Diagnosed with PMR late Sept 2021

[Maestegmamma]

I was diagnosed with PMR about a month ago. I took 15 gm of Prednisolone for three weeks, and started to reduce this to 12.5gm 2 days ago. Initially the pain and stiffness in my shoulders arms , knees and legs disappeared completely, my mood also lifted and I felt great. During the end of the third week some of my symptoms returned but as a ghostly version of themselves. A slight tightness of the muscles across my shoulders and down my arms, also a tightness on the muscles down the front of my calves. I need no painkillers and it seems better after some slight excersise ( walking). Has anyone else experienced these ghost symptoms? I’m waiting to see if my body can tolerate the reduction in steroid. I’m also really interested in an anti inflammatory diet, so any additional information on this would be much appreciated.

[PMRpro Ambassador]

Have you tried to go back to normal activity because you feel so much better? That is a common cause of returning pain after starting pred and getting a good effect. Being on pred isn't a signal to return to normal activity, all it does is relieve the inflammation and so the symptoms. The actual disease process continues in the background and is attacking your body tissues, making you feel as if you have permanent flu. You have to do your part and pace and manage your activiity to reduce the risk of developing DOMS, delayed onset muscle soreness, the sore muscles you get when you do too much. But when you have PMR your muscles are intolerant of acute exercise and it happens far more easily than usual.

Cutting carbs is the basic start - removing simple carbs and sugars from your diet is already antiinflammatory - and it has the added benefit of reducing the risk of weight gain due to pred and also the likelihood of developing steroid induced diabetes.

[Maestegmamma in reply to PMRpro]

Thank you so much for your prompt reply PMRpro. I assumed this was the cause. I’m slowly getting my head around this disease ( I’m still in shock really) , and your Forum will definitely help me come to terms with my diagnosis.

[PMRpro Ambassador in reply to Maestegmamma]

You have seen the FAQs? They make good introductory reading

[Damson6 in reply to Maestegmamma]

Having come down with PMR in March, I too know what you mean about getting your head around this disease. It certainly is a good thing to be in contact with other people who are going through it. I am trying to be as positive as possible. It certainly isn't easy balancing exercise to keep mobile and not over doing it. I am early into it, so can not offer any advice - only that there are lots of stories of people managing this disease successfully.

[Maestegmamma in reply to Damson6]

Thanks for your reply. I’m so glad I found this site as my doc gave me little info and even my son who is a doctor played it down. I’m slowly slowly realising the impact this disease can have on your life. I’m doing two pilates classes a week and some walking, as I’ve always been active I’ll just have to see what my body can tolerate. It’s a whole new mindset isn’t it? How did your PMR start? Both my husband and I had a virus late July which gave us achy joints especially our hips. His lasted three weeks and then all pain disappeared. Mine seemed to develop into this.

[Damson6 in reply to Maestegmamma]

It came on a week after the Astrazeneca jab so I am guessing it is that triggered it - I have since heard the flu jabs and also viruses like you mentioned can trigger it - just the immune system going into overdrive. I am a physically fit and healthy man in my fifties so quite a blow to have to moderate exercise and feeling like an old man already

[Pongo13]

I started on 30 a day and was on that for a month before reducing. A few years later and I’m slowly reducing to a half a day. Whilst my dr has been good, I say good because I have pretty much reduced down at my own pace and thanks to the info here. Info here is amazing and I trust pmrpro’s advice over my dr! I did sugar free whilst at high doses and no alcohol. The inflammation diet looked sensible but I cannot survive without the ‘nightshades’. Listen to your body! I did Pilates only for a couple of years but now do weights three times a week. This site stopped me going bonkers! Good luck to you! X