Flared once again at 7.5-disappointing.

[singingloud]

I’ve been diligently working my way down to 7.5 of prednisone over the past 4 1/2 years. I’ve used the dead slow tapering schedule and at 10mg I was only going down by .5mg. By Christmas this year I had made it to 7.5mg but after staying at 7.5 mg I began a large flare in both my shoulders and hips. So I contacted my PA and asked to go up to 12.5mg for ten days.

I meet with him on the tenth day and he recommended I stay at 12.5mg for a month and then go to 10mg and begin my dead slow taper to 8mg.

So presently I am at 12mg but I’m still having breakout pain and fatigue. Could this be caused by our extreme cold weather or the stress of affording to pay for my mom’s care in the Memory Care Facility the past four months?

I feel so disappointed that I’ve had to increase again. I should have stayed even longer at 8mg. Should I stay at 12mg longer than a month? Thanks for your advice in advance.

[SheffieldJane]

Yes yes to your penultimate paragraph. My Scottish father used to say” If at first you don’t succeed try, try, again. Robert the Bruce quote I think.

Your instincts about tapering seem sound to me. I hope you reach calmer waters soon.

The care system is pretty broken and so stressful. They were arguing that my mum was better and therefore her fees were going up, or something equally absurd. She had dementia. The poor darling passed away before they could get the wheels in motion. X

[singingloud in reply to SheffieldJane]

Thank you for understanding. It’s hard not to be overwhelmed by the weight of taking care of your parents. I’m sure I will mentally be better after next week is behind me. Thanks again.

[Hidden in reply to SheffieldJane]

'Six times,' thought Robert to himself, 'have I fought against the English and failed. ' Robert looked at the spider more intently. 'Now if this spider fails again on the seventh attempt, I too shall give up the fight for Scotland. Spider triumphed;Subsequently won the Battle of Bannockburn.

[SheffieldJane in reply to Hidden]

Thank you ‘ it is the attitude we need. stirring stuff! X

[Hidden in reply to SheffieldJane]

Off to look for an amenable spider to see if it can be persuaded to help me get below 14.5mgs!!😜 Back up at 20mgs due to enormous Covid flare. 😤

[DorsetLady PMRGCAuk volunteer]

If you are still having issues at 12mg then no point in trying to taper.. you need to get thing properly under control before you consider that - disappointing though it may be.

Stress and cold weathers certainly will not have helped... so stay put - until one or both can be calmed down... well known fact cold weather makes your body work much harder - even if healthy- and some knowledgeable rheumies say don't attempt to taper in those conditions..

Hope you soon feel better.

[singingloud]

Thank you for your wise counsel. I love the snow but this cold weather certainly is affecting my condition.

Our granddaughters playhouse in our backyard.

[PMRpro Ambassador]

Yes - to both points, Predderman2020 has talked about the stress of caring today although more relating to our heightened sense of responsibility and attention but that extends to trying to find the money as well. The weather changed overnight from bitterly cold and sunny to just very cold and cloudy, trying to snow - and I woke up hurting all over.

Whatever the dose, you need to be at it until you feel OK. You have the message - your dose is 8mg. Don't try to go below it or you may end up getting stuck higher. But with the added stresses of cold and finances you might well need more.

[singingloud in reply to PMRpro]

Thank you for your support and reminders. I was so hoping I could get to 7.5 successfully but my body and life must not be ready to comply. Obviously the inflammation is not mopped up as of yet. Thanks again.

[Grammy80]

I have GCA, not PMR and it took me four years + to get down to single digits along with Actemra...and the boom...other health issues came along and suddenly I was at 60mg. Your attitude and approach seem so healthy...anyone would be disappointed. But here we go again, down the rollercoaster. I'm down to 4mg and my rheumy belies in staying there for a month...lots of good support here for sure.💞

[singingloud in reply to Grammy80]

Even though this is a tough condition, my husband and I do our best to make each other laugh and enjoy each other’s company. We are blessed to have each other even at 70 and 73. I’m volunteering at your granddaughter’s school which is such a fun distraction also.

Soon I’ll be a substitute teacher for the music teacher when he is absent. Better start building calluses for playing my guitar.