1. < Polymyalgia Rheumatica (PMR)

Feelings when tapering: My journey

Posted by tiateacake @tiateacake, Jul 8 12:32am

I have been taking Prednisone for 6 weeks now, started on 15mg and massive improvements once on 12.5, walking well, using light weights for training and just feeling brilliant. Started on 10mg last Monday and on the Wednesday I felt a little unwell, put it down to change in weather. My left shoulder started hurting more and by the Sunday I was aware my left hip was saying hello but of course this is nothing like the disabling pain I had at the start of all this. I did read somewhere that it can take a week for the body to get used to a reduction in Prednisone but I also have this feeling my body is just waiting for an excuse to flare up. Pretty sure if I phoned the Dr. a blood test would not show any reason to worry so am I just being paranoid. I also lost my appetite and had to force myself to eat and that is similar to when my PMR was at its worst. I use a tens machine on the shoulder so I can get on with dog walking etc. I guess I just want to know if this is something we have to get used to.

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tiateacake | @tiateacake | Sep 17 8:21am
In reply to @art43 "You did not mention the rate at which you are tapering. Tapering too quickly can produce..." + (show)
@art43

You did not mention the rate at which you are tapering. Tapering too quickly can produce a variety of unwanted side effects.
I am now down to 3, tapering at 0.5 per month. Even at this liw dose, it is taking about a week after dropping a level to get back to feeling “normal”. Good luck.

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A slow taper, 1mg every 6 weeks although I do reduce an extra .5 on week 6. I do seem to feel better later in the day and just relieved I know it will pass.

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Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Sep 17 8:30am
In reply to @tiateacake "Not had any anxiety symptoms with Pred until yesterday. Started the new week on 9mg but..." + (show)
@tiateacake

Not had any anxiety symptoms with Pred until yesterday. Started the new week on 9mg but after a few hours I felt a bit on edge. Cardio day at the gym but had to stop as I did not feel right. One of the women I train with asked if I was okay, I told her I just felt strange. We sat down together and she tried to help me by doing box breathing. After a couple of minutes I realised this was good old fight or flight and controlling my breathing was actually making it worse so chose flight and went home. This morning the anxious feeling started 30 minutes after taking my dose. Blood pressure normal but heart rate is a little higher then normal. Will just do weight training at the gym later and for cardio a few extra dog walks. Hopefully as I have realised this is just a bleep and will pass it will do just that and stop once my body is used to the new dose. Strange though that it has chosen now though.

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Hello @tiateacake - I combined your new discussion with your existing discussion on tapering: "Feelings when tapering" - https://connect.mayoclinic.org/discussion/feelings-when-tapering/. I did this so the members you had already Connected with could see your update and your new symptoms. @joan7, @pmrsuzie and @nancy53 all shared their experiences with tapering and may have thoughts on whether or not they experienced some anxiety while tapering.

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1 reply
glinda47 | @glinda47 | Sep 17 10:23am
In reply to @tiateacake "Not had any anxiety symptoms with Pred until yesterday. Started the new week on 9mg but..." + (show)
@tiateacake

Not had any anxiety symptoms with Pred until yesterday. Started the new week on 9mg but after a few hours I felt a bit on edge. Cardio day at the gym but had to stop as I did not feel right. One of the women I train with asked if I was okay, I told her I just felt strange. We sat down together and she tried to help me by doing box breathing. After a couple of minutes I realised this was good old fight or flight and controlling my breathing was actually making it worse so chose flight and went home. This morning the anxious feeling started 30 minutes after taking my dose. Blood pressure normal but heart rate is a little higher then normal. Will just do weight training at the gym later and for cardio a few extra dog walks. Hopefully as I have realised this is just a bleep and will pass it will do just that and stop once my body is used to the new dose. Strange though that it has chosen now though.

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So sorry. As a long time anx sufferer, I feel you. But you're actually addressing your symptoms the best possible wat by acknowledging them, then going on with whatever it is you're doing.
"Exposure therapy" Sounds like you have it down and as you said, once you get used to this med change, most likely it will fade.
I take it you have not have anx issues in the past before pred.
Best to you!

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joan7 | @joan7 | Sep 17 1:01pm
In reply to @JustinMcClanahan "Hello @tiateacake - I combined your new discussion with your existing discussion on tapering: "Feelings when..." + (show)
@JustinMcClanahan

Hello @tiateacake - I combined your new discussion with your existing discussion on tapering: "Feelings when tapering" - https://connect.mayoclinic.org/discussion/feelings-when-tapering/. I did this so the members you had already Connected with could see your update and your new symptoms. @joan7, @pmrsuzie and @nancy53 all shared their experiences with tapering and may have thoughts on whether or not they experienced some anxiety while tapering.

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No problem, Thanks!

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tiateacake | @tiateacake | Sep 18 4:03am
In reply to @tiateacake "Not had any anxiety symptoms with Pred until yesterday. Started the new week on 9mg but..." + (show)
@tiateacake

Not had any anxiety symptoms with Pred until yesterday. Started the new week on 9mg but after a few hours I felt a bit on edge. Cardio day at the gym but had to stop as I did not feel right. One of the women I train with asked if I was okay, I told her I just felt strange. We sat down together and she tried to help me by doing box breathing. After a couple of minutes I realised this was good old fight or flight and controlling my breathing was actually making it worse so chose flight and went home. This morning the anxious feeling started 30 minutes after taking my dose. Blood pressure normal but heart rate is a little higher then normal. Will just do weight training at the gym later and for cardio a few extra dog walks. Hopefully as I have realised this is just a bleep and will pass it will do just that and stop once my body is used to the new dose. Strange though that it has chosen now though.

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The anxiety side effect stopped completely late afternoon yesterday. This morning I was ready for it. Went back to bed after breakfast and listened to my favourite podcast and just tried to relax. Seemed to help. Cardio day at gym and no way was I giving in this time or so I thought. Managed an hour but definitely no high feeling from a good workout but not much anxiety either. 10 am now and anxious horrible feeling has left the building. If you like podcasts check out Murder They Wrote on BBC sounds, it is brilliant.

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tiateacake | @tiateacake | Sep 18 7:04am
In reply to @tiateacake "Thank you for the very helpful replies to my question about tapering yesterday. Later in the..." + (show)
@tiateacake

Thank you for the very helpful replies to my question about tapering yesterday. Later in the day I noticed my left leg was feeling weak so obviously pelvis was not happy. When I picked up my last lot of Prednisone I was given 56 1mg extra. I even drove to see the person who arranged the prescription which gets made up at a chemist near me. He went off to see the practice nurse I had seen at the start. He returned and still did not tell me if they had made a mistake or if the extra were just in case I needed them. So frustrating. This morning I opened one of the 1mg box so I could add the 1mg to my 10mg dose. I will phone the Dr surgery later and inform them that is what I am doing. You never know I may even get a return phone call. Anyway here is hoping that this puts the PMR back to sleep.

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I was given a load of 1mg extra one month, I took them back to the surgery and questioned it only to be told it was fine. I had to make a phone call appointment to speak to the nurse and I had to wait 2 weeks for that. But she did admit she had made a mistake and they have come in useful when I use the pill cutter on the last week before taper. And my NHS app says I don’t need a new prescription so obviously that has gone wrong, the extras definitely came in handy then.

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leekertrsz | @leekertrsz | Sep 18 11:33am
In reply to @dadcue "I agree with Metz ... that is impressive. Prednisone withdrawal symptoms are caused by "insufficient cortisol."..." + (show)
@dadcue

I agree with Metz ... that is impressive. Prednisone withdrawal symptoms are caused by "insufficient cortisol."

It just occurred to me that insufficient cortisol describes the problem better than "adrenal insufficiency." An actual problem with the adrenal glands doesn't happen very often.

"To help prevent prednisone withdrawal, a person can take the following precautions while using prednisone and during the taper period afterward:
1) stick to the recommended dosage and not take more than the doctor prescribes
2) taper the dose according to the doctor’s instructions
3) avoid suddenly stopping prednisone treatment

When a person first starts decreasing the amount of prednisone, they may experience aching or tiredness. This is common. However, they should contact a doctor if these symptoms do not resolve over 7 days."
https://www.medicalnewstoday.com/articles/322536
-----------------------------------------------
Maybe if more people followed the above guidelines, they would have the success that you are having.

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My pain starts 2-3 am and I’m miserable with no sleep then getting up at 6am for work… I’m tapered to 2 1/2 a day. I need advice please

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1 reply
DadCue | @dadcue | Sep 18 5:56pm
In reply to @leekertrsz "My pain starts 2-3 am and I’m miserable with no sleep then getting up at 6am..." + (show)
@leekertrsz

My pain starts 2-3 am and I’m miserable with no sleep then getting up at 6am for work… I’m tapered to 2 1/2 a day. I need advice please

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Have you ever tried taking a small dose of Prednisone in the evening?

Sometimes 1 mg is enough of an evening dose to get you through the night without the 3 a.m. pain. I'm not giving you medical advice but spitting your dose so you take 2 mg in the morning and 1 mg in the evening has worked for me and other people. Some doctors don't recommend a split dose but it worked for me. Maybe ask your doctor to see what they think.

If you don't have 1 mg tablets maybe your doctor would write a new prescription for you.

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1 reply
leekertrsz | @leekertrsz | Sep 18 8:01pm
In reply to @dadcue "Have you ever tried taking a small dose of Prednisone in the evening? Sometimes 1 mg..." + (show)
@dadcue

Have you ever tried taking a small dose of Prednisone in the evening?

Sometimes 1 mg is enough of an evening dose to get you through the night without the 3 a.m. pain. I'm not giving you medical advice but spitting your dose so you take 2 mg in the morning and 1 mg in the evening has worked for me and other people. Some doctors don't recommend a split dose but it worked for me. Maybe ask your doctor to see what they think.

If you don't have 1 mg tablets maybe your doctor would write a new prescription for you.

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Thank you for your advice… I’m just praying for a good nights sleep and not being woken up at 2:58 AM with severe pain… It’s almost like the 2 1/2 mg is completely worn off by then… I will talk to my doctor… I was diagnosed seven months ago and started on 40 mg daily tapering down to where I am now on 2 1/2… But like I said it wears off by 2 o’clock in the morning and I tossed and turned until I have to get up for work…

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1 reply
DadCue | @dadcue | Sep 18 8:37pm
In reply to @leekertrsz "Thank you for your advice… I’m just praying for a good nights sleep and not being..." + (show)
@leekertrsz

Thank you for your advice… I’m just praying for a good nights sleep and not being woken up at 2:58 AM with severe pain… It’s almost like the 2 1/2 mg is completely worn off by then… I will talk to my doctor… I was diagnosed seven months ago and started on 40 mg daily tapering down to where I am now on 2 1/2… But like I said it wears off by 2 o’clock in the morning and I tossed and turned until I have to get up for work…

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There is no doubt in my mind that the effect of prednisone wears off in less than 24 hours. That isn't your imagination so you are correct. When I was first diagnosed there was no way I could go an entire 24 hours on one dose of prednisone. It made a big difference when I was able to split my dose.
https://www.drugs.com/medical-answers/long-prednisone-stay-patients-system-after-course-3069825/

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