Polymyalgia rheumatica PMR

[lemonyellows]

Has anyone been diagnosed with this? I have had the onset of bilateral frozen shoulder, sacroiliac pain, upper and lower back pain as well as thigh pain/aches. I struggle to walk, climb stairs, get dressed etc.

My physio has recommended that I speak to GP to get inflammatory markers checked with the possibility of PMR.

I am excited to think I could have a medical route to help but daunted by the side effects of steroids. Just wondered if anyone has any experience of it.

Thanks.

Hi lemonyellows. I was diagnosed with PMR in late August this year, after a lot of pain in my neck and shoulders which was quite disabling.
My GP is treating it with steroids (starting with 15mg/day, then tapering to 12.5, then 10, then by 1mg each month - I'm just about to go onto to 8mg).
I'm hoping that you've found some help by now - but if not, if you start steroids and they magically reduce/eliminate the symptoms, that's supposed to be diagnostic for PMR.
My symptoms disappeared within about 4 hours after taking prednisolone!
Probably everyone reacts differently to steroids; I don't have too much trouble except that they keep me awake some nights.
There's a useful page on Facebook (PRM and GCA), and also these two websites:
https://pmrgca.org.uk/get-support/online-health-forum/
https://pmrgca.org.uk/
Good luck with your diagnosis and treatment!

@WitheredfromtheLake thanks for your reply. Spookily I started on pred yesterday after getting blood test results of increased CRP and ESR

Pain has reduced a bit and certainly felt less stiff this morning so looking forward to seeing how this progresses over next few days.

Your reaction to it sounds great especially with little side effects. I do worry about that depending how long I would need to be on these. But I can't live with the symptoms of PMR.

How has the tapering been?

Hi - glad you're getting some treatment now.

My CRP was 128 (no ESR was done) I found that 15mg got rid of all my symptoms; from 12.5 downwards I’ve noticed the odd ache or stiffness (but not any of the original horrible pain!) Meantime I’ve been able to do a course of pulmonary rehab which was planned for a chest condition, so it hasn’t prevented me from doing a bit of weightlifting and some walking.

Will be going on to 8mg from today and hope it will be just more of the same process. My GP is managing me over the phone and doing blood tests every month.

I think if you are lucky the PMR will burn itself out. I’m hoping this happens within a year – but many people on the forums seem to taper down and then have to go back up again, so it’s something of a waiting game.

I did notice my eyesight deteriorated a couple of steps quite suddenly (within 2-4 weeks) so have had to get new glasses. I don't know if this had anything to do with prednisolone - GP says maybe, the optician thought not!

I hope your pain continues to reduce or even disappear. You’re right that, although no one wants to take pred, it’s better than the actual condition! Hope all goes well for you.

Hi, glad of this thread. I’ve had a very recent diagnosis after 8 weeks of excruciating pain and having been dismissed when I asked if it might be this because of the high ESR rate and I have low immunity.
I’ve been on pred for five days, it is making a difference but not totally. What else can I do to manage the pain and stiffness? Some days I can’t even get my socks on.
I was walking half marathons two years ago and now this! It’s really affecting my confidence and self esteem and I can’t see an end to it.

@MeOldBamboo sorry you are also going through this.

What dose have you been started on? Apparently some people need higher doses than the 15mg. I'm tapering on 12.5 now. Much improved quality of life but I still get shoulder soreness at the neck/back and can't turn in bed because of hips. But I can live with that if the rest of the symptoms stay away.

Keep going as I didn't get immediate results. Some people need a few weeks my rheumatologist said.

@WitheredfromtheLake how are you getting on?

Hi, thanks for jumping on. 15mg per day but it’s not touching the sides. Hoping Dr will increase this tomorrow.

Hi @MeOldBamboo I hope your doctor has increased your steroid dose? If you're on Facebook, this page: PMR & GCA- Polymyalgia Rheumatica And Giant Cell Arteritis Support has nearly 19K members, so a vast range of experiences with starting doses and other topics. Some people seem to start on higher doses like 40mg or even 60mg.

@lemonyellows I sympathise with the 'soreness still there' thing. I dropped last week to 6mg and continue to have aches in my neck and up and down my arms. I take Cocodamol 30/500 probably once a day.
I'm trying to eat a low sugar diet to avoid becoming prediabetic. Had to change my glasses a second time within 2 months probably due to this - so hoping it's going to stabilise.
Many people on the forums state that nobody should be tapering in pain. Not sure how many people that works for!
Wishing everyone a good day/week/month.