Do side effects come and go?

Thank you Linda!! I'm glad it's not just me, I seem to have all the same problems as you!!! Xx

Linda, telll me please with how much Prednisone did you start in January?

I actually was on 40 mg in January becaue of an excruciating flare. I could not get out of bed because of terribly inflamed back muscles.

 I am down now on 15.  My neck is still kind of swollen, hamster cheeks.....the works!! :-)  I am still tired and do not walk well because of pain in buttock and back at times.  I will try Bowen therapy for these problems.

It is starting to get better.  When I was on 20 mg I had pimples in my face, and my right eye had a blood clot.  

I am looking forward to more slow reduction so that I will look "normal" again within time.  I feel for you - I understand.  My situation is the same.  Good that we can converse with fellow sufferers.  All the best, Erika

Linda, I am on 15 mg. and I am experiencing the same 'coming and going' of side effects that you describe.  I never know what kind of a day I will have when I wake up in the morning.  But I must admit I am getting used to the uncertainty of each new day and so the uncertainty does not upset me as much as it first did.  Thank you for sharing.

Some of the things that are put down to pred also happen with PMR itself. I had PMR for over 5 years pre pred and the fluid retention and puffiness as well as other things all happened to me then - definitely not pred. As a result it has been easier for me not to blame pred for everything, it was there before.

Fatigue especially is something that is far more likely to be the PMR, or rather the underlying autoimmune disorder, and the pred has no effect on that at all unless you are on the high doses which some people find gives them a "high". That is why we go on and on about resting and pacing - it remains essential as the pred dose drops. If you feel better on one day you unconsciously tend to do more - and the result is fatigue. It may not be the next day but it mounts up and finally your body says whoa - cool it!

Side effects come and go and seem worse on any dose over 16... am now cautiously down to 13 today and back to old dose of 14 for a few days. Hopefully no new side effects occur. It's usually when I get to 9 I have problems and have to start back from 20 again. anyway hopefully this time I have been slow enough not to cause a flare. I believe the exhaustion and fatigue is autoimmune as I have had this with several conditions over the past 15 years. I dont think it is lack of energy... more lack of motivation without pain. Theawful feeling around my middle and waist area where I cannot seem to support my body's weight with my abdominal muscles around 3.30-6 pm is wierd....and a real nuisance when I have work to finish.I am finsing a great affiliation with my old tortiose... extreme conservation of movement but plod on at all costs until its done. The other thing I have discovered is that a cat purring on your lap is very good for restoring muscular strength. Apparently the Egyptians realised this... they even believed that a cat purring in a room with a dish of broken bones would make the bones reunite and become whole....its true that cats broken bones heal incredibly quickly  far quicker and more successfully than any other animal....There is always something in these old tales and the older they are the more likely some useful study can be made. The resonance and the frequency of purring is very beneficial. Especially for bone healing, muscle restoration and heart health. The more I research the problems of PMR the more I learn about a lot of beneficial therapies that are free and all around us. The one thing I hate most of all is the sudden sweating from my head which pours down my face and into my eyes when I am working. It does not always happen and is very unpredictable but also very embarrassing.

Hi Linda, I was diagnosed November past and put on 20mg of pred.  Currently I am on 10mg and so far so good (I mean no flares).  But the side effects I still experience but to a lesser degree.  I have less hot flushes, water retention well I don't know about that, muscle tone has improved.  I can only do one thing in a day ie., make dinner.  If I go out shopping, that's all I can do, (my son will make me something to eat).  He packs the grocerys, loads them into the car, unloads them and then puts them away.  This condition is very limiting for me as I have always been a very strong independant lady.  Having said that, there has been a good improvement, slow but I'm not complaining.  Good luck on your journey.  Regards Pat

I sure know what everyone is saying about the being wiped out on top of the PMR I have spinal stenosis and am in pain with that maybe it will get better when I can get rid of the boot I have to wear because of a torn tendon in my foot I have 3 more weeks in the boot and pray to God that I don't have to have surgery that would mean another 8 weeks in the boot don't think I can handle that. Between everything I feel so usless thank God my mate is understanding I am so greatful for this site and the comrades I have meet who are in the same boat as I am