New Member: I started having knee, hip, buttock and... - PMRGCAuk


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Ainenicaodha profile image
19 Replies

I started having knee, hip, buttock and shoulder pain about 8 weeks ago. The pain was making me vomit on occasion. I also had no appetite, lost 4 kilos and was constantly tired. It all came to a head this last week when I could no longer sit at my desk to work - I have been homeworking since lockdown. I called the GP on Tuesday, saw her Thursday during which she took bloods and she rang back on Friday with the diagnosis of PMR. I started 15mg prednisolone yesterday and have seen a marked improvement today already. Is that normal?

19 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi, and welcome ,

Yes it is - and this might give you a bit more info about your illness -

YuliK profile image

Glad to read you have improved. You are on the right road to recovery.

Please read the link which Dorset Lady has posted ...It’s really important that you understand exactly what pmr is about.

Take care of yourself and try to rest a little.

YuliK 😷


Ainenicaodha profile image
Ainenicaodha in reply to YuliK

Definitely doing that and my husband of only 4 months (we got married in lockdown) has been wonderful.

PMRpro profile image

Hi and welcome!

One thing doctors look for in PMR is a rapid improvement on a moderate dose of pred - I started on 15mg and within 6 hours could move normally, even do stairs normally instead of crawling up on hands and knees and stomping down like a toddler! There are others on the forum with similar experiences but there are also many who took longer, 2 or 3 weeks, or who needed a higher dose: the recommendations now say the lowest dose in the range 12.5 to 25mg. But needing more or only getting a small improvement does suggest it might be something else.

Loyd profile image

Totally normal. I had a miracle ‘cure’ in 48 hours. Don’t let them try to get you to taper too fast though is my only advice. Good luck.

ChinaWuntoo profile image

Less than six hours for me - then I over-did things and suffered. Now been free of pain (but not other stuff) for over six months, learned my lesson and try to pace things.

Watch out for duff rheumatologists (said with feeling).

And welcome.

I only have my own experience to go on but what you describe is exactly like my experience. All I would say is don't be fooled by feeling better. It's like a mirical but continue to take it easy. I felt better immediately with 15mgs

I did a full day in the garden and spent the next 2 days in bed.i am 10 weeks in and have reduced to 5 mgs a day. I have returned to a full active life playing golf 4 times this week and gardening in between I anticipate tapering further over the next 18 months by which time I expect it to have burnt out.

Since being diagnosed I have been surprised by how many people in my circle of contacts have had it or know someone who has and it seems that 2 years is the recovery time mentioned by everyone good luck

EeneeBee profile image

Yes it’s like magic! Be careful tho, don’t try and reduce too quickly. It’s your body not your GPs and it will dictate what’s right for you. Good luck 😉

Ainenicaodha profile image
Ainenicaodha in reply to EeneeBee

Many thanks!

Slowday profile image

Fáilte Áine

Ainenicaodha profile image
Ainenicaodha in reply to Slowday

Fáilte! Rumbled already!

Slowday profile image
Slowday in reply to Ainenicaodha

I probably should've welcomed you in the more Nordie vernacular - how's 'bout ye. Keep in touch - I'm 13 months into what I thought was a remand in an overnight cell but what now looks more and more like a 2 or 3 year sentence!! I have GCA but its getting off the steroids that is the real problem at the end. The good thing about this forum is that you'll find that there's nothing new - someone will have experienced what you're experiencing and will be willing to offer advice. Slán - Paul

PMRCanada profile image

Sounds like “classic” PMR symptoms, and totally normal to get relief rapidly if indeed it is PMR.

Over time, even with relief from pred, you may need to make adjustments in activity and rest along your journey. Listen to your body/symptoms and be sure to taper your pred dose slowly and do not drop more than 10% of your dose.

Take some time to deal with the emotional side of being diagnosed with a chronic illness. Lots of feelings usually emerge, especially in the beginning. The folks on this forum are supportive and helpful. We “get it”.

Ainenicaodha profile image
Ainenicaodha in reply to PMRCanada

I was diagnosed with microscopic colitis in 2004 so I am well aware of living with a chronic illness sadly. But I find these forums so useful for getting answer from real people who are experiencing the same thing. The MC "Potty People" are a great lot!

Viv54 profile image

Yes , really normal, I went to the Drs in the morning ,couldn't walk in acute pain, she gave me 20 mgs of Pred.She rang me at 6 in the evening like a miricale I was pain free.!.Also like Duracell rabbit full of energy for weeks to come ! Started a fast taper , thinking that was me cured !.How naive was i. I'm on my second flare which this time is much worse !.Word of caution be very vigilant when you start to taper !read a lot about ONE and follow this fantastic site.It's made a huge difference to me .Good luck.Best wishes Viv.😊

Ainenicaodha profile image
Ainenicaodha in reply to Viv54

Yes - tapering seems to be a slow process. But as I am only at day 3 (I think I have been very lucky being diagnosed so quickly) I know to listen to my body. Fatigue is a major symptom of Microscopic Colitis which I have had since 2004 so I know better now how to pace myself. No more C2 5K for me! I just hope I'll be fit for skiing next March.

Viv54 profile image

Sorry it should have said PMR ,not ONE !🙄

g1948 profile image

Hi. i am writing for my husband, I suspect he is suffering from pmr. But he only have trouble with his thighs and hips, the backside is so stiff. It has been like this for a mounth now. His crp is elevated, he has mild anemia, but no problems with his shoulders. Can that be pmr?

PMRpro profile image
PMRproAmbassador in reply to g1948

Yes. It comes in all shapes and sizes - though to listen to a lot of doctors it must have a special shape!!!

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