Welp, the taper didn't work

[godgirl]

Been tapering from 10mg starting in August - 1mg per month. I made it down to 7mg starting last Monday. And on Wednesday my nose started bleeding and my sinuses started swelling up and feeling raw again. Saw the rheumy on Friday and she bumped me up to 10 - and we'll try the taper again in a couple of weeks.

Just needed to vent. My stuff isn't as bad as others on here, but it's just so disappointing. At 8mg I felt kind of crappy, but it settled down. I also started sleeping better and dreaming returned! I was so glad to be going down. But not anymore.

Crud.

[annekat]

So sorry for that disappointment. The same thing happens to me when I get down that low. I, too, am a lot better off than many people on here. Which makes me wonder why I can't taper off the pred without flaring. I'm currently at 13mg. and working my way down to 10. I got as low as 7.5 once, but not for long. Is pred all you are taking? I'm on 15mg. MTX and on Bactrim. I've wondered if just going up to 17.5 MTX, one more pill per week, could make a difference.

[Dirty Don]

I had trouble at 3-5mg, went back to 10ish off and on for about 6 mos. then made a dash for it...have been off since early spring this year...we'll see...

[godgirl]

Aaaaaannnnnnnndddddddd it's 4:20am - I'm wide awake. Thanks, prednisone.

Anne, I'm on 20mg mtx as well as the pred. That was one of the reasons I was hoping to taper off.

Don, what I'd really like to do is just stop taking it, you know, like today. Right now. Wash my hands of it. But... Well, you all know that can't happen.

Oh, prednisone. I love and hate you...

Jen

[Alias]

Ha! I am right there with you. It is 2:15 a.m here in AK, and I am groggy but unable to sleep at all. I have a longstanding problem with insomnia, but prednisone has definitely not helped!

Sorry that your taper will have to be a "do over." When I next see my rheum in December, I will have been at 10 mg. for about six months. Assuming my labs are good we will start a 1mg per month taper. He says that 10 is kind of the "magic number", below which many people start having flares. I am also on .8 ml MTX injected weekly, which I expect to continue for quite a while. I'm looking forward to the taper and yet dreading it, since I've so enjoyed being relatively symptom free, except for hearing loss and nasal passage scarring/dysfunction.

[Pete]

Been tapering from 10mg starting in August - 1mg per month. I made it down to 7mg starting last Monday. And on Wednesday my nose started bleeding and my sinuses started swelling up and feeling raw again. Saw the rheumy on Friday and she bumped me up to 10 - and we'll try the taper again in a couple of weeks.

Just curious about whether you have seasonal allergies that could be causing the sinus issues. I've found that taking a 10 mg loratadiene daily and 10 mg phenylephrine twice a day has kept my sinus issues at bay.

I've been down to 3 mg pred (again) for the past month, and I see my rheumy on Thursday. I'm thinking she'll take me down to 2 mg with further instructions about how fast to go lower.

[annekat]

Well, Jen, I can see why at 20mg/wk, the MTX dose isn't the issue. Curious how some people have more issues with pred tapering than others. You could just try putting up with the tapering symptoms for a few days and see if they go away, as I've heard of that with others. Or try some sort of alternating schedule, as some have done, involving either no pred or a much lower dose every other day. Some seem to feel that gives the adrenals a "kick start" on the lower dose days. I've seen some interesting examples on here that have worked for some, and have thought about trying them. My doc suggested I do 15 one day and 10 the next, and then back to 15. I was afraid to try it at the time based on how I felt, but might try it now.

I feel fortunate that for me, sleep isn't much of an issue with pred.

[godgirl]

Tom - I've been a light sleeper all my life and prednisone does NOT help that. What I found curious is that I started dreaming again at 8mg. I used to dream every night until I started on this journey, but haven't dreamed in months. My guess is that my sleep never gets deep enough.

Pete - interesting thoughts. I was on Nasonex for years for allergies. Prescribed my my primary doc. Went in for allergy testing a couple of years ago (doc finally thought that might be worth doing) and I didn't test positive for anything! It was kind of weird. Late last summer, I stopped taking nasal sprays. My insurance wouldn't pay for Nasonex anymore, and I didn't like the generic stuff I was on. So I stopped and thought "Well, if I'm not allergic to anything, maybe it's not necessary." I started having sinus issues and bleeding pretty quickly and my eyes started feeling funny. I even went to the eye doc to see if I needed a new glasses prescription. He said I didn't. That was in Sept '13. I battled the eyes, sinuses and horrible fatigue and joint pains until just before Thanksgiving when my eye went nuts and I had scleritis. And finally the docs had to figure out what was wrong with me. So, short story long, I thought I had allergies, but maybe I didn't...

Anne - I might talk to my doc about the up and down. And as for pushing through the symptoms? I did that at 9 and 8. Joint pain and headaches and a bit of bleeding out the nose - but it all stopped after a few days. So, at 7 when I started bleeding a lot more and my face hurt so much, I had to go in to see her. It was different, and hadn't gotten better in a few days. And the way it was getting worse and worse, I didn't think it was going to get better.

I have to email her in 2 weeks to give a progress report. I've been on the 10 for 3 days now, and I feel SO much better. Still some blood coming out of my sinuses, but they aren't swollen and my face doesn't hurt anymore.

[darl-p]

Prednisone … My friend or enemy? I had been on pred for 8 years and constantly dreamed of getting off it. My rheumy tapered me off in the spring and by June I was having some uncomfortable problems. The diagnosis was gout in the knee and then in the foot. I went back onto pred for a short burst and problem was corrected. I tapered totally off and started to have difficulty with arthritis in the feet. Last week I convinced my rheumy to allow me to go back to the maintenance dose of 5mg a day. Problem solved. I was on 75mg of imuran and he cut me back to 50mg along with the pred. It seems that each person reacts differently and it becomes a balancing act for the docs to find what works. For now I accept the fact that pred appears to work for me.

[Pete]

It seems that each person reacts differently and it becomes a balancing act for the docs to find what works.

Ain't that the truth!!!