Diagnosed in June 2018 with PMR, I have been steadily decreasing my dosage, but having problems at the 9 to 8 mg/day stage. On reading PMRpro's advice "Dead slow and nearly stop reduction plan", I started to look for other plans, and inadvertently via another PMR forum website, came across a link to Sandra Isitt’s new steroid taper web application at steroidtaper.azurewebsites.... , which is also mentioned in the PMRCGAuk website at pmrgca.co.uk/content/steroi...
Such a brilliant idea. It allows you to select from a variety of tapering plans, including PMRpro's, enter a start date, current dosage, reduction drop, etc and then generates a printerable dated calendar.
How did I miss it ! How many others have missed it ?
Starting tomorrow I start my new regime, and hopefully will be able to get the pred down lower!
apttony
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apttony
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Thanks DorsetLady. I guess for me there is so much to take in from this forum, and unless you know what to look for it's easily missed. Should every new member be directed to the 'Pinned Posts' when they register? Or did I miss that too? No critism intended - I just wanted to draw other members attention to it. Regards
No, nobody is “ directed” anywhere - we all stumble along to start with. But it’s always good to try the search button - although that doesn’t always bring up exactly what you want! As you get used to forum you do find more info, but never be hesitant about highlighting anything of interest. There are always newbies on the forum, and we oldies often forget where things are - until reminded! I only remembered because Sandra discussed my plan along with others.
The Pinned posts are those that the administrators think are noteworthy, but of course as new ones are added the older ones disappear off the screen and have to be searched for.
DL - I’m sticking to the plan you posted! I don’t want to tempt fate but so far it’s got me down safely to 2.5mg (from 15) - I have ‘plateau’d’ at 2.5 for the last 2mths, now attempting 2.0 - not sure that the run-up to Christmas is the best time for this but we’ll see!
PS was interested to read of your 70s career in Cadbury’s Flake modelling 😉🤣😉🤣 (your edit wasn’t quite quick enough for my notification......)
Glad to hear the plan is working - personally I’d put off tapering until after the festivities- I always did. What’s a couple of weeks between friends.
As for the 70s ad - a girl has to keep some secrets - or not as the case may be ! 🤦🏻♀️🤔😉
Hi Apt, how kind of you to share this. I had no idea it was there and it sounds an amazing tool. How are you going with the pred? It is a bit of a journey isn't it. Kind regards. Linda xx
Brilliant-and wish you all the best. I’ve had a fairly easy time reducing Pred thanks to this forum but did find the move from 9mg daily to 8mg the most difficult-please go slow whatever method you use.
I have been using those tapers since about 10mgs. They have worked for me and my Rheumy has encouraged me to continue. From about 9-6 I was doing a 36-42 day taper depending on what else was going on with my body and life. I am now at 3, on a 55 day taper. (I doubled up on one three day cycle because of some flu like symptoms I had.)
What kinds of problems have you been having? You did not describe your difficulties.
I certainly have had my share of weird episodes. Late afternoon wobblies started around 9 and really didn't disappear completely until about 5. Also some difficult episodes of emotionality when I felt alien to myself in transition from 6 to 5. My right shoulder has hurt on and off but it has never felt like PMR pain so I have continued to taper.
MY Rheumy has encouraged me to continue to taper to 2 mgs when I've finished the taper to 3. I might spend a month at 2.5. It is a bit complicated since I take Pred at night, an enteric coated, delayed released formulation. Can't cut the 1 mg Pred in half. So I might see how 2 goes and take .5 immediate release in the morning if that seems necessary. Every day is a new day!!!!!
When initially diagnosed, and started with 30mg/day, the effect was so startling - I felt like a new man, and have been sucessfuly reducing since then, until to 9 to 8 mg/day change.
Waking up with both shoulders aching but nowhere near my initial symptons; problems with my eyesight, and having to already replace my 6months old reading glasses; strange red blotches on the back of my right hand; extreme tirdness at times; hot feet . . . . how significant all these are, i don't know, but seeing my GP next week.
The blotches on the back of your hand are probably purpurae or petechiae (depends on the size which they are called). They are due to bleeding from capillaries which are more fragile than usual due to the pred. I just moved my specs up and down my nose - saved a fortune!
Below 10mg can be a point where we get flare ups as we carry on reducing as we did above 10mg. Looks like you need to hang on 9mg for a while. I get purpura the red blotches too, mainly on my arms and very occasionally on my hands. They disappear in a week or two, although they sometimes break and bleed. You are also coming up to the point where the adrenal glands will have to start working again which can really knock you over with tiredness.
My wife has been on prednisone for PMR 2 and 1/2 years now, having started at 15mg. She is currently on a taper that is 11mg one day, and 10mg the next two days, on and on. She is having leg pain when she gets out of a tub, or when she has been sitting on the floor, such as decorating the bottom of the tree, and feeling more fatigue. But she says this is bearable. Her next rheumy visit is in a month. We'll see what the next taper, if any, is suggested.
I had trouble going from 10 to 9mg so went back to 10 for 3 weeks and am now taking 10/9mg on alternate days. This equate to 1/4mg a day. Going smoothly so far. Slowly does it! I also have the petechiae coming and going, mostly on my arms. Marea
I tend to get larger spots than Petechiae and singly rather than in clusters. If I just scratch my arm if it is itching I tend to get them even. Really annoying and ugly.
I used to look like I had had a fight with a wild animal on higher levels, my GP hadn’t a clue what the problem was. Perhaps I should say my GP hasn’t a clue in general. I had hope that the blotches etc would go away but no such luck.
I have struggled to drop from 9mg to 8mg 3 times but hit on the idea of reducing over 1 week - so 63 mg to 60, 58, etc. I am stable on 8.5mg per day at the moment, building up courage to drop to 8 by the same method. Dr prescribes 2.5 mg tablets which helps.
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No critism intended - I just wanted to draw other members attention to it. Regards
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