1. < Polymyalgia Rheumatica (PMR)

PMR and Fatigue. Interesting study

Posted by tuckerp @tuckerp, Sep 24 12:33pm

Lots of threads on here to the question of fatigue. I know I suffer from it. It is well documented that steroids can cause fatigue especially as you taper due to lack of cortisol or the lack of your adrenals producing enough of it.
"If you abruptly stop taking prednisone or taper off too quickly, you may experience withdrawal symptoms, including:
Severe fatigue
Weakness
Body aches
Joint pain
Nausea
Loss of appetite
Lightheadedness
Irritability or mood swings
https://www.mayoclinic.org/prednisone-withdrawal/expert-answers/faq-20057923#:~:text=If%20you%20abruptly%20stop%20taking,Body%20aches
But as with any inflammatory disease associated pain and fatigue is common. Like having the flu. Just seems to be under-recognized with PMR. Of course we know that. Here is a recent study on fatigue associated with PMR. Seems we get it from the disease and from the treatment.
This is a quote "Fatigue is common in inflammatory conditions, but under-recognized in PMR. Fatigue severity at the time of diagnosis appears indicative of fatigue levels up to five years later and is associated with a broad range of health constructs at diagnosis and later." https://academic.oup.com/rheumatology/article/63/Supplement_1/keae163.226/7656165

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

DadCue | @dadcue | Sep 24 2:08pm

Fatigue is hard to define let alone quantify.

My recollection when I was first diagnosed with PMR wasn't fatigue in the usual sense of "being tired or sleepy." I wasn't sleeping too well because of pain but I can't say the lack of sleep made me tired. I was wide awake because that's what pain does to me.

After starting Prednisone I had energy to spare. I liked the energized feeling. I didn't care that I wasn't sleeping because I could find many things to do. I was very hyperactive and probably euphoric because I felt like I didn't have any need for sleep.

No need for sleep came to a halt after a couple of weeks. Sleep deprivation has a way of taking hold eventually and a person can sleep through anything. I slept for two days straight! I think sleep deprivation compounded my precarious health status but eventually everything stabilized.

One of my first fatigue related symptoms after things stabilized was "exercise intolerance." However, it wasn't like exercise made me tired. Rather, minimal activity made me short of breath. I couldn't walk up a slight incline without getting winded and I needed to stop and rest in order to catch my breath. This was my very first symptom I complained about. I told my primary care doctor. My primary care doctor ordered an exercise tolerance test but it was "normal" but I knew it wasn't normal for me.

My exercise "intolerance" progressed. I was in the middle of a 50 mile bicycle ride when I hit the proverbial wall. I didn't really care where -- I just needed to rest and the ditch with tall grass and critters everywhere was as good of a place as any. I hardly had any energy but I managed to check my pulse. My pulse was irregular so I thought that was strange. I told my primary care doctor about the incident and he thought it warranted an EKG. The EKG revealed a heart arrhythmia and left ventricular hypertrophy (LVH) . A random blood pressure check caught a blood pressure of 210/110 a few days later.

Hypertension (high blood pressure) is the most common cause of left ventricular hypertrophy (LVH), a condition in which the heart's left pumping chamber thickens and may not pump efficiently. A cardiologist placed the blame squarely on prednisone.

A year or so later, I was getting used to being short of breath. I told my story about having an ambulance called for me because I felt "slightly more short of breath than my usual." That incident culminated in being admitted to intensive care with an extensive, multiple and bilateral pulmonary embolisms.

I have to hold prednisone responsible for all the above. Since coming off prednisone I was able to discontinue 3 blood pressure medications. I also discontinued warfarin which I was supposed to take for the rest of my life. All my cardiovascular problems have resolved since stopping prednisone.

After my cortisol level improved, the "overwhelming fatigue" also improved. I don't think PMR caused me to have too much fatigue but Prednisone sure did.

REPLY
3 replies
jlo2252 | @jlo2252 | Sep 25 8:24am
In reply to @dadcue "Fatigue is hard to define let alone quantify. My recollection when I was first diagnosed with..." + (show)
@dadcue

Fatigue is hard to define let alone quantify.

My recollection when I was first diagnosed with PMR wasn't fatigue in the usual sense of "being tired or sleepy." I wasn't sleeping too well because of pain but I can't say the lack of sleep made me tired. I was wide awake because that's what pain does to me.

After starting Prednisone I had energy to spare. I liked the energized feeling. I didn't care that I wasn't sleeping because I could find many things to do. I was very hyperactive and probably euphoric because I felt like I didn't have any need for sleep.

No need for sleep came to a halt after a couple of weeks. Sleep deprivation has a way of taking hold eventually and a person can sleep through anything. I slept for two days straight! I think sleep deprivation compounded my precarious health status but eventually everything stabilized.

One of my first fatigue related symptoms after things stabilized was "exercise intolerance." However, it wasn't like exercise made me tired. Rather, minimal activity made me short of breath. I couldn't walk up a slight incline without getting winded and I needed to stop and rest in order to catch my breath. This was my very first symptom I complained about. I told my primary care doctor. My primary care doctor ordered an exercise tolerance test but it was "normal" but I knew it wasn't normal for me.

My exercise "intolerance" progressed. I was in the middle of a 50 mile bicycle ride when I hit the proverbial wall. I didn't really care where -- I just needed to rest and the ditch with tall grass and critters everywhere was as good of a place as any. I hardly had any energy but I managed to check my pulse. My pulse was irregular so I thought that was strange. I told my primary care doctor about the incident and he thought it warranted an EKG. The EKG revealed a heart arrhythmia and left ventricular hypertrophy (LVH) . A random blood pressure check caught a blood pressure of 210/110 a few days later.

Hypertension (high blood pressure) is the most common cause of left ventricular hypertrophy (LVH), a condition in which the heart's left pumping chamber thickens and may not pump efficiently. A cardiologist placed the blame squarely on prednisone.

A year or so later, I was getting used to being short of breath. I told my story about having an ambulance called for me because I felt "slightly more short of breath than my usual." That incident culminated in being admitted to intensive care with an extensive, multiple and bilateral pulmonary embolisms.

I have to hold prednisone responsible for all the above. Since coming off prednisone I was able to discontinue 3 blood pressure medications. I also discontinued warfarin which I was supposed to take for the rest of my life. All my cardiovascular problems have resolved since stopping prednisone.

After my cortisol level improved, the "overwhelming fatigue" also improved. I don't think PMR caused me to have too much fatigue but Prednisone sure did.

Jump to this post

@dadcue
@tuckerp
OMG, you guys read my mind, lol. I was just thinking of what I feel is extreme fatigue that i was having and the cause of it.
I recently got “bumped” up to a “respiratory “taper of prednisone for this stubborn case of bronchitis I’ve been dealing with. Well, it did what it was supposed to do and I coughed up a lot of junk in my lungs! They wanted to do a 60/40/20mg taper, 3 days on each dose, total of 9 days (temp. dc’d my 7.5 mg for PMR). Because of my diabetes I did a 40/30/20/10 mg taper cause it brought the dose close to my 7.5 mg. dose which I restarted at the end of my 10 mg taper. Did not experience the usual prednisone”euphoria “ or even a bump in energy!
Just a lot of fatigue. I did have a little increase in thigh pain while walking in store parking lots, though. I’m now starting to feel a little more like my “normal” PMR fatigue…..not as bad as it was on the higher dose of prednisone, which doesn’t make any sense to me. Looks like prednisone is the culprit to me!!
Your thoughts??
Thanks in advance

REPLY
rosemargaret | @rosemargaret | Sep 25 10:20am
In reply to @dadcue "Fatigue is hard to define let alone quantify. My recollection when I was first diagnosed with..." + (show)
@dadcue

Fatigue is hard to define let alone quantify.

My recollection when I was first diagnosed with PMR wasn't fatigue in the usual sense of "being tired or sleepy." I wasn't sleeping too well because of pain but I can't say the lack of sleep made me tired. I was wide awake because that's what pain does to me.

After starting Prednisone I had energy to spare. I liked the energized feeling. I didn't care that I wasn't sleeping because I could find many things to do. I was very hyperactive and probably euphoric because I felt like I didn't have any need for sleep.

No need for sleep came to a halt after a couple of weeks. Sleep deprivation has a way of taking hold eventually and a person can sleep through anything. I slept for two days straight! I think sleep deprivation compounded my precarious health status but eventually everything stabilized.

One of my first fatigue related symptoms after things stabilized was "exercise intolerance." However, it wasn't like exercise made me tired. Rather, minimal activity made me short of breath. I couldn't walk up a slight incline without getting winded and I needed to stop and rest in order to catch my breath. This was my very first symptom I complained about. I told my primary care doctor. My primary care doctor ordered an exercise tolerance test but it was "normal" but I knew it wasn't normal for me.

My exercise "intolerance" progressed. I was in the middle of a 50 mile bicycle ride when I hit the proverbial wall. I didn't really care where -- I just needed to rest and the ditch with tall grass and critters everywhere was as good of a place as any. I hardly had any energy but I managed to check my pulse. My pulse was irregular so I thought that was strange. I told my primary care doctor about the incident and he thought it warranted an EKG. The EKG revealed a heart arrhythmia and left ventricular hypertrophy (LVH) . A random blood pressure check caught a blood pressure of 210/110 a few days later.

Hypertension (high blood pressure) is the most common cause of left ventricular hypertrophy (LVH), a condition in which the heart's left pumping chamber thickens and may not pump efficiently. A cardiologist placed the blame squarely on prednisone.

A year or so later, I was getting used to being short of breath. I told my story about having an ambulance called for me because I felt "slightly more short of breath than my usual." That incident culminated in being admitted to intensive care with an extensive, multiple and bilateral pulmonary embolisms.

I have to hold prednisone responsible for all the above. Since coming off prednisone I was able to discontinue 3 blood pressure medications. I also discontinued warfarin which I was supposed to take for the rest of my life. All my cardiovascular problems have resolved since stopping prednisone.

After my cortisol level improved, the "overwhelming fatigue" also improved. I don't think PMR caused me to have too much fatigue but Prednisone sure did.

Jump to this post

I totally agree with Prednisone being the culprit in PMR and also other serious health issues. It certainly gives a quick fix but the end result is years of trying to get off it and being tested for further organ or bone damage.

REPLY
1 reply
lungranger77 | @lungranger77 | Sep 25 11:42am

Thanks for the reminders. Wish it wasn't so. It's like a menu that I don't want to choose from that's assigned never the less. Lately trying to stay on the positive side of it all. Frustrating at times. Tapering now at 4mg/day alternating with 5mg. Fatigue usually sets in for a few days after a month on the new dose. Hopefully will go to 4mg without alternating another dose for Oct.-Nov. Sticking with my M.D.'s plan. 19 months now with PMR. My withdrawal symptoms seem to settle down after a month on the new dose. My first and only flare up came at 8 months tapering at 30 days dropping from 6mg to 5mg. For me, staying closer to 2 months at each lower dose below 10mg seems to be working.

Something new I've noticed is a hypersensitivity to household cleaning agents, paint etc. My eyes took a terrible hit from Pine Sol fumes. Ok now but for three days it felt like I had Vicks Menthol in them. Agitation and irritability went to a 10. The head aches made me think that GCA was now on the menu.

The good news is that I feel hopeful about progress. And grateful for the rest of me that's working well.
Wishing you all the best outcomes.
Ernie

REPLY
oldbtstlshrp2 | @oldbtstlshrp2 | Sep 25 12:41pm
In reply to @dadcue "Fatigue is hard to define let alone quantify. My recollection when I was first diagnosed with..." + (show)
@dadcue

Fatigue is hard to define let alone quantify.

My recollection when I was first diagnosed with PMR wasn't fatigue in the usual sense of "being tired or sleepy." I wasn't sleeping too well because of pain but I can't say the lack of sleep made me tired. I was wide awake because that's what pain does to me.

After starting Prednisone I had energy to spare. I liked the energized feeling. I didn't care that I wasn't sleeping because I could find many things to do. I was very hyperactive and probably euphoric because I felt like I didn't have any need for sleep.

No need for sleep came to a halt after a couple of weeks. Sleep deprivation has a way of taking hold eventually and a person can sleep through anything. I slept for two days straight! I think sleep deprivation compounded my precarious health status but eventually everything stabilized.

One of my first fatigue related symptoms after things stabilized was "exercise intolerance." However, it wasn't like exercise made me tired. Rather, minimal activity made me short of breath. I couldn't walk up a slight incline without getting winded and I needed to stop and rest in order to catch my breath. This was my very first symptom I complained about. I told my primary care doctor. My primary care doctor ordered an exercise tolerance test but it was "normal" but I knew it wasn't normal for me.

My exercise "intolerance" progressed. I was in the middle of a 50 mile bicycle ride when I hit the proverbial wall. I didn't really care where -- I just needed to rest and the ditch with tall grass and critters everywhere was as good of a place as any. I hardly had any energy but I managed to check my pulse. My pulse was irregular so I thought that was strange. I told my primary care doctor about the incident and he thought it warranted an EKG. The EKG revealed a heart arrhythmia and left ventricular hypertrophy (LVH) . A random blood pressure check caught a blood pressure of 210/110 a few days later.

Hypertension (high blood pressure) is the most common cause of left ventricular hypertrophy (LVH), a condition in which the heart's left pumping chamber thickens and may not pump efficiently. A cardiologist placed the blame squarely on prednisone.

A year or so later, I was getting used to being short of breath. I told my story about having an ambulance called for me because I felt "slightly more short of breath than my usual." That incident culminated in being admitted to intensive care with an extensive, multiple and bilateral pulmonary embolisms.

I have to hold prednisone responsible for all the above. Since coming off prednisone I was able to discontinue 3 blood pressure medications. I also discontinued warfarin which I was supposed to take for the rest of my life. All my cardiovascular problems have resolved since stopping prednisone.

After my cortisol level improved, the "overwhelming fatigue" also improved. I don't think PMR caused me to have too much fatigue but Prednisone sure did.

Jump to this post

WOW! Your scenario sounds as if I was looking in the mirror, talking to myself. I am not having the extreme high blood pressure as you, bot all the other symptoms are there. Five minutes on my treadmill are nearly impossible. I am currently on the 10mg weaned from the original dose of 30, then 20, to 15 and now the 10mg. I can't wait to get off this Prednisone and doubt if I would take it again, even with the extreme pain? So far this splendid episode has cost me almost 3 months of being non productive, with tons of chores to accomplish. My heart goes out to all the others that have endured this program for a lot more time than my short amount.

REPLY
jlo2252 | @jlo2252 | Sep 25 6:03pm

@dadcue
Wow! 😮 unbelievably fantastic that you were able to stop 3 BP medications and a blood thinner after stopping the prednisone!! This is exactly why I need to get off my prednisone!

REPLY
2 replies
DadCue | @dadcue | Sep 25 7:07pm
In reply to @jlo2252 "@dadcue Wow! 😮 unbelievably fantastic that you were able to stop 3 BP medications and a..." + (show)
@jlo2252

@dadcue
Wow! 😮 unbelievably fantastic that you were able to stop 3 BP medications and a blood thinner after stopping the prednisone!! This is exactly why I need to get off my prednisone!

Jump to this post

These are the medications I have been able to discontinue after Actemra was started. Prednisone was the first medication to go. All the other medications were stopped over a period of 4 years after Prednisone was discontinued.

PREDNISONE 10 MG TABLET DAILY
ATORVASTATIN 40 MG TABLET DAILY
LOSARTAN 100 MG TABLET DAILY
AMLODIPINE 10 MG TABLET DAILY
SPIRONOLACTONE 50 MG TABLET DAILY
WARFARIN 5 MG TABLET DAILY
METFORMIN 500 MG TABLET 2 TIMES DAILY
RANITIDINE 300 MG TABLET DAILY
CHOLECALCIFEROL (VITAMIN D3) 2,000 UNIT TABLET DAILY
TIZANIDINE 4 MG TABLET 3 TIMES DAILY-- as needed

REPLY
1 reply
jlo2252 | @jlo2252 | Sep 25 7:35pm
In reply to @dadcue "These are the medications I have been able to discontinue after Actemra was started. Prednisone was..." + (show)
@dadcue

These are the medications I have been able to discontinue after Actemra was started. Prednisone was the first medication to go. All the other medications were stopped over a period of 4 years after Prednisone was discontinued.

PREDNISONE 10 MG TABLET DAILY
ATORVASTATIN 40 MG TABLET DAILY
LOSARTAN 100 MG TABLET DAILY
AMLODIPINE 10 MG TABLET DAILY
SPIRONOLACTONE 50 MG TABLET DAILY
WARFARIN 5 MG TABLET DAILY
METFORMIN 500 MG TABLET 2 TIMES DAILY
RANITIDINE 300 MG TABLET DAILY
CHOLECALCIFEROL (VITAMIN D3) 2,000 UNIT TABLET DAILY
TIZANIDINE 4 MG TABLET 3 TIMES DAILY-- as needed

Jump to this post

@dadcue
Of those meds you listed , I’m taking prednisone, simvastatin, losartin 100mg, and metformin, 1000mg 2 x a day. Also take verapamil (for Supraventricular tachycardia and BP) hydrodiuril for BP….
Hopefully I will be able to take Actemra and be able to dc some of these meds….,

REPLY
megz | @megz | Sep 25 8:45pm
In reply to @jlo2252 "@dadcue Wow! 😮 unbelievably fantastic that you were able to stop 3 BP medications and a..." + (show)
@jlo2252

@dadcue
Wow! 😮 unbelievably fantastic that you were able to stop 3 BP medications and a blood thinner after stopping the prednisone!! This is exactly why I need to get off my prednisone!

Jump to this post

Everyone is different. Since PMR started a year and a half ago, I have halved the dose of my two blood pressure meds - metoprolol and atacand. My blood pressure, which was still fairly high even on the higher dose, has dropped to normal while on prednisone. I have dumped the statin without any worsening of tryclyceride etc levels.

For me, the health improvements and ability to drop those meds while on prednisone were due to eating low carb/sugar and cutting out processed foods and additives. For some people, maybe it's the prednisone, for many of us it's improved diet and increased activity.

REPLY
1 reply
DadCue | @dadcue | Sep 26 6:06am
In reply to @megz "Everyone is different. Since PMR started a year and a half ago, I have halved the..." + (show)
@megz

Everyone is different. Since PMR started a year and a half ago, I have halved the dose of my two blood pressure meds - metoprolol and atacand. My blood pressure, which was still fairly high even on the higher dose, has dropped to normal while on prednisone. I have dumped the statin without any worsening of tryclyceride etc levels.

For me, the health improvements and ability to drop those meds while on prednisone were due to eating low carb/sugar and cutting out processed foods and additives. For some people, maybe it's the prednisone, for many of us it's improved diet and increased activity.

Jump to this post

I stopped eating almost everything because of my weight gain while on Prednisone. Exercise during PMR was nearly impossible to do because of pain. Overwhelming fatigue from adrenal insufficiency made my life very sedentary. It was impossible for me to "overdo" anything.

I have lost a significant amount of weight since coming off Prednisone. I think that has helped me to discontinue those medications. My weight loss is mostly because of more exercise.

I participate in a "MOVE" program which emphasizes both diet and exercise. A dietitian says I need to eat more because I shouldn't go all day without eating anything. She says that lowers my metabolic rate. I'm exercising as much as I can but the dietitian says "exercise won't overcome a bad diet." I need to work on eating a "healthier diet" instead of eating less. A healthy diet includes "healthy carbs" but I confess to liking the "unhealthy carbs" too.

An endocrinologist has been working on my metabolic syndrome that was caused by long term Prednisone use. He says hormones play an important role too. He says there is much more to losing weight and it isn't all about diet and exercise.

Overall I'm pleased with the progress I have made. I still have room for improvement. I need to make some more lifestyle changes. I think getting off Prednisone was the biggest change. That has made a huge difference in my life.

I have learned that being and staying healthy is never about one thing. A healthy lifestyle is a combination of many things which included the medications I took.

To be honest, I don't think Actemra is the best thing for me to take. Actemra just seems better to me than Prednisone at the moment. I really don't want to be on Actemra either.

REPLY
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