1. < Polymyalgia Rheumatica (PMR)

Flare

Posted by gingergirl24 @gingergirl24, Nov 19 7:10am

I was diagnosed with PMR June 24 and began Prednisone 15mg x1 month. Saw Rheum and began weaning schedule: 12.5mg x 2 weeks, 10mg x 2 weeks and then
decreasing by 1 mg every 2 weeks. I did fine until I got to 3 mg. I developed one sided hip/buttock pain, L thigh pain. The pain has been significant but has me uncertain if this is a flare of my PMG as the sites of my pain are not the same as where they were in my initial diagnosis ( wrist, shoulders, hip all bilateral). I increased my Prednisone to 4mg but increased again to 5 mg after just a few days. Its been a week at 5 mg with minimal improvement. Should I continue or increase Prednisone or assume my pain has another cause? Thanks.

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

Teri | @tsc | Dec 7 5:12pm
In reply to @linda7 "My father had PMR in his 60's, then GCA in his late 70's or 80's. He..." + (show)
@linda7

My father had PMR in his 60's, then GCA in his late 70's or 80's. He was in the hospital a month for the GCA and they couldn't come up with a diagnosis. He almost died. He recovered completely and went on to live a good life, dying at home at 103. In his 90's he went on a trip to Mexico with his second wife and rode a horse up to see the monarch butterflies, at 10,000 feet elevation as I recall. He set a good example for how to deal with it which I can only try to emulate at 75.

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Thank you for sharing that wonderful story, @linda7.

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DadCue | @dadcue | Dec 7 5:32pm
In reply to @linda7 "My father had PMR in his 60's, then GCA in his late 70's or 80's. He..." + (show)
@linda7

My father had PMR in his 60's, then GCA in his late 70's or 80's. He was in the hospital a month for the GCA and they couldn't come up with a diagnosis. He almost died. He recovered completely and went on to live a good life, dying at home at 103. In his 90's he went on a trip to Mexico with his second wife and rode a horse up to see the monarch butterflies, at 10,000 feet elevation as I recall. He set a good example for how to deal with it which I can only try to emulate at 75.

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I was diagnosed with PMR in my early 50’s. For a while, it didn’t seem like 60 was doable.

I just turned 70 and things are looking promising for 80. I can only project one decade at a time. Now that I’m off prednisone things have improved significantly.

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jenbillig | @jenbillig | Dec 8 6:42am
In reply to @tsc "Hi @jenbilllig, My mother-in-law was stricken with GCA in her mid 80s and lived to be..." + (show)
@tsc

Hi @jenbilllig,
My mother-in-law was stricken with GCA in her mid 80s and lived to be nearly 100. Now I have it in my early 70s.
I wish you the best! Your message is uplifting!

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Thank you. I am so grateful that I can at least manage this condition. It’s not terminal. Grateful for the existence of Prednisone and aware of the side effects but again manageable. Off to my Sunday morning pickle ball. Just have to make sure not to trip 😂 hugs back to you.

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prestol | @prestol | Dec 8 11:37am
In reply to @linda7 "My father had PMR in his 60's, then GCA in his late 70's or 80's. He..." + (show)
@linda7

My father had PMR in his 60's, then GCA in his late 70's or 80's. He was in the hospital a month for the GCA and they couldn't come up with a diagnosis. He almost died. He recovered completely and went on to live a good life, dying at home at 103. In his 90's he went on a trip to Mexico with his second wife and rode a horse up to see the monarch butterflies, at 10,000 feet elevation as I recall. He set a good example for how to deal with it which I can only try to emulate at 75.

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@linda7, your father’s story is so inspirational to me. A good reminder that life goes on regardless of our health challenges as we age. How we live is up to us. Yes, managing PMR takes a lot of time and energy, but we can always find time to enjoy nature, meet new people, try new activities.

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veronicamac | @veronicamac | 4 days ago
In reply to @jenbillig "I have managed this PMR for the last 7 years. Up and down with prednisone. Today..." + (show)
@jenbillig

I have managed this PMR for the last 7 years. Up and down with prednisone. Today I am at 5mg trying to bring it down but frankly would not be surprised if I have to stay on 5 mg the rest of my life. At least I have absolutely no pain,,

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I can sympathise with you as I have had PRM for over eleven years now. I have tried and tried without success to get off prednisolone but as soon as I reach 3mg I flare up. I usually have to increase to 10mg to get relief. I can bring the dose down quickly until I reach 5mg, then very slowly. I tried the dead slow method but that too was unsuccessful. Like you, I'm wondering if I should resign myself to staying on 3mg permantely. My doctor disagrees with this and thinks I need to keep trying but she has no advise on how to do this. All very frustrating!

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1 reply
DadCue | @dadcue | 4 days ago
In reply to @veronicamac "I can sympathise with you as I have had PRM for over eleven years now. I..." + (show)
@veronicamac

I can sympathise with you as I have had PRM for over eleven years now. I have tried and tried without success to get off prednisolone but as soon as I reach 3mg I flare up. I usually have to increase to 10mg to get relief. I can bring the dose down quickly until I reach 5mg, then very slowly. I tried the dead slow method but that too was unsuccessful. Like you, I'm wondering if I should resign myself to staying on 3mg permantely. My doctor disagrees with this and thinks I need to keep trying but she has no advise on how to do this. All very frustrating!

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"My doctor disagrees with this and thinks I need to keep trying but she has no advice on how to do this. All very frustrating!"
-------------------
I know this feeling well. I was in the same predicament about 6 years ago.

It was very frustrating to me too when I was still on 10 mg of Prednisone after 12 years of PMR. I was "comfortable" on 10 mg of prednisone but my PMR symptoms would start to return if I tapered down to 7 mg. The dead slow method didn't work for me either except the inevitable flare was somewhat delayed. If I continued to taper down to 3 mg, I would always flare. I would do the same as you and go back to 10 mg and try again.

My rheumatologist also wanted me to keep trying to taper off prednisone until I said I wasn't going to try anymore. I wasn't giving up but I insisted on something else besides Prednisone to control my symptoms. I was at a standstill until my rheumatologist suggested something as a "last resort" because "taking prednisone for the rest of my life wasn't a good outcome."

The last resort was a biologic that controlled my PMR symptoms while I tapered my prednisone dose lower. I didn't experience any PMR symptoms at 7 mg when I took the biologic. I tapered by 1 mg per month from 10 mg to 7 mg. I decided to get the inevitable flare over with so I tapered by 1 mg per week for the next 4 weeks down to 3 mg.

I was stuck on 3 mg but not because of PMR symptoms. I was uncomfortable tapering any lower than 3 mg because I didn't feel well and I was having dizzy spells. I told my rheumatologist who checked my cortisol level and it was low so I was referred to an endocrinologist.

The endocrinologist didn't want me to taper any lower than 3 mg because my cortisol level was too low. She wanted me to stay on 3 mg for as long as it took for my cortisol level to improve. After 6 months my cortisol level improved enough that the endocrinologist said I could try to stop prednisone. She said as long as my cortisol level was "adequate" there was no need to taper from 3 mg because it was a low dose. She said I could go from 3 mg to zero without tapering but I should "take prednisone again for any reason if I felt the need." With that reassurance I stopped prednisone and I basically went from 3 mg to zero in a couple of days.

I had a need to take 60 mg of Prednisone again but only temporarily. I was off Prednisone again 6 months later after some adjustments were done to my biologic dose.

I have now been completely off prednisone for the past 3 years

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1 reply
veronicamac | @veronicamac | 4 days ago
In reply to @dadcue ""My doctor disagrees with this and thinks I need to keep trying but she has no..." + (show)
@dadcue

"My doctor disagrees with this and thinks I need to keep trying but she has no advice on how to do this. All very frustrating!"
-------------------
I know this feeling well. I was in the same predicament about 6 years ago.

It was very frustrating to me too when I was still on 10 mg of Prednisone after 12 years of PMR. I was "comfortable" on 10 mg of prednisone but my PMR symptoms would start to return if I tapered down to 7 mg. The dead slow method didn't work for me either except the inevitable flare was somewhat delayed. If I continued to taper down to 3 mg, I would always flare. I would do the same as you and go back to 10 mg and try again.

My rheumatologist also wanted me to keep trying to taper off prednisone until I said I wasn't going to try anymore. I wasn't giving up but I insisted on something else besides Prednisone to control my symptoms. I was at a standstill until my rheumatologist suggested something as a "last resort" because "taking prednisone for the rest of my life wasn't a good outcome."

The last resort was a biologic that controlled my PMR symptoms while I tapered my prednisone dose lower. I didn't experience any PMR symptoms at 7 mg when I took the biologic. I tapered by 1 mg per month from 10 mg to 7 mg. I decided to get the inevitable flare over with so I tapered by 1 mg per week for the next 4 weeks down to 3 mg.

I was stuck on 3 mg but not because of PMR symptoms. I was uncomfortable tapering any lower than 3 mg because I didn't feel well and I was having dizzy spells. I told my rheumatologist who checked my cortisol level and it was low so I was referred to an endocrinologist.

The endocrinologist didn't want me to taper any lower than 3 mg because my cortisol level was too low. She wanted me to stay on 3 mg for as long as it took for my cortisol level to improve. After 6 months my cortisol level improved enough that the endocrinologist said I could try to stop prednisone. She said as long as my cortisol level was "adequate" there was no need to taper from 3 mg because it was a low dose. She said I could go from 3 mg to zero without tapering but I should "take prednisone again for any reason if I felt the need." With that reassurance I stopped prednisone and I basically went from 3 mg to zero in a couple of days.

I had a need to take 60 mg of Prednisone again but only temporarily. I was off Prednisone again 6 months later after some adjustments were done to my biologic dose.

I have now been completely off prednisone for the past 3 years

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That is fantastic. Well done for being persistent and getting such a good
outcome. I wasn't aware that there was anything else that could treat
polymyalgia. I have asked my GP for a referral to a rheumatologist on
several occasions but she is not allowed to refer me to one for PMR so I
have to deal with a GP who, although well meaning, doesn't have any
expertise in treating this condition. However, I have an appointment with
her at the end of the month and I plan to take the information you kindly
sent me to ask her if she can give me a trial on a biologic. I'm not sure
if this is something that is given on the National Health Service in the UK
but I really hope it is as I loathe being on prednisolone and having PMR
for the rest of my life. Thank you so much for taking the time to respond.
Kind regards,
Mary

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1 reply
DadCue | @dadcue | 4 days ago
In reply to @veronicamac "That is fantastic. Well done for being persistent and getting such a good outcome. I wasn't..." + (show)
@veronicamac

That is fantastic. Well done for being persistent and getting such a good
outcome. I wasn't aware that there was anything else that could treat
polymyalgia. I have asked my GP for a referral to a rheumatologist on
several occasions but she is not allowed to refer me to one for PMR so I
have to deal with a GP who, although well meaning, doesn't have any
expertise in treating this condition. However, I have an appointment with
her at the end of the month and I plan to take the information you kindly
sent me to ask her if she can give me a trial on a biologic. I'm not sure
if this is something that is given on the National Health Service in the UK
but I really hope it is as I loathe being on prednisolone and having PMR
for the rest of my life. Thank you so much for taking the time to respond.
Kind regards,
Mary

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Sorry ... I didn't realize you were from the UK. Someone told me the rules in the UK are different from here in the USA. I guess the only option for PMR in the UK is prednisolone.

Unless you have GCA you won't be able to get the biologic that was used for me. I was never diagnosed with GCA when the biologic Actemra (tocilizumab) was tried. I think Actemra (tocilizumab) has the brand name RoActemra in the UK and is only used for GCA. I was told my experience with Actemra to treat PMR wasn't pertinent to a PMR forum based in the UK. It was sad because I really liked the forum.

Actemra isn't FDA approved in the USA for PMR either. My rheumatologist was able to get a waiver and got it approved for me. The reason it was approved was because I was unable to taper off prednisone and my case of PMR was called refractory. He also mentioned that "all other alternatives were tried and had failed to get me off prednisone.

There is another biologic that is FDA approved in the USA for the treatment of PMR. It is called Kevzara (sarilumab). The way it works is basically the same way Actemra works. Both Actemra and Kevzara block the pro-inflammatory effects of the cytokine IL-6 that is implicated in PMR and GCA.
https://nras.org.uk/resource/il6-receptor-inhibitors-tocilizumab-and-sarilumab/
-------------------------
I wish you luck with tapering off prednisolone. I mostly wanted to encourage you to keep trying. My rheumatologist said if I only needed 3 mg or less of prednisone for the rest of my life ... that dose might be okay. The endocrinologist said I was very lucky to be able to taper completely off prednisone after being on prednisone for such a long time.

I wish you well and free of both PMR and prednisolone.
Mike

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1 reply
ropnrose | @ropnrose | 3 days ago
In reply to @teddyz "Does anyone ever get fatigue without pain? I'm trying to figure out if this fatigue is..." + (show)
@teddyz

Does anyone ever get fatigue without pain? I'm trying to figure out if this fatigue is from a PMR flare or if it's just because work has been too much lately. Or that work has created a flare. Or who knows!

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Yes. I was diagnosed with PMR and GCA the end of July 2024. Started taking 60 mg. of pred for the GCA. My bodyaches went away within a matter of days. I dealt with major fatigue the entire summer. I didn't start tapering from 60 mg. until the end of August. I think the fatigue I had in August was sleep deprivation from the prednisone. Once, I started tapering, my fatigue lessened, but didn't go away entirely. I was still napping 1-2 hours/day. At 10 mg., I felt like I had low energy. It wasn't like the fatigue that I felt earlier. All along, no body pain. (I was having continual headaches. An MRA determined that I had vasculitis in my brain. ) I'm down to 8 mg. and my bodyaches have returned along with the headaches. I have a little more energy, but not 100%. Good luck.

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1 reply
ropnrose | @ropnrose | 3 days ago
In reply to @karinaph "Reading your post and others. I've been on this roller coaster of PMR for nearly 5..." + (show)
@karinaph

Reading your post and others. I've been on this roller coaster of PMR for nearly 5 years.. sad to say. I've had flares several times. Each time has been different not as severe. I'm on just 2 mg. And can't seem to go below that. I was P free for several months, then got a nasty flu in June and soon thereafter ,boom back to bilateral stiffness ( immobility) of shoulders and knees and cramps.
I'd say that perhaps your taper is too aggressive? Normal course is 2.5-5 years according to my Rheumatologist. I too wanted to get off the P swiftly, learn the hard way that was not going to happen. But with that said. We're all having unique experiences.
Question for all:
Do you have pain and cramping in your muscles? That seems to be one of my symptoms. Strange cramps in back, buttocks & pelvic area, neck. Not the usual toes and calves.
My Md says this isn't typical. But it emerged when PMR started.
Take care all, this is a bummer for us all but we can be active... just not quite as much. Time to rest is important for certain.

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My muscle pain is not cramping. The best way I can describe it, is as if I went to the gym and did too many squats! The pain is from my waist to my knees.

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