I was diagnosed with SLE last March and was put on 10mg prednisolone which I wasn't given a tapering plan for. So, I stayed at that dose for 10 months until January when my new rheumatologists took action for lupus nephritis. I was first increased to 20mg at the end of January, then 40mg at the beginning of February following a kidney biopsy. I have since been tapering down, first to 30mg, then 20mg, 15mg, now on 12.5mg (reducing every 2 weeks). The tapering plan my nephrologist gave me says to reduce to 10mg, then 7.5mg, 6mg, then remain on 5mg as a maintenance dose.
I was wondering whether this seems okay. I am desperate to get off steroids, or at least reach the 5mg dose, as I have had moon face and weight gain in my abdomen for quite some time. My legs are covered in stretch marks and I hardly recognise myself (I'm 23, and weigh 60kg now). I really want the moon face to go away!
Reading other people's experiences has worried me about tapering so much after 10mg. In the beginning of January before my new rheum found issues with my kidneys, I tried to taper to 7.5mg and after 2 weeks felt horrible withdrawal symptoms with muscle aches and joint pains which felt different to any flare I'd had. I don't want to struggle with that again and take steps backwards.
My question is, as I have been on steroids now for only 13 months, are my chances at tapering looking okay this time? Or may I feel some effects of adrenal insufficiency?
(I have been on the euro-lupus regime since Feb, with 3x IV methylpred and 6x infusions of cyclophosphamide. I've also been started on tacrolimus, I've taken hydroxychloroquine for over a year, and the plan after cyclo is to also start mycophenolate).
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Hi.ive been on steroids for 8 years now similar issues to you as in I have LN class v .I can't get past 7.5 mgs of pred without everything going haywire.my Rheumatologist has just increased my mmf in the hope it will allow me to drop to 5mgs.you must drop steroids very very slowly no more then 1 mg a month but I tend to follow my body and will drop by 0 5mgs if a 1mg drop is too much.mpongace doesn't go until you come off steroids completely.i hope you are on bone protection and carry a Steriod warning card .I've got to go out now but I can help later If you need anything else xx
Having been at much higher doses this time the likelihood of adrenal insufficiency and a slower return of that function is probably higher. Top endocrinology experts recommend that from 10mg you only reduce 1mg at a time to make that return of adrenal function easier to cope with. Theoretically your current rheumy's 5mg target should be enough to function well on but in practice the effects of low adrenal function start to be felt anywhere from 10mg down - and it includes joint and muscle pain. Unless your rheumy knows differently about another condition, there is also no real reason why you won't be able to get off pred altogether if you go about it slowly and carefully enough - the majority of much older ladies on my home forum who have been on pred for 4 or 5 years and often at high doses are able to stop pred altogether.
The longer you have been on pred the harder that final stage becomes and while 10 to 7.5mg is a common reduction step with pred, lots of people just can't manage it all at once without really suffering from the withdrawal effects. Doing it in smaller steps, not more than 10% of the current dose, helps and on the PMRGCAuk forum we have other ways of tapering making it less uncomfortable by introducing the new lower dose more gradually. But it is likely to take some months to get to 5 - we'd expect at least 6 months.
I wish I weighed 60kg but if you really do feel overweight, then cutting carbs, especially processed carbs and added sugar, should help get rid of the swimring effect and may reduce the moonface before stopping pred altogether if you are lucky. I don't have a moonface - just a chubby one because I'm overweight anyway. It is because pred makes your body store fat in specific places using any excess glucose present in your diet. Processed foods also have a lot of salt - and salt and pred make you retain fluid so not taking in too much salt is also important.
Good advice regarding diet. I managed to keep the weight down despite being on 5mg pred long-term and going through the menopause. I'm not as slim as I would be without all that, but I'm not ballooning.
Hi I've been on steroids every day for the last 18years from 100mg daily at times I'm normally on 5mg daily which I'm told is ok as such a low dose. I have sle amongst other things..
Tapering off as you are is normal hope this helps you. Mick
You have already gone through a lot with your lupus and now having to taper steroids. I think if the nephrologist says to stay on 5 mg prednisone, it is to keep your kidneys from flaring up. There seems to be new research that shows lupus patients generally have less flares if kept on a maintenance dose of prednisone. That would only apply to patients like you with major organ involvement, I think.
I would take @PMRpro ‘s advise about diet. She knows this stuff well. Your nephrologist may have additional restrictions.
I have not heard of anyone having obvious symptoms like the moon face on low dose prednisone. Others may know differently. But I bet you will be much better once you are able to get to your maintenance dose.
It is very personal. For example I wouldn't go down more than 1mg per month once you start reducing from 10mg. The withdrawal effects come for me 6 days after reduction so think longer term to figure out what is the best for you. If you have mornings the worst time of the day some people take half the dose in the evening and half when they wakr up...
As others have said, the key is tapering very slowly. Your adrenals have shut down and atrophied. You must give them time to wake back up and start functioning again. I have tapered off prednisone after being on it for over a year and its a very slow process. Don't be in a hurry because adrenal insufficiency is dangerous as well as miserable. Listen to your body at each step.
For me, adrenal fatigue felt like having the flu. I was so very tired with weak muscles, ached all over, joint pain and depression. Then I took a bit of prednisone- .5mg or 1mg and that made me feel better, so proved that it was adrenals and too fast a taper.
When I got down to 10mg, I agree that you might try to only reduce by 1mg and then stay on that dose for a month until you feel comfortable. After I got down to 5mg, I would weave in the new dose by reducing only .5mg (or less) every other day. Alternating the dose for one week and then going on to the lower dose helped me. I had a supply of 1mg pills and 5mg pills.
I had an endocrinologist who once told me that "the way to heal the adrenals is sleep". It helps get lots of good deep sleep. It also helps to take it easy, lower stress and only gentle exercise.
Eliminating sugar while on prednisone helped me so much. I've tapered pred both ways, with lots of sweets and none. No sugar was so much better. I didn't gain as much weight and tapering was easier, less joint pain. good luck!
I am a bit naughty and tried it myself but there is little doubt if I go below 10 mg my Organising Pneumonia comes backSo it’s difficult as everyone knows on this site there are many side effects. Not least weight gain that on top of an aching body not the best. I got Glycoma and have permanent thrush, but not being able to breath isn’t great either
I have just started hydroxychloroquine so hoping may help boost my immune system
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but if you really do feel overweight, then cutting carbs, especially processed carbs and added sugar, should help get rid of the swimring effect and may reduce the moonface before stopping pred altogether if you are lucky. I don't have a moonface - just a chubby one because I'm overweight anyway. It is because pred makes your body store fat in specific places using any excess glucose present in your diet. Processed foods also have a lot of salt - and salt and pred make you retain fluid so not taking in too much salt is also important.
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