

It is VERY IMPORTANT that you check your blood sugar after your biggest meal. High doses of prednisone will throw your blood sugar up high. When I was on 60mg all the way down to 20mg of prednisone, I ate a lot of green beans, spinach, lettuce & salads. Avoid potatoes, corn, breads, spaghetti, and starches as these will make your blood sugar sky rocket. Be careful about fruits and nuts too. You are craving food because of the high blood sugar. Eat green veggies with low sugar content to fill up and not raise blood sugar.

I fortunately did not have mood swing issues too much. I do know that mood swings can be very big for some people.

You are experiencing the typical dreads of tapering. Be sure to ask anymore questions. I hope this helps.

I am no doctor but I think you are tapering too quick. Going down 5 mg to start is okay but the lower you get, the slower it probably will go. It took me years to get off. I would spend months at a level to stabilize. And not everyone can get off without having their symptoms come back.

As far as the moon face, it took about 6 months for it to really hit me but it took a year for it to go away after I tapered lower (like 3 mg). I've been off Prednisone for over a year. I haven't lost one ounce of the 60 lbs I put on regardless what I am eating or how much exercise I do. I also still have a big gaggly neck/double chin and I have fullness in my cheeks in front of my ears. I'm not sure why.

Please contact your doctor and let them know what your symptoms are. While aggressively tapering, you need to stay in close contact with your doctor anytime you aren't feeling right. Tapering is hard.

This happened to me.
Every time my dose was decreased things got more intense . I'd get bad headaches too.
Hang in there :)

just bouncing off what trpt1 said about making sure you take the other medicine because that will help maintain the disease as you decrease--the way my doc did this worked out beautifully for me. i started on a lower dose of methotrexate, then when i started decreasing prednisone, we increased the MTX. we continued this pattern until i was completely off prednisone. my only side effects coming down were fatigue, headaches (migraines at times), and a little muscle/joint pain but hardly noticeable. that does sound like a quick taper since you were on 60 just this past november. my taper went from 80 to 40 to 20, and then got slower. but getting completely off was pretty quick - i jumped from 15 to 10 every other day to 5 every other day and then off, and now i take it once in a blue moon when i feel i need it. that definitely does not work for everyone, but for some reason worked great for me. i wasn't careful about watching what i ate or checking my blood sugar..oops..but when i did check it, it was fine. i hope you start to feel encouraged soon, i know this is so difficult!

Prednisone taper is difficult. I have started and stopped tapers for over 6 months now. If I go below 10 mg then I start having symptoms such as fatigue, feeling sick, rash, etc. At 10 mg I am stable but I want to be able to come off at some point. Just be patient and keep trying. Make sure you are telling your doctor what is going on.
As far as the mood swings, when I first started taking it, I called myself monster mom because I always felt angry but that went away with time.

I a member of the DM/PM club and started pred just about a year ago. It made my diabetes crazy and I went from managing my diabetes with pills to insulin. In 8 months I put on 50 pounds from the combination. My dr began tapering my pred around 5 mgs less each month and then added a new med when I got down to 15 mgs. I eventually was told I could go off the pred and did fir a month but my balance problem and tremors returned. I began 5 mgs again and no insulin, just pills to manage my diabetes. The good news for folks out there is that when I decreased the pred and discontinued the insulin my weight came flying off; lost 30 pounds in 4 months. The tremors and balance issues are not great but I learning to live with it . Good luck to you, if you have a good doctor that listens to you and supports you, I hope you're symptoms decrease or disappear.

Hi All,

Currently I am on 40mg prednisone and I am tapering it. How would I know if any side effects I experience from tapering is due to a flare or the prednisone side effects?

Also at the end of tapering and coming off prednisone would someone be off of medications for good or would there be a new drug to take besides the prednisone?

Thanks for all the info, very informative thread.

Hi JNS. If you experience any symptoms when you taper they will usually go away within a week. A flare would not do that. Look up prednisone withdrawal symptoms, they are very similar to a flare, if it gets better then the next time you learn to live with it and just push through it. It's very worth it to be off the steriod. Somewhere along the road of your taper looking at your lab work and asking how you are feeling your a Rheumatologist will decide to add a second line med or not. You may do really well on just the Pred, go into remission and be fine. I wish you well with the taper. I finished mine in December, it took fourteen months. Autumm