When to make the next taper?

[Billiebobdog]

I’ve been on 10mg since 12 Nov having spent the previous 10 days alternating between 11 & 10mgs, debating when to do my next taper and how

I still get discomfort between my shoulder blades - only really disappeared for a couple of days in October - but does seem to lay quiet for a few hours in the afternoon. Also some slight ache in my lower back and knees (is that the arthritis though?) generally the pain is at a 3/4 at its worst level. I also get some occasional discomfort in my lower ribs, like they are bruised, irritating but not all the time and not unmanageable.

I also have a degree of moon face (cheek bones are disappearing now)and my hair has changed it’s texture

I also find that I get fatigued most days so do spend time relaxing and try and restrict myself to one, maybe two, activities during the day, as well as walking the dogs for an hour.

Anyway I would like to drop down 9 mg but wonder if I should stay at 10mg for another month and see if the aches reduce further before doing so or just bite the bullet and make the drop and then spend a couple of weeks alternating the dose?

Having said all that I am forever grateful that the pain is at a level that is liveable with, just hoping that one day it does go away.

[DorsetLady PMRGCAuk volunteer]

Not sure you’ve got everything under control yet, so maybe stay where you are for a bit longer - and winter weather doesn’t help. A slower taper and only dropping 0.5mg a time may help when you are ready to reduce - see here.

healthunlocked.com/pmrgcauk...

If you haven’t read this, then have a look through, gives other links to fatigue etc -

healthunlocked.com/pmrgcauk...

And, no rush!

[PMRpro Ambassador]

Maybe a better way f looking at it is not whether current niggling pains get BETTER but whether they don't get worse. There are pains that will return as you reduce the pred dose that are not PMR - it deals with other pains such as OA too. If the dose is slightly too low then the PMR pains will increase more and eventually become recognisable as a PMR flare. That is why we go on about reducing slowly - staying at a new dose until you are pretty sure it is still enough.

[Billiebobdog]

Thank you ladies, I guess I was looking for confirmation that not expecting too much too quickly and doing things slowly was the mindset I needed to be in

And yes identifying which pains I should have and which I shouldn’t can be an interesting challenge!

[HalleysComet]

Thank you for asking this question. It has confirmed for me that, like you, I need to wait for a while longer before reducing further from 8.5. I still don’t know if the aches and pains I get are a resurfacing of PMR or just the usual daily aches for somebody my age. I hate the moonface though. If only there were a remedy for that!

[Bedwell]

My acupuncturist said to stay on 12.5 for the moment till I am feeling better and other pain issues clarified. Colonoscopy clear .. so what is causing low pelvic pain and burning sensation peeing when my urine samples are negative. ????Bladder and possibly dry vagina wall! And the I read about a vulva issue. ! All need testing. In the meantime.. dizziness and bleary eyes..muffled ears.. brain fog!fatigue!!!However ! I do have a great granddaughter.. thanks fir all your good wishes.. haven’t seen her or held her yet as can’t face the drive.. (lack of confidence long Covid)….

And I do have heating and water which many up north haven’t had for weeks !I have a small filming job on Thursday! Quite anxious about that.. but no words to learn.. hope I’m up fir it!

Best of everything to all of you… strangers! But people in a similar boat!!! Thanks fir all your comments and advice! Xxx

[PMRpro Ambassador in reply to Bedwell]

Are you on calcium supplements? Many of us have had cystitis symptoms as a result of calcium grit forming in the urine.

[Bedwell in reply to PMRpro]

No .. lots of other supplements but not calcium.

[Sandidee]

Hello. I am now down to 3 mg per day it has taken a long time to get this far I generally go down by 1/2 mg every 8 weeks well I normally alternate the new dose one day and the old dose the next for two weeks and all being well I stay on the lower dose. my specialist recommended this slow tapering as over the years I have been all over the place with pred ! I too have niggling pain

[DorsetLady PMRGCAuk volunteer in reply to Sandidee]

If you have niggling pain, are you putting that down to PMR or something else? or aren't you sure?No matter how slow you taper if you go below the level you actually need, you go below it. A slower taper just makes life easier to get from a. to b. - but if you still need a. - well you get the message.

You say on your profile you are in remission..not sure that's strictly true, you'll only know for sure when you get to zero and have no symptoms.

[Sandidee in reply to DorsetLady]

Hi. I have pain at the top back of one leg I don’t think that it is pmr I have had it for quite awhile, I also have neck pain which comes on every evening at seven pm I think that my breakfast tablet has worn off so I am thinking of increasing my pred to try to get the pain under control I take a split dose. What a roller coaster of a ride we have with pred. I am hopeful that one day I will be pain free 😊 Have a lovely Christmas and new year 🎄

[DorsetLady PMRGCAuk volunteer in reply to Sandidee]

A small increase is always worth a try…..let’s hope it works.

[Sandidee in reply to DorsetLady]

Thank you. Yes me too

[PMRpro Ambassador in reply to Sandidee]

Maybe try taking the second part of the split dose a bit later? It's a question of extending the antiinflammatory effect,

[Sandidee in reply to PMRpro]

Thank you I am going to try it for a few days and see if the neck pain goes. It’s worth a try 😊