1. < Polymyalgia Rheumatica (PMR)

PMR - Decreased prednisone and pain returned

Posted by alan bruce @alanbruce, Dec 29, 2018

I was at 2mg for 6 weeks of prednisone and decided go down to 1 1/2 and after 2 weeks I started to have pain in my shoulders. Will 1/2 a mg make a that sort of difference. I have been on prednisone for 18 months and have gone up and down before... Any recommendation on what to increase the predisone to.

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nyxygirl | @nyxygirl | May 17 1:29pm
In reply to @virginiaj "This is my 3rd bout. My starting dose was 10 and I never needed to go..." + (show)
@virginiaj

This is my 3rd bout. My starting dose was 10 and I never needed to go higher. I am now on 1, tapering to 1/2. The advice I got was to do range of motion exercise, avoid overdoing. I walk, go to aerobics and do gardening and lawn work. At one point, I was removing hostas, jumping on a shovel and also kneeling on concrete, planting flowers next to a driveway and ended up with a severely swollen knee, which curtailed my activities for a long time. So would suggest you not overdo. Otherwise, I still enjoy all these activities and have obtained what I call a “little old lady” gardening bench which I sit on to weed or plant.

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hello @virginiaj and @sherylp
good morning --Virginia's plan is pretty much my routine as well ; and do not overdo : )
Because of PMR I went on medical leave for 1 1/2 months last spring and then retired in Dec . I have tapered from 30mg to now 2 mg . The Prednisone withdrawal created some weird, unusual bouts of pain and fatigue at the 7mg to 3mg range - but all the discussions in this PMR group about adrenal insufficiency etc. were a big help for me to navigate thru.
I will say this - at suboptimal doses of Prednisone last year, i had really prolonged shoulder stiffness exactly 2 days after using my arms above my head ( pruning, using blow dryer , zumba in the pool ) . I noticed a few other commenters who mentioned the same observation at 48 hrs after ( some kind of activity) .

I will attach a manuscript from Germany that i found last year - an interesting take on exercise and PMR and women's health - let me find it

REPLY
1 reply
nyxygirl | @nyxygirl | May 17 1:46pm
In reply to @nyxygirl "hello @virginiaj and @sherylp good morning --Virginia's plan is pretty much my routine as well ;..." + (show)
@nyxygirl

hello @virginiaj and @sherylp
good morning --Virginia's plan is pretty much my routine as well ; and do not overdo : )
Because of PMR I went on medical leave for 1 1/2 months last spring and then retired in Dec . I have tapered from 30mg to now 2 mg . The Prednisone withdrawal created some weird, unusual bouts of pain and fatigue at the 7mg to 3mg range - but all the discussions in this PMR group about adrenal insufficiency etc. were a big help for me to navigate thru.
I will say this - at suboptimal doses of Prednisone last year, i had really prolonged shoulder stiffness exactly 2 days after using my arms above my head ( pruning, using blow dryer , zumba in the pool ) . I noticed a few other commenters who mentioned the same observation at 48 hrs after ( some kind of activity) .

I will attach a manuscript from Germany that i found last year - an interesting take on exercise and PMR and women's health - let me find it

Jump to this post

i will attach two papers that are in my collection _ The German group has a good summaries and
I sent this group an email and mentioned their comment :
Nondrug therapy Patients, especially older patients with impairment of physical function, should be offered exercise programs alongside drug treatment (OCEBM evidence level 5). -I wrote-"This comment is really resonating with me — So many people were so active before and are now struggling with returning to some kind of activities. You can tell that retirees are still playing golf - with some bad outcomes of torn tendons in their arms !? I personally am exercising in the pool and walking and bird-watching "

The second paper has some good info too .
Sheryl - have you seen this web site - PMRandIL6.com ? scroll to resources tab and down to find videos.

Shared files

colombo 2022 -german grp Dtsch_Arztebl_Int-119_411 (colombo-2022-german-grp-Dtsch_Arztebl_Int-119_411.pdf)

austprescr-41-14 2018 prescribing PMR (austprescr-41-14-2018-prescribing-PMR-.pdf)

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nancy53 | @nancy53 | May 18 7:43am
In reply to @sherylp "Hi my name is Sheryl and I just recently got diagnosed by my PCP internist with..." + (show)
@sherylp

Hi my name is Sheryl and I just recently got diagnosed by my PCP internist with PMR. He started me on 10 mg of prednisone but I can’t get in to see the rheumatologist until Oct. My question is:
I am very active and I love to garden and do yard work. Will these activities exacerbate my symptoms or help them? I haven’t had it long enough to discover this. I’m on 10 mg of prednisone and I can already feel things getting better. But I don’t want to aggravate anything either. Also, does PMR affect your stomach at all? Like nausea?
Thanks for any help you can give.

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Hi Sheryl, sorry you have joined the "club". I was worried about the effect of exercise at first too. I found that gentle and consistent exercise and MOTION of any kind are vital.

I garden a bit, and then rest. I do Yoga daily, then rest. Pool exercises are great and so is walking. Moving consistently and gently through the day has kept me mobile.

This clip was a life saver a few months ago when I could barely move. https://www.youtube.com/watch?v=fjk27oGh2aQ

Prednisone hasn't caused any gastric problems for me, I usually eat a banana when I take it.

Glad you've found this support group, it helps a lot.

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1 reply
art43 | @art43 | May 18 9:06am
In reply to @nancy53 "It seems strange that 1/2mg can make such a difference but it does! I've just tapered..." + (show)
@nancy53

It seems strange that 1/2mg can make such a difference but it does! I've just tapered from 10.5 to 10 and am having the strangest little pops of pain (not terrible) everywhere! I'll see how I do in the next few days, I want to at least maintain a taper of some sort. Tapering is so individual and apparently quite random in nature. Good luck!

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My rheumy told me at the outset that I would be having some pains during the taper process, implying that I should stick to the taper anyhow. Once my inflammatory markers were normal, any pains were not PMR, so I should not be tempted to think of increasing the prednisone. And so I fought through some level 2 hand/wrist/thumb pains while tapering from 8 to 6, and now I am at 5 with no pains anywhere. Best of luck to you in the journey.

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1 reply
charlotte61 | @charlotte61 | May 18 3:30pm
In reply to @sherylp "Hi my name is Sheryl and I just recently got diagnosed by my PCP internist with..." + (show)
@sherylp

Hi my name is Sheryl and I just recently got diagnosed by my PCP internist with PMR. He started me on 10 mg of prednisone but I can’t get in to see the rheumatologist until Oct. My question is:
I am very active and I love to garden and do yard work. Will these activities exacerbate my symptoms or help them? I haven’t had it long enough to discover this. I’m on 10 mg of prednisone and I can already feel things getting better. But I don’t want to aggravate anything either. Also, does PMR affect your stomach at all? Like nausea?
Thanks for any help you can give.

Jump to this post

Hi Sherylp -- I find that overdoing it with gardening and yardwork will make me feel stiffer and sorer in the days following. I started on 15 mg of pred last summer after being diagnosed with PMR, and am currently on 10 mg. I was going to try tapering down to 9 mg this weekend, but am holding off a bit until I have all my spring gardening done. I find that repeated bending, kneeling and lifting is a lot more difficult with PMR. I have also been dismayed at how much weaker my legs and arms seem to be. Last year at this time, I was able to squat/kneel and stand up again with no trouble. Now it's a struggle. It's depressing, because like you, I love to garden...but now feel like I'm in my 70s instead of my 60s.

REPLY
1 reply
victoriab | @victoriab | May 18 6:54pm
In reply to @sherylp "Hi my name is Sheryl and I just recently got diagnosed by my PCP internist with..." + (show)
@sherylp

Hi my name is Sheryl and I just recently got diagnosed by my PCP internist with PMR. He started me on 10 mg of prednisone but I can’t get in to see the rheumatologist until Oct. My question is:
I am very active and I love to garden and do yard work. Will these activities exacerbate my symptoms or help them? I haven’t had it long enough to discover this. I’m on 10 mg of prednisone and I can already feel things getting better. But I don’t want to aggravate anything either. Also, does PMR affect your stomach at all? Like nausea?
Thanks for any help you can give.

Jump to this post

I was diagnosed 2 years ago and struggle with prednisone taper generally experience nausea fatigue headaches low moodwhen reduce does and take antinausea medication and pace myself sometimes an increase in joint pain and use heatpad have learned my pattern and try to pace myself and be patient I had wished there was an alternative to prednisone but not everyone has had the side effects of prednisone I had it seems to vary a lot but this site is extremely helpful all the best to you

REPLY
1 reply
sherylp | @sherylp | May 18 9:28pm
In reply to @charlotte61 "Hi Sherylp -- I find that overdoing it with gardening and yardwork will make me feel..." + (show)
@charlotte61

Hi Sherylp -- I find that overdoing it with gardening and yardwork will make me feel stiffer and sorer in the days following. I started on 15 mg of pred last summer after being diagnosed with PMR, and am currently on 10 mg. I was going to try tapering down to 9 mg this weekend, but am holding off a bit until I have all my spring gardening done. I find that repeated bending, kneeling and lifting is a lot more difficult with PMR. I have also been dismayed at how much weaker my legs and arms seem to be. Last year at this time, I was able to squat/kneel and stand up again with no trouble. Now it's a struggle. It's depressing, because like you, I love to garden...but now feel like I'm in my 70s instead of my 60s.

Jump to this post

I completely understand. I was trying to unscrew something and I just didn’t have my grip strength or my arm strength. But I’m listening to everyone’s experiences. Thank you for sharing.

REPLY
sherylp | @sherylp | May 18 9:33pm
In reply to @nancy334 "For got to add that I read prednisone reduce your melatonin so I take 3 mg..." + (show)
@nancy334

For got to add that I read prednisone reduce your melatonin so I take 3 mg before bed and again through the night if I have trouble going back to sleep…but not after 3 am

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Wow that is a great idea. I have been waking up way too early like midnight and then it’s hard to go back to sleep! Thanks for the idea!

REPLY
1 reply
sherylp | @sherylp | May 18 9:37pm
In reply to @victoriab "I was diagnosed 2 years ago and struggle with prednisone taper generally experience nausea fatigue headaches..." + (show)
@victoriab

I was diagnosed 2 years ago and struggle with prednisone taper generally experience nausea fatigue headaches low moodwhen reduce does and take antinausea medication and pace myself sometimes an increase in joint pain and use heatpad have learned my pattern and try to pace myself and be patient I had wished there was an alternative to prednisone but not everyone has had the side effects of prednisone I had it seems to vary a lot but this site is extremely helpful all the best to you

Jump to this post

Thank you. I have already learned a lot. I’m so glad I found this support group. I belong to other support groups online such as loss of a spouse and open heart surgery and gardening but I never knew Mayo Clinic offered this site! We can certainly help support each other!

REPLY
victoriab | @victoriab | May 19 7:18pm
In reply to @nancy53 "Hi Sheryl, sorry you have joined the "club". I was worried about the effect of exercise..." + (show)
@nancy53

Hi Sheryl, sorry you have joined the "club". I was worried about the effect of exercise at first too. I found that gentle and consistent exercise and MOTION of any kind are vital.

I garden a bit, and then rest. I do Yoga daily, then rest. Pool exercises are great and so is walking. Moving consistently and gently through the day has kept me mobile.

This clip was a life saver a few months ago when I could barely move. https://www.youtube.com/watch?v=fjk27oGh2aQ

Prednisone hasn't caused any gastric problems for me, I usually eat a banana when I take it.

Glad you've found this support group, it helps a lot.

Jump to this post

Thanks for the exercise video link really helpful I have had lots of abdominal pain and gastric issues with prednisone had to increase pantaprozole and a couple of times treated for oral thrush I have got used to the discomfort and hopefully it will resolve once I have ceased prednisone so pleased to try these exercises and over time learned to pace myself and that regularly moving and gentle exercise is very helpful

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