PMR, Prednisone, flare

Will go to 8m right now...see what happens. Will probably take a few days...frustrating. Thank you!

The good thing about getting the inflammation firmly under control, staying there for a while, and then trying a VERY slow taper, you may be more successful with a reduction.

Is there anything else you can do to help your recovery?  Is there any major stress in your life, are you working, or a caregiver, maybe overly active in something else?  I always feel better when I think things are about to go pear shaped if I admit to myself that I'm in recovery from a serious illness, and if I had a broken limb others would also recognize that! 

All good points! My last taper attempt went well most of the way, but I did have some stressful family health things come up...and overdid the time on my feet. I know I can't do that. Hard to control the stress that just pops up...but taking rest time helps. Also, you are right, after 2-1/2 years, the people around me cannot remember whatever it is that is ailing me from day to day!

When it gets to nearly 5 years like me...husband said yesterday, why can`t you do that now?.......nearly found some hidden energy to show him what for, but there wasn`t any!.....anyway just couldn`t be bothered!

We need something that's a signal of disbility, like an arm sling or a leg cast!  Forehead temporary tattoo?

I know what you are saying, I myself get frustrated because I can't do. My husband has seen me when I couldn't walk at all, so he is as awear as i am to my limatations. He has to do all I used to do, plus his normal routine, so I try to ignore any irritation on his part. Friends and family have no idea how hard it is to move and breathe, because they see me on a good day and I look good. Other than the weight I've gained, I look the same, so they just don't realize how stiff and weak my muscles really are.

Oh God, I really understand how you feel Jeanne. It is exactly the same for me. People say, "you're looking well" and I think "heck, if only you know just how bl**dy awful I feel and how much my muscles hurt and how difficult walking is ..."  Before I found this forum, I thought it was all caused by spinal stenosis and disc problems and assumed, because I was on Pred for PMR, that PMR was 'taken care of'. I now realise PMR is likely the main culprit. Weight gain is a problem indeed. Do other people find that Pred makes them eat more? I am finding that a real struggle.

Absolutely...raging appetite...and agree with all you and Jeanne say..dosen`t help all the frustration..I`ve even been told I`m an addict by family, because I can`t lower pred very easily with out pain etc!!....(down to 10.5)

Yes, people around me forget that anything is ailing me. I like Anhaga's idea  - we have to remind ourselves that we do have a problem. I think I will use that scenario - if I was recovering from a broken limb - would I be doing 'whatever' ? It is so easy to get carried away and try and keep up to others.

I didn't realise how weak my muscles were - I had trouble carrying the wine into a birthday party last night

Hahaha - you are seriously ill ?? Was the bottle/glass full? ?? I can't go out at night I find. I am just too exhausted. I guess when it's a birthday party or something special you make an effort. Just wish I would stop stuffing my face. I think PMR makes you so depressed because you can't keep up with others that the slippery slide into over eating is very easy.

People just don't understand because it is not visible Linda. So sorry they said that to you. I had got down to 5mg (second round of PMR) but then the pain started again and my kind meaning but poorly informed doc upped me to 20 again. I had thougth that rather high and perhaps 10 would have been enough, but hey, she is the medic. Now I have the slow drop again, but having read all the good info on this forum, I will take it very, very slowly this time.

Pred changes the way your body processes carbohydrate - which raises your blood sugar level, that results in more insulin being produced and the BS level plunging - result: you crave carbs to raise the BS again. Cutting carbs drastically should also help the craving food problem - and will help use the fat stores instead of carbs to provide energy. Bewareof eating too much fruit and starchy veggies (potatoes, sweet potatoes and other root veg) as they also have a lot of carbs in them.

I dont find that the pred makes me eat anymore than usual. I think because we need to rest so much we put on the weight from being couch potatoes or bed ridden.We start eating i feel through boredom😂😂😂

Thank you very much for that information Eileen. I was fine until the doc raised my Pred from 5mg to 20mg with a flare up and then I became food obsessed, especially sweeter things. Funnily enough, having had breast cancer nearly three years ago, sugar is the one thing I deny myself as cancer feeds off it. However, I do eat masses of fruit (I figure that is a better sort of sugar) but not root veg. I will cut back on fruit and also fresh bread (another love). Hopefully that will help. Exercise is much reduced with PMR and I know that is a problem. Sigh! Can I ask you a question Eileen, I understand that the rule of thumb for reducing Pred is 10% each time, but how long should one be on each level? I was put up to 20mg a month ago (higher than I think was needed) and I am keen to reduce to 18mg asap. What do you think? Thanks Sarah

Eileen, I went from 10 back up to 11 as I was suffering a little with some burning shoulder and hip area pain, but after 4 days on 11 I feel worse. My movement was not being affected before, but it is today. I have the frontal headache back (proved not to be sinus as Dr thought). My hot flushes ?/temperature flushes? have returned, and I had the worst bout of lethergy I have ever had, along with muscle weakeness. I didn't even have the energy to sit, so I just flopped and had to remind myself to breathe in occassionally. This has taken my letheragy to a new low. Is this just a bigger flare ?

https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

There is a reduction scheme in the replies to this post. If you feel OK after a few weeks on a new dose it is probably OK to try another step down - but the slow reduction here makes it easier - or at least, so many people have found.

Difficult to say - but I wouldn't be surprised. But that also means you may need much more pred - and really an audience with your rheumatologist.

No, it isn't as simple as that. Pred itself can lead to fluid retention - even extra water weighs. It DOES increase appetite in some people, it doesn't in others but they still gain weight and deposit fat in the usual places.

Everyone is different - I shall have that engraved on my gravestone...

Thank you Eileen for the information. Much appreciated. Sarah