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.

tillysam | @tillysam | Jun 24, 2022

I think you are tapering too fast.

REPLY
juneh | @juneh | Jun 24, 2022
In reply to @biblern "I’ve been on Prednisone for at least ten years for PMR. I’ve spent most of the..." + (show)
@biblern

I’ve been on Prednisone for at least ten years for PMR. I’ve spent most of the last 3-4 years on 3 mg/day. When I’ve gone below 3, my symptoms come back with a vengeance, & I go back to 5 & slowly taper back to 3. I’m 86-years old & expect to be on Prednisone for the rest of my life. All my health checkups, blood tests, etc. are within normal range. My most annoying symptom of long term Prenisone use is very thin skin, easy bruising, & what seems to be permanent discoloration in my lower legs. Otherwise, I feel fine & live an active life (for an 86-year-old, I guess 😊.)

Jump to this post

Thank you so much for this info! It’s comforting to know that you’ve had few side effects after such a long time. I’ve noticed some discoloration in my legs and hadn’t connected it to the prednisone (red splotchy areas). Thanks again!

REPLY
tillysam | @tillysam | Jun 24, 2022
In reply to @juneh "Hi …I agree that tapering too fast can cause pain. I’ve been on prednisone since last..." + (show)
@juneh

Hi …I agree that tapering too fast can cause pain. I’ve been on prednisone since last September —long story. After some trial and error about how to taper and good advice here, I came up with a system that is working for me. No pain. However, it takes me about 3 weeks to ramp down one mg. It’s gonna be at least a year before I can totally get off prednisone at this rate. Right now I am ramping down to 12 mg (down from 20 a few months ago). I’m worried about being on prednisone so long but don’t want the pain to come back. Just wondering if others were on prednisone so long. Thanks!!!

Jump to this post

I agree with your method of tapering. I am doing that, too.

REPLY
tillysam | @tillysam | Jun 24, 2022
In reply to @suetex "Thank you for your input. I wish my dr. seemed even a little bit that approachable..." + (show)
@suetex

Thank you for your input. I wish my dr. seemed even a little bit that approachable to allow me to set my own pace. When I was doing well, he seemed very content to give me just a few minutes-which was all I needed. Now, things have changed, but he hasn't. When I see him next, I will be very forward and see how he handles it. If he has only one way of handling this disease then he isn't the doctor for me. I think keeping a pain log is a good idea.

Jump to this post

It is very important for you to remind your doctor of what is good for you. It took my rheumatologist 2 years to finally realize that I am different from most patients. And now he listens very carefully to me.

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Jun 24, 2022
In reply to @biblern "I’ve been on Prednisone for at least ten years for PMR. I’ve spent most of the..." + (show)
@biblern

I’ve been on Prednisone for at least ten years for PMR. I’ve spent most of the last 3-4 years on 3 mg/day. When I’ve gone below 3, my symptoms come back with a vengeance, & I go back to 5 & slowly taper back to 3. I’m 86-years old & expect to be on Prednisone for the rest of my life. All my health checkups, blood tests, etc. are within normal range. My most annoying symptom of long term Prenisone use is very thin skin, easy bruising, & what seems to be permanent discoloration in my lower legs. Otherwise, I feel fine & live an active life (for an 86-year-old, I guess 😊.)

Jump to this post

Hi @biblern, Welcome to Connect Youngster! (from another 79 year old youngster 🙃). It's good that you can be on a lower dose of prednisone. I've had 2 occurrences of PMR and it's currently in remission and I also have very thing skin that bruises easily along with the discoloration in my legs which the doctor told me was edema. I also have lymphedema and have to wear compression socks every day 🙁.

Do you mind sharing how you found Connect, what you were searching for?

REPLY
biblern | @biblern | Jun 24, 2022

I don’t really remember, but I’ve been following it a long time (without commenting 😊—I’m Nancy, BTW). My husband was at Mayo’s in Rochester a couple of months before he died six years ago, & it seems like I’ve been getting health notices from Mayo ever since. I must have seen “PMR” mentioned in a headline somewhere & followed it, since no one I know (other than doctors, & I’m not sure about all of them!!) has ever heard of it. My doctors have also recommended compression socks, & I have a dozen pairs, I suppose, but I struggle so much to get them on that it doesn’t seem worth it—especially, in the summer (I live in Chattanooga & the heat index has regularly been around 107.5 lately). I appreciate the blog more than I can say, & though I’m sorry to hear about others who are suffering, I can literally FEEL THEIR PAIN!! And, in some perverse way, it’s reassuring to know I’m not alone and to hear how others are dealing with this. Thank you!😊

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jun 24, 2022
In reply to @biblern "I don’t really remember, but I’ve been following it a long time (without commenting 😊—I’m Nancy,..." + (show)
@biblern

I don’t really remember, but I’ve been following it a long time (without commenting 😊—I’m Nancy, BTW). My husband was at Mayo’s in Rochester a couple of months before he died six years ago, & it seems like I’ve been getting health notices from Mayo ever since. I must have seen “PMR” mentioned in a headline somewhere & followed it, since no one I know (other than doctors, & I’m not sure about all of them!!) has ever heard of it. My doctors have also recommended compression socks, & I have a dozen pairs, I suppose, but I struggle so much to get them on that it doesn’t seem worth it—especially, in the summer (I live in Chattanooga & the heat index has regularly been around 107.5 lately). I appreciate the blog more than I can say, & though I’m sorry to hear about others who are suffering, I can literally FEEL THEIR PAIN!! And, in some perverse way, it’s reassuring to know I’m not alone and to hear how others are dealing with this. Thank you!😊

Jump to this post

Hi Nancy, I struggled with the compression socks myself and found out that I can order ones with zippers on the side through Amazon and it has made a big difference for me...threw all my old ones away. Now I no longer struggle to put the compression socks on.

REPLY
1 reply
dskellchock | @dskellchock | Jun 24, 2022
In reply to @johnbishop "@dskellchock, I'm wondering if tapering off of prednisone might not be an issue if you are..." + (show)
@johnbishop

@dskellchock, I'm wondering if tapering off of prednisone might not be an issue if you are taking the prednisone for an ear infection vs taking prednisone for PMR or GCA. The reason you taper slowly for PMR or GCA is so that the pain stays under control which it doesn't if you taper too fast. Have you discussed tapering off with your doctor? Also, you can get a prescription for 10, 5, 2.5 and 1 mg tablets so that you don't have to cut the pills in half as much.

Jump to this post

Thank you! Pharmacist said no need to taper for a 10 days consumption period. I just wanted to throw the question "out there" to see if any others had my same question. It has always been in my mind that one never stops steroids "suddenly". Seems that is not always the case. Thank you for your reply, John. Appreciate it!! donna

REPLY
zoe10 | @zoe10 | Jun 25, 2022
In reply to @suetex "I have a complicated situation I would like feed-back on: I started out a little over..." + (show)
@suetex

I have a complicated situation I would like feed-back on: I started out a little over a year ago on 20mg of pred and the relief was immediate and profound. I also have Crohn's and am on 2 grams of sulfasalazine a day. I also take Low Dose Naltrexone, 2 mg a day. At my intake my sed rate was normal and my CRP only a little elevated. But my symptoms were classic and my response to the pred was classic also.
After a time, my Rheumy had me taper and here is the first question: He tapers at 4 mg intervals about a month apart. Looking at everyone else, I see much smaller and longer tapers. Sure enough, I flared about 2 months ago and am at 12 mg now and doing better but not as well as I would like (or was). I have added MSM to my routine so now I am a lot of OTC and perscription anti-inflamatories. My sed rate is still normal and my CRP down to the high normal cutoff for their lab so my doc doesn't think my other pain and stiffness is PMR. Wants me to explore nerve conduction studies for my legs. It takes forever to get those apts. I am having my hip replacement checked just in case. (Done in 2020) I don't want more pred because in have glaucoma and I am pushing as it is. I think he is relying on my labs too much for his decision making. I welcome opinions.

Jump to this post

I’ve heard that when you’re on a higher dose of prednisone you can taper with larger numbers. But when you get to a lower dose (like 10 mg), you need to do what my doctor called a “dead taper” and that it will take me one and a half to two years to get off the 10 mg of prednisone I’m currently taking.
Good luck!

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jun 25, 2022
In reply to @zoe10 "I’ve heard that when you’re on a higher dose of prednisone you can taper with larger..." + (show)
@zoe10

I’ve heard that when you’re on a higher dose of prednisone you can taper with larger numbers. But when you get to a lower dose (like 10 mg), you need to do what my doctor called a “dead taper” and that it will take me one and a half to two years to get off the 10 mg of prednisone I’m currently taking.
Good luck!

Jump to this post

Welcome @zoe10, I started both of my occurrences of PMR at 20 mg prednisone and you are right the tapering between the higher dose and 10 mg was fairly easy and it got tougher and slower between 10 and 0. My first time with PMR it took the last 6 months of 3 and half years to go from 1 mg to 0. I went from 1 to 1/2 back to 1 back to 1/2, etc. until I was finally able to stop taking prednisone with little to no pain. I think the difficult part is that each of us are different which is why my rheumatologist told me to listen to my body when tapering down.

My rheumy suggested that I keep a daily pain and dosage log which really helped me while tapering. Do you keep a daily pain/symptoms log along with the dosage you took that day?

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