JoanneandDevin - I'm currently on 30mg daily dose.. it's been about 2 weeks and I've just started to notice my appetite increasing. I'm always hungry. Trying to curb it with healthy food options lol.

as far as it addressing my arthritis symptoms - they are all but gone. This stuff works, but my doctor wants me off it in the next 4-6 weeks.

What about you?

mama mia 30 mg for a regular dose not a taper? whew. If I was on it for 2 weeks I would be cured and awake for 14 days. You folks that can handle a consistent very high daily dose - I am jealous. It makes me ra feel so good but I can't live or sleep.

I have never done the alternating dose. I just lower gradually. In big 5 mg chunks at first, below 5 mg in 1 mg increments, I used to do a lowering every 2 weeks, but I really don't need to, so now I do every week, down an increment.

I do have a close friend in my church with RA (really nice to go to tea and talk about our diseases, and not have everyone else rolling their eyes!). Anyway, she was just on mthx and prednisone, and she had been on the prednsione for years, and her rheumatologist made her go off. So, she did alternating days for a long time.

Ironically, the lung specialist wanted her off mthx because she had bad nodules, so then she was back on 50 mg of prednisone a day. And hating every minute of it. Meanwhile, she got a blood clot in her leg and foot. But, apparently the lung issue was not mthx lung, so she is back on mthx, weaning off of prednisone again. And so it goes!

yeah it sucks that one only has has so many options - it's a see saw Marlene huh?

radad - yes that dose makes my ra disappear like a poor person's diagnosis or confirmation - I also suffer from pred rebound flare - my system does not re-set it just rebounds to worse inflammation than when I started. However this is just my crappy body. you might have given the system a kick to go away and perhaps you will (hopefully) reset to less inflammation. the "remission" is also mentally challenging (I find the see saw of gone today back tomorrow not helpful).

I have been taking 10 mg every other day to try to see if it would control this latest flare. I am starting to feel stronger again and I have no side effects from the prednisone. Even 5 mg can make my face swell like a balloon! I am seeing the doc today to beg her to ok an alternating daily dose to help out the orencia and get me back to living a somewhat normal life. Luckily I work for my church and run my own business in the afternoon so I am able to rearrange my schedule according to how I feel but it still doesnt make up for all the downtime this disease gives us. I know they treat lupus patients this way so I am hoping this will be ok even if I have to sign a waiver of responsibility. There are so many side effects that all these other medications can give and yet prednisone is the one drug that makes me feel alive again. I am willing to take the risk.

depotblue - yep. I guess its kind of a high daily dose. But when I tapered from 60/40/20, all my symptoms came back when I got to the 20 mg dose. so 30 it is for now. so far so good. and my lower back hasn't felt this good ever (or for as long as I can remember!) and all pain and swelling in my ankles and feet is gone! I'm actually feeling pretty good today.

My rheumatologist said you should never take more than 7.5 mg prednisone daily for long term use. Any more than that, and the adrenal gland can shut down for good.

I have a cousin who has been on maintenance prednisone since 1953, when it first came out. If you think you are having no side effects, you need to meet my cousin. There are so many things that you cannot see that are going on inside the body.

She has been addicted to prednisone for at least 50 years, no chance of getting off. (Of course, there really were no other meds in the 1950s!) She has mass muscle wasting and bone necrosis. Two of her vertebra in her neck were destroyed by prednisone, and she had to put a metal plate put in her neck to hold her head up. She was in a halo for 5 months, with constant infections at the contact point.

The other big thing with prednisone, is that even though you feel better, because prednisone stops inflammation, it actually doesn't top the progression of the disease. My cousin has more damage than you can imagine! About 15 years ago, she got an RA nodule in her throat, and died in the operating room. They revived her, put in a trache, and now it is permanent. Someone has to clean it twice a day. To say nothing of having a tube sticking out of your neck, for the rest of your life! I told her to get on mthx, which she did. Her rheumatologist, "never thought of it". (I had an RA nodule in my throat once, when off meds! It damaged my singing voice!)

Of course, here I am on 7mg daily. I could go down for the RA, but I need it badly for my asthma, living with the smoke in BC.

Depotblue, another case of excuses I make to stay on prednisone! LOL Just joking! Praying for the smoke to clear.

I guess what I meant to say is:

Prednisone gives you a false sense of feeling better, when you should be looking for meds that will stop the progression of the disease.

Unless you have exhausted the med route, like some of us.

i agree with everything Marlene says to the 100th degree - as a friend to all on this board, pred masks all your symptoms, causes you to do too much with the joints when they feel grand, does NOT treat the underlying conditions of the disease and causes other co-morbidities that can be worse. My mom died of adrenal disease.

That being said I have a partially collapsed lower left lung, and reactive airway and asthma and recurrent pneumonia so I save the pred baby for life as in my lungs and I let the pain rage on with the RA.

Marlene - don't know your case of asthma - but I don't take pred for daily asthma. Only when I have a severe asthma attack - and guess what today was the day!

I am sitting here on 60 mg pred ANYONE WANT TO TALK tonight? laughing. mama mia I have so much better breathing and NO Rheumatoid GO FIGURE

Marlene I had a SEVERE reactive lung today - it was either go in the hospital for iv pred until my lungs opened up or stay home and do what the doctor said which was take 60 mg for 5 days, then 50 mg for 5 days and taper taper taper. pred sucks. pred saves me breathing. ah well.

hugs to all.

Well she did not agree with me. She being the doctor. She agrees with you that it is masking and not fixing it and damage will still be going on. In fact was a little upset with me that I messed with the dosage without her knowing. She informed me that when people die from these medications that prednisone is on the top of the list of the culprits over the Biologics and other medications used to treat our disease. So I am off the orencia and on Xeljanz and weaning off the prednisone. I sure wish there was a permanent solution to this

could not agree with you more Joanne. It makes me so sad that I have to take steroids for breathing just when I have an asthma attack, reactive airway severe, or pneumonia moderate to severe which for me is at least twice a year.

I turn them down for RA - i figure I have not choice. Good luck with your taper or wean. My rheumatologist applauds my pred refusal for RA she doesn't force it on me or rule over me. Never would happen. we have this type of collaborative effort where we discuss and I decide. I appreciate that.

I also have to laugh thinking back a decade to when there was a natural subset of this group which I loved for their ideas. But they would self laud themselves for their purported non use of dmards or biologics then run around self medicating with pred. Pred is just as dangerous or more than biologics or dmards.

Let us know how your taper goes. Hang in there.

I totally understand that the pred is just a masking agent and doesn't actually "help" other than to reduce pain/inflammation. I don't want to be on this stuff long term, and neither does my Rheumatologist, but for now.. we'll see how it goes. I'm actually dropping to 20mg starting Friday. Hopefully with the sulfasalazine I can drop off the pred completely and soon.

Thank you all and good luck as well, prayers!

Depot, I don’t usually take prednisone for asthma, just 3 inhalers, and Singulair. But, I live in the BC interior, where the air quality is 10+ from forest fire smoke. We have a lovely view of a big lake and mountains which are just below the vineyard, which borders on our property. We haven’t been able to see beyond our yard for weeks. And some kind of yellow, terrible smelling smoke for a long time, they cancelled a triathalon this weekend, the air quality was so bad. We have filters in the house, I have a high quality carbon filter when I go out. But the air is still bad. And smoke is one of my worst triggers. So, the prednisone keeps me out of the ER. I really want off of it, but it will have to wait for days of rain, and all the fires in the western US and Canada to go out.

Meanwhile, I really have no idea how the 5 day interval for Orencia is working for my RA. At this point, I would not be on prednisone for RA. But for asthma? Sigh!

Thanks for the prayers, Joanne. I sure can use them about now. Please pray the rain will come, too! Thanks!