Go to a higher dose for a few days?

[HelenDaisy]

I've tapered steadily to 9mg using Dorset Lady's taper since diagnosis in April 2019. For the last week I've been feeling rough for no real reason, but also with the old thigh/hip muscle pain of PMR returning. I'm dreading a flare. I'm not due to see my rhuematologist until June, and frankly I know more about PMR than my GP. (Thanks largely to this group!) Should I up my dose to 10mg for a week and start a slow taper from there? I am particularly concerned as I have a wedding to go to tomorrow and need to at least survive the evening!

[HeronNS]

Given you have an important event to attend, why not go up for the duration? But I don't think you need to do the slow taper again. Assuming you were okay at 9, why not stay at 10 for a few days and if you are back to feeling pretty well again, you can drop to 9 without tapering. Then it would likely be wise to stay there for a couple or three weeks and all being well start a slow taper to 8 at that point. It may "take" on the second attempt.

Have fun tomorrow!

[HelenDaisy in reply to HeronNS]

Thanks for your quick response. I’ll go up to 10 for a few days and then try 9 again. I’ve been on 9 for 5 weeks and to be honest it wasn’t really enough, the fatigue and pain was returning. It’s such a snakes and ladders game, maybe if 10

helps I’ll stay there for a few weeks. Thanks again.

[HeronNS in reply to HelenDaisy]

If 9 already wasn't enough you may find you need more than a 1 mg increase to deal with the flare. but you know you can go up as much as 5 mg and after a few days drop back quickly to where you were good before, no slow taper required! (I recently did something similar at a much lower level, went from .5 mg to 4 mg, for one day, then dropped by 1 mg per day back to 1 mg (not .5 again) where I hope things will be okay for the longer term. So I actually was only at higher doses for three days. You can stay at the higher dose for a week or so and then do a similar rapid drop down.)

[DorsetLady PMRGCAuk volunteer]

Would agree with HeronNS just a few days at 10mg will probably see you through.

Back to 9mg for a few weeks, and then maybe try reducing by 0,5g a time instead of 1mg or stay on each dose a little longer between each taper.

As you get lower, it can become more difficult because once into single figures a 1mg drop become more than the 10% reduction recommended. Ten percent of 10mg is 1mg but ten percent of say 7mg is 0.7mg - so 1mg maybe too much, whereas 0.5mg is okay.

You can either mix and match to get to 0.5mg or buy a pill cutter - pharmacies or online.

Enjoy wedding.

[HelenDaisy in reply to DorsetLady]

Thank you for your quick response! I went bed feeling miserable and now feel encouraged. I’ve been on 9 for 5 weeks and the fatigue and pain has been creeping up. I’ve been hoping it will go away. I’ll try 10 for a few days. I always taper down with 0.5. My chubby face has improved on 9. I hate the thought of going up again

Thanks again.

[DorsetLady PMRGCAuk volunteer in reply to HelenDaisy]

As PMRpro says chubby cheeks or lack of symptoms?

No brainer really.

[HelenDaisy in reply to DorsetLady]

I know, I'm so vain!!!

Fed up with hamster cheeks and a fat belly. But also fed up with pain and fatigue.

[DorsetLady PMRGCAuk volunteer in reply to HelenDaisy]

No you’re not vain, we all felt/feel like that - but these things pass I can assure you.

You want to look your best that’s natural - but you won’t be the centre of attention (not being horrible, but you won’t, the bride will).

I have great feeling for your situation, I was like that at my hubby’s funeral - and I was the centre of attention - for all the wrong reasons.

❤️

[Paperroses in reply to HelenDaisy]

I never liked the fluffy look but I recently lost a lot around my face by limiting salt, drinking more water, and trying to keep on a anti inflammatory diet. I tapered down to 7 mg but had to go back up to 12mg . so far no more fluff.

[PMRpro Ambassador]

Be honest - chubby cheeks or feeling well: which is more important in the great scheme of things? You admit 9mg wasn't really enough - leave it there or, even worse, try further and you run a very real risk of a good going flare.

I would go back to 10mg, maybe a smidgeon more for a few days, and then stick at 10mg for at least a month to be sure you still feel as well as you did before - and then try 9.5mg first. Often it takes 2 or 3 attempts to get through a reduction successfully - so it doesn't mean you won't get lower, just not yet.

[HelenDaisy in reply to PMRpro]

That’s good advice. I’ll pop another now so I’ll be on 11mg for 2 days then 10mg for a month before I try to taper again to 9.5. Thank you!

[PMRpro Ambassador in reply to HelenDaisy]

And be honest too - the fact you NOTICED less chubby cheeks at 9 must also mean they were on their way away before that. Keep a tighter eye on the carbs, especially processed ones and added sugar, and fruit for a bit and you may retain the new slimline hamster

[HelenDaisy in reply to PMRpro]

Very encouraging. I do love my morning fruit smoothie. Maybe I'll add more veg instead. Thanks from The Skinny Hamster!

[nuigini]

Glad you've decided to up it to 11 mg for a few days. Enjoy the wedding.

I too had to reduce by .5 quite early on. I also had to switch from Dorset Lady's plan to PMRpro's DSNS plan at a certain point. You may want to consider this if you start hitting too many of those darn snakes in the game.

[Blearyeyed]

Noticed you said you were feeling worse for no real reason , then told us you have a wedding to go to .

That's the reason.

Even good things give Stress to our bodies and minds , not all stress is negative , it's just any extra activity that our body isn't used to coping with , so preparing for a big event can increase our pain and need for pain relief.

We always suggest that if you have a holiday or big event on the horizon that we shouldn't try to taper during it or just before.

If you pain is increasing , it's as others have said , you may just need that short term increase , even up a bit more than 10 for the event and a few days after to get you through.

Congratulations to you and your loved ones , I hope they have a happy , dry day xxx

[HelenDaisy in reply to Blearyeyed]

You’re right.

And I’ve been super busy lately trying to get life organised prior to getting a puppy! Which will be life changing but in a positive way, after a gruelling year of my husbands cancer diagnosis and treatment. Puppy: If not now, when? 😄.

I’m spending a relaxing day prior to the wedding party this evening. (And talking about stress: the wedding cars didn’t come, and the bridesmaids including my daughter are currently 20 minutes late and in an Uber!) x

[Blearyeyed in reply to HelenDaisy]

Yep , you see you are thinking about it now , that list of both good and negative stress will start mounting up and you will see why your Pain and symptoms may have started warning you to slow down and maybe suspend your taper or increase for a week while you cope with it.

[PMRpro Ambassador in reply to HelenDaisy]

When my niece got married at Kew her brother ordered a vintage Rolls - with no air con or fancy cooling in the engine. The wedding was the hottest day of the year, well over 30C in London, and the radiator got a tad warm so the car broke down because the heavy traffic held them up! So you are doing what we all did that day - but I'm sure you are cooler. Don't think she arrived in an Uber though ... Big bruv did get his money back though

[HelenDaisy in reply to PMRpro]

Funnily enough it’s a wedding in Pembroke Lodge in Richmond Park. Near Kew!!!

[PMRpro Ambassador in reply to HelenDaisy]

But not quite as warn as ours was - really not as enjoyable as it could have been! Do have a lovely time