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How Fast to Wean Prednisone?

DoreenC
0 Recommendations

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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Pain Prednisone Sarcoidosis Methotrexate Morphine

10 replies

silvercivic

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.

middie1

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.

kderr6

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

Frisch

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.

DoreenC

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.

DoreenC

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

DoreenC

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

DoreenC

Thanks Frish. I will keep that regime in mind.

Doreen

mvaughn1018

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.

DoreenC

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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Help and information from FSR

Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

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