My mum has been told her steroids are to be reduced from the current 20mg to 15 next week.
We haven't seen or spoken to the actual Rheumatologist for months and I think she is just going through a general routine that isn't necessarily designed for my mum's case.
My mum has been feeling a lot of fatigue and breathlessness lately, can't get out of the car etc and gets endless water infections. I feel that the drop from 20 to 15 is too much.
I will be mentioning this to my only contact - a Rheumatology nurse who passes my info onto the rheumatologist who then does nothing. Is there anything else I should tell him?
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Jeromekjerome
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In tapering steroid doses in chronic illnesses it is recommended that any reduction be not more than 10% of the current dose. In fact in PMR/GCA patients 20/17.5/15 usually works fairly well but a drop from 20 to 15 in one step is often not tolerated well by patients even if it works well for the RA patient getting it for an acute flare.
Are they really infections (proven by urine cultures) or could it be cystitis (the pain) due to other factors? Pred and PMR can both cause irritable bladder symptoms and so can calcium supplements, especially if she isn't drinking enough. If they really are infections it could be due to the pred reducing her resistance. And pred can lead to breathlessness - but is she being monitored for other problems. PMR and pred don't stop you developing other things,
I got a reply from The rheumatology nurse suggesting the following:
'Dr S. suggested the dose reduction that I relayed to GP, but if your Mum would prefer to reduce more slowly, she could reduce to 20mg/15mg alternate days for 3 weeks and then down to 15mg for a further 3 weeks, this may ease her into the reduction.'
It might but a lot of people find alternating doses that are 5mg different can be rather hard on the system. Why can't he write a prescription - anybody would think the rheumy was paying personally!!!
Is she on plain (probably) white pred or on enteric coated (red 5mg tablets)? Plain pred can be cut using a pill cutter from the pharmacy and enteric coated tablets also come in a 2.5mg dose.
Normal reduction is 20-17.5-15 - but some even find that difficult.
5mg tapers are relatively easy for GCA patents above 20mg, but then they need to ease up. It’s a 25% drop and that is too much, no more than 10% is recommended advice.
Unfortunately fatigue, breathlessness and UTIs are par for the course, but all should begin to diminish as she gets lower.
I was ok dropping 20 down to 15....a flare, however, occurred going down from 15 to 10 at the direction of my (former, awful) rheumy. Ended up having to go back up to 15 for 4 more weeks, then dropped down to 12.5 no problem.
As for the infections, it is frustrating to be more susceptible for sure, for me especially during cold season. I’ve been spared any UTIs.
Listening to your body as you taper your pred dose is key for me (along with my monthly ESR and CRP levels which accurately reflect my inflammation levels....not everyone’s do).
Hoping relief is on the way regarding your mum’s infections as her pred dose is reduced.
I just wanted to wish you both well. I find it reassuring that everything I thought to say has been said and we are all on the same page. Good luck! Do it your way. If she rushes, she might end up right back where she started.
Just a quick reply as l’m heading out for my first Official Outing this morning.
Your dear Mum has so much to contend with that l think the drop from 20mg->15mg is going to too big to be comfortable, as you may know it is generally accepted that we don’t drop long term steroids by more than 10% so that would be 18mg l also think the idea of alternate days 20mg/15m will be hard on her, it can work when your doing it by 1mg but 5mg she will notice for sure.
I was very breathless when l was up on 20mg it was a horrible feeling but that will improve as she gets lower, everything has a pay back but hopefully that will improve but her GP should be checking that out also just to be on the safe side, mine did as he was convinced l had heart failure but l didn’t 🙏🏼
Best Wishes to You & Your Mum 🌺
MrsN
PS you can get 2.5mg Pred plain ie uncoated, they are not often ‘In Stock’ but the Pharmacy can order them for next day delivery. I only came upon them by chance when they didn’t have EC2.5mg & offered me these as an alternative! They are usually a very light yellow in colour & split well for anyone that far down on reducing (1.25mg)
When we get lower, certainly after 10 mg where finding the 10% becomes rather difficult, we use one of the slow taper methods developed by patients. They are found in one of the pinned posts on this page.
No reason why a low taper can't be used at higher doses too, if a person finds tapering generally difficult. Some of us are more sensitive to the dose change than others. Which is why we are all shocked at the suggestion to "taper" by 5 mg given your mother. That's not really a taper, it's a big jump. And alternating by 25% of the dose, although I'm sure the doctor means well, is likely to lead to more problems. Personally I found alternating by a much smaller amount (half a mg) at a much lower dose was too confusing but others have managed.
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