The Prednisone Poll - wean away!

Raise your hand if you are currently taking or have ever taken prednisone for lupus? Yup - just as I thought. A sea full of hands!

I, of course, have been on (and blogged about) prednisone for the majority of my life with lupus. I was able to go off of the drug completely for about 2 years, while I was on CellCept (note I was on CellCept a total of three years - 1 year with prednisone, and then 2 without). Currently, I'm on 5mg of prednisone every other day, and am loving life. According to my doctor, it's not a high enough dose to cause any real damage, and 5mg is just enough to keep me pretty much pain-free while not bringing with it any of those crazy side effects. And per doctor's orders, I'm able to add a fiver (a 5mg pill, that is) every once in awhile on my non-prednisone days, if I'm feeling crummy. And again, I'm happy with that. Gives me a little leeway, and allows me to really judge how I'm feeling from one day to the next. So bring on the 5's - I'm happy right here!

That said, I've had my fair share of high prednisone doses. I was on as much as 80 mg a day - not for more than a couple of weeks at a time, but long enough to see if it would rid the fluid from the lining of my lungs (which was an unfortunate negative). But 60 mg a day was the only thing that seemed to work for awhile - and I'm telling you - that is a lot of prednisone! 20mg was about the norm for me, but anytime I was on the drug, my doctor was always being strategic about how we were going to get down to a lower amount. And while I was always so proud when I was able to get down to a lower dose (even 5mg less made a difference), I started shaking in my boots when I would near the 10mg mark, because I knew what was in store. My body, for whatever reason, did not like going below 10mg. At all. I would be on 10mg daily, without a pain or a hitch, and then per doctor's orders, I'd try stepping down by 2.5mg, and it would be flare city. It was like I hadn't taken any medication at all!

It took a couple of years (along with a good dose of patience, understanding, and re-evaluating of expectations) before I could go lower than 10mg. And once I did - you'd thought I'd won the lottery! I was so proud of myself - not for just being able to shave off a few milligrams, but because I had been patient with myself. I hadn't rushed the process. Rather, I'd consistently tried to wean off the drug, but if my body told me it wasn't ready, I wouldn't push (which is so unlike me.) I just waited, and worked on other parts of my life with lupus (getting enough rest, not working too much, not overexerting.) I thought that if the other aspects of my life came into balance, then maybe those 10 little milligrams wouldn't have to work so hard - and my body eventually wouldn't need them. And you know what? It worked!

So now that you know the dance I've done with prednisone, I'll ask you to share yours. What's your magic dose of prednisone - or should I say, your "stumbling dose"? The dose where you're body says, "Whoa, there!" and suddenly seems to freak out if you go below it.

Let me know by casting your vote in the poll at the right. I'm hoping I'm not alone in my weaning woes!


Hi Sara, am currently on 60mg of prednisone and am so hungry ALL the time...

Just came home 3 days ago from a 15 day hospital admission (right pleural effusion, ascites, autoimmune hepatitis).

I hope to get to a level where i'll not need prednisone at all (when? am despairing).

Your story gives me hope. Thank you.

Nairobi, Kenya.
lupie said…
Currently 20mg.
Hopefully now with Cellcept, it will eventually get tapered down further.

I get cranky when prednisolone goes down to 10mg. Very cranky - just like my old car.
Kelly said…
I was taking 60mg after a 12 day hospital stay with lupus nephritis in April, dropped down to 40mg last week after reaching my 3000mg dose of cellcept....however, found out today my wbc count is dangerously low and will be back up to 60mg prednisone and lowering cellcept. :( Doc said probably headed back to the hospital until wbc count is higher. Hoping this med change does the trick, but REALLY hoping to be at a much smaller dose of prednisone soon...I am a ravenous, sleepless beast.
I struggle to get below 30mg...heck 60mg has been the norm for so long that I don't know if I will ever sleep good again. The highest dose I have been on for any length of time was 100mg for 6 months. Recurring bouts of optic neuritis with vasculitic lesions in my right frontal lobes. Been on prednisone for nearly 15 years now. I also take a weekly methotrexate dose of 25mg and 200mg of Immuran. Lupus nephritis, pleurisy, vasculitis are kind of trying to get a foot hold. My doc is very aggressive and the goal is to wean me off the steroids within the next year while keeping me on the immunosuppressives. Fingers crossed.
Anonymous said…
Hi my name is krystal n i live in the caribbean which is super hot 90% of the year which makes living with lupus hard i also im only 20 n have a job dat becomes stressful at times i only see my doctor every 3 to 6 mnts which sounds amazing right nope wrong see my family n friends doh know much about lupus n some have looked it up but something i become so ill i think if i try to seat up i will fall however the health care service here says im only 20% which in my country allows me to work which is good but i am jus really looking for someone who can truly understand where im coming from n help me get thur it.

Caribbean girl in pain help!!!
Sara Gorman said…
Just getting around to responding to this now - but thanks so much for sharing. Hope the taper has happened and that you're doing well!
Sara Gorman said…
Prednisone is cause for crank central, I agree! Hope the cellcept worked wonders. Thanks for sharing!
Sara Gorman said…
Just seeing this now - so my hope is that things have improved since you commented! The juggle of our meds requires some amazing management, eh? Hope you're hanging in there!
Sara Gorman said…
Thanks so much for sharing. Hope the weaning happened and that you're doing better. Glad your doc is on it!
Sara Gorman said…
Oh man! Between the heat and the long stretches between medical visits, that's a lot to handle! I hope you're able to pick one or two family members who can help and try to understand. Creating a support system is so important! Best of luck - look forward to your future comments!
Unknown said…
Hi Sara

I am was diagnosed with Lupus in 2003 and in December 2017 I almost died on Hemoptysis (lung bleeding)
At that time I got lucky and came across a doctor who after talking and listening to me diagnosed me with Wegener's Granulomatosis a form of vasculitis.
My chemotherapy and parallel Prednisone started last December and was still ongoing since a few days ago because my WBC was very low..
I did a lot of research and came across the healing properties of Fasting.
I brought my white blood up to 2.9 from 2.2 in 4 months by fasting only.
Have you heard about it?
If not just google the work of Valter Longo about chemotherapy and fasting. and Dr. Dawn Lemanne
I hope all is well with you <3 and Merry Christmas

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