diagnosed with PMRA September 21. Reduced by 1mg per month. Had Covid February this year only in bed three days no temperature, tiny cough just felt sleepy. Last two doses I reduced Pred by a half mg per month. Came off Pred. late March 23. I have early morning difficulty in walking but this gets better throughout the day. I have always had aches while I tapered but are manageable. I tell myself the aches are better than taking Pred. I am always tired but feel this may be the after effects of Covid?Or possibly my age at 78.
I notice that after going for a walk with the dog I feel better and am able to walk with an improved gait. I tend to be a little unsteady on my feet when out walking. But exercise makes me feel better.
I am happy to live with this so long as it doesn’t get worse. Also since stopping the Pred. I Get pins and needles in my right hand when I awake in the mornings and sometimes during the day. Maybe a trapped nerve or something else? My GP only speaks to me on the phone if I contact him, his advice was to come off the Pred. without bothering to go down by halves. He actually laughed at this suggestion. Just to come off them. He has refused my request for any blood tests as he says they are not reliable and I could get a false positive. So my question is, do you know at what point I should consider taking Pred. again, and at what dose? Can I get blood tests relevant to PMRA done privately, and what tests should I be asking for?
A lot of questions, but how grateful I am that you are here for us all. Thank you.
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Fetlar73
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It is said that the aches you experience once you are off pred that stay stable are probably due to the adrenal function settling down and that can take up to a year to sort itself out. PMR making its presence felt tends to be increasing symptoms and it can happen up to 6 months after stopping pred if the underlying disease activity is very low - a dripping tap eventually fills the bucket too, just takes longer! The tiredness is also probably poor adrenal function and should improve over time as it settles into better function. However - you are at risk of an adrenal crisis and it is important to be aware of that and carry the steroid card and if you feel really unwell, seek medical advice while still able. If you are really unwell, call 999.
Your GP is a bit of a plonker if you'll excuse my language - telling you to just stop pred was irresponsible and he obviously doesn't really understand either PMR or adrenal function. 1mg can be plenty to suppress both the inflammation of low activity PMR that can then build up again without it and also be enough for you to function day to day in terms of corticosteroid requirement even though your adrenal function is wobbly but not necessarily producing much cortisol or not reliably enough in the event of an emergency such as illness or accident if healthcare providers are not aware of the need for emergency adminstration of hydrocortisone.
A raised ESR/CRP can be due to many things besides PMR - that is not a false positive. Raised markers IN THE ABSENCE OF SYMPTOMS should be noted and repeated to see if there is a rising trend. If it is due to a mild infection or the like they are likely to fall again, if the rise is due to PMR resurfacing then it will continue to trend upwards. On the other hand, increasing PMR symptoms in the absence of raised markers should be a cause for concern and trump the lack of markers.
You can always get a private script from a GP - though obviously yours is unlikely to play ball as he can't charge you for a service he should provide in the NHS! Can you not see a different GP in the practice who knows a bit more about PMR? Are there any walk-in centres in your area? I don't think there is any point asking for bloods without fairly clear symptoms, a greater problem is that the markers can and often do lag behind symptoms quite a bit.
Consideration of pred is advisable if you get PMR symptoms again and they are increasing - and preferably before you get to the stage you were originally. If the achiness is stable, you are probably OK.
In the UK long term patients are supposed to be issued with a blue card to enter their steroid history and current dose and there is also a red emergency card no since too many HCPs were unaware of the problems long term steroid patients experience.
There is probably an entry in the FAQs - link at the top of every thread,
thank you dear DorsetLady we can a,ways rely on you and PMR Pro. I shall monitor the pain factor carefully and try to rest more instead of feeling guilty.
The body heals best with adequate rest and sleep.Whatever you do never stop taking pred suddenly because you feel you can or run out. Very dangerous.I ran out one weekend and did not know how terrible it was.
Now I pay £ 55 a year and chemist contacts the surgery and gets the scrpt, dispenses it and then delivers it to my door.
No more worries.
Pred has been a life saver for me.....and thousands of others. Not just in pmr but many other illnesses.
Diet.... what I did not know is that lack of self control in diet is only partly to blame.
It seems pred affects the brain in some way re appetite.
One may try to avoid carbs and sugars but some of us are fighting a losing battle.
I am now taking chromium as read prednisolone leaches this
from the body,,, in hopes of losing the two stone weight gained since November.
thank you for your reply Fraya32. You have given me food for thought. I agree with you . I must learn to rest more. Re diet I try to avoid carbs and sugars and I also try to make all meals from scratch. So no processed food. If I do eat carbs I use whole meal rice. I seem to gain less weight than eating potatoes. For puddings I eat lots of fruit, a few nuts and three figs per day. Porridge and fruit for breakfast and eat only fish or chicken or veggie meals. It works for me but of course won’t for everyone. I agree Pred, seems to mess with my brain I forget what I am saying mid-sentence. Again thanks for your encouragement. I wish you all good things.
Thank you....I wish the same for you and all of us.
I agree that diet toomakes a difference
Mine is similar to yours.
I alternate porridge and fruit with scrambled eggs or sometimes bacon and egg forbreakfast, poached egg on toast or organic yoghurt . It is hard giving up the toast and marmalade, it seems one can have brown seeded bread but no white.
Lots of raw honey... on porridge, in lemon water, with hot water, ginger and lemons for "covid."
Lemon water and various teas , coffee and hot chocolate are my drinks
..Breakfast like a king, lunch like a prince and dine as as a pauper, often quoted by a lovely lady on YouTube.
I have cut it down to two meals a day.
I take various vits and mins.
Sleeping most nights now after months of little sleep.
One pred in evening and two in morning seems to suit.
Except tonight.
Woke every hour .
Have to sell up and move....so lot on mind. Clutter to shift, papers to burn. Hard for hoarders.
Hope you are all sleeping and dreaming good dreams.
Remember ....it does get better.
I,m going out for lunch today....carbs here i come.
Moving house is always stressful isn’t it.I hope you can muster helpful, family or friends. No wonder you find sleep hard to find. I do hope you found some last night, and tonight.
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Aches and pains but not PMR/GCA
Aches and pains
Actemra and aches and pains!
Aches and Pains and tapering 
Still no prednisolone
