Polymyalgia rheumatica

Hi Marsha,

I have fibro myself and  the symptoms are quite similar. I have had it for 30 years and I can tell you that you get use to living with it as long as you take the proper precautions and try to keep a positive attitude as you say :D . Now I try to excersice more , I do yoga, and recently I started taking the herb St. John and it has helped me a lot. Also a thing that helps me and I do it from time to time is the acupuncture. So I suggest you to hang in there and try to stay as relaxed as possible, even though I know it can be hard.

I wish you the best on your doc appointment.

Hi maybe this is what I have starting I thought it was because I gained weight but I have lost half a stone and at the gym 4 days a week but still they are painful the mornings are worse when I get up I have started taking glucosamine for them and I am hoping this will ease them. I've heard it's great for joint repair and arthritus.

have either of you tried glucosamine for your aches

Hi 

had an acupuncture session for the first time today i was very nervous when the pins went into my lower back, I flinched with the sharp pain, scared when my left leg and right leg jumped after the pin went into the back of my left knee my left calf was numb for the half hour session not sure if that's normal any way I accepted the  session and the herbal medication with some cough mixture since I also have a persistent tickley cough. See what happens after a nights sleep. Not ready to try glucosamine yet too many things at once 

Usually Doctors treat polymyalgia with steroids on a reducing regime, over a couple of years, if your Dr does, it's amazing how the aches and pains diminish. Hope this is what happens for you.

I was diagnosed with PMR at age 46 and have been on steroids since then varying between 40mgs and 10mgs but have never managed to get below 10. without having really bad pain. I still manage to work but its an effort daily. Glad to find this group.

I'm male and 74 and have suffered with PMR for just over a year.  Have done a lot of research to find out more about my condition as there is not a lot professional research around.  One paper that is very good is from Bristol by Quick and Kirwan found here http://www.ncbi.nlm.nih.gov/pubmed/23240123.

A lot of sufferers have found that their GP's will try to get them to reduce the prednisolone (Steroids) to zero as quickly as possible BUT this is not the answer.  The 'secret' is to reduce by no more than 10% at any time and when you get down to around 10 mg do it even in smaller amounts - half a mg - also give yourself time to stabilise before starting another reduction.  Be careful not to cut any enteric tablets which are usually red in colour, the white 5 mg are OK to cut and with a mix of these and 1 mg can obtain any dose.  One of the best I have come across is the slow and nearly stop method (Thank you Eileen) where reductions are done over a six/seven week period.  e.g. first week one day at the lower dose, second week two days at the lower dose (not consecutive) and so on.  It's all a matter of finding the dose that controls the symptoms at your particular point in time - remember the preds are not 'curing' PMR only the symptoms.  PMR will go into remission when it's good and ready and you will be very lucky to be at this point within 18 months to 2 years - so it's not a relentless rush to get to zero!

The point were you start to get a slight reoccurrence of the symptoms is the point to stop reducing and stay there for at least 6 weeks, if they persist then go back to the point where you were comfortable as this is most probably the maintenance dose that your body requires - this being between 5 - 8 mg).  Your adrenal glands will stop producing cortisol once you have been on preds for a few months and will not start up again hence the reason for SLOW reduction, giving them opportunity to start producing again.

Another 'problem' is the side effect, some have very few other more - alas we are all different.  And without being sexist women seems to suffer more than men.  There are usually 3 women to 1 man who contract PMR in the first place. 

Hope this advice is of use and will help to understand what PMR is and 'control' it.  A good maxim is the Tortoise and the Hare and to learn to accept steroids as a friend.