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Discussion Starter · #1 ·
Have you been on a maintanance low dose prednisone? What is your dose and how long have you been on it? just curious, kim.
 

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Pred

I have been on anywhere from 3 to 5mgs for almost 4 years. I have gotten off of it for 6 months before but I felt really bad and my adrenal gland doesn't put out enough good stuff anymore. So I am afraid it is my drug for life.
Laura
 

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I'm in the same boat as Laura. I'm on 5 now, been on that for about 1.5 years. keep trying to cut it off but always seem to have to go back. right now I'm taking 5 one day, 2.5 the next, then 5 and so on. Gonna keep trying to reduce it!

Eric
 

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I was on 5 mg. a day for 6 mos. or so, then went to 7.5 for about 6 mos. and have been on 10 mg. a day for about a year now with occasional pulses of 15 mg. for a week or two. I am hopefull this July I will be able to go back down to 7.5.
 

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I've been on 5 mgs for about a year now. I don't know when I will be able to start to try and wean. My Doc hasn't mentioned anything about coming off of it.
Gen
 

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Hi Kim

Welcome to the Forum :)

I've been on a low dose of pred since November 2005 - starting at 5mg and then up to 7.5mg and, apart from a brief spell of 10mg, I have been trying to reduce ever since.

It's certainly not easy:worried: Everytime I get below 5mg I feel like a truck reversed over me for a couple of months and then I go down another 1mg and 'whammo' there's that truck again....

I'm currently at 2mg and every day feels painful and difficult. I'm never sure if its the reduction or just the disease. I see my Rheumy next week and I am going to have a serious conversation about the 'crapness' that is Lupus. I have no idea if it will get me anywhere but I sure deserve the conversation! ;)

Much love
Joan:rose:
 

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I have been on maintenance prednisone for more years than I care to remember - actually I really can't remember how long - 15 years plus ?

We aim at having me on 10mg, but for quite some years I had to stay on 20mg otherwise my cns lupus imediately flare (heck, it flared anyway !) One thing good that rituxan has done for me has been to allow me to reduce to a 10mg maintenance dose - although I am currently on 20mg with no plans to reduce it for quite some time - maybe until after my next rituxan infusion (if I get lucky again and get approved for it).

cheers

raglet
 

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I seem to have to stay around 12.5mg but that's mainly for myositis problems with my lungs.

Katharine
 

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Ive been on Pred. for 2 and a half years this time. Im down to 2.5 mg but struggling to go any lower. I too am never sure what symptoms are the Pred. itself or just usual Lupus.
As im not really taking anything else at the moment I suppose 2.5 mg isnt too bad. I take Ibandronic Acid (Bonviva) once a month to protect my bones.
Good luck
Sal x
 

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Discussion Starter · #11 ·
Thanks everybody for your imput! I am at 4mg daily and am having a bout of pericarditis/pleursey, :( but refuse to increase my pred. I am riding it out with ibuprofen, and am feeling better daily. I also added colchicine back(stopped 2 weeks ago, may have triggered the pericar/pleur.?????)
I have been lowering my pred(per dr.) by .5mg every 3 weeks or so for the last 8 months. I will stay at 4mg right now for a while, as I dont want to change my luck!:)
Kim8)
 
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