After a nightmare 2.5 years of PMR I am at the end of my tether. In May this year I had managed to get down to 7.5mg of prednisone and had a flare after my covid vaccinations going back to 12.5mg and trying to come back down slowly when I then got covid itself. This caused another flare & I am back at 12.5mg. I am not really functioning at this level and it takes the whole morning for the stiffness to go and the thigh and shoulder aches stay all the time. I see my consultant on Monday and have had bloods done which show ESR of 4 CRP of 0.20 which in barely any inflammation. My Monocytes have been slowly declining to a low of 1.6 ( 4 is low) and my Neutrofils are very high. The last time these figures were normal was before my vaccines and covid. My blood sugar level has also jumper through the roof. I feel I probably need to suggest to consultant a complete restart at say 20mg to reduce the pain and a slow taper but think she will look at inflammation levels and say I am in remission. Any advice as to where I go next would be appreciated. I long to be pain free and able to function but dont know if I am asking too much & I should be functioning with some pain to get steroids lower. I am in Spain so things are different here but I have access to my consultant both in person and by email as I need but feel I need guidance from those with experience. I am 56 and have PMR in both shoulder & hip bands. Thank you.
Where do I go next after 2.5 years of PMR - PMRGCAuk
Where do I go next after 2.5 years of PMR
I had a similar experience (not the jabs though) when I was switched to Medrol/methyl prednisolone from prednisone. I needed a higher dose and it didn't work until mid-afternoon when I had taken it in the morning. I did better taking it before bed so that might be worth trying. In the end I switched to Lodotra - a delayed release prednisone that releases 4 hours after taking it at 10pm and is very good for managing morning stiffness. It is used more in RA and is available funded by the healthcare cover in Italy and Germany - maybe also in Spain?
It is possible that the PMR symptoms were not PMR but a PMR-like presentation of something else or that the vaccine has changed something in the underlying autoimmune disorder so what is going on now is not "just" PMR. You won't develop raised markers unless the inflammation causing the symptoms is present at a high enough level and for long enough for the liver to trigger the production of the proteins that cause the blood markers to rise and they also tend to lag behind the symptoms appearing, that is not uncommon. Unfortunately - she may not know/appreciate that.
Thank you for reply. I will ask about this as I try taking steroids at 4am but refuse to set an alarm as I sleep badly to start with but it does mean my does varies between 4am and 8am which probably doesnt help at all.
Also I have private health here so have to pay for my drugs anyway
I used to get up at 2am to take my dose…a challenge indeed, especially because I had to eat something with it.
Then I discovered enteric coated empty capsules (purchased online), and stuffed the plain, uncoated pred, into the capsules. I take the capsule at 11pm and the pred is on board around 3am.
Works a charm, no more morning stiffness/pain.
You sure have been through a lot and I’m hoping you can figure out a path forward that addresses your pain.
Have you tried any painkillers? If they work well some of the pain may not be PMR
Hi Thank you for your reply. Yes I am happy with diagnosis as originally all pain subsided in 18 hours after first 30mg injection and then 30mg per day for a week. Its classic stiffness and really slow start then improves. My Mum & her sister also have PMR although my Mum was not diagnosed until after me and that was in UK. She responded to steroids and is now off them with no pain but is 88. I seem to be very susceptible to small decreases in pred and also react to virus triggers. I am relatively young to have it and have to work too which means I do not get the rest I need either as I am self employed running a guest house and the work is very physical. I take paracetamol and was prescribed ativan but it sends me crawling up the wall with hallucinations even on low doses. I think I need to follow the very slow taper to get clear but start higher to begin with no pain. Here the lowest tablet is 2.5 so a half 1.25 and quarters just disintegrate into powder. I have managed to only gain 7 lbs in weight in 2.5 years so I suppose thats a plus. Just feel I am back at the beginning and very low at the moment.
That is a very high starting dose - and if it needed that to control the pain in the first place and you struggle to reduce that adds to the possibility it isn't "just" PMR. The people at Keele in the UK identify various groups including one that responds typically for PMR to pred but then are unable to taper the dose of and there seems to be a tendency for them to develop an inflammatory arthritis over time or something complerely different,
Further to above post my consultant on review is swapping in Methotrexate to try reduce steroids as the steroids are now causing blood sugar problems. I asked about the diagnosis and she is happy that I have PMR just a severe case. I have to go back in 6 weeks with more blood tests to see if I am tolerating it. She hopes this will help the overall pain.
Cutting your dietary carbs, especially processed carbs and added sugar is more likley to reduce your blood sugar levels than adding in MTX! And it also helps with pred-related weight gain.
I don't have a big weight problem and have not gained much on pred. Mediterranean diet is good but sugars have slowly increased over last 18 months soI think she just wants me off pred or at least reduced after 2.5 years of never below 10mg
That's fine - but PMR makes that decision and there are no guarantees that MTX will get you entirely off pred. It took me over 4 years to reliably get under 10mg though I did get there eventually for a while. It didn't last. I did try MTX, I couldn't cope with it.
Thank you for your help. My UK GP says give it a go so I hope I can tolerate it. Cant say trying this near xmas is ideal but we will see.
I would refuse to trial it before xmas - far too much going on and it may spoil your family time. It is only under 2 weeks now - wait until the NY.
Sadly I took it on the way home from consultant without knowing the details as appointment was early and I had just had breakfast. She also made an appointment for me for exactly 6 weeks which is how much she prescribed me. I dont have to take any more until next Monday. Its 10mg so not a really big dose. I have to take folic acid tomorrow. Family arrive here week Tuesday.
I do hope you are OK - but I feel it was irresponsible of the doctor to suggest starting a new drug immediately before xmas. It is well known that MTX can cause a sort of "MTX-flu", especially in the first few weeks. By taking half mine before bed and half first thing next morning as recommended by the rheumy I never had the nausea - but that was about all I didn't have! The fatigue was awful and the reason I stopped - I was a sole carer and I couldn't cope.
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