Flare ups

For me, at first, the stiffness and pain were hard to distingush because it hurt so much to move.  

However, now the stiffness can occur without pain. It is like walking in hip-deep water, having to push hard to make the limbs move.  The movement is slow- I think of one of my favorite animals, the three-toed sloth, as I reach slowly for something.

 

I've been trying to figure out why I find the bottom step of our front steps so hard to climb.  The rest are fine, as is the indoor staircase.  So a careful inspection reveals the concrete slabs forming a short walkway at the bottom have settled and that bottom step is now probably nearly three inches higher than the others.  Just enough to make me need to use my arms to haul myself up by the railing.  

I find even an inch is enough to make a noticeable difference to being able to manage stairs/steps, the shallower they are the better. Family have a new house in the south of England where the stairs to the first floor are one step less than would be good to allow enough room for disabled access (for a large goods vehicle it looks like) to the downstairs toilet. This means each step is about half an inch deeper - and I struggle up them The next lot, to the top floor are fine.

Strange isn't it?  A few years ago I never dreamt of taking stairs one at a time, but always leapt up them two at a time to the admiration of others!  

Oh yessss, I remember running up stairs and having my limbs be nimble and free of pain ... seems like another lifetime now but only three years ago!

Great as always!

Right now I am staying at 9m after a severe flare trying to taper from 7-1/2 to 7 using the DSNS method. After 7 weeks on 9m I am so comfortable and being reasonable with my activity level...Why would I taper at all?

only reason would be that I will see my rheumatology next month and he will not like this! I need the 9m! Thank you, Eileen, for your constant expertise😊

If you can't get down to 7mg without flaring - you can't get down to 7mg without flaring! It's a pretty simple equation. Your rheumy may not like it - but it isn't his pain is it?

My local specialist wanted me to 10mg by the end of the summer. 8mg would be better he said. But he won't force me to reduce and I've done the first bit confortably. Just about 9.5mg now - and I think it is going to be OK. Fingers crossed...

You have the best attitude Eileen!...you have been at this so long...and you were so low on the prednisone too, then a flare?? If you would write a note to my rheumatology I would appreciate it😄 Hope you are stabilizing. I wish I were as expert as you at knowing if the taper is working...even the DSNS method.

You know the taper is working if you drop your dose and have no return of symptoms and no steroid withdrawal discomfort/pain. It's that simple. I can't make it any simpler!

If you drop by 1mg and the symptoms return, you go back to the previous dose and try again - but with 1/2mg. If that doesn't work - the previous dose was the right place to be. You have to keep trying a small reduction, otherwise you'd never stand a chance of getting off pred but you can't force it and you can't reduce in too big steps or you will have returning pain for one or other reason. 

Hi, I have been dealing with PMR for about 3 1/2 years now and after a few flares had finally got down to 6mg Pred and using DS method looking to come down to 5mg.  However my mum was diagnosed with terminal inoperable cancer about a year ago and died 4 weeks ago.  Thought |I would be ok but increasing pain and stiffness in arms and legs suggest i should go up again with my dose but by how much? My weight is out of control and I am concerned about the effects of the drugs I am taking.  Should I hold steady at 6mg and see if things improve? I am in need of advise as I am going to see my Rheumy next week and we don't get on very well sadly 

I'm so sorry to hear that - it must have been a horrible year for you and you have done amazingly to be able to reduce as well.

The stress of your mum's death is bound to have had a bad effect - PMR and stress make very bad bedfellows I'm afraid. It's impossible to say how much more you need - it's possible it would only be a mg or so, so maybe try that.

Have you tried cutting your carbs to try to help with the weight problem? It does have to be pretty drastic but it has worked for a lot of us. I lost 36lbs while still on pred above about 8mg, starting at 15mg. I've put a bit on this summer - too many holidays/trips where I had to eat was was put in front of me - and now it's time to get my head in gear about it  

If you have problems with your rheumy - how do you get on with your GP? They are even more important really if you have a difficult rheumy and it is they who write the prescriptions after all.

Thank you so much for your quick reply and advice.   I will try going up 1mg tomorrow and see how I feel and also look at my carb intake.  I was lead to believe that there was nothing I could do about my weight whilst on steroids so your news is very heartening!  If I can lose a little I know it will help with mobility and self esteem.  It will also help me feel in control of something : )   My GP is lovely but knows little about PMR hence the referal to a Rheumy.  My first appointment the Rheumy decided that I had been misdiagnosed and put me on a 'nose dive' reduction programme from my steroids which left me in an awful state!  My next appointment was with one of the specialist nurses who couldn't believe what had happened and said that all blood test and symptoms were classic PMR and she put me straight back on a much higher dose of steroids and I have been on my own ever since.  Thank goodness for this forum and all it's advice!  I do like to be as well informed as possible before each appointment now so that I don't immediately do as I am told just because the doctor says so but can discuss my treatment.  Thank you once again Eileen for your support of us all. 

There are several people around who have lost weight or avoided weight gain by cutting carbs. My daughter is using the slimming world programme - joined once to get the rules, doing it on her own now! She has lost about 8kg I think but has now got stuck. A couple of others have used other slimming clubs successfully. It is slow but it CAN be done.

Shirley, one of the things which finally got me to a doctor who could diagnose PMR was a calamitous loss of weight.  I felt like I'd fallen off a cliff.  So I started out on the pred journey looking,as one of my friends said, like a refugee from a drought zone.  She was exaggerating, but.... The thing which has meant I never put back any of the lost weight (I did put on a few pounds but with increased exercise they've gone again) was fear of diabetes so I dropped virtually all carbs, expecially the refined wheat, and all sweets except for treats, like dark chocolate, mmmm.  I found really quickly that any increase in appetite was curbed by my habit of grazing.  So I eat a good breakfast, high in protein now rather than carbs as it used to be.  I have a snack at elevenses, usually a kind of chips (crisps) made from beans instead of potatoes or corn, a small lunch, again with no grains, another snack at tea time, usually nuts.  A healthy supper which usually includes a good source of calcium and often rice or potatoes, and another snack, a cereal substitute based on seeds, with milk, at bedtime.  Because I am thin I try to have high calorie snacks, but I imagine even for people trying to lose weight the healthy fats found in nuts and seeds could be very helpful in satisfying appetite.

When I was diagnosed 9 months ago I went on a low carb and low sugar diet losing a few pounds quite quickly as I researched on the web how to keep weight steady when on steroids.  I am always very careful and haven't put the loss back on although it does take quite a lot of discipline.  I also find now that if I do eat anything sweet when I am out and it is tricky to refuse, the next day I feel really awful, drugged up and achy.  Afer a day of feeling rotten and back cutting out the sugar, I then feel much better.  Hope this tip helps.

Thank you so much for your reply. I feel quite heartened and am determined to make a start and get some weight off. Just wish I had k own this at the beginning but hey better late than never!

Sorry to hear of the loss of your mother. What a difficult time you have been having on top of the PMR. Hope a little extra pred will help get you through.

💕

Thank you for your kind thoughts.  I have gone up by 1mg this morning so I will see how it goes .