Husband is the one with PMR/GCA, diagnosed mid june and started on 40mg Pred daily.
Currently following a taper similar to Dorset Lady's (I have it charted on spreadsheet) he is currently approx halfway between 25mg qnd 22.5mg daily - a much slower rate than that given by GP in absence of rheumatology backup (rheumatologist died).
When I ask him how he's feeling re stiffness, pain etc the answer is always "Not too bad" !!!
He doesn't seem to be quite so active - but the season for taking his classic tractors to rallies is now over for a few months so his are under wraps not needing maintainance or loading onto/off trailor. Sorting out care of his Miners' lamps does not require the same amount of time in the workshop and weather is no longer suitable for long motorbike rides.
So how do I take this "Not too bad" do you think?
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Nuff1
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I’d take him at his word. It gets more challenging below 10 mgs and as you approach the level at which your Adrenal glands have to start working. He is still ill however and should be pacing his activities and getting plenty of rest. Best if he can avoid stress. Diet-wise he should cut out sugar and carbs to avoid some of the weight gain. Prednisalone is only dealing with the inflammation, not the underlying disease.
Thanks - he is cutting out sugar - caarbs are a bit more of a problem; I've introduced brown rice when we have currry or chilli con carne and the bread I make (machine) is now 50% wholemeal.
Beans now feature more on our menu since he bought a few different dried varieties on a weekly major shop ( I had a stroke 6 years ago and can't manage major shop on my own).
Remember he has a chronic illness. Taking steroids does not make him better it just suppresses the pain somewhat. He still may have PMR symptoms such as general fatigue and also possible side effects from the steroids. PMR is life changing sadly.
It’s very difficult to explain to others who don’t have the illnesses (no matter how loving and concerned they are) on a day by day basis. Sometimes it’s easiest say “not too bad”. For me that’s means - I have felt better, but I’ve also felt worse!
He may feel a bit more “down” during winter months, it does curtail certain activities and can also impact upon our illnesses - we don’t cope well with extremes of weather.
He’s only a short way into his journey, so sorry to be cliched but it is really taking it day by day!
He's Welsh, I'm the one from Yorkshire but he was always intrigued by his F-in-law's turn of phrase.
(BTW The Dalesman oce included a guide for Doctors coming into Yorkshire from further south: the most important was never to ask if the patient was "better")
Sounds like he is being honest with you. You would know he is not feeling so well with increased fatigue and more pain. Hope all goes well for both of you!
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Another D-Day commemoration - a story of hope
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