PMR returned without inflammation?

[Cmmw]

I was diagnosed with PMR in May 2018 and treated with Prednisone with tapering, Methotrexate and umpteen flares until April 2022 when I finally stopped taking the tablets. Gradually the pains returned, but as there were no inflammation markers in my blood tests, my rheumatologist put it down to arthritis. The pains in my legs and shoulders got worse over the months with exactly the same symptoms of my PMR until I found any kind of walking a real struggle (I'm a keen hiker). One day I tried 5mg of Prednisone with immediate relief. My Dr has reluctantly agreed to prescribe 5mg Prednisone for a few months, although his view is that no inflammation means no PMR. My questions are

Does PMR come back?

Can you have PMR with no inflammation markers?

Can your body become addicted to Prednisone?

Is 5mg a day really bad - I am taking treatment for osteoporosis and have already put on a bit of weight...

Thank you for any feedback from anyone.

[PMRpro Ambassador]

Does PMR come back? It does - even after you get off pred, the propensity for the immune system to go wrong remains for life. It isn't common to have it twice but it does happen. SOme really unlucky people have it 3 times. And one thing all of them say is that the various episodes are completely different.

Can you have PMR with no inflammation markers? You can, depending on the study up to 20% of cases are said have normal range inflammation markers. That may not mean they aren't raised in fact - your personal normal ESR may be low single figures, mine is, but it could run at about 18, high for YOU but still "within normal range", "Normal range" is not a range that is applicable for an individual, it is the range of levels found in a very large population of subjects, 10,000 is often the number in a study, which includes 95% of the readings - 2.5% will be higher, 2,5% lower but still normal for them.

Can your body become addicted to Prednisone? No. It can become dependent on it which isn't the same thing. When you are on a high enough dose of pred,after a few weeks it suppresses the production of the body's natural corticosteroid, cortisol, which is essential to life. The pred replaces it. As you reduce the dose of pred to below about 7mg pred, the adrenal glands must start to produce cortisol again to top up the falling amount of corticosteroid in the body. They are reluctant to do so and the longer you have been on pred, the longer it takes. Your body is physiologically dependent on it to function and without enough corticosteroid you can become very ill. But that is not the same as additction.

Is 5mg a day really bad - I am taking treatment for osteoporosis and have already put on a bit of weight... If 5mg keeps you able to function, no it isn't bad - obviously lower would be better. If you are finding you are gaining weight with pred - cut your carbs drastically. That helps reduce the risk of weight gain and of developing steroid-induced diabetes.

[Cmmw in reply to PMRpro]

Thank you so much for your speedy reply. It was very helpful. It is such a joy to be able to walk comfortably again that I think I prefer to carry on with the cortisone at the moment and be able to enjoy life now. You never know how much time you have left in any case!

[dancersize2 in reply to Cmmw]

You story is very similar to mine. My rheumy decided my PMR had morphed into rheumatoid arthritis. I have pred as treatment for flares and at the moment am making use of it and trying to avoid a hip replacement.

[Cmmw in reply to dancersize2]

Good luck!

[DorsetLady PMRGCAuk volunteer]

Hi,

Does PMR come back?

Yes for some it does

Can you have PMR with no inflammation markers?

Yes again -studies have shown that up to 20% of patients don’t have raised markers -and even if you do, they can lag some way behind the symptoms.

Can your body become addicted to Prednisone?

Unlikely, although some doctors suggest you become steroid dependent

Is 5mg a day really bad - I am taking treatment for osteoporosis and have already put on a bit of weight..

It’s considered a low dose, but untreated PMR is not good for you.. so it’s a matter of deciding which is more harmful. If 5mg gives you relief and a good QOL then I’d hi for that.

As for weight, cut carbs

[Cmmw in reply to DorsetLady]

Thank you for your quick and reassuring reply. Since I started back on the Prednisone, my life has changed. No more slouching on the sofa all day. It is a joy to walk comfortably again. I shall live for today and carry on with the tablets, but taper...

[Charlie1boy]

For sure you’ll get answers to your questions. I will just say you did well to follow your instincts and take the 5mg of pred.

When will they ever learn?

Goood luck.

[Cmmw in reply to Charlie1boy]

Thank you for your reply. I've already had a couple of reassuring replies from knowledgeable people. What a great forum thus is!

[piglette]

You poor thing going through pain due to the fact that your doctor was not aware that some people’s inflammation markers do not increase. I do hope they learn from this, so others are not put in the same position.

[Cmmw in reply to piglette]

Thank you, Piglette. He did relent in the end, but wanted me to rule out other possibilities so I had x-rays and scans if knees, hips and back first, and physio. But life is amazing now I can work with very little pain!

[piglette in reply to Cmmw]

Pred really is a miracle worker. I am so glad your doctor has suddenly become so proactive!!

[OutdoorsyGal in reply to piglette]

And a miracle that it’s a cheap generic instead of a fancy new expensive drug. For those of us who live in countries without universal health care.

[piglette in reply to OutdoorsyGal]

Another plus!

[Choco-Holic]

I could have written this post! My journey started in December 18 with very high inflammation (I also had GCA) I tapered as you did with methotrexate. Off prednisolone in May 22 tapering off methotrexate until October 23, then a few months later familiar pains returned and in April I recommenced 5 mg pred which helped to a degree, but then I’ve niggled on with discomfort for a while. I’ve persevered seeing a physio (suggested by rheumatologist) but she emailed my consultant just before Xmas due to the discomfort to see where we go from here as 1mg is no good atm. I no longer have a ‘stockpile’ of spare pred. Like you, my inflammation markers aren’t high this time around which is what threw me making me think ‘could it be something else’ as my medication was always guided by inflammatory markers. I’ve had so much support and welcomed guidance from the experts in this forum which I totally appreciate. Just thought I’d share our similarities

[Cmmw in reply to Choco-Holic]

Wow, amazing similarities! Thank you, I'll tell my rhumatologist at the next appointment. There really are a lot of unknowns about this illness.