Back to 20mg

Dear Margaret, I am So sorry to hear this, and that the symptoms are so very severe.  Its such a helpless feeling. Hope you get relief soon..

  I have had lots of pain but never to the point of the immobility so many describe.  Prednisone has always helped until now.  I am on 30 and still have 24/7 annoying discomfort in butt and  hamstrings, occasionally  hips and groin.  But I have a new fuzziness/zizzy feeling from my knees to my toes and a constant headache and dull eyes.  I'm going to gradually lower the pred. and just deal with the pain and see if the new symptoms go away.  Very confused. Aravia, 

Actemra and Cimzia seemed to make me worse or had bad side effects.  First time increasing pred. failed.

So sorry that PMR has come sneaking back for you. We're all on this journey to get a low as possible with pred and then it sneaks back in and pushes us back up the pred ladder. I think it can set us back physically and mentally. But we dont really have any choice, do we? Thing is you hopefully won't feel any different going to the higher dose except your shoulder pain will go away and you'll be able to enjoy your cruise, hope you can anyway!

This journey is a real test of character and I feel for your distress and frustration that pmr has come back to bite you. Not there yet myself so can only imagine how difficult it must be but having been fortunate enough to survive cancer  I learnt to accept the situation and take each day as it comes. Easier said than done with a condition like pmr but I do hope you can find a way through this.

Illness is such a lonely place and as you say this forum is a wonderful support. All our thoughts are with you. 

Rotten luck and you must be worrying.about how you are going to manage your holiday. From my own experience I would say take some heat pads for your neck and shoulders - you know, the ones that warm up on contact with the skin. They're soothing. There will be plenty of help getting you getting in and out of the tenders, and limit the amount of walking, especially climbing hills! I also made the mistake of climbing onto a high step by holding onto the wall and heaving myself up so I could look over the parapet at a view. Not worth it!  With company, good food, drink and perhaps sun (!) the break will do you good and be what sounds like a much needed diversion from this annoying all consuming illness. You'll get back to reduction but I'd keep with the 20mg Pred until the pain is back under control, which may be longer than 2/3 weeks. Thinking of you and do let us know how you get on x

Margaret, I just finished a cruise Sunday. I have no pain but frustrated by lack of stamina and getting so winded. I took walking poles which helped walking the long distances required on cruises. I should have used a wheelchair for getting from the ship down to the terminal but had too much pride and I struggled. There were so many  people with mobility devices I'd fit right in. However, all that walking got me feeling much better when I got home.

Sounds about right! PMR is like that!!!!!

Hope it is good enough to allow you to enjoy the holiday. At least you have a sensible doctor.

Frozen shoulders are a real pain!...especially on a sailing cruise. The frozen shoulder is usually a longer term thing, so good idea to up the prednisone and enjoy your cruise😊 You will have time later to worry about reducing!! Have fun..

Margaret, I also had frozen-shoulder and had been suffering with it for awhile, but I hadn't increased my pred.  A few months ago I went to South Africa and visited a local doctor there.  She gave me a cocktail jab of anti-inflamatory and steriod in the bum.  By that night my shoulder had not only unfrozen, but I had no pain at all in my shoulders for a week!  It came back of course, but never as bad as it was.  My shoulders have never froze since.  The pain did increase recently, but I vastly improved my diet and now the pain is much less, with no change to my pred dose.

mark