Polymialgia relief

Hi carol, this PMR business is a tricky old condition. It affects suffers differently and also the recovery rate and response  to the drugs effects sufferers differently. When I was diagnosed I was so smug because I responded to the prednisone so well. However, there is no doubt that if I over did things (I run a holiday cottage business and on changeover day if I've worked really hard the pain was unbearable) then I could be in trouble -pain wise for up to a week afterwards. The stiffness never returned but the pain most certainly did. Also I find that if I get a cold or a cold sore then the pain also increases just for a few days and then it goes back to normal. I've now reached 8mg and think I will have to up the dosage again to 9 mg as the pain and stiffness has returned to my neck, shoulder and hips, not badly at all but just enough to know that it's there. Good luck, tina

Definately sounds to me like you've over done it. It is so hard to remember that the preds will only keep your pain levels bearable if you meet them halfway, rest a lot and pace activities. My pain physio is trying to educate me to take a break BEFORE I start to hurt, as otherwise I am in trouble for the rest of the day! Too much arm movement/lifting and I can't even hold a book to read. Too much bending and my hip is so painful, going up to the loo is difficult. You would think, taking all this into account, pacing myself would be easy but no. I still find myself on relatively painfree days, trying to catch up on stuff thats built up while I've been out of action! I too had a slow reaction at the start of pred and have had many setbacks. It's a steep learning curve when you've always been very active. This forum is a lifeline. Good luck and take care of yourself, Debbie

Carol, do be very careful with physio at least in these very early stages of the disease.  The manual techniques of physiotherapy are contraindicated in PMR.  Only gentle massage, heat treatment and ultrasound are advised.

I sought the advice of a physio when I first found difficulty in walking, assuming it was due to a long-standing back problem.  I ended up in a far worse state, bedbound and travelling to rheumy appointments by ambulance and wheelchair. 

It might be wise for you to return to your GP - you may perhaps need a slightly higher dose.

Some patients do need a slightly higher starting dose of 20mg to really tackle their pain 

Did you have a big improvement in MOST of the symptoms within a week of starting the pred? Like at least 50%? 

If you didn't then your doctor needs to do some more thinking - because without that rapid improvement there has to be some doubt about the PMR diagnosis. There are other arthritises that LOOK like PMR but aren't and which require different treatments. 

"Went back to doc and blood was a little better" - if the bloods are only "a little better" then there is still inflammation present and it is not yet time to start a reduction. 

As MrsO has said - be wary of physio. I was sent for physio a couple of years ago in an attempt to get me moving after another problem. Even a couple of reps of the very gentle exercises she tried were too much and the pain got worse rather than better. And I have had PMR for 10 years - I usually know what I can manage and what I can't. It really does sound as if physio is NOT the way to go for you at present. If you have severe shoulder pain, especially if it is one-sided, then it is more like to be bursitis causing it and physio will only make that worse. Cortisone shots would be better.

The others have all pointed out the fact that PMR comes back to bite if you mistreat it. The pred is managing the symptoms, it is up to you to not increase those symptoms to a degree the pred can't mop up. Your muscles remain intolerant of exercise for a very long time: can do far less to start with, do not tell you you are asking them to do too much at the time and then take a far longer recovery period to be ready to do more. 

 

Hi Carol,

This PMR has a habit of lulling you into a false sense of security.You feel so much better so quickly and it's a relief to feel you now know what wrong with you and it's all systems go from now on, back to normal.

Unfortunately that's rarely the case.

I started on 20mgs in December 2013 and am only now down to 10 mgs and sometimes that doesn't feel enough.I have had to learn to respond to how I feel every hour of the day and stop what I'm doing and rest.

Fortunately I'm now retired and can do that most of the time and I feel sorry for those of you who can't do that due to work or family commitments etc.

I also saw a physiotherapist when my then GP reduced my dosage drastically and my previous shoulder pain from osteoartritis returned with a vengeance.

He just advised me on some exercises to do at my own pace and that worked for me.

I now have a GP who likes people with PMR to use their own initiative where their dosage is concerned.

I'm sorry if this all sounds a bit negative and I feel like I'm bursting your bubble but I'm sure if you follow the excellent advise of Mrs O and Eileen H who are both a fount of useful information you will get to grips with this confusing condition and feel much better soon.Best of Luck. 

Am at long last getting some benefit from preds 15mg recent blood test are a little better so going to 14mg in two weeks .Am realising any excess in lifting , artwork sewing etc certainly brings back symptoms .Am starting Accupuncture next week to help with relaxation as know tension in body is not good .Had good results from having acupuncture for neuralgia .Still get it if in cold wind or tense but having had neuralgia for40 years it has helped enormously .So have faith that this is part of the way forward for me with the PMR relief .Doctor hopes to drop me 1mg per 6  weeks until I am maintained at 8 mg .Thanks for all the support it's a great help