Do you think this is a PMR flare and if so how should I manage it?
Posted , 12 users are following.
First of all - apologies for many typos to come - doing this at speed
My PMR started in a non typical way - let's call this phase 1 - I has lots of pain and stiffness but mostly is lower body- though crept into upper body a little eventually. Did not come on suddenly but in creeping way. Loads of blood tests - showed nothing. Was still in 40s when symptoms started. Mobility difficulties but could still function.
PHASE 2 - came on overnight after a few years of the above. neck and shoulder hurt very badly - I thought maybe frozen shoulder. One sided at first but became bilateral. Went to physio and osteopath with no result. felt as if I had flu - etc. etc. Eventually could barely function - saw new GP - diagnosed with PMR.
Steroids seemed miracle cure.
Had a few l flares over the last couple of years but have managed them - they felt like a return to phase 1 as detailed above. Now have sudden onset neck and shoulder pain - cannot relate this to an injury. But I doubled my dose for a few days and it did not seem to help at all! At first I thought this meant it couldn't be PMR RETURNING as pred did not seem to help. But now I am wondering if I want that 0-20 effect I had initially - when the pain disappeared practically overnight - should I have gone even higher or for longer?
Thoughts appreciated.
0 likes, 21 replies
TheRaven greentea26
Posted
Are you having any pain going down the arm at all? I've had something similar recently but I recognized the pain going down my arm - I had a pinched nerve in my neck. Am still getting treatment for it but it's gradually getting better. The lack of any relief as a result of doubling your Pred dose makes me wonder if it's really related to your PMR.
You said "....couldn't be PMR RETURNING.....". No, your PMR hasn't returned - it never left. It's still there but the Pred is keeping the inflammation and pain mostly under control, so the PMR is still there. It's just quietly lurking.
greentea26 TheRaven
Posted
no pains down my arm- just shoulder
and neck
ptolemy TheRaven
Posted
I have pain just in my right arm right down to my wrist. It is the sort of ache you get if you have been carrying a heavy weight for a long time and I am very weak in that arm. Is that similar?
patricia43291 greentea26
Posted
I didn't see if you are still on prednisone or what dose, seems we need to know that one.
nick67069 greentea26
Posted
It would help to know what dose are you at the moment. In general if you are at the dose below 7-8, then adding +5mg to original dose for a few days ( about a week) should quiet down your flare. PMR activity is like ocean with ebbs and flows and sometimes for no apparent reason can increase and requires higher dose of pred to manage it. And PMR never left, it is just under control with medication. Average length if treatment is almost 6 years.
greentea26 nick67069
Posted
on 10 at the moment
nick67069 greentea26
Posted
then going to 20 may be a bit too much... I would still go +5mg if it were me and stay there for 3-5 days and if you get improvement, you can go back to 10-11mg directly ( as long as you dont stay at higher dose longer then week).
Michdonn greentea26
Posted
Greentea unfortunately I now have had too many flares. Now we are all different and each case is different. Here is what I have been doing to control a flare. Double my current dosage for 3 or 4 days, no relief; triple for 3 or 4 days, no relief quadruple 3 or days, reverse the increases to do rapid taper. Good luck get that inflammation under control quickly. Think positive, stay active and try to smile, it helps!🙂
greentea26 Michdonn
Posted
Thanks- the lowest i have even been down to is 7 - earlier this summer
FLared there with bad fatigue- had to go up to 12 and now back at 10
Had been at 10 for several weeks when this occurred
Michdonn greentea26
Posted
Greentea, my bad flare was at 7 had to go to 30 to get relief. Stay on 30 for 6 weeks to get totally PMR pain free. Up to that point I was following my Rheumy's directions. Then I found the forum, DSNS, several great articles and started managing my own medications. Now I try to listen my body, if I have any PMR pain I do not reduce my dosage. I use DSNS to taper and if any flare I increase my dosage quickly to get the inflammation under control. My flare was in January and I had to triple my dosage to get relief. After settling back down to my taper routine I still felt fatigued and stayed on one dosage level for several weeks before starting to taper again. No doctor knows how you feel. My Rheumy now provides me a prescription, I go every months, have a blood test and she tells me my numbers, but I know if my numbers will high, because if I have a cold, if I have hurt myself which I still do, my numbers will be high, nothing to do with PMR. I try the control the inflammation and stay PMR pain free. Good luck, think positive. 🙂
EileenH greentea26
Posted
Mine started a bit like that - some years of general aches but by no means all the list of "typical" PMR symptoms, which on the basis of thousands of patients on the forums over the last 10 years are NOT really typical at all. Then I woke up with my entire back in spasm and I couldn't move. I've never been off pred in the last 10 year but have had flares at intervals. I htink it is just one version of PMR, there are several.
But your current problem could be myofascial pain syndrome - more common alongside PMR and caused by the same inflammatory substances except not systemic (all through the body) but concentrated in trigger points which can be felt as hard knots in muscle groups in pairs on either side of the spine, in the shoulders, about rib level and in the lower back. They irritate the muscle group and can send it into spasm and also nerves running nearby causing referred pain in the regions supplied by that nerve - including being one cause of sciatica. There doesn't have to be an identifiable injury to send it mad, a different pillow or braking sharply in the car can be enough to make it tense and finish off the job.
A really high oral dose of pred (relatively speaking) often soothes it, may even get rid of it, but local targeted treatment is more likely to succeed. I found Bowen therapy helped me, it doesn't work for everyone. I have had needling treatment, both dry and wet needling with both saline and lidocaine at various times, steroid injections into the trigger points to dispel them, and manual mobilisation which is slow but extremely effective. A good physio who is experienced in sports medicine or therapeutic massage therapist are good options. Doctors usually want to do imaging and tell you nothing is wrong - that's because the muscle problems don't show. The local hospital orthopods here where I live recognised it immediately - a guy I had seen privately told me there was nothing wrong! Without an x-ray ...
Anhaga greentea26
Posted
It may or may not be PMR. For some time now I've had shoulder and sometimes neck pain. I don't think its directly related to PMR as I don't have any of the other symptoms PMR gave me, and it doesn't feel like the original PMR I had in neck and shoulders. More like a strain or injury and now I'm thinking myofascial pain of some sort. I happened to have a headache a couple of evenings ago. acetaminophen didn't help so I took one slight overdose of aspirin and lo and behold the shoulders were fine for 36 hours! I do go for physio but that hasn't been helpful lately, possibly I need a break from the exercises I do. I was much worse this morning after spending an hour ironing yesterday. And the short answer to this, no I do not take more pred for this condition. I suspect it's at least in part the muscle weakening effects of pred which have led to this state, along with the whole ageing process.
Silver49 Anhaga
Posted
I agree with you, Anhaga. I have similar problems and know it is not the return of PMR. I have been off Pred for about 3 months and recognise the neck and shoulder pain is different but it would have been so easy to have mistaken it for PMR.
Anhaga Silver49
Posted
Well done, I knew you were approaching zero, so it's great that it seems to have worked. I'm approaching 1 mg, doing DSNS twice over, 1/2 mg at a time, so I hope the taper works. It better, each step now taking three months!
Silver49 Anhaga
Posted
Thank you, Anhaga. I seemed to get stuck at the same place as you..... 2.5mgs. When I eventually reached the last 1mg I found that I didn't have to go so slowly. So far I have been fine and any neck or shoulder pain I now put down to wear and tear, as I have no pain in the morning. I hope it works for you this time but it is such a small amount it is almost negligible, though I understand the frustration of almost being there.