Hi everyone. I was diagnosed with PMR in the summer of 2019. I resisted Pred for as long as I could but then had to weigh up the uncertainty of potential GCA. So I began a 20mg daily dose of Pred. IT has now been 19 months and I have been weaning off, 1mg monthly. Today I am at 1mg daily. My inflammation markers are all good and back to normal. However, I feel like I've been hit by a bus. Honestly, I've been feeling this way now for months and, now and again, I might have an okay day but wholly I am completely shattered after 9-10 hrs sleep each night, soreness in my middle back like I've never known before, muscle and joint pains that are just as crippling as the PMR. My eyes are constantly red. Everything hurts!
Today I've called the doctor. I think this must be Adrenal Insufficiency. I wondered if any of you might be familiar with this and/or could let me know of what to expect treatment-wise?
Love and kindness to you all
Teri x
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I'd say you have PMR. You need more pred. When your symptoms started to reappear that was a sign to pause your taper and recommence once the symptoms were under control again at a much slower pace.
Thank you for your reply. That was certainly my first thought too, and so I spoke to my rheumatologist. He disagreed. Blood tests told him that my PMR had subsided???
Thank you. This is very interesting. Nobody anywhere seems to be talking about the balancing of other hormone levels. Of course I don't want to go back up with the Pred either. If I knew that I could put up with this level of discomfort, SAFELY, then I would give it some time and see if I improve. I'm quite sure blood tests will happen next to check cortisol and esr/crp. I hope you continue to improve
To be honest - I would suspect that the PMR is still active and the inflammation has built up again to the level it was originally. You are never reducing relentlessly to zero, you are tapering you dose to find the lowest dose that gives the same relief from symptoms that the starting dose achieved. Just because the markers are in normal range doesn't mean the underlying autoimmune cause of the symptoms we call PMR is not still active - it means there isn't enough around to trigger the liver to create the proteins that raise those markers and that is quite common when people are still on some pred, however low the dose, and the rise can lag behind, sometimes as much as 6 months. That is why symptoms always trump lab numbers.
The dose you are looking for is what is enough to combat the new batch of inflammatory substances/inflammation caused which is shed in the body every morning about 4-4.30am. As long as the dose is enough, all that inflammation is cleared out and you have no resulting symptoms. If the dose is even slightly too low there is always a small amount left over each day, and like a dripping tap fills a bucket and it eventually overflows, so the inflammation builds up to a level where it is enough to cause symptoms again. PMR and GCA are not conditions where you take a dose of pred and stop - half of patients with PMR need some pred for more than 6 years, 40% are still on pred at 10 years, albeit at a pretty low dose. Only a third of patients manage to discontinue pred in 2 years.
The idea is to taper slowly until you reach a dose where you notice the beginning of symptoms returning. Then you stop and go back to the previous dose that worked well. It doesn't mean you won't get lower - just not at that point. The activity of the underlying autoimmune disorder seems to decline over time and I think it waxes and wanes, like a sine wave. When it is waning you may get to a lower dose, only to find the symptoms reappear a bit later. Over time the peaks seem to get lower and lower until for many people they stabilise at a low level and they are able to stay at a steady low dose long term. As I say, for a third of patients that will happen in 2 years, but a lot of people need pred for more like 4 to 5 years by the time they have finished tapering.
It isn't uncommon for patients to be fine for months at as little as 1 or 2mg but when their doctor decides the PMR has gone and persuades them to taper to zero the symptoms return within weeks or months. They haven't relapsed as such, the disease activity was just very low. Prof Dasgupta from Southend told us last summer he often keeps patients at 2-3mg long term as it reduces the risk of relapses - which I think is a tacit admission that PMR lasts a lot longer than the 2 years they keep trying to tell us. There are increasing numbers of studies confirming that - especially the 1 in 3 being through in 2 years or less.
Im so grateful to you for your considered response. Thank you.
As far as I can remember I began feeling symptoms around 6mg. They have continued to worsen. The only reason I continued to taper 1mg monthly was my Rheumatologists suggestion that the symptoms I was experiencing were nothing to do with PMR anymore, but just my adrenals firing up again.
There are a lot of rheumies who will take that line - but the fact the symptoms have worsened adds to my suspicions because what you describe isn't really typical of poor adrenal function. However - your rheumy is also being rather cavalier in not telling you to slow the reduction down until adrenal function has caught up and/or sending you for a synacthen test once you were down to 3mg or so. If it is adrenal insufficiency it is potentially serious and could land you in an emergency situation should you be put under stress - illness, trauma or emotional stress - if it were not recognised. Either way - I think you need to see your GP who may be rather more au fait with the joys of PMR and tapering.
Out of interest, would you imagine that I would likely be better off increasing my Pred slowly, to see where the discomfort eases? I have a strong sense that the GP will advise that I go straight back up to 20mg. Any thoughts on that?
You don’t need to go right back up to 20mg, that’s OTT.Usual suggestion for a flare is add 5mg to dose you last felt ok, stay there for 5-10 days then drop back down to just above that dose.
If you creep up slowly it may take time to find dose required, better to zap it will a higher dose, and drop back down.
So in your case would suggest 10mg, you may get away with 7.5mg - might be worth trying that initially, but you need to ensure all build inflammation is under control.
If you do have to go to 10mg, you can then drop back down to 7.5mg for a month then start tapering again.
As others have said symptoms rule! In your case it could be too little Pred for your PMR (as you’re less than 2 years in) and Adrenals struggling - a slow taper will help both aspects.
I doubt 20mg is needed really- but I wouldn't creep up, that can take ages and you never really get comfortable. I'd probably try a couple of days at 20, a couple at 15 and down to 10 and stay at 10 until I felt comfortable. If you are confident that 6mg was where it went pear-shaped then you could drop down to 7.5mg as DL suggests and then work from there with a really slow taper. That won't have compromised the adrenal function either if it had returned.
Thank you. Dr has just suggest to go to 5mg for next 2 days, then 10 if no better. If I’m still bad then to contact them again. This will establish if it’s adrenal insufficiency or PMR. Maybe I’ll try 7.5 before I go to 10, if necessary. It will be a relief to feel better but it scares me to think about what my body us actually going through beneath the masking of PRED. We are all in it together though hey? Thanks so much for being there today. You’ve been really kind x
The trouble is there is a sink of established inflammation - it is rare that patients get the miracle result in hours even at 15mg. That's why I suggested a few days at a higher dose just to spring clean so to speak.
Thank you everybody here. My Dr has just suggested i go to 5mg for next 2 days, then 10 if no better. If I’m still bad then to contact them again. This will establish if it’s adrenal insufficiency or PMR. He’s also left me in no doubt that I am extremely high risk with Covid. I do not feel well enough to receive a vaccine at this time and he agreed with that too. I’m so happy to be an active meditator!! Thus forum is a Godsend and been a huge support for me today. ❤️✌🏻
This may sound a bit left field but severe low back pain can be a sign of trouble with the abdominal artery that can arise with Large Vessel Arteritis/ GCA. It may well be worth pressing for tests such as an ultrasound scan an Aortic Scan, maybe an MRI whole body scan. This is to ensure that your PMR has not morphed into another type of Vasculitis. It just reminds me of my case and this turned out to be what was happening.
Just an update. I followed Doctors orders and tried 2 days on 5mg. That made little difference so I followed that with 2 days at 10mg. Yesterday (Easter Monday) my stiffness had significantly reduced but my back was still sore so I decided to try 2 days at 15mg. This is day 2 at 15 and I have woken with the same soreness in my spine so I will be talking again to the doctor.
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