Timings

[Holycow2]

I have managed to get down to 5mg which I have been taking now for 2weeks after being diagnosed with PMR 2 years ago. In that time I have put on 11kg! partially due to changing my job from ward based and very busy to a mainly office based job for the probation service. I feel like a whale going from 64kg to 75kg! I have 2 questions being once/if I get off these steroids will some of the weight come off? Also how long should I stay on 5mg? Then how much should I reduce by ?

[PMRpro Ambassador]

You can actually do a lot to sort it now - by cutting carbs drastically, especially processed foods and added sugar, I lost 35lb by doing that while I was still on 10-15mg.day and unable to exercise as I was on crutches because of achilles problems. Some did it as soon as they started on pred and avoided the dreaded weight gain. It is something we recommend to most newcomers.

Some people do lose weight once they get to low doses, but some lose not an ounce until they are off pred altogether. And others find they don't just "lose it" - they have to be proactive and put in some effort themselves.

From 5mg it isn't any different from before - but 1/2mg at a time is 10% at 5mg and is more than enough to attempt. Using one of the slowed tapers to be found in the FAQs under tapering is also helpful. We say, the lower the slower.

[Holycow2 in reply to PMRpro]

Wow that’s amazing! Well done! If I had realised PMR is a long drawn out issue I’d have changed my eating habits sooner. I really do need to change my eating habits 🐷! My mum also had PMR and was started o. 10mg and told to reduce 1mg per week…..I will have to have another look at the slow taper I just find ie quite confusing

[DorsetLady PMRGCAuk volunteer in reply to Holycow2]

Not confusing - just print out both the DSNS and/or my Simple Taper and have a read and see which suits you best -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

..and agree with PMRpro only reduce by 0.5mg a time from on …

[Hidden in reply to DorsetLady]

I've just had to reduce from 4mg to 3mg because the doctor didn't prescribe me enough to go to my next appointment. Oops!

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

That’s not good…

[PMRpro Ambassador in reply to Hidden]

Definitely not good - that is a big drop at this stage. Hope it works OK.

[PMRpro Ambassador in reply to Holycow2]

The DSNS works best using a calendar and a coloured marker pen. On the first day you are tapering, mark it as a new dose day. Then count how many days you want to start at, 4 days is a good place unless you want to go really slowly. So count 4 days of old dose, the next day is a new dose day, Count 3 days of old dose days, mark one day of new dose. Repeat that with one less day of old dose before you have a new dose day. The new dose days get closer together until they are alternate days. Then start to increase the new dose days until you feel confident to go all new dose.

[Hidden in reply to PMRpro]

Thanks! I shall mention this to her when we speak later this week. I hope she's good at writing quick prescriptions because I run out completely the day after we're due to talk. Luckily I seem to be fine at the moment, no thanks to the doctor!

[Charlie1boy]

Hi,

One golden rule I followed throughout some seven years of pmr, was never to start any reduction whilst you are still aware of any of the symptoms of pmr.

You cannot force pmr to go away - it takes its own time. If you do try to force the issue, it will almost surely come back to bite you.

Good luck

[SnazzyD]

Don’t wait for the revolution when Pred stops to lose weight, start the super low carb diet now. It’s not just weight but your blood sugar too that needs controlling. On a low carb diet I didn’t put on weight even when on 60mg for GCA. Since stopping Pred in 2020 I have found that I still need to watch carbs but not to the same extent. Perhaps it is changes in my body due to Pred or 5 years of ageing.

[ithurts1]

Have a look at Michael Mosley's Fast 800 intermittent fasting eating approach. I started it straight away and have lost 2 and a half stone. I didn't follow it exactly rigidly but found it easier than expected to fast over might until lunchtime. I still do that but have reintroduced some carbs especially on busy days or after exercise!s meals take around 10 minutes to prep and no oven needed for many of them so saves you money too!!

Never had much processed stuff......try to reduce them if you can!

[Holycow2 in reply to ithurts1]

Thank you!

[PMRnewbie2017]

You know the saying..."A moment on the lips, a lifetime on the hips".

Never truer when you have PMR. Plus if course losing weight when you're older is hard anyway. I have just shed 14lbs by eating much much less and not snacking. However two meals out over the past 10 days and I've gained 2lbs. !!

[PMRpro Ambassador in reply to PMRnewbie2017]

Weight that goes on that fast is almost always fluid - and eating out has a double whammy as it often involves carbs and ALWAYS involves a lot of salt. Both of them lead to fluid retention ...

[Holycow2 in reply to PMRnewbie2017]

I must admit I have a massively sweet tooth!

[PMRnewbie2017]

And of course a few glasses of wine don't help do they.....Grrrhhh!

[PMRpro Ambassador in reply to PMRnewbie2017]

No - anything you enjoy is going to leave its mark ... No-one ever said life was fair though!

[Orange_2022 in reply to PMRnewbie2017]

Have a small measure of wine in a bigger glass - and, if it's not expensive wine, add some ice? Makes you feel as if you've had more... (and I love my wine). 😁

[Satya70]

I gained 4 kg in 8 months.

Decided to give keto a try after hearing it also helps reduce PMR pain. Being vegetarian it was a bit challenging at first but I’m already used to it and it’s totally fine.

I’ve lost a kilo already after only a week or so. Eating lots of high fat (yummy) cheeses, 2-4 eggs a day, and an avocado a day…all things I love. Also vegetables I like (though admittedly there are lots of vegetables that are too high in carbs to eat).

My pain has been minimal since day 3 on keto. I don’t understand the science but it works.

Btw, was at 9 mg of prednisone when I began keto and have gone down to 8.5 mg now. Aiming for 8 in another 2 weeks.

[Orange_2022]

Hi! I put on 3kg which on a relatively small frame made a big difference, especially as it was mostly around my middle! Rheumatologist did warn me.. ☹️ I lost it through being stricter with myself - cutting out any 'nice to have' snacks and desserts, not eating unless I was hungry and minimising my lunch. (Being mindful we need enough protein and vitamins in our food though - sometimes I put a bit of protein powder into my morning yoghurt).

Lunch now is often miso soup (on the recommendation of a nutritionist friend as it has protein, vitamins and 'can possibly' help with reducing high cholesterol, along with plant sterols - which has worked for me as my 'bad' cholesterol went up quite a bit) and a slice of rye bread with peanut butter or cottage cheese. Enough to kill the hunger until an early dinner... I'm also much better generally now and able to exercise more, plus on a lower dose (6mg) of Pred at the moment, so back to my usual weight and occasionally having a cake or a dessert (but not the sticky toffee pudding with custard!) and dark chocolate.

At my last office we had a number of standing desks which some of my colleagues used - maybe an option for you for part of the day? Helps burn a few more calories if you're very desk- bound.