Hi, I was diagnosed with GPA (Wegeners) in 2012 with significant airway/ENT issues requiring surgical interventions that continued until 2018. In 2021 postcovid/vaccinations I developed debilitating pains that read exactly like PMR, and these shoulder hip and leg pains are nothing like the pains I used to get when my airways were flaring with GPA.
I wonder if my GPA is in remission and what I now have is PMR.
I have been taking low dose steroids on and off as required for the last few years, and my consultant is fine with this, but I’m going to see him shortly and want to discuss PMR and whether we can test to rule it in/out.
I know PMR is often an issue alongside GCA, but I wonder if anyone has got GPA and then developed PMR as well?
A lady on the GPA site suggested I ask on this forum hence my question.
Thanks for any help.
Written by
Pompey3
To view profiles and participate in discussions please or .
Hi - interesting articles but not what I am after! You can have PMR without GCA (as I am sure you are aware) and I definitely do not have GCA, but do definitely have GPA, (diagnosed in 2012 I have the 13 year tee shirt with all of the battle scars).
These articles relate to "Polyangiitis overlap syndrome with granulomatosis with polyangiitis (Wegener’s) and giant cell arteritis"....this is where the medics cannot decide between GPA and GCA.
The reason that I am keen to find anyone with GPA who has then developed PMR is that a couple of years ago when I first suspected that this wasn't all GPA I paid to see a top Rheumy in London who specialises in Vasculitis thinking she may have other diseases that she could check for based on my presentation (as my GPA consultant is a renal specialist). She said that since the covid pandemic clinics had seen a huge spike in very similar presentations from vasculitis patients and they didn't know why. Within a month of my first booster (moderna having had astra zeneca x2 with no issues) the joint and muscle issues started so this for me was super interesting.
My GP referred me at the Rheumy suggestion to her NHS practice but I never got an appointment being pushed instead into Renal again as Renal deal with GPA not the Rheumy team, so that was a waste of time. In London they seem to have a thing that Renal deal with small and medium vessel vasculitis and Rheumy do large blood vessel diseases.
Having read up about stand alone PMR (without any GCA involvement) I've learnt that low dose steroids are the go-to solution (15-20mg tapering to zero) and this is exactly what fixed me at the suggestion of my renal consultant and I have since learnt that when the pains come back steroids at 5-10mg for 3-5 days fix it for a fair few weeks (which my renal chap finds surprising and interesting at such very low doses, but then RA use 2-3mg daily and it works so for me not so surprising), but then the pains come back, so back onto steroids which ideally I would like to get off completely as I don't take any other meds at all.
Anyway, I gather from my research that MRI scans of the hips and shoulders can prove PMR one way or the other so I may go down this route - I'll probably have to pay as I can't see the NHS funding this, but hey-ho.
I am not sure this site will have GPA people on it as it is focused on GCA and PMR but thought it worth a punt as all suggestions welcome!
My point was rather than you can have more than one - and that is the impression I get for you.
Now if it WERE PMR you have and it is right down at very low disease activity, then a week of adding 5mg to where you are, as per our (rheumy approved) flare protocol, would fit with you needing maybe 1/2mg a day to keep it permanently quiet rather than the bolus approach you are using and treating zero as your LED. It is too low.
But let me pick up on your comment "15-20mg tapering to zero" - I have just come from a "PMR prioritising" meeting where we were discussing just this, Management of PMR is not that - it isn't a treatment of a high dose taper to zero course of steroids, it should be a taper to THE LOWEST EFFECTIVE DOSE. And that may be anything from zero up. We know from experience here that a VERY low dose is enough to scoop out enough inflammation from the bucket of inflammation and prevent it overflowing into symptoms you can feel. Many doctors poo-poo that idea but there are a lot of patients who can attest to it.
Brilliant and thank you so much for coming back to me, it is always so hard to have a "conversation" via swapping text messages but I now have a huge smile having read your new reply.
I have an appointment with my GPA consultant in early March and am going to go through this with him. I am 100% that this is PMR, and the GPA is in remission, and if I fine tune my steroid use and accept daily 1-2mg for a long stretch 6-12 months then the light of no pain is within my grasp.
The first ever PMR episode had built into a full on disability crisis over 5-7 months and I was on crutches and in agony, my consultant said as the flare had really taken hold go in at 20mg/day tapering to zero over a few months. The second time I discussed it with my GPA consultant (having fiddled myself with lower steroid levels) he suggested 5mg alternate days then tapering slowly over weeks. But 5mg didn't touch it so I did 10mg for 2 days then 5 mg for 5 days then off. I have this real aversion to drugs which keeps driving me to try to get to zero....but I am slowly learning and perhaps more importantly accepting that zero isn't going to work.
At one stage last year I was fiddling 3mg one day, then nothing for a couple of days then 2mg, etc and so over a week probably about 1mg/day or less, my focus was on not taking anything. I kind of worked out that my approach wasn't getting this issue resolved so then I have started the 5mg for 3-5 days but then stopping until the pains came back, for the last few months. Sometimes I can be pain free and hence drug free for 3 weeks, but eventually the pains come back and getting up out of the car, or up from sitting on a hard chair, etc etc.
Reading your reply, I am really interested that like RA the PMR view is to stay on a maintenance dose of 1-2mg/day which is super super low - do you know if there is a view that after a year or two you can then try zero (see I am still fixated on zero!)? I think that a year of 1-2mg a day and a life which is totally pain and disability free sounds like paradise after 2-3 years of pain that just won't go for more than a couple of weeks. I think I need to bite the bullet and just take that extremely low dose for a year and see where I can get to.
Thank you so much for all the information which should help me stopping the "hit and hope" dartboard approach! I'm going to run through the plan at my consultation in a couple of weeks.
You can always keep trying for zero - but you have to take a long time at each new lower dose to be sure it is still enough, sometimes 2 or 3 months. Your body will always tell you if the PMR is still active - you aill start to get the symptoms again. People have been known to assume this all over, 1/2mg a day kept them fine and so they tried stopping - and even 6 months later the niggles of PMR started to reappear, zero had been a step too far. Now I suppost you could accept that and have months of no pred but you have to be able to restart pred with a short sharp taper to clear out the inflammation but longterm no pred will just result in returning to the severe pain and disability of where you were when it started. But I think your disease activity is much higher than that if you only manage a few weeks.
POMPEY, I have only in the last few days been dx with ANCA vasculitis muscle and joint pain, tingling and numbness in feet, chronic sinusitis, runny nose, itchy eyes, aching teeth at times, pain and ringing in my ears, mild COPD, rash et, and apparently "wildly poditive" ANCA levels.Seems the same crazy ANCA score was present in 2020 but many doctors missed it. New rheumie caught it. I was diagnosed with what was seemed to my doctors to be an obvious case of PMR in December 2019 and treated with prednisone ever since. I was sent to a new rheumie this January because of whst i thought wss a PMR flare at whichntime he caught the vasculitis. He belives i actually did have PMR when i was diagnosed. I also had vasculitis though. Another new journey. Currently on 5 mg pred only. All other labs are good. No kidney damage. I have afib. Very early days for me re my understanding of all of this but this site has been a God send. So many thanks.
Hi how interesting, do you know what ANCA vasculitis you have GPA or GCA? Your list of issues has a lot of overlap with mine and it's not great.
I found Sterimar saline nasal spray (over the counter at pharmacies) used daily really helps with my nasal issues and a revelation has been a home nebuliser with medical grade saline every few days keeps all of the tubes moist and working and has solved all of my ear issues - they just pop and crackle now with no pain and good hearing. The saline is a bit pricy but my consultant ENT agreed to prescribe it and I just had to buy the nebuliser, it has been a game changer.
I am ANCA positive for MPO not PR3. My levels sit at around 8-10 whether I have no symptoms at all or flaring it might go to 12. So compared to many people not much at all. The lowest it has ever recorded was 5 whilst immune suppressed.
My ESR and CRP inflammatory markers only get up to about 21 on a full flare, so again not huge, some people hit levels in the hundreds, and for me with no physical issues I tend to be a 2 at best.
Have you been on 5mg/steroid s a day for the PMR since diagnosis? and has this kept you mostly pain free?
If I can just sort these PMR pains then I am all good - I wish you well on your journey, and thanks so much for your reply.
I think you might like the Dasgupta webinar about GPSD, the spectrum of GCA/LVV/PMR as a disease, that we just had this afternoon. Unfortunately the sound was poor - he's not as versed in microphone use as he might be - but the slides are good and it has been recorded so they hope to cobble a transcript too. You would learn al lot about vasculitis from it!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Newly diagnosed with PMR
Post PMR damage - help!
Trochanteric Bursitis with PMR
Newly Diagnosed with PMR - and slightly bewildered!
PMR burned out? How do you know
