Taper failure :(

I apologise in advance for my pity party but I'm just feeling really low today. Weekly drops of 1mg failed to get me below 17mg pred so I tried DSNS, but even this caused the pain to return when there were less than 3 days between the higher doses. So I decided to just abandon the taper effort for now and stick at 17mg for a month. After a week all was good again, but now the pain/fatigue is back, despite sticking to 17mg. Things have been unusually stressful as I have been helping to set things up for my son's wedding next week, perhaps this stress has kicked things off? On top of normal concerns, my weight gain has made my mother-of-the-groom outfit tight and I'm sad that my big, round face will forever be in their wedding album I feel I need to increase my dose again, but my rheumy appointment is looming in October and she is expecting me to be down to 5mg max by then (hahaha). That is never going to happen and I just know that she will make me feel like such a failure. If you were me would you stick to 17mg and have a couple of days rest? I'm just worried that if this flare gets worse I might need to increase even more in the long run....or would you just up the dose to get the immediate relief ? Thank you in advance for your invaluable advice.

[51Highland]

I'm sorry to hear that things don't seem to be working out for you Susie. I'm no expert but it seems to me that weekly drops in tapering are way too quick. I am using the tapering programme recommended by the Royal College of Physicians but there are others which are pretty much the same. You might find this link helpful:

pmrgca.co.uk/content/living...

but there are other people here who will have a more useful response. Just wanted you to know that your son's wedding will be the most wonderful day and the Mother of the Groom will look sensational!

[DorsetLady PMRGCAuk volunteer]

Hi,

Sorry you’re having problems, but the Img weekly alerts obviously threw you off balance - as you say in previous posts you were ok on starting dose of 20mg.

Stress most certainly hasn’t helped, and because you felt okay at the start have you tried to live life as normal - no can do!

Would suggest you go back to 20mg - and start again. Make sure 20mg is enough to calm things down, - and then you can reduce by 1mg, but a month not a week!

Don’t know what planet your Rheumy is on, but it’s certainly not planet PMR!

And you are not a failure, she’s the failure in expecting you to follow an unrealistic tapering plan.

Enjoy your son’s wedding, you may not be feeling or looking your best, but you can still enjoy the occasion.

[SnazzyD]

I’ll just echo that unfortunately you can’t carry as normal just because the pain is helped by a particular dose. Reducing during a stressful and very busy period will just fan the flames; frustrating I know . Have you tried reducing at 0.5mg? I always approached reducing as trying to sneak in dose drops without the body noticing rather than telling it that this is going to happen, deal with it!

Have you tried low low carb and low salt eating yet? Even on high doses blood sugar and weight can be controlled by this approach. The face comes along for free I’m afraid but I found salt really made it worse, any salt at all, even hidden.

[PMRpro Ambassador]

Never mind - you are not alone in the wedding photos trap - I was at my worst ever and almost fattest ever when my younger daughter got married and only able to walk on crutches! However - I had just started low carb eating and in under a month the black trousers I had taken "just in case" she objected to the orange outfit had gone from fitting to unwearable how ever much I had needed them! I hid from the photographer ... It was their day, not mine.

But as the others have said, getting ready for a wedding is the most likely cause of most of your problems.

And if she DOES make you feel a failure then get up and walk out. An objective of 5mg by October while living with the stress of Covid was never reasonable.

[Thelmarina in reply to PMRpro]

I echo that. Walking away is a useful option and puts you back in the driving seat. So far the advice from your rheumi has been counter productive and far from the tried and tested tapering timetables available here, approved by medical professionals focusing on PMR! Go for those. And another option is cancelling an appointment and asking for a different rheumatologist! 👍😊

[Hidden in reply to Thelmarina]

I receive great care and support from my local surgery and they’re happy for me to take a realistic approach to pred reduction. Everyone’s comments here make me think that I might be too busy to make my next rheumy appointment, or the one after that....😉

[Thelmarina in reply to Hidden]

Go girl! You can do it! Especially when you have great local support xxx

[Hidden]

Thank you everyone. Great support and advice as always! It has already made such a difference to my mood. Sorry, I'm not usually a self-pitying person. A quick reminder of people dealing with much worse situations tends to whip me back into shape if things start to get me down - somehow that reminder got lost this morning... But it has been stressful with the date being cancelled twice so far due to Covid, so it's got to be third time lucky now! Of course, I know I will enjoy sharing their special day, whatever I look like. But I just know that my dress definitely won't fit if there are any more delays!

[PMRpro Ambassador in reply to Hidden]

If there are any more delays you will have time to lose some weight!

I have just watched the latest Michael Mosely offering - could all have been shown in half the TV time but I wanted to see it so recorded it and jumped the repeated bits each time. Why do they assume we all suffer from short term memory loss???? Whatever - it does show what you can do in 3 weeks if you want to

[Hidden in reply to PMRpro]

I'll definitely give that a watch. I am trying to watch my diet as best as I can, but I know I will be much more disciplined when I have the time and space to focus on it. We currently have our daughter, her boyfriend and their 2 month baby unexpectedly living with us after covid put pay to their original house purchase (fingers crossed that house number 2 will go through). When it's their turn to cook they serve up lovely, calorific dishes that are so hard to refuse. They also like to make desserts and fill my kitchen cupboards with snacks! I will miss them when they go, but I not miss all their food temptations when they finally move out!

[PMRpro Ambassador in reply to Hidden]

Oh dear - my niece and husband were in the process of moving from Surrey to their flat in Uplyme when lockdown for her (cystic fibrosis) caught them literally on the hop! They had to dash down to rescue the chickens and then it was being on tenterhooks for 3 months. But luckily the buyers still wanted it and it went though in the end. Now they are looking down there for something bigger near Uplyme for the chickens, rabbits, cat and dog and them ...

[Hidden in reply to PMRpro]

Good to hear it all went through in the end. Uplyme is in such a lovely part of the country

[borednow in reply to Hidden]

Well, there you go then. It's all their fault you've put on the weight - conscience clear, blame shifted! Sling a glamorous shawl or scarf over your shoulders (reaching down to thighs), head back, big smile and glide, yes, glide into the venue. Oh and increase your pred - 20mg - temporarily and have a wonderful day.

[Hidden in reply to borednow]

Will do! 😊

[SheffieldJane]

Everybody has given you the sensible advice Now for the daft advice. You could try some selfie cheekbones with one of those numerous face shaping products and on-line instructions. Good for the formal photos, even if you wipe it off afterwards. Happiness will make you look beautiful. No point in tapering with a child’s wedding looming. Relax and enjoy it. In 10 years you will like the photos. 😊

[Hidden in reply to SheffieldJane]

Great idea! I’ll give that a go ☺️

[Pixix]

You’ve received some great replies & advice...I’m just here to wish you a lovely time at the wedding & hope all goes well! Cheers, S x PS I am trying to reduce 1mg a month, yes, a month, & it’s not always working, sometimes it’s six weeks, sometimes it’s back up 1mg! Doctor says it’s not a race! Oh, & my weight gain is lousy, too...and I’m baking like I’ve never baked before!

[Hidden in reply to Pixix]

Thank you 😊 It’s clear that I need to take account of life stresses and have a more relaxed approach to this taper lark. After the wedding I’ll try 1mg a month. If that’s too much I’ll try 0.5mg. This really doesn’t come easy to me as I usually successfully approach everything else in life at 100mph! My new mantra needs to be slow and steady wins the race 😉

[PMRpro Ambassador in reply to Hidden]

PMR doesn't do 100mp. Probably doesn't do 10mph either ...

[MrsNails]

Hi Susie

Sorry a bit late in the day to the party, struggling myself.

You’ve been given some great advice, l’d definitely go back to 20mg & when my Son got married l took an extra 5mg in the morning & an extra 5mg about 5pm to give me some get up n go for the evening.

I struggled into my dress, dear god l thought l would burst, l wanted to change the outfit but my husband was heart broken because the dress was so beautiful.

My advice would be, get a slightly larger dress & feel comfortable! If you order something from John Lewis or Debenhams it’s so easy to send it back if you don’t wear it but have a back up just incase. Something Stretchy in Lace always works well, big earrings & a big smile 😊

Keep as Low Carb as you can in the next week, it’s surprising what a few days can do to help......

Just be as well as you can & step slightly back in the photos so you are not at the front, as being at the front always makes you appear bigger than you really are. I hardly had my photo taken at Martin’s Wedding, l’m hoping to give the dress another whirl next year at my Cousins Wedding & l’ll have to have it taken in, I’ve lost weight on the Low Carb Diet.

Best of Luck & Don’t Worry about tapering until after the Wedding.

Enjoy

MrsN x

[Hidden in reply to MrsNails]

Sorry to hear times are tough right now. Sending you a virtual hug.... I hope things get easier for you soon. Thank you for taking the time to add your advice, it's been gratefully received. Also, it's great to hear yet another low carb diet success story. It gives me real confidence that this will work for me too. You're right though, in the meantime a big smile, big earrings and genuine happiness will definitely outshine everything else