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.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

trailrider | @trailrider | Mar 8, 2023

This PMR/GCA thread has been so helpful. Personally I’ve been surprised at how staying active and exercising, even in modest amounts, has helped with the discomfort. During this very gradual weaning off prednisone, when leg weakness and shoulder pain starts creeping back, especially in the mornings, I do some exercises, walk my dogs, and things improve. Now trying Tai Chi as I’ve heard so many positive reports. It’s harder than it looks but that’s a good thing. Keep moving friends. Strength to all. TR

REPLY
alan bruce | @alanbruce | Mar 8, 2023
In reply to @mnmom1 "I have been on 15mg of Prednisone since July for PMR. I get my health care..." + (show)
@mnmom1

I have been on 15mg of Prednisone since July for PMR. I get my health care at Mayo and this was the recommended dose from Mayo.

Because of the prednisone side effects, I have gone to my Dr and am tapering off prednisone. I am at 10 mg at present and will stay at this dose x 1 month and then slowly go down 1mg per month. I will even taper down by 0.5 mg per month if needed. I do have a little more pain but it is manageable. I exercise by walking and or doing arm exercises 30-40 minutes per day, throughout the day.

I am having tachycardia symptoms, fast heart rate, sweating and fatigue which I think was from the prednisone, this is improving with a lower dose of prednisone.

I have decided with my Drs. help that I am tapering off my symptoms and not my labs. Because I have PMR and it is an inflammatory condition, I think my CRPs will always be high, so depending on lab results to taper did not seem to make sense to me in tapering off the prednisone. I do not want to be on prednisone for years. I think the side effects are too much for ME to risk. Everyone reacts differently to prednisone. You may need a higher dose. You must be under an experienced Drs. care when on prednisone! The symptoms I am experiencing from the prednisone are worse than the pain from the PMR so I will manage the pain so I hope this works. We will see.

I went for an eye exam and spoke to my eye Dr. on what to watch for as far as GCA symptoms. That was also very helpful.

I think anyone with PMR needs to see an experienced health care provider that has experience with treating PMR. If they don’t have experience in treating PMR, find someone who does.

Jump to this post

My PMR just happen to start when I was with my wife who was being seen at Mayo Rochester. I got great care there from the emergency room than to Rheumotolgy who put on their protocol which I followed a 100% for about 18 month until I was in remission. That was almost 5 years ago and now my current Rheumatologist says PMR is back. I would love to get a copy of Mayo's protocol to follow again and hopefully it will not take as long. My current PMR is milder than the first time. I too walk a lot but not as much as you but will up to it again.

REPLY
mnmom1 | @mnmom1 | Mar 8, 2023

Motion is “lotion for our joints”. The more you can move your joints, the better it is in overall health for yourself.

REPLY
1 reply
artur | @artur | Mar 8, 2023
In reply to @mnmom1 "Motion is “lotion for our joints”. The more you can move your joints, the better it..." + (show)
@mnmom1

Motion is “lotion for our joints”. The more you can move your joints, the better it is in overall health for yourself.

Jump to this post

I believe I found this pred taper link here on Connect buried somewhere. I personally have not tried it yet but plan to. As soon as this flare disappears. It looks to take a long time but the short cut didn't work either. Has anybody seen this schedule before and does it work?
1 day new dose, 6 days old dose
1 day new dose, 5 days old dose
1 day new dose, 4 days old dose
1 day new dose, 3 days old dose
1 day new dose, 2 days old dose
1 day new dose, 1 day old dose

1 day old dose, 2 days new dose
1 day old dose, 3 days new dose
1 day old dose, 4 days new dose
1 day old dose, 5 days new dose
1 day old dose, 6 days new dose

REPLY
2 replies
aspine | @aspine | Mar 9, 2023
In reply to @redboat "Thanks. It was confirmed in the ER that this is NOT due to Giant Cell Arteritis,..." + (show)
@redboat

Thanks.

It was confirmed in the ER that this is NOT due to Giant Cell Arteritis, based on an MRI of my head, a close physical exam of my head by an experienced ER doctor, a rheumatologist's review of my symptoms, and a large group of blood tests.

I'm now on 60 mg of prednisone, which is near the upper end for GCA. But that's not what I have.

Since mid Jan 2023, there have been 7 blood tests. There have been MRI's of my head, hips, multiple CTs of my body, ultrasound of my heart, multiple physical examinations, 12 hours spent in the ER under close supervision, and much more I do not recall. I know a PET scan has been ordered that I have not yet received. We have pretty good medical facilities in San Francisco.

The diagnosis of PMR was made on Feb 3, 2023.

I am under the care of a rheumatologist, but many other specialist have been consulted in addition to the highly experienced ER doctors.

The doctors agree this is NOT GCA. They characterize it as an extremely severe presentation of PMR that is also unpredictable.

Jump to this post

Well, holy moley!! You've really been through the wringer!! And I know you have good medical facilities in SF. I don't live far from you. But where I am, you practically have to beg anyone to pay attention to you - for anything!! Anyway, I'm sorry to hear what you've been going through. It will be interesting to hear how things progress for you. Yours sounds like a very unusual case! Good luck!

REPLY
aspine | @aspine | Mar 9, 2023
In reply to @artur "I believe I found this pred taper link here on Connect buried somewhere. I personally have..." + (show)
@artur

I believe I found this pred taper link here on Connect buried somewhere. I personally have not tried it yet but plan to. As soon as this flare disappears. It looks to take a long time but the short cut didn't work either. Has anybody seen this schedule before and does it work?
1 day new dose, 6 days old dose
1 day new dose, 5 days old dose
1 day new dose, 4 days old dose
1 day new dose, 3 days old dose
1 day new dose, 2 days old dose
1 day new dose, 1 day old dose

1 day old dose, 2 days new dose
1 day old dose, 3 days new dose
1 day old dose, 4 days new dose
1 day old dose, 5 days new dose
1 day old dose, 6 days new dose

Jump to this post

This is the DSNS taper plan. Considered the gold standard in the UK. Many people swear by it, but for some it doesn't work. Me included. I discovered a flaw at the turnaround. If you lay it out on a calendar - starting on a Sunday. You will find the the week before the turnaround gives you 2 days on the new dose, and then the following week, you get (I think it's) 5 new dose and 2 old dose. That's a big jump for someone who's trying to take it slow. And it caused me problems twice before I figured out what the problem was. If you go on healthunlocked.com/pmrgcauk and go to the FAQ's section - find tapering and look for DL's plans as other options. I have better luck with them. DL stands for Dorset Lady.

REPLY
2 replies
mnmom1 | @mnmom1 | Mar 9, 2023
In reply to @artur "I believe I found this pred taper link here on Connect buried somewhere. I personally have..." + (show)
@artur

I believe I found this pred taper link here on Connect buried somewhere. I personally have not tried it yet but plan to. As soon as this flare disappears. It looks to take a long time but the short cut didn't work either. Has anybody seen this schedule before and does it work?
1 day new dose, 6 days old dose
1 day new dose, 5 days old dose
1 day new dose, 4 days old dose
1 day new dose, 3 days old dose
1 day new dose, 2 days old dose
1 day new dose, 1 day old dose

1 day old dose, 2 days new dose
1 day old dose, 3 days new dose
1 day old dose, 4 days new dose
1 day old dose, 5 days new dose
1 day old dose, 6 days new dose

Jump to this post

Please taper under a Dr who knows how to do this. Tapering to soon, to much can produce unwanted side effects…..

REPLY
artur | @artur | Mar 9, 2023
In reply to @aspine "This is the DSNS taper plan. Considered the gold standard in the UK. Many people swear..." + (show)
@aspine

This is the DSNS taper plan. Considered the gold standard in the UK. Many people swear by it, but for some it doesn't work. Me included. I discovered a flaw at the turnaround. If you lay it out on a calendar - starting on a Sunday. You will find the the week before the turnaround gives you 2 days on the new dose, and then the following week, you get (I think it's) 5 new dose and 2 old dose. That's a big jump for someone who's trying to take it slow. And it caused me problems twice before I figured out what the problem was. If you go on healthunlocked.com/pmrgcauk and go to the FAQ's section - find tapering and look for DL's plans as other options. I have better luck with them. DL stands for Dorset Lady.

Jump to this post

If the jump is to big then reduce the increased dose to suit your body. It is not a follow exactly scheme, it is a guide. What I have found is that PMR is an individual thing. Prednisone works, as much as I hate it, and doctors gave me a starting dose and tell me to adjust it as I need. Doctors don't know how I feel and being in Canada waiting 6 weeks to see a doctor, if I can find one is to long as many will attest.

REPLY
DadCue | @dadcue | Mar 9, 2023
In reply to @aspine "This is the DSNS taper plan. Considered the gold standard in the UK. Many people swear..." + (show)
@aspine

This is the DSNS taper plan. Considered the gold standard in the UK. Many people swear by it, but for some it doesn't work. Me included. I discovered a flaw at the turnaround. If you lay it out on a calendar - starting on a Sunday. You will find the the week before the turnaround gives you 2 days on the new dose, and then the following week, you get (I think it's) 5 new dose and 2 old dose. That's a big jump for someone who's trying to take it slow. And it caused me problems twice before I figured out what the problem was. If you go on healthunlocked.com/pmrgcauk and go to the FAQ's section - find tapering and look for DL's plans as other options. I have better luck with them. DL stands for Dorset Lady.

Jump to this post

DSNS didn't work for me either. I noticed the person who promotes this tapering plan says "it isn't slow if it works." However, that person has been unable to taper off for 14 years. In my opinion, 14 years is an extremely long time to be on prednisone. Apparently DSNS doesn't work for that person.

I would encourage people to try DSNS. You never know what might work for someone. I was a long time prednisone user too and kept trying to taper off prednisone. I felt like I knew how to taper off but I was unable to get off prednisone for 12 years after PMR was diagnosed. My goal was to get off prednisone somehow and I was willing to try anything that my doctor suggested.

My doctor suggested a biologic that wasn't approved to treat PMR . The person who advocates for DSNS said, "prednisone was the only option for PMR."

The biologic worked for me and I was able to taper off prednisone in 7 months after the biologic was started. I have been off prednisone for 3 years. I haven't been able to stop the biologic so I'm not cured. My rheumatologist admits the biologic isn't ideal but probably better than taking prednisone for the rest of my life.

I don't have any significant side effects from the biologic I'm taking. I can't say the same about prednisone because I had many side effects. My worst side effect of long term prednisone use was adrenal insufficiency. People need to be aware of this side effect.

https://www.endocrine-abstracts.org/ea/0056/ea0056p44

I think most doctors are aware of this particular complication of long term prednisone use. I think that is why they want us off prednisone as soon as possible.

REPLY
1 reply
aspine | @aspine | Mar 9, 2023
In reply to @dadcue "DSNS didn't work for me either. I noticed the person who promotes this tapering plan says..." + (show)
@dadcue

DSNS didn't work for me either. I noticed the person who promotes this tapering plan says "it isn't slow if it works." However, that person has been unable to taper off for 14 years. In my opinion, 14 years is an extremely long time to be on prednisone. Apparently DSNS doesn't work for that person.

I would encourage people to try DSNS. You never know what might work for someone. I was a long time prednisone user too and kept trying to taper off prednisone. I felt like I knew how to taper off but I was unable to get off prednisone for 12 years after PMR was diagnosed. My goal was to get off prednisone somehow and I was willing to try anything that my doctor suggested.

My doctor suggested a biologic that wasn't approved to treat PMR . The person who advocates for DSNS said, "prednisone was the only option for PMR."

The biologic worked for me and I was able to taper off prednisone in 7 months after the biologic was started. I have been off prednisone for 3 years. I haven't been able to stop the biologic so I'm not cured. My rheumatologist admits the biologic isn't ideal but probably better than taking prednisone for the rest of my life.

I don't have any significant side effects from the biologic I'm taking. I can't say the same about prednisone because I had many side effects. My worst side effect of long term prednisone use was adrenal insufficiency. People need to be aware of this side effect.

https://www.endocrine-abstracts.org/ea/0056/ea0056p44

I think most doctors are aware of this particular complication of long term prednisone use. I think that is why they want us off prednisone as soon as possible.

Jump to this post

Hi, Dad!
Yes, I agree, people should be encouraged to try the plan. When I used it, both times, I crashed at the turnaround. Couldn't figure it out until I studied my calendar (so I know what dose to take each day). And there it was! A jump from 2 day to 5 days on the new dose! At that point, I jumped over to the DL plan at the corresponding weeks and got through the taper. Of course, anyone can try to adjust these plans. I've tried. Not as easy as it looks. We all have to find our "comfort zone", I guess.

REPLY
View MoreView Less
Please sign in or register to post a reply.