1. < Polymyalgia Rheumatica (PMR)

Tapering off of Prednisone

Posted by e @epvb, Mar 27, 2017

I am currently on 20 mg prednisone after tapering down from 40 mg which I was on for 2 weeks. I have been directed to taper down again next week to 10 mg. I am experiencing terrible headaches lasting days at a time as well as neck pain and insomnia. Has anyone found any relief or remedies for headache/neck pain? Thank you.

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Mentor
John, Volunteer Mentor | @johnbishop | Feb 3, 2019
In reply to @rolph "Definitely not young John! But the skin effect is a strange sort of wrinkling. One of..." + (show)
@rolph

Definitely not young John! But the skin effect is a strange sort of wrinkling. One of my nurses father has the same effect so it is primarily down to the Prednisone. Certainly be interested in other experiences. I did read somewhere that a cream containing urea will actually hydrate to some extent, as opposed to most creams which seem only to slow down moisture loss due to the barrier they provide. Can't find the reference though I'm afraid.

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Here's a link to some home remedies that might be helpful...

https://www.everydayhealth.com/skin-and-beauty/natural-skin-remedies.aspx
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sarcoidosis | @sarcoidosis | Mar 6, 2019
In reply to @rexbeer "Hi. Ive just joined this forum. Im 74, man, live in New Zealand. I experience pain..." + (show)
@rexbeer

Hi. Ive just joined this forum. Im 74, man, live in New Zealand. I experience pain from arthritis in a hip and lower back. The pain is ever-present, and been gradually getting worse over about 35 years. My doctor prescribed Prednisone at 2.5mg/day for an allergy (hay fever). I am amazed that it has also reduced the chronic pain, by about 50% - as well as making me feel much more energetic. There are no adverse effects apparent.
So, of course I am thinking how it would improve my life if I could feel like that all the time. This discussion group has been mainly about withdrawing from Prednisone, which is interesting to me. But I would love to hear from anyone who knows about using Prednisone long term, indefinitely, at the very low dose of 2.5mg. Thanks. Rex.

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Hi Rexbeer. I have sarcoidosis a rare autoimmune disease. I come from NZ. My Mother waS aLso from NZ. Her history was arthritis and pain in her hip and lower back, my history at 59 is the same ...the arthritis linked to the disease sarcoidosis. It presents the same. I was on Prednisone at higher doses which gave me osteopenia. I am on 2.5 but now getting off altogether. It did help my pain. There is significant history in our family genes certainly over the last 200 years. Kind regards. Lori

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noosat1 | @noosat1 | Mar 7, 2019
In reply to @hopeful33250 "Hello @epvb and welcome to Mayo Connect. Thanks for posting this discussion on Prednisone. I'm sure..." + (show)
@hopeful33250

Hello @epvb and welcome to Mayo Connect. Thanks for posting this discussion on Prednisone. I'm sure that others will reply in the near future. A few more details might be helpful to our Mayo Community in responding to your post. For example, how long have you been taking the Prednisone and what was it being used for? Please share as you are comfortable. We look forward to getting to know you better! Keep in touch and let us know how you are doing. Teresa

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I am on 5mg, for the last 2 weeks, and plan to go down to 4 to-morrow, however, after reading experiences of other people, I may have to go up again. I am preparing myself, hoping for the best, but will not be devastated by the worst. Some people have had to take the drug for many years. So far I am lucky to have to have endured it for 3.5 months. Good Luck to you !

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Mar 7, 2019
In reply to @noosat1 "I am on 5mg, for the last 2 weeks, and plan to go down to 4..." + (show)
@noosat1

I am on 5mg, for the last 2 weeks, and plan to go down to 4 to-morrow, however, after reading experiences of other people, I may have to go up again. I am preparing myself, hoping for the best, but will not be devastated by the worst. Some people have had to take the drug for many years. So far I am lucky to have to have endured it for 3.5 months. Good Luck to you !

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You have a good attitude and that will be your strength. All of us react differently, so listen to your body because it will let you know if you are tapering too fast. Take your time, and allow your body to adjust itself to the lower dosage.
I hope you reach your goal.

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rogernj67 | @rogernj67 | Mar 7, 2019
In reply to @noosat1 "I am on 5mg, for the last 2 weeks, and plan to go down to 4..." + (show)
@noosat1

I am on 5mg, for the last 2 weeks, and plan to go down to 4 to-morrow, however, after reading experiences of other people, I may have to go up again. I am preparing myself, hoping for the best, but will not be devastated by the worst. Some people have had to take the drug for many years. So far I am lucky to have to have endured it for 3.5 months. Good Luck to you !

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3.5 months and so low a dose already. Do you have some morning pain and stiffness? I do.

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1 reply
noosat1 | @noosat1 | Mar 7, 2019
In reply to @rogernj67 "3.5 months and so low a dose already. Do you have some morning pain and stiffness?..." + (show)
@rogernj67

3.5 months and so low a dose already. Do you have some morning pain and stiffness? I do.

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Yes, I do, also some imbalance. While my coffee is brewing in the French press and the toast browning, I keep moving around. I gradually become more limber. After watching a little of c=span while breakfasting. I get up and move around again, sometimes doing a few flexibility exercises, very mild ones. If I sit too long I become stiff again, so must monitor that. To-morrow I am going down to 4 mg of prednisone. Hopefully it will work. 🙂

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1 reply
rogernj67 | @rogernj67 | Mar 7, 2019
In reply to @noosat1 "Yes, I do, also some imbalance. While my coffee is brewing in the French press and..." + (show)
@noosat1

Yes, I do, also some imbalance. While my coffee is brewing in the French press and the toast browning, I keep moving around. I gradually become more limber. After watching a little of c=span while breakfasting. I get up and move around again, sometimes doing a few flexibility exercises, very mild ones. If I sit too long I become stiff again, so must monitor that. To-morrow I am going down to 4 mg of prednisone. Hopefully it will work. 🙂

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i Have that imbalance feeling, too. Don’t know why.. Well, hope the 4 mg works. You might be setting a record for getting there so fast. Lol

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grammlyn | @grammlyn | Mar 11, 2019
In reply to @rosemarya "@epvb, I also want to welcome you to Mayo Connect. As of Dec.9, 2016, I am..." + (show)
@rosemarya

@epvb, I also want to welcome you to Mayo Connect. As of Dec.9, 2016, I am successfully off prednisone!! So I am going to tell you in all honesty, "I feel your pain".
I was on 5 mg daily for 7 years. In April I was tapered to half dose (2.5 mg) and my body was aarghhh! - achy, nausea, poor sleep, tired, grouchy, headaches. This surprised me because of the small dosage. After about 10 days I experiences a slight improvement. And after a month I was feeling okay. I did take some Tylenol to relieve the discomfort.
Then, when I was tapered to 0 mg, the symptoms returned:-( But at that time some other medical issues complicated things for me, and I was instructed to resume the 2.5 mg dosage. Finally in early Nov.2016, I was ready to taper again. This time I was advised to try the every other day approach. This worked well for me. After 6 weeks I quit completely.
I think that some people might just need longer for their body to adjust. You might want to talk to your doctor. I want to say that my taper was done with my medical team approval, and my routine labs were carried out to monitor my particular health concerns.

Here is what Mayo Clinic has to say about coming off prednisone.
http://www.mayoclinic.org/prednisone-withdrawal/expert-answers/faq-20057923

I hope I have been able to give you some answers. Let me know how you are doing.
Rosemary

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Rosemary: That was wonderful advice you gave epvb. Thank you so much as it helps me also. And I am sure others. My heart goes out to all other suffers of Autoimmune illness.

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1 reply
jules11 | @jules11 | Mar 11, 2019
In reply to @grammlyn "Rosemary: That was wonderful advice you gave epvb. Thank you so much as it helps me..." + (show)
@grammlyn

Rosemary: That was wonderful advice you gave epvb. Thank you so much as it helps me also. And I am sure others. My heart goes out to all other suffers of Autoimmune illness.

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Rosemary’s post was so helpful and gives hope. I’m tapering down from 20mg ... over three months I am now at 8mgs. Told the rheumatologist that I wanted to hasten the tapering and she said OK, fortnightly until you reach 7mg, which will be next Tuesday. After that she wants me to go four weekly tapering, 1mg at a time. Just wondering what Rosemary’s condition was, are we talking PMR, which is my condition.

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1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Mar 11, 2019
In reply to @jules11 "Rosemary’s post was so helpful and gives hope. I’m tapering down from 20mg ... over three..." + (show)
@jules11

Rosemary’s post was so helpful and gives hope. I’m tapering down from 20mg ... over three months I am now at 8mgs. Told the rheumatologist that I wanted to hasten the tapering and she said OK, fortnightly until you reach 7mg, which will be next Tuesday. After that she wants me to go four weekly tapering, 1mg at a time. Just wondering what Rosemary’s condition was, are we talking PMR, which is my condition.

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@jules11, I do not have PMR. I took prednisone (5 mg) after organ transplant for around 6 years. I was surprised that even at that small dose that I felt side effects. I do not know what the effects are or if they might be different due to PMR. I do not know what your individual tapering will be like, I only intended to share how I managed my taper.
I did experience pain, headaches, stiffness, tiredness. But because I understood the reason for those discomforts, I was able to accept the temporary discomfort. I also found out that the prednisone must have been masking a kind of asthma that occurs during activity and humid weather. But I have that under control now.
Sending you strength and patience.

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