PMR return of symptoms after steroids ceased

Hi Aileen. I have read that flareups are usual... also I've been told that thete are various outcomes with regards to being on the steroids. Some people are able to come off them completely .. other need to return to them occassoonaly... and others need to stay on a small dose indefinitely. I hope that helps. Frank.

There doesn't seem to be anything "usual" with PMR, unfortunately. 

For  12 months of Prednisolone to  permanently vanquish PMR  is not the experience of many on here. Would that it were!

I have been in remission for the second time for more than four and a half years but I still take nothing for granted. I was first diagnosed at age 67 and it was three years before it went away only to return five years later when it was another five years before I could stop the steroids. Along the way I had to adjust my dose as the symptoms fluctuated.

I don't know the statistics, though others probably will, but I know that there are patients who are on a lifelong low dose in order to have a liveable life.

If it were me I'd go back to my GP very soon and report the symptoms and ask for ESR and CRP blood tests. These are not definitive but if they are raised then your doctor may well advise another course of  Pred. Don't let it have the chance to build up and ruin life quality.

This forum has many knowledgeable members all willing to share what they have learned so do   keep in touch and good luck.

Hi Aileen, had your husband reduced to zero or was he still on a low dosage? To be free of PMR after one year would be very unusual, a new report states 5.9 years (am open to correction) and my rhumy told me one year which I know is completely untrue now from this forum! I would urge your husband go to his go, or better still a rheumatologist, and get blood tests done to see what his ESR and CRP levels are at. Even if they are low, it paints a picture, along with symptoms for the doc/rhumy and his dosage can be adjusted accordingly. When the dosage is right and you take care of yourself, PMR is very manageable, when its not being managed, it makes life very difficult! I hope your husband gets the relief he needs and I hope you remain well too 😊

PMR has a median (average) duration of 5.9 years - about 20% are able to get offf pred in under 2 years but are then at a higher risk of relapses. About 5% of patients never get off pred - but 75% are off pred within about 6 years.

It is perfectly possible that these are due to a relapse - but it is unusual for the symptoms to last just a few days and disappear. But if this is just the early stages maybe a really low dose of pred would be enough to keep him happy and pain-free. 

Hi Aileen, sorry to see that your husband has joined us on our PMR journey. I am a very active 80 years young, two years on my PMR journey. I have had a few bumps, but the information and wisdom I have received a this forum has helped tremendously. Each case and each individual is different, in my case I have been basically PMR pain free since last June. I do not reduce my dosage unless I am PMR pain free. I am using the DSNS taper method and do not rush this is not a race to get off Prednisone. Good luck to you and your husband on his PMR journey, please tell him to think positive and try to smile. I believe it helps! ☺️

Hi Aileen, I am 71 and had PMR diagnosed 10 years ago and was put on a Prednisone treatment plan for nearly two years. I had a relapse late 2016 and just now down to 0.5 mg. If you google research you will see that the treatment lasts for different lengths based on patient progress but one year is the least, most seem to be 18 months to 24 months, and some even longer. Some of what I have read said the likelihood of a relapse increases if the treatment is too fast. You mentioned a GP, I would suggest he see an experienced Rheumatologist who specializes in this disease and its treatment. Some people have Prednisone withdrawal pain after treatment so only a specialist would be able to begin to sort it out and diagnose his condition. Good Luck.