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.

@amkaloha, it's been awhile since you have posted. How is your PMR? Have you been able to taper off of prednisone? You mentioned you were battling lymphedema. I too was diagnosed with lymphedema last year and have to wear 20 to 30 mg compression socks to help with the swelling in my right leg mostly. How is your lymphedema going? Have you found any treatment that helps you?

Hoping we all find something that helps us.

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@johnbishop

Hello @jules11, welcome to Mayo Clinic Connect. I'm glad you found us. My PMR is currently in remission. I've had two occurrences of PMR. My first was in 2007 and it took me until 2010 to taper off of prednisone. I also started at 20 mg dosage. The last six months or so I was going back and forth between 1 mg and 1/2 mg dose until I was finally able to stop taking prednisone. The PMR stayed in remission for 6 years and when it came back I was able to taper off in about a year and a half. The key for me was to keep doing some form of exercise even if it hurt a little but not overdoing it. Also, being flexible with the tapering schedule – there's no magic formula. Each of us are a little different. I worked with my rheumatologist on a couple of different tapering schedules until I found out something that worked for me to taper off.

The biggest impact prednisone had on me the first time around was weight gain. I was prepared for this the second time around and made some lifestyle and diet changes to help with the weight gain. I was able to keep the gain under 5 to 10 pounds but it was a challenge. Prednisone really is the miracle drug for PMR but you don't want to be on it for a long time…lots of bad side effects.

It may be too early to tell but have you experienced any side effects?

John

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No, not yet. I do feel tired and a bit “disconnected”, but that might just be Christmas and all that comes with a big family at this time of year. I feel confident at the moment, that I might be able to get down to 10mg without too much trouble. From what I have read, it seems to be most difficult from there.

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@jules11

Hi, I am new to this discussion group. I have just had a tentative diagnosis of PMR, after lots of tests, discussions with my GP and a positive response to prednisone. I have an appointment with a rheumatologist in January, and my GP wants me to continue at 20mg for another week, making this 3 weeks, and then reduce by 2.5 mga until I see the specialist on the 10th. Prednisone has taken away all my symptoms, I am completely pain free, and so now desperate to reduce my dose down from 20 mg. Today, a week earlier than the GP said, I reduced by 2.5 and I am feeling fine. It’s just one day and I will hope that it continues. It’s great to have this forum. I am in Australia.

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jules11. I was on prednisone for another reason. I encourage you to take your time with your taper. Your body will thank you for giving it time to respond to the changing dosage.

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@jules11

No, not yet. I do feel tired and a bit “disconnected”, but that might just be Christmas and all that comes with a big family at this time of year. I feel confident at the moment, that I might be able to get down to 10mg without too much trouble. From what I have read, it seems to be most difficult from there.

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@jules11 I also get disconnected a bit through the holidays with all that is going on with family and friends and trying to stay on top of it. For me it's probably due to my age (☺ older than dirt). Good luck with the tapering. One of the things that has helped me was to live with a little pain during the taper and to not jump back up to the previous dosage if I wasn't absolutely pain free. I think it got harder for me when I got between 10 mg and 5 mg. I went to using 1 mg pills so I could go down by one when necessary. I also got good at splitting the 1 mg pill when I had trouble going between 1 mg and off.

Good luck! Hopefully your PMR will go into remission sooner than later.

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@johnbishop

@jules11 I also get disconnected a bit through the holidays with all that is going on with family and friends and trying to stay on top of it. For me it's probably due to my age (☺ older than dirt). Good luck with the tapering. One of the things that has helped me was to live with a little pain during the taper and to not jump back up to the previous dosage if I wasn't absolutely pain free. I think it got harder for me when I got between 10 mg and 5 mg. I went to using 1 mg pills so I could go down by one when necessary. I also got good at splitting the 1 mg pill when I had trouble going between 1 mg and off.

Good luck! Hopefully your PMR will go into remission sooner than later.

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John, I went even a step beyond what you did: When I was comfortable with the daily dosage of half 1mg tablets, I began to skip 1 day,
then 2 days, 3 days…… by spreading out I eventually phased it out completely. I add that in my history, I was also dealing with asthma symptoms that were triggered by the dose reductions thus my creativity.
@jules11, the every other day was suggested by my PCP when I was struggling with my taper. I had been taking 10 mg for 5-6 years for my organ transplant and this worked for me, but took me a while to do it.
I am thinking of you.

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@rosemarya

John, I went even a step beyond what you did: When I was comfortable with the daily dosage of half 1mg tablets, I began to skip 1 day,
then 2 days, 3 days…… by spreading out I eventually phased it out completely. I add that in my history, I was also dealing with asthma symptoms that were triggered by the dose reductions thus my creativity.
@jules11, the every other day was suggested by my PCP when I was struggling with my taper. I had been taking 10 mg for 5-6 years for my organ transplant and this worked for me, but took me a while to do it.
I am thinking of you.

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Rosemary @rosemarya that's a very good tip. Thank you for sharing.

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@jules11

Hi, I am new to this discussion group. I have just had a tentative diagnosis of PMR, after lots of tests, discussions with my GP and a positive response to prednisone. I have an appointment with a rheumatologist in January, and my GP wants me to continue at 20mg for another week, making this 3 weeks, and then reduce by 2.5 mga until I see the specialist on the 10th. Prednisone has taken away all my symptoms, I am completely pain free, and so now desperate to reduce my dose down from 20 mg. Today, a week earlier than the GP said, I reduced by 2.5 and I am feeling fine. It’s just one day and I will hope that it continues. It’s great to have this forum. I am in Australia.

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Thank you to @johnbishop, @rosemarya, and @hopeful33250 for you comments. I feel really pleased to have found you, and to have a place where I can check in for reassurance, all the way from Perth, Australia. I’ll stay in touch.

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@jules11

Thank you to @johnbishop, @rosemarya, and @hopeful33250 for you comments. I feel really pleased to have found you, and to have a place where I can check in for reassurance, all the way from Perth, Australia. I’ll stay in touch.

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Hello again, just checking to give an update and see how others are going. Last time I spoke, I was about to reduce my 20mg dose of prednisone down to 17.5. I did that with success for a week, so ventured on to reduce to 15mg. I have now been on that since New Year’s Day. I am feeling well and pain free. I have my first rheumatologist appointment on Thursday 10th Jan, and she will tell me how to progress. I am tempted to reduce again tomorrow to 12.5mgs, as it has been a week. No bad effects, I am feeling good. What do you think about my plan?

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@jules11

Hello again, just checking to give an update and see how others are going. Last time I spoke, I was about to reduce my 20mg dose of prednisone down to 17.5. I did that with success for a week, so ventured on to reduce to 15mg. I have now been on that since New Year’s Day. I am feeling well and pain free. I have my first rheumatologist appointment on Thursday 10th Jan, and she will tell me how to progress. I am tempted to reduce again tomorrow to 12.5mgs, as it has been a week. No bad effects, I am feeling good. What do you think about my plan?

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Hi @jules11, I'm glad to hear the tapering off of prednisone is going well. I'm not a doctor and have no medical training but you are doing exactly what I did. Sometimes I was successful and sometimes not so much. Each of us are a little different when it comes to tapering off of prednisone, so if you can go down another 2.5 mg after a week of no pain I would say go for it. Worse case is you will need to bump it up a little. The only caution I would have is to not get to excited about getting off prednisone too quickly. Your body will tell you when it's too much too quick. We just have to listen closely ☺

Hope you have a pain free day!

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@johnbishop

Hi @jules11, I'm glad to hear the tapering off of prednisone is going well. I'm not a doctor and have no medical training but you are doing exactly what I did. Sometimes I was successful and sometimes not so much. Each of us are a little different when it comes to tapering off of prednisone, so if you can go down another 2.5 mg after a week of no pain I would say go for it. Worse case is you will need to bump it up a little. The only caution I would have is to not get to excited about getting off prednisone too quickly. Your body will tell you when it's too much too quick. We just have to listen closely ☺

Hope you have a pain free day!

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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 Rex @rexbeer, welcome to Mayo Clinic Connect. Prednisone is that magic pill for arthritis. I have polymyalgia rheumatica (PMR) which is currently in remission. I have had two occurrences of PMR six years apart. Both were treated starting with 20 mg prednisone dosage. The first time it took me about 3 years to taper off of prednisone. The second occurrence it took me about 1-1/2 years to taper off. The biggest side effect I had was weight gain – about 50+ pounds the first time but knowing that the second time I was able to make some lifestyle changes that helped me control the weight gain. I was able to keep it between 5 and 10 pounds. Mayo Clinic has some information here:

Prednisone and other corticosteroids
https://www.mayoclinic.org/steroids/art-20045692

Two of the long term effects I already have but I'm not sure if the two uses of prednisone were to blame – thin bones (osteoperosis) and thin skin. I'm forever bumping into things with my arms and surprised to see a trickle of blood or a wound and I never even felt what caused it. I had figured it was part of my aging at 75. I think it might depend on if you are in a high risk group but I'm not sure. I did find a study that talks to this point a little…

Monitoring long-term oral corticosteroids | BMJ Open Quality
https://bmjopenquality.bmj.com/content/6/2/e000209

Have you asked your doctor what they think about any long term side effects that might apply to you?

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Try advil or excedrin without aspirin .

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@johnbishop

Hi Rex @rexbeer, welcome to Mayo Clinic Connect. Prednisone is that magic pill for arthritis. I have polymyalgia rheumatica (PMR) which is currently in remission. I have had two occurrences of PMR six years apart. Both were treated starting with 20 mg prednisone dosage. The first time it took me about 3 years to taper off of prednisone. The second occurrence it took me about 1-1/2 years to taper off. The biggest side effect I had was weight gain – about 50+ pounds the first time but knowing that the second time I was able to make some lifestyle changes that helped me control the weight gain. I was able to keep it between 5 and 10 pounds. Mayo Clinic has some information here:

Prednisone and other corticosteroids
https://www.mayoclinic.org/steroids/art-20045692

Two of the long term effects I already have but I'm not sure if the two uses of prednisone were to blame – thin bones (osteoperosis) and thin skin. I'm forever bumping into things with my arms and surprised to see a trickle of blood or a wound and I never even felt what caused it. I had figured it was part of my aging at 75. I think it might depend on if you are in a high risk group but I'm not sure. I did find a study that talks to this point a little…

Monitoring long-term oral corticosteroids | BMJ Open Quality
https://bmjopenquality.bmj.com/content/6/2/e000209

Have you asked your doctor what they think about any long term side effects that might apply to you?

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John that was a helpful post or three. I've only just found the forum. I suffer from HUVS but seem to be in remission. After taking Prednisone for over 10 years I suffer from thin skin (cataracts and glaucoma as well of course). I've just about got down to 5mg after 4 months. I'm interested to know if my skin will recover?

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@rolph

John that was a helpful post or three. I've only just found the forum. I suffer from HUVS but seem to be in remission. After taking Prednisone for over 10 years I suffer from thin skin (cataracts and glaucoma as well of course). I've just about got down to 5mg after 4 months. I'm interested to know if my skin will recover?

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Thank you @rolph. Welcome to Mayo Clinic Connect. I had not heard of Hypocomplementemic urticarial vasculitis syndrome (HUVS) but did find some information about it:

Hypocomplementemic urticarial vasculitis
https://rarediseases.info.nih.gov/diseases/6725/hypocomplementemic-urticarial-vasculitis

You ask a really good question on whether or not the skin will recover. I'm sure it's different for each of us. I have no medical training or background but I think more and more that it also has to do with aging so if you are fairly young I would think chances are better. I'm an old codger so I just try and take it one day at a time and do what I can to keep it from getting worse. One of the things I try to do to help with the thin skin problem is keep the skin well hydrated with a good skin lotion or creme. Mayo Clinic has some good tips here to consider:

https://www.mayoclinic.org/healthy-lifestyle/healthy-aging/expert-answers/thin-skin/faq-20057753

Hoping some others will chime in with their suggestions.

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@johnbishop

Thank you @rolph. Welcome to Mayo Clinic Connect. I had not heard of Hypocomplementemic urticarial vasculitis syndrome (HUVS) but did find some information about it:

Hypocomplementemic urticarial vasculitis
https://rarediseases.info.nih.gov/diseases/6725/hypocomplementemic-urticarial-vasculitis

You ask a really good question on whether or not the skin will recover. I'm sure it's different for each of us. I have no medical training or background but I think more and more that it also has to do with aging so if you are fairly young I would think chances are better. I'm an old codger so I just try and take it one day at a time and do what I can to keep it from getting worse. One of the things I try to do to help with the thin skin problem is keep the skin well hydrated with a good skin lotion or creme. Mayo Clinic has some good tips here to consider:

https://www.mayoclinic.org/healthy-lifestyle/healthy-aging/expert-answers/thin-skin/faq-20057753

Hoping some others will chime in with their suggestions.

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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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