Today I taper to 9.5 from 10. (Had to phone doctor yesterday as I realised one box of 28 X 1mgs was going to disappear rather quickly....a different doctor to my usual has given me the max number of boxes plus more 5's and thrown in a box of 2.5 - result!)
Good news is my tinnitus has disappeared! Friends are telling me how well I look. My sleep quality is better although I only have 6/7 hours (used to get eight to ten hours pre PMR). I've lost weight (full fat, low carbs etc). I don't feel like bursting into tears at the drop of a hat and I'm no longer prone to regular outbursts of anger. The pharmacist commented that my chelitis has gone (yes, tea tree oil and a nightly sudocream beard plus daktarin in the morning, combined with sugar free diet have eliminated unsightly face rash nestling in with steroid beard and moustache).
I still have my extra fatty lump around neck and a tendency to pull muscles (although am extremely careful), so as advised here I always rest and pace myself. I've had a pretty stressful time of late but in spite of it all I am feeling OK! I am sure the sunshine is helping. I wish others my good fortune. And now I will soldier on and march towards the 7/8 level praying I get through without any flares. Feeling hopeful!
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Pongo13
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Well, that’s fantastic! “Nestling in the beard” made me chuckle. Mine started to reduce below 10mg so I look more like a teenager hopeful of being able to shave soon rather than his dad.
Can I suggest that rather than “march” to 7/8 you tiptoe gently? It is easy to think, full speed ahead, when things are going well. At 7mg things can get a tad choppy with a neither here nor there situation with not quite enough Pred to keep things going all day but not enough to get Sleeping Beauty (aka adrenals) out of bed yet.
I shall take a leaf out of your book then as I’ve been faster than that and done 5 to 10mg in 6 months. Needless to say I’ve felt a tad peaky at times. Not dropping below 5 until at least my Synacthen test next month.
I've just started on the road to 6.5mg today. I had a few hiccoughs during the year but just accepted that it was ok to take that time as long as I was moderately ok. No mention of a synacthen test here even though I am extremely weary at times. I have been sent for Ferritin levels though, we'll see what that brings. Let us know how your synacthen test goes.
Only I had 1 and 5 uncoated 2.5 coated and like you thought about using them to reduce .However advice was as the coated preds take longer to work I may end up having problems .
So to be on safe side I took a 1x5 cut 5 in half to make 2.50 and took 2x1
Great to be getting to lower doses long may it continue
Last month l went for my Prescription & 2.5mg coated Pred were on the list & the Pharmacist said they only had uncoated 2.5mgs so that was a new one on me but interesting when reducing.
I particularly wanted coated as I’m trying to eek my dose out over the day (Adrenal Issues) so they arrived the next day.
It was certainly a new one on me, I’ve been having 2.5mg coated for years. Maybe the manufacturers realised there was a need for both & 1mg coated are available now too!
Thought I'd double check packet and it says "gastro resistant" but whether it is coated or I coated I'm afraid I couldn't say. I must be missing something. Thoroughly checked all packaging.
Tapering from 9.5 to 9 and most of the way there, well done to you and thanks to you and SnazzyD for the chuckles. Cheered me up this morning as I’m ‘home alone ‘ today and was feeling a bit down. Pleased you’ve got your pred sorted I sometimes wonder if some docs missed a lot of their maths lessons. Onwards and upwards tiptoeing gently. Best wishes.
I'm also tapering from 9.5 to 9 but am two weeks in and have woken up very stiff and in A fair amount of pain , have fingers crossed its A blip and not A flare !
I’m using DSNS method with fingers crossed, so far no problems. Will hopefully be down to 9 by this time next week. Very slow but had a massive flare using rheumy’s method, he is now quite happy to let me do it my way. All good wishes.
Sorry you are having problems, I was stuck at 10 for what seamed like forever, very frustrating. Maybe taking the higher dose for a few days might help are you sure it’s not just pred withdrawal? Lots of hugs and some 🌻 from the garden. Best of luck.
What is DSN'S? I'm dealing with my PMR by myself. Haven't been referred to Rheumatologist, and haven't seen a GP for nearly 3 months. I've been tapering slowly and now down to 16 mgs a day. Mostly pain free, as long as I don't do too much. Waiting for biopsie results for Barretts Oesaphagus, and will then tackle GP about it all.
It is a slowed reduction approach that helps to avoid steroid withdrawal pain and dicomfort and also makes it easier to identify the dose you are looking accurately: the lowest dose that manages the symptoms as well as the starting dose did. Lots of people have used it and got to lower doses than they were able to using more usual doctor-led reductions which are far too often too fast and don't take the individual patient into account.
Glad that you are doing well. It is important to make note of the small signs of recovery. We are a very long way from how it was in the beginning. Your lively account made me smile ( not an easy feat these days).
What a lovely cheerful post. Glad things are going so well for you just now. 😊
All sounding very positive Pongo, glad you’ve an assortment of tablets, so you can make up a reducing dose as needed! The Sunshine is good for us all 🌞
Keep us posted & remember the tortoise & the hare!
Interesting that Pred is available in 2.5mg. Today is my first-day reduction from 14 to 13mg daily. Hopefully, this will be trouble free and I have allowed myself a 10-day window for my system to settle down to that level prior to my trip. Obviously, I wil be taking extra with me to deal with any potential problems. Onwards and Upwards.
Well done you....I can't wait to get under 10mg im on 12mg at the moment from 60mg since last August. I'm reducing by half mg at a time every 4 weeks or thereabouts. Hope you continue to keep well and reduce even further. Good luck.
"Friends are telling me how well I look". This is wonderful and makes you feel that you are well on the road to recovery, but the 'tip-toing' (below) is very good advice. From experience, steroids propped me up and I went back to work, and everyone commented on how well I looked, and it wasn't long before the expectation that I was back and could cope with all that I used to deal with started piling up - and then I flared!!! Expectation management, primarily of yourself but also of those close to you, is really important. We do look better - because Pred does that to a certain extent, and we are far better than we were, but recovery must be in stages and those nearest and dearest are the very best props for getting you through all this. I wish you all the very best, but please take good care of your self on this (overly long) road.
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