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.

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

DadCue | @dadcue | Jul 9 6:57am
In reply to @papas "I agree with John keeping a log was very helpful when I recently had to deal..." + (show)
@papas

I agree with John keeping a log was very helpful when I recently had to deal with an apparent GCA attack that reduced sight in my left eye. I was put on 48 mg/ day Methyprednisolone. Reviewing my past PMR tapering history was very helpful in discussions with my rheumatologist as we setup a tapering protocol as I continued GCA/PMR journey. Prior to this, I had tapered to 1mg prednisone every other day. I was diagnosed with PMR 9/2021 my log and information from this site along with a great rheumatologist who listens has kept me steady on this journey. Always pay attention to what your body is telling you. While tapering my rheumatologist gave me these points to keep in mind as symptoms may occur and are similar for each:
1. Recurrence of the inflammatory disease (PMR).
2. Steroid withdrawal symptoms (which should be self limited and improve if given enough time, though it may take very slow prednisone tapering).
3. Adrenal insufficiency (because the dose of prednisone is lower than what your body needs to support electrolyte and fluid management).
Good luck on your journey

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This is all good information to know. In regards to adrenal insufficiency the following information about cortisol might be useful.

"Your body continuously monitors your cortisol levels to maintain steady levels (homeostasis). Higher-than-normal or lower-than-normal cortisol levels can be harmful to your health."
https://my.clevelandclinic.org/health/articles/22187-cortisol
-------------------------------------------------------
Prednisone replaces the cortisol the body naturally produces. As you can see cortisol regulates many things in addition to electrolyte and fluid management.

There is no way a daily dose of Prednisone is going to duplicate what cortisol and the HPA axis does. The HPA axis is a complex mechanism that the body has to regulate cortisol levels along with regulating inflammation. The entire system manages many bodily functions which directly impacts how we feel.
https://my.clevelandclinic.org/health/body/hypothalamic-pituitary-adrenal-hpa-axis

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seniormed | @seniormed | Jul 9 7:09am

Consider the effect of an anti inflammatory Mediterranean diet with gluten avoidance. I also rely on turmeric, vitamin D, statins and CoQ10 as immune
modulating supplements. I avoid non steroidals when on prednisone but consider topical diclofenac safe. Inquire about proactive measures like osteoporosis and cardiac risk screening if you need adequate steroid doses
long term. I always take prednisone with food and also calcium antacids at night. Symptom relief is not always correlated with lab results.

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Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Jul 9 9:25am
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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@tiateacake I moved your discussion to your original discussion on tapering so that members could see your thank you message, https://connect.mayoclinic.org/discussion/feelings-when-tapering/.

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lungranger77 | @lungranger77 | Jul 9 11:02am
In reply to @edwardh "My doctor told me to not hesitate to go back up to knock pmr down if..." + (show)
@edwardh

My doctor told me to not hesitate to go back up to knock pmr down if symptoms begin to emerge at a lower dose. There is nothing wrong with adjusting the dose to find where control of pmr is effective.

For many of us pmr can take a year or two to burn out. Perhaps alternating between 12.5 and 10 would be worth a try. Dropping from 15 to 10 in 6 weeks is a pretty aggressive taper.

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Hello @edwardh .
Thanks for your comments. I'm at 17 months now with PMR. Had one major flare last year in September. I've been down to 5mg/day now for almost two months per my doctors plan. Finally settling into the change. The plan now for me is to go down to 4mg/day alternating with 5mg/day. I guess I can understand the strategy; If it doesn't work I stay on 5mg as my lowest, effective dose? If it does work I can drop down to 4mg safely? I've developed a type of security blanket with the Prednisone because it has helped so much with my L4 L5 lower back issues.
we'll see how it goes. If I have to stay at 4mg or 5mg permanently it's ok with me.
Thanks to all of you who have provided such good info which has helped me navigate thru the nuances of PMR. Ernie

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pdxmac | @pdxmac | Jul 9 12:06pm

My daily log also includes exercise the day before, sleep, stress, unusual foods. There are many factors that contribute so it helps to look for patterns.

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joan7 | @joan7 | Jul 9 7:55pm

I was originally on 60mg of Prednisone for possible Giant Cell Arteritis. I found when I was weaning from 10 mg to 7.5 mg was when my pain started to return. However, I also found that the pain was due to the Prednisone withdrawal and NOT THE PMR. This was my weaning experience from 10 mg down to where I am now:

10 mg to 7.5 mg - a lot of pain - had to take 2 Advil - pain went away and never returned (speak to your doctor before taking Advil, may recommend Tylenol instead)
7.5 mg to 5 mg - severe pain - again took 2 Advil - same as above
5 mg to 4 mg - intermittent pain but eventually went away.
4 mg to 3 mg - Intermittent pain and some fatigue that did not go away
3 mg to 3 mg every other day and 2 in between - working out very well. Hardly notice any issues.

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1 reply
DadCue | @dadcue | Jul 9 8:05pm
In reply to @joan7 "I was originally on 60mg of Prednisone for possible Giant Cell Arteritis. I found when I..." + (show)
@joan7

I was originally on 60mg of Prednisone for possible Giant Cell Arteritis. I found when I was weaning from 10 mg to 7.5 mg was when my pain started to return. However, I also found that the pain was due to the Prednisone withdrawal and NOT THE PMR. This was my weaning experience from 10 mg down to where I am now:

10 mg to 7.5 mg - a lot of pain - had to take 2 Advil - pain went away and never returned (speak to your doctor before taking Advil, may recommend Tylenol instead)
7.5 mg to 5 mg - severe pain - again took 2 Advil - same as above
5 mg to 4 mg - intermittent pain but eventually went away.
4 mg to 3 mg - Intermittent pain and some fatigue that did not go away
3 mg to 3 mg every other day and 2 in between - working out very well. Hardly notice any issues.

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What was the time frame for all of this tapering. I took prednisone for 12 years for PMR. When I was finally able to discontinue prednisone, I had to stay on 3 mg for 6 months because my cortisol level was low. An endocrinologist said it "might be safe" to discontinue prednisone after my cortisol level improved.

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2 replies
joan7 | @joan7 | Jul 9 10:10pm
In reply to @dadcue "What was the time frame for all of this tapering. I took prednisone for 12 years..." + (show)
@dadcue

What was the time frame for all of this tapering. I took prednisone for 12 years for PMR. When I was finally able to discontinue prednisone, I had to stay on 3 mg for 6 months because my cortisol level was low. An endocrinologist said it "might be safe" to discontinue prednisone after my cortisol level improved.

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I started the Prednisone at 60 mg in August, 2023 and still weaning to date. I have an appointment July 30th with my regular Rheumatologist. This Friday I have an appointment with my Rheumatologist at UPenn., Perelman Center.

This was my tapering process:

August 2023 - 60 mg
September - 40 mg
October - 30 mg
November - 25 mg
December - 20 mg
January - 15 mg
February - 10 mg
March - 7.5 mg
April - 5 mg
May - 4 mg
June - 3 mg
July - 3 mg every other day with 2 mg in between
August - Rheumatologist may take me down to 2 mg

So if my cortisol level returns to normal, than I may be able to stay off all medications for PMR?

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2 replies
megz | @megz | Jul 10 1:16am
In reply to @joan7 "I started the Prednisone at 60 mg in August, 2023 and still weaning to date. I..." + (show)
@joan7

I started the Prednisone at 60 mg in August, 2023 and still weaning to date. I have an appointment July 30th with my regular Rheumatologist. This Friday I have an appointment with my Rheumatologist at UPenn., Perelman Center.

This was my tapering process:

August 2023 - 60 mg
September - 40 mg
October - 30 mg
November - 25 mg
December - 20 mg
January - 15 mg
February - 10 mg
March - 7.5 mg
April - 5 mg
May - 4 mg
June - 3 mg
July - 3 mg every other day with 2 mg in between
August - Rheumatologist may take me down to 2 mg

So if my cortisol level returns to normal, than I may be able to stay off all medications for PMR?

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You're doing great, Joan. That's an impressive reduction schedule. May things keep going well for you, fingers crossed.

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ncgal | @ncgal | Jul 10 6:50am
In reply to @dadcue "What was the time frame for all of this tapering. I took prednisone for 12 years..." + (show)
@dadcue

What was the time frame for all of this tapering. I took prednisone for 12 years for PMR. When I was finally able to discontinue prednisone, I had to stay on 3 mg for 6 months because my cortisol level was low. An endocrinologist said it "might be safe" to discontinue prednisone after my cortisol level improved.

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Just wondering how long it took your cortisol level to improve. Like you, I just finished Prednisone a few weeks ago after 4 years. I don't have any symptoms of the PMR, no pain, but I am totally exhausted all the time. I'm wondering if it is Prednisone withdrawal. My rheumy said to take a low dose of Prednisone which might help with the exhaustion. I really don't want to do that. So I was wondering if you were given a time limit for the cortisol level to improve. It does get a little better each day, but still not back to normal.

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