prednisone taper

[Aqua47]

I finally got an appointment today with the rheumatologist-May 28th. In the meantime, I would like to get off the prednisone, but not sure how to do it. My primary Dr told me to take 10 mg, but I was having some pain, mostly shoulder and upper arms, so I increased it to 12.5 for the past week. I’m gaining some weight, and think I’m getting the moon face. Is it too soon to go back to 10mg?

[SnazzyD]

So, it depends on whether you want off the Pred in order to give the doctor the chance to see your symptoms on full flow or whether you just want a plan to be off it but symptom free. The easy maths version would be 3 months which = 4mg per month, so 1mg per week. I dare say that will be brutal if you have active PMR.

The symptom free plan I suspect doesn’t exist in your case because you have had to increase to 12.5mg recently, so you are on your minimum dose needed to control it now. Even if you don’t have PMR, Pred is still working on whatever it is. To gallop off down the dose ladder now will almost certainly hurt. If it is just that you want to show the doc what it is like to be off Pred any old reducing plan will show that. However, you do need to be very aware that your adrenal function may not come back on line at the speed you want and you may hit that wall when you get below 7mg. If you start to feel deeply tired, on top of the withdrawal you may get anyway, you know you have to really slow down. Typically a minimum of a month per 0.5mg is needed. If you do have adrenal insufficiency and you ignore the signs and carry on regardless it could be completely debilitating at best or life threatening at worst.

Regards the weight gain on Pred, this can be avoided by cutting carbohydrates severely, especially simple ones like potato, rice, flours, maize, pasta etc. Moon face is just a normal but annoying side effect that goes eventually.

[DorsetLady PMRGCAuk volunteer]

Most on here would like like to be off Pred… but not quite as simple as that.

If you have PMR , you cannot just hop on and off it… once you’ve been on it for more than 2-3 weeks and higher than around 7.5mg you have to consider your adrenal function.

A decreased dose is likely to increase pain, you said you upped it from 10mg to 12,5mg because of that, so you must be prepared to have more pain as your reduce and the inflammation from the underlying illness is given chance to build up again.

 SnazzyD has explained about weight and moon face.

[PMRpro Ambassador]

"Is it too soon to go back to 10mg?"

Probably - it is a very low dose to be started at for PMR anyway and PMR lasts a long time, at least a couple of years if you are very ucky. Do you want to have your symptoms managed or do you want to show the rheumy what pain you were in?

If weight gain is your concern, cut your carbs. A lot. Especially processed carbs and added sugar. Limit fruit.

I can't work out how long you have been on pred. I assume you were on it before you joined the forum a months ago? In that case, your adrenal function will be slightly suppressed and it may take a taper over a few weeks to soften the effect of stopping pred.

[piglette]

PMR is life changing, so you may have to change things a little, you cannot carry on as if you do not have an illness. I heard that if you cut simple carbs and gluten you won’t get a moon face. I am not sure how true that is, but it seemed to work!! Also I lost quite a lot of weight.

[pastamaid in reply to piglette]

Has anyone found a diet sheet that supports PMR weight gain?

[piglette in reply to pastamaid]

Look for a low carb diet in the internet. healthline.com/nutrition/lo...

[PMRpro Ambassador in reply to pastamaid]

Do you mean so you gain weight, or avoid gaining weight?

[pastamaid in reply to PMRpro]

Avoid it hopefully

[PMRpro Ambassador in reply to pastamaid]

My favourite low carb advice site is this one

dietdoctor.com/low-carb

It isn't so much a diet sheet as learning which foods have a lot of carbohydrate and avoiding them. There are ways to reduce carbs in sauces and so on but there are low carb recipes all over the internet. For many people not eating processed foods and added sugar and limiting fruit is enough change to keep their weight stable.

[pastamaid in reply to PMRpro]

Thank you thats really helpful. I notice you said you live in Italy, how do you avoid the pasta, I love pasta x

[PMRpro Ambassador in reply to pastamaid]

Low carb isn't the same as NO carb! But I cook at home, you don't have to eat pasta and in fact, although Italians do eat a fair bit of pasta, the majority of their food isn't pasta. It's like thinking all Brits eat is fish and chips.

[Aqua47 in reply to PMRpro]

I changed my diet 5 or 6 years ago to something close to Keto. I wasn’t real strict, but it really opened my eyes to the foods that are high in carbs. For example, orange juice is very high. I’ve not had more than 2 glasses in the last 5-6 years.

[PMRpro Ambassador in reply to Aqua47]

Exactly - a glass of orange juice is the same as about at least 2 oranges. An orange has about 12 g of carbs - 24g carbs in that glass of juice alongside cereal and toast for breakfast and you are at 60g of carbs before the day has even started!!! When I was losing weight while on pred I had to keep to about 20g carbs a day, any more and the weight loss stopped.

Just been someone on Sky News talking about the obesity crisis and she was adamant it is greatly down to ignorance of what is unhealthy and what is in food. I think it is more than that but she has a point.