PMRGCAuk
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Tapering,

Hi all

I have successfully reduced from a starting dose of 15mg pred to 12.5mg for four weeks and am now at 10mg I have had no pain but my legs do feel very strange, sort of tired when I go upstairs and wobbly on the flat. I am thinking maybe I should stay at this dose for 5/6 weeks instead of the four at previous levels. GP advised to stay at 4weeks at 12.5mg which I did. Also I have to organise and cook a Christmas dinner for 64 which a very good friend and team of people will be helping with, Is stress a factor when reducing, any advice would be very welcome. The dinner was arranged months before I was diagnosed. My head still doesn't belong to me am very vague a lot of the time!!!

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Hi Alison,

Lots of people say their legs seem to belong to someone else when they have PMR. As does their head!

Good idea to stay on present dose for longer especially with Christmas on the horizon, even more so for what you’ve got going on. I think you’re very brave, but if you can do as much as you can beforehand, and delegate where you can you will probably enjoy the day, but you’ll be shattered afterwards.

Stress certainly does affect PMR, so you need to be aware of that. You might find that a few extra mg on Christmas Day helps - and just for one day it won’t do you any harm.

Good luck!

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Really appreciate your comments, I had committed to arranging the dinner long before I was diagnosed and have had many offers of help since which is great but I realise it won't stop the stress, its actually at a club that we belong to and is on the 16th Dec so could increase for a day or so then. Have been invited to Daughters for Christmas day. (phew) Good to know other people have the same issue with legs! It's so difficult to know what is caused by Pred and what is PMR isn't it? Biggest part of it all I think is acceptance of the PMR, bit of a life changer. However thankfully not life threatening.

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Legs being heavy and slightly out of control common for me. I have been avoiding but did a short incline last week's and although I had to stop a few times I made it

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Hello Dorset lady I’ve been reading for a long time now about increasing and decreasing and what I would like to ask is do you have to keep going to doc to get. Prescription for steroids and getting his approval on taking a higher dose I can’t see my doc agreeing to allowing them is this just the uk 🇬🇧 sorry if it’s a silly question I’m on 7and a half and wanted to higher them back to 9and for a few days due to the pain coming back lucky eneough I had a few more here but my daughter said what am I going to do next time

I hope you can understand what I am going on about lol

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Hi Rusty,

I can only give my experience, but I think it varies on the doctor, whether that be your GP or Rheumy.

With my original GP (I only saw Rheumy once about 6 months after diagnosis and he wasn’t particularly interested so I didn’t bother to see him again) I saw her every month, and provided I was okay and my bloods were ok we agreed the next taper. We had agreed taper at beginning, but as usual it didn’t quite work out as she had anticipated!

Fortunately I never had a flare. Once my blood markers were increased, and she increased my dosage to compensate. In hindsight I know now that it was stress related, but although I didn’t have any return of symptoms she was very anxious in view of my history to increase the Pred.

After my husband died (reason for the stress and increased ESR) I changed surgeries (this was 18months after diagnosis) and my new GP said I knew my illness better than him and left me to taper in my own time. I organised blood tests, and only saw him occasionally if I had problems or to tell him what dose I was on so he could amend the prescription. By then I was in single figures so I had prescription for 5mg (1per day) and for 1mg (initially enough to take 4per day) .

For some reason I always seemed to have a few spare tablets, maybe because I started at a high dose.

I think if you have a good relationship with the person signing the prescription for you (probably easier with GP rather Rheumy) you should be able to agree from the outset what the doctor is happy for you do, i.e reduce on say a monthly basis so long as you and your bloods are okay, or if necessary increase by a certain dose (say 5mg) if you think you are having a flare.

I realise not everybody is lucky enough to have this relationship with their doctor, and maybe if your doctor is not particularly experienced with PMR he may feel he needs to be more in control.

It might be worth talking to your doctor and see if he’s willing to come to some arrangement where you can ring and ask for an increase in dose if you feel the need without having to make an appointment. You can only try.

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Definitely stress is a big factor, a small quarrel can set me back. I wouldn't dream of tapering with something big coming up like cooking for 64! Well done you and your team!

I also feel weak and wobbly sometimes. I think we get left with a kind of residual muscle weakness with PMR. I was countering that by walking each day with my fit bit on, increasing my steps goal monthly. I was exceeding 10,000 some days. I seem to have lost motivation since I hit a stumbling block at 7 mgs ( can't get lower) my stamina seems poor. I am lucky if I do 4000 steps. It is cold and miserable outside and I think I have reached the stage where my own Adrenal Glands have to start working after being switched off for 19 months. I did feel stronger when I was walking more though.

If I were you I'd follow my instincts and stay a couple of weeks longer at 10 mgs. It seems to get harder from now on. Good luck!

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Thank you.

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Hello sheffieldjane and I do so agree with you on so many things. I think we were both diagnosed around the same time (about eighteen months ago). I also had real problems at the 7mg stage even though I had been walking regularly and resting frequently but I find that stress is my worst trigger. It doesn’t have to be major events like some of the poor people on this forum. Just too many phone calls at once or a friend staying too long is enough. Pathetic but I have to accept it for now. I will work on my character when I am clear of this PMR!!!!! By the way I think you are becoming an “Auntie in Training”. You are giving so much useful and sympathetic advice and it does give “ The Aunties” themselves some time to themselves. Love reading your posts.

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I don't think she is "in training" - she's fully qualified!!!!

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Thank PMRPro that means a lot coming from you! You've helped to produce a lot of informed patients on here and in turn taught doctors a thing or two.

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I stand corrected PMRpro. She is fully qualified.

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I think I would try to find a substitute for your Christmas dinner duties to do the physical bits - you are ill now and it should excuse boots I think. I don't know if you have any problems with hitting the brick wall of fatigue - it was a major problem for me at that sort of stage and even now happens now and again. When it does happen I can do nothing but go to bed and sleep. I simply can't function, even to sit and chat to others. And even now I struggle to get the timetabling right for complex dining arrangement - I who used to single-handedly do an xmas dinner buffet for 30 without turning a hair!

One lady found she had wobbly legs a few hours after taking her pred which then wore off later in the day. Her GP suggested trying taking her pred before bed - the wobbles happened overnight while asleep and no more problems. Maybe worth a try?

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Thanks for that Brixhamhamster. This disease has been a steep learning curve for all of us. At the moment I am majoring on exhaustion and zombie - like states. I get up in the morning promising myself a nap. I know we tend to forget pain and suffering but this feels like the worst bit. I am wondering about my Adrenals, they already took a big hit with Graves Disease. I have made an appointment to ask about the blood test for the ability to produce Cortisol myself - S......... test...Pred head.

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Hi sj. Interesting you've had Graves also. That was the first auto immune disease I had. I wonder how many others have that history. Sorry about your exhaustion. I don't always actually feel exhausted but I sit down to have a cuppa before going onto another job and then come round a couple of hours later. 😳

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Fortunately there is a " coming round" but for me it's the day after a dead day at the moment.

Yes, odd about Graves. I've had it for 30 years. Following Radio- Iodine treatment I have a hypo tendency, also energy sapping.

It will all link up for scientists one day.

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Your doing a fine job on here mate. Thanks

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