Next taper

[Pongo13]

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!

[SnazzyD]

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.

[altywhite in reply to SnazzyD]

I agree Snazzy, it's taken me a year to drop from 10mg to 7mg..slowly slowly...but so far has been worth it!

[SnazzyD in reply to altywhite]

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.

[altywhite in reply to SnazzyD]

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.

[Rose54]

Hi

Can I ask if all of yours are coated

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

[Hidden in reply to Rose54]

Hi Rose

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.

Best Wishes

Mrs N 💅🏼

[Rose54 in reply to Hidden]

Hi

I thought 2.5 only came coated I have one pack but was advised not to mix coated and uncoated.

[Hidden in reply to Rose54]

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!

All helpful, one way or another.

Mrs N x

[Pongo13 in reply to Hidden]

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.

[Pongo13 in reply to Rose54]

Un coated x

[Rose54 in reply to Pongo13]

Thanks never knew thay did 2.5 uncoated will have to ask for them

[CT-5012]

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.

[Hollyseden in reply to CT-5012]

Tiptoeing gently. I like that! 😊

[Rosbud in reply to CT-5012]

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 !

[CT-5012 in reply to Rosbud]

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.

[Rosbud in reply to CT-5012]

Snap always use DSNs and this is the first time I've had problems , virtual hugs to you x

[CT-5012 in reply to Rosbud]

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.

[Rosbud in reply to CT-5012]

No think it's A flare

As I'm two weeks in but will try higher dose for A few days and start taper again , thanks for the sunflower x

[AmberAliona in reply to Rosbud]

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.

[PMRpro Ambassador in reply to AmberAliona]

healthunlocked.com/pmrgcauk...

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.

[AmberAliona in reply to PMRpro]

Thank you.

[SheffieldJane]

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).

[Angiejnz]

Really good news, shows there is a sun on the horizon x

[Hollyseden]

What a lovely cheerful post. Glad things are going so well for you just now. 😊

[Hidden]

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!

Mrs N 💅🏼

[Soraya_PMR]

Had to smile at your ‘stash’ of pills. I can imagine you doing a Secret Sqirrel and hiding them.

[PMRpro Ambassador in reply to Soraya_PMR]

Re Secret Squirrel: DO keep them at room temperature and watch the expiry date. DON'T put them in the freezer as someone did.

[Mstiles]

Congratulations! Wonderful to hear the tinnitus is gone too. I have it, at on 25 mg at the moment, very inspirational to hear your’s has left you!

[Pongo13 in reply to Mstiles]

It must have gone after reducing to 15 but I didn't even realise till now! Like looking in the mirror and not noticing you've put on weight!

[Ta1ch1]

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.

( or down as far as Pred in concerned )

[Lanza23]

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.

[Jackoh]

All looking good Pongo!! So many positives! Good luck with the next reduction

[MarkWin]

"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.

[Pongo13 in reply to MarkWin]

Sound advice thank you.