Advise prior to doctors appointment please

Hi Shirley, I just cannot imagine what life would have been like without this forum.  I would have been totally isolated.  I have learned more from the people here than I would have from dr. or rheumy.  The people on the forum are very supportive, have loads of information and nothing is ever too much trouble to them.  I am on my own and I find it difficult at times.  My son lives with me and he sometimes help with things I cannot do.  Hang on in there and life and PMR will get better.  I am more or less pain free and I have reduced from 20mg last November and am now on 10mg from 1st June.  The fatigue is my main thing and not being able to walk any distance without my calves pulling.  I suppose it is swings and roundabouts.  Good luck.  Regards Pat

shirley dont  dispare  you will get  there in the  end   though it is a long  road.   i have been very  lucky.   not had any  side  efects  at all.   i am  now down t 1  mg   for the  second time,  but i must say i feel better at 1mg  thiis time   than last.  i  lowerm  my dose  by  quater   per tablet each  time,   it  has taken me 6 weeks to drop  quater.  i nkow its  slow  but  it suits me.  each time i lower  i take 1  paraceamol  every 2 days   1 week and  feel .good.   my only prob is   bad knees,   but have read on another forum that its a common  thing.  when lowering pred at this  dose.    though i dont  realy think its to  do with pmr.i  have  been on pred  for 3.5 years   at 73   ,  i think its r  which has been coming on over that time   and the  higher doses of  pred  have  been  masking it.

I didn't like the pred side effects. The mental and mood effects. I keep some sort of a balance or trade off between pain/stiffness, activity and side effects.

Sufficient activity so I don't waste away but not so much I aggravate the symptoms. Pacing and not overdoing is key. And changing how I do things.

I tolerate mostly stiffness but occasional twinges in arms. Nowhere near the untreated debilitating screaming pain of 19 months ago.

I've been on 6mg pred / day for a few months. 5mg was just a tad low, a couple of odd things (swollen leg / mild shingles) upset the apple cart. And my usual headache changed its character a bit. Its easy to imaging bad things are happening. The side effects are currently tolerable, almost not noticeable to me.

Reducing pred was a bit of a struggle. Had to write myself instructions and follow them. Lucky I didn't notice any withdrawal pain. I'm about due to reduce a bit more.

All in all I feel I'm one of the lucky sufferers (if such exist) and its all sort of "normal" for PMR.

Paracetamol is equevelant to Tylenol in the States.  Since I had never heard of it I had to look it up so thought I'd pass it on.

Audrey

The starting dose of pred you are given should achieve AT LEAST a 70% global improvement in symptoms within a few days - that is almost a diagnostic criterion for PMR. The aim after that is to reduce slowly and in small steps to find the same dose that will give you the same amount of relief that early much higher dose did. The smaller the steps (i.e. 1/2mg at at a time not 2.5mg at a time) will find that dose more accurately and with less withdrawal problems.

NO, you may not be 100% pain free. NO, you may NOT feel back to normal - but you should feel very much better than without pred. 

Some people are very lucky and have little pain, others are not so lucky and still have a fair bit. I had synovitis and tendonitis as well as muscle problems. The muscles were magically better in a couple of weeks on 15mg, the rest took more like 6 months before I realised one day they had gone. Tendons and ligaments have poor blood supply so don't get so much pred delivered to them.

But the basic idea is you find the degree of pain relief that is going to happen with a higher dose - and then look to maintain it with a lower dose.