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Prednisone taper

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Posted 5/9/2013 7:39 PM (GMT 0)
I have been on Prednisone for the last 5mths I am now going form 10mg a day to 5mg.  I am told this could be a hard drop.  I know to look for signs for a flare but how do I know if my adreanal glands are back.

Any help would be great.  I have all the bad side effects of pred. and I am so looking forward to be off this drug.

Took all the pain away but reeks havoc with the body!

Thank you,

 

Posted 5/9/2013 7:53 PM (GMT 0)
What flare symptoms did you have that Prednisone helped with? For me, those were the symptoms that tried to come back when I was dropping. If dropping 5 mg at a time makes you too miserable, I suggest dropping 1 mg, holding 3-4 days, then dropping 1 mg, hold 3-4 days, and repeating till you get to the # your doctor recommended.

The most common symptom people notice when coming off of Prednisone is fatigue, tiredness, loss of energy, lack of motivation, that sort of thing...
Posted 5/10/2013 12:46 AM (GMT 0)
I was on 10mg for well over a year possibly 2. I could not come off of it going from 10mg to 7.5 (cutting a 5mg in half). I would have severe pain and no energy. My Dr. said I was coming off to fast.
I have come fr0m 10mg down to 7mg in 5 months. She has me go down a mg a month. I am only able to do this after 2 infusions of Rituxan in January. I am holding at the 7mg mark now because I am back to hurting. I will see my rheumy in June and am staying where I am until then.

Good luck!
Posted 5/10/2013 4:24 PM (GMT 0)
I was on short bursts every now and then for pain and swelling of joints and plerisy. However this past December I was in the hospital for a week with lupus pneumonitis had 3 days of 1,000 mg of Pred by IV then shots of 100 then pills of 40 a day for a week then 30 then 20 then 10 then back up to 20 then down to 10 and now I started the 5mg a day.

People say that the adrenal glands may not start back up and I just want to know what to look for.

I have to get off Prednisone. Weight is up, my thyroid is worse Dr up'd that medicine (low thyroid). SUgar is elevated if it goes up more she says I'll have to have meds for that, blood pressure is up, edema has sent in I now have pills for that. I can't sleep and I could go on but hey there are others out there that have it worse than me and I am just glad to be feeling better.

Rhemy has said you will either live with the disease or you will live with the side effects of the meds. He only likes to use pred for short bursts. But we had no choice in December and so far I have a little joint pain, the dry eyes and mouth are coming back, but no lung issues and really the pain is managed with motrin so I think it is going well.

I am new to lupus, I have had it for a few years the past year was really bad, every month I had a flare with maybe a couple of days feeling ok.
Posted 5/10/2013 5:28 PM (GMT 0)
Hi Marge2.0. I don't know if anyone has welcomed you to our forum, so I'll just say Welcome! Last year during March I was in hospital twice (pneumonia  then sepsis or lupus pneumonitis) so they were giving me 300 mg pred daily. I feel your pain Sister smilewinkgrin Anyway, I did the 40, 30, 20, 10 thing and rheumy said to decrease 1 mg per month and maintain at 5 mg. So, 9 mg, 8 mg, and 7 mg were okay. The adrenals are supposed to kick in below 7 mg of prednisone. Well, I've had lupus almost 10 years and I've been on pred many times for months or years at a time. When I tapered from 8 mg to 7, it was tough with lots of pain and fatigue, but the drop from 7 to 6 and then 6 to 5mg it was brutal.

I've been on 5 mg for almost 1 year, and I have pain almost every day (various joints) and terrible fatigue Recently I developed shortness of breath. Benlysta made me even more fatigued, so that was a wash. Last week my rheumy told me to increased my Cellcept and he put me back on Celebrex for the pain.

I have an appointment with an endocrinologist in July to see if my adrenals are still working. Rheumy asked me to see a cardiologist so I can get a full cardiac work-up to address my shortness of breath. And so  it goes. I truly hope that since you're relatively new to lupus, you are able to stabilize at 5 mg. In previous years I was on a 5 mg maintenance.

Oh, for the dry mouth you can suck on sour candy or candy sweetened with xylitol. Brush your teeth with Biotene toothpaste, use only non-alcohol mouthwash, and you can try Biotene Oral Balance before bedtime. Dry eyes, if not supplemented with eye drops can cause permanent damage. Well, I hope you were able to read all this- I can get long winded which is really funny since I'm short of breath. Let us know how the taper goes, okay? Love, Butterflake

Posted 5/28/2013 7:35 AM (GMT 0)
Oh good ole' Prednisone. Weaning can be quite tricky, especially if you've been on it for a while and our adrenal glands are on vacation...not to mention that you can start to flare as you try to wean.

Try to be as patient as possible because it can take awhile. I've been off and on Prednisone for the past 10 years and non stop for the past 4 years at doses anywhere from 60mg to my lowest of 17.5mg. Your body (via your adrenal glands) makes the equivalent of 7.5mg daily for general body functioning so if you've been taking more than that for a while you may want to wean slowly. For example I can only go down 2.5mg monthly at most because I don't make my own Cortisol (prednisone) naturally.

Good Luck
Posted 7/28/2013 5:06 AM (GMT 0)
The doctor put me on 40mg a day of pred for a month and that was rough coming off of it. Never thought it would end. I still have yet to be diagnosed with Lupus, my lab results came back extremely high, so my primary said make that appt now and don't delay. Fine another doctor to poke and prode. I am taking Neurontin, cyclobenziprine, diclofenac and then zolpedim for sleep.;;; and I still don't sleep. Last night cause I was in so much pain. Could not get the shoulder comfortable.
Posted 7/28/2013 5:31 AM (GMT 0)
Welcome to HW, make sure to start an introduction thread.

Sleep is hard to come by sometimes when you're in pain. I like to use muscle rubs and aspercream to ease my pains. I also love to use ice packs or hot packs (depending on the pain) to help. However, I make sure not to use the rubs at the same time as the packs. It can really hurt. Ouch!

Invest in you a good spa wrap. I love mine to sleep in when a joint is complaining. They're about $30 at any store that sells items made by "soft Heat". I found mine at Wally World.

Some of us get crate foam and top it with memory foam to cushion our beds more. I have a pillow top mattress with two large body pillows to prop sore spots on.

My doctors won't give me sleep aids. Not sure why but I've found some alternatives: Relaxation video, turning the clock away, reading, warm baths before bed, lavender oil, listening to books on ipod, turning off the lights, no TV an hour before bedtime.

Even then I do have an occasional bad night and see the sunrise. Since it's just me I can sleep anytime I feel the need to.

Just don't fret over it. You're body will sleep when it's good and ready.
Posted 7/28/2013 3:32 PM (GMT 0)
Hi Marge! I'm new, too. :) I am only on a 12-day burst, and having a hard time distinguishing Pred effects from my real effects! Tomorrow I go from 10 to 5 - we can do it together! :)

I hope it is smooth for you!!

Jen :)
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