How Fast to Wean Prednisone?

I have been on Pred 60 mg per day since August 18th.
Saturday I went to 50 mg in order to see if a lower dose can still treat my disease while reducing some of the side effects.
I spent all of Sat night in severe joint/bone pain. which pain meds barely touched. I was minutes away from going to the ER.
Could a drop of 10 mg in one day be too fast?
Or is it coincidental? I've been back to full-time work for 2 weeks now and not sure if that caused it.

Thanks,
Doreen

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I'm no doctor but when I was up around 60 a drop to 50 had no effect.I think the problem most people face is when they are weaned off completely,If I recall he had me taking only 1 mg for quite awhile.Good luck.But,it wouldn't hurt to call the doc to see if it's a coincidence.Hope you have a good doc. My doc has a policy not to talk to patients on the phone. You MUST make an appointment.It all goes to a RN to answer a question....who probably relays it from him. But,it's not the same as talking directly to him. Good Luck.

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Dear Doreen C. I too was reduced from 60mg to 50 mg of Prednisone when the side effects were to much last May. I had no bone pain from that reduction. My guess is that you are not sleeping and are wired to the ceiling. Moody, cry or fly off the handle easily??? Right.! I would talk to your Doc.. about a sleeping pill, and perhaps a little anxiolytic. It really helped me. Wean down on the Prednisone very slowly if you can. It is a dangerous drug and if weaned to quickly you could end up with a Cushings Syndrome. Have Hope. I am now down to 7.5 mg every other day, with the addition of Methotrexate. Everyone is different of course but this is working quite well. I was fearful of going on Methotrexate, and after much hemming and Hawing I did. It was the right decision for me.
So on Monday call your Doc. be your own advocate. We who have this must because as far as I know there are no Doc's that are truly Sarcoidosis Specialists. Hang in there, day by day, you will be better.. Believe and it will happen. Pray and you will be relieved. Take care, Middie1.

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Hi Doreen,

I started on 20mg a day which is lower than what you started at but, I too got joint pain/aches when I started to reduce the Pred. It's common to be sensitive to going down on Pred. and the need to taper slowly is really important. My pains went away eventually and I continued to taper SLOWLY. I went down to 5mg and my symptoms started coming back so now my doc has me alternating 7.5mg and 5mg daily and that really has helped.

You may want to speak with your doc to have a slower taper and stay on it for a month or so as I did and see if that helps. A couple mg's made a difference for me. I hope you get some relief in your symptoms soon.
Take Care,
Kris

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Doreen,
There are times when I get worse, my doctor takes me back to 80-90mg a week and then I reduce it by 10mg per week until I get down to 20mg, I have never had any problems with the reduction.

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Thanks Silvercivic.
This is a hard call. COuld be environmentally induced from working a 12 hr shift ( which I do 3 days a week) or the weaning or a combo of the both. Gotta love this drug and disease.

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Middle1:

I have been sleeping. I'm on anti-depressants to overcome the mind altering side effects.
Since being on high doses of pred I have had bad joint/bone pains, but only a very few nights where everything is severe.
Yesterday I happened to work a busy 12 hr shift and wean on the same day.
I will definitely call the doc.
Thanks for Your Help,
Doreen

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Thank you Kris.
I will contact the doc in the am.
I know in the past when they tried to wean me form IV solumedrol to oral pred I had a crisis and ended up with severe withdrawal joint pains from the sudden decrease.
I could just be super sensitive.
And thanks for the encouragement. I can't wait to get to a strength that will hold the disease ay bay and keep the pain away.

Doreen

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Thanks Frish. I will keep that regime in mind.

Doreen

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You shouldn't reduce your dosage without your doctor's permission. When I had massive side affects, I called my doctor. He reduced my dosage from 60 to 40 mg. However, it was under his supervision. He continued to reduce my dosage down to 10. I stayed on 10 for about four weeks and now I'm down to 5mg daily. In addition to that I'm taking 15 mg of mtx weekly.

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To Mvaughn
I am going to 50 on his recommendation.
But, I know from the past, I've been weaned too fast by another doc, which resulted in 2 ER visits for severe withdrawal joint pains. I had to have IV morphine to control the pain and IV solumedrol to stop the withdrawals.
So. you can say that I am hypervigilant and never want to go through that ordeal again.

Thanks For the help and input,
Doreen

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My name is Lee. I used Vitamin E, and Cocoa Butter on my streght marks from the weight gain from Prednisone use. I started in 2001 with 60mg of prednisone, my doctor in 2002 wanted me to reduce my dosage. When I tried I have some severe side effects. Mood swings, paranoia, anxiety, and depression. I found myself hospitalized in a mental health treatment facility in patient, while the worked to get my meds controlled, and addressed my mental health issues. It was a terrible time in my life. I feel faith and the doctors pulled me through. I had thyroid probelms in the past and didn't know having thyroid was another health concern with prednisone use. Has anyone else had such a severe reaction? Lee

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Expecting to have some painful withdrawal from Pred you might be able to set up a plan with your doc to accomodate you doing your own brief 'bump up' dose to save running back to an office visit. Keep your regular appointments, ask for monthly bloodwork to monitor inflammation indicators, keep a journal and adjust the dose by 1.25 to 2.5mg every few weeks once you get to 20 mg, this gives your adrenal glands a chance to get stimulated again into producing their natural cortisol to replace the Pred (cortisone). Too fast a taper could lead to fatal adrenal crisis besides the intolerable pain. The ER will not readily recognize what is going on and precious time will be wasted waiting for Dr. House to make a diagnosis.

Very slow taper is very prudent and usually very successful though it doesn't mean necessarily going to zero - that seems more often successful when on a nonsteroidal drug as well.

Any behavioral or changes in thinking should be addressed immediately. The right med can make the mental side effects normalize, giving more success to the Pred taper and the pain issue. The tools are there, but you have to pick them up and use them to help yourself. Knowledge about your disease and your drugs is the most important of those tools.

Just my two cents,
I.

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Dear Lee;

I had a psychiatrist tell me once that prednisone is a serious drug when it comes to one's brain and can cause some individuals, albeit it very uncommon, to go on permanent "trips" (aka" psychosis).
I have to take antidepressants to control and prevent the mood side effects that you mentioned. I'm surprised that more doctors don't start their patients on meds that can control this from the get go.
I ended up having to wean slower than I was and so far, knock on wood, the main side effect is extra fatigue.
Thanks for Sharing,
Doreen

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Dear Irene:

Yesterday I went to 30 mg. I ended up doing what you suggested and had weaned by 5 mg per week. At my doc's visit recently I told him I was weaning and he was in agreement with you.
The doc wants me to stay at 30mg for now. They are possibly starting me on MTX in a few weeks.
Part of me wants to continue to wean and stop altogether. I've gained 20 pounds of the 22 that I had lost from the GI sarc.
When I start to wean further I'll go with your recommended strategy :)

Thanks,
Doreen

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Hey Doreen C

I myself have been on prednisone for Sarcoid. I was diagnosed at age 22 (in 2007), and put on 20 mg of prednisone for about 3 months. I was breathing great but started experiencing a huge drop in my immune system and some depression. I only weighed about 100 lbs when I was put on the pred. so my pulmonologist didn't want to put me on too much, because of side affects, and the increased risk of prednisone causing osteoporosis especially in small framed people. After 3 months my lungs had improved and the spots were disappearing so he dropped me from 20mg a day to 10 mg a day. The joint and bone pain were terrible. It hurt to walk, but yet I went to work everyday where I am on my feet the whole time. It even hurt for my husband to hug me. Everything hurt so bad. I was on 10 mg for about a 6 weeks... my immune system got even worse in this time. Then instead of dropping me to 5 mg after the 10 he had me take 10 mg every other day. I would experience full body shakes/trembles on the off days, and feel miserable as well as the bone, joint and muscle pain. I would also feel like I was sick with a cold every day I didn't take it. Plus on the prednisone and getting weaned from it I experienced constant urinary tract infections. Everyone I talked to said it was crazy how fast he weaned me from it, because he always just cut my dosage in half. My first pill was taken in Sept. 2007 and my last pill was taken February 28, 2008 IN MY OPINION.... go off VERY SLOWLY... I was miserable getting of it, and suffered after affects for about a year after being fully off because my immune system was so low. As of right now Dec. 2009 my Sarcoid is back, and my pulmonologist wants to wait a few months to see if my sarcoid will go away on its own or not. I am hoping it will, because I DO NOT want to go back on Prednisone again.... I am 24 yrs old now. And ever since I married my husband in summer of 2007... I have been dealing with this stupid Sarcoid. I think I had it for years before my diagnosis, but many docs disregarded my symptoms and misdiagnosed me. Hope you feel better than I did coming off... and again go off SLOWLY!!!

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This is one of the most bothersome aspects of this entire ordeal. I've been trying it seems like forwever to get to 20 mg every other day. My doc took me down to 10 a day from 40 per day within a couple of months and I couldn't function - and couldn't breathe.

I'm not recommending anything so please don't anybody pay too much attention here, but I understand that there's quite a difference in taking these every other day as opposed to every day even if it's the same cumulative dosage. I went from 20 every day to 25 then 15, 27.5 then 12.5, and so on - changing the regimen every three weeks or so until I got to 40 every other day. Then I started backing off slowly and eventually got to 32.5 evey other day. Then I got swine flu, then a bad flare up, and now a lung infection that's been going on for a month. So all bets are off for now, although I'm trying to get back on the program at 35 mg every other day and go from there.

Again, I'm not a dr. and I did this on my own. But I don't think he understands that I just can't wean off these things after all these years as quickly as he directs.

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Hi SarCar,

The thought of going back on anti inflammatory drugs is depressing for all of us, but it is important to limit damage from the disease. With many years ahead of you you may be fortunate enough to have the opportunity to take advantage of break throughs in understanding and treating or curing Sarc.

That said, I hope before your doc puts you back on anti inflammatory meds, he does a complete inflammatory panel of blood work and 24hr. urine calcium for a baseline to compare to while regularly monitoring those values while you are on therapy.

That is how he should decide whether to treat, how to dose and how long to treat (taper when the Sarc becomes inactive according to the testing or objective data). It is common for pulms to treat respiratory Sarc (and there are a few out there who are very good), BUT - it is a MULTI SYSTEM disease in which they do not specialize nor know how monitor properly doing regular blood work and urine testing.

My humble suggestion is consult a rheumatologist this time to manage your Sarc, with INPUT from the pulm. From experience and what I read here, Pulms don't seem to know or care about the subtleties of Pred. (nor do they know or check when inflammation is inactive) no matter how many respiratory diseases they use it for and how much their patients complain, they keep using it the same way for every patient, over and over again. And, it seems they seldom consider combining Pred with other meds which may enhance Sarc treatment. They just don't get it!

The rheumie specializes in inflammatory disease treatment, the meds (and combining meds) and the pain management as well. He would be your health care 'team leader/manager', the one putting the whole picture together WITH all the data and recommendations from the other components (specialists). He would manage you as a WHOLE person with ALL these things going on at once - everything integrated, not just putting out fires by one doc or another (so to speak). The others would be responsible for prescribing meds for specific symptoms other than the Sarc, in specific body locations.

I say this because in the end it all boils down to inactivating the Sarc. They all have different ideas and ways of using Pred. but can't all be writing anti inflamatory prescriptions at the same time keeping in mind all your other areas of involvement, nor are they much interested in what the other specialists have to say, nor what's going on in the rest of your body (it's just not their job) - but the rheumie is AND IT IS HIS JOB. And the PCP should be his back up monitoring, b/p, heart rate, blood glucose, cholesterol, etc.

I guess you can kind of compare it to how the Cleveland or Mayo Clinic does it. You see one 'CAPTAIN' who considers ALL the data from the other specialists in the clinic and HE initiates the treatment.

Hope this makes some sense as I've had a ton of interruptions while writing you.

Good journey,
I.

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I think 5mg at a time is better. 10mg at one time can be to fast. But it seems to be different for everyone. Some don't have any problems. I would try 5mg, and make sure you consult with your doctor if you have any side effects. I dropped to fast and joint pain was the least of my problems. Good luck.

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Hello Doreen C. and everyone else.
I have not been on the site for awhile, because I have been working full time again, including 24 hour shifts once a week, which my Dr's don't want me to do, but I must, as it is expected of me.
Anyway, \Doreen I hope you have tried to go on the MTX. it has really made a difference for me. It takes about 4 months of therapy to really see the change. the day after I take it I am down on the couch, but the rest of the week has been great.
Now back to Prednisone decrease and side effects. Before the Holidays I actually got down to 7.5 mg one day and none the next. then I tried to come down to 6 mg every other day, and BOOM, I ached so badly in every joint that i couldn't cope or work. so I called the Pulmonologist and he said to go back up to 10 mg every day. It worked, now the holidays are over and I'm trying to derease again. I am now down to 5mg every day. I ache but not terribly, except in the middle of the night after being on my feet 16 hurs. Anyway I am now going to decrease byonly 1/2 mg per week. I need to as my bone density is getting worse. Then I wonder is it the Prednisone or do I have sarcoidosis in my joints?????

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Hi M,

I agree with you. Even one mg makes a huge difference. I found that splitting the daily dose into a morning and evening dose helps to decrease some of the withdrawal pain. I am doing the slow decrease on the evening dose for now.
The first wk of a dose decrease causes pain in the long thigh muscles for which I somtimes take Aleve. After enjoying pain free walking for several wks I brave the next decrease. So far, so good.

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