It looks like I'm finally off steroids. It's been a long story of yo-yoing over nearly 5 years. I was switched to Hydrocortisone a few months ago and have now tapered to zero. Cortisol levels are back up to normal and looks like adrenals working again OK. Some pain and stiffness has come back, particularly in the neck, shoulders and hands (which have never hurt before) so will have to weigh up whether I need to go back up to a small dose or put up with the discomfort. I expected the weight I gained (nearly 2 stone particularly a spare tyre around the waist) and the chubby-cheeked moonface would disappear straight away but a few weeks on and not a pound lost. Does it take time? Please tell me it will go!
Losing weight after finishing steroids - is it po... - PMRGCAuk
Losing weight after finishing steroids - is it possible?
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tangocharlie
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I feel as if using my Fitbit to measure my steps each day has both motivated me and made me feel more flexible and in better shape. I am way behind you on 8 mgs. Like you I hope there will be some spontaneous disappearance of my unwanted baggage in the months to come. Not there yet.
I'm intrigued, what's a Fitbit. By the way I hope you're a Blade.
Hi KCRoyals, it is a device ( tiny) that I clip on my waistband, it simply counts my daily steps. Each month I attempt to increase my average. This month by a third. Exhaustion makes some days a write off but then another day I do an amazing 11,000 steps and feel great. People tell me their phone has a similar app. Not a massive sports fan I'm afraid, maybe I wouldn't be struggling if I were.
Thanks, I'm thinking of getting a fitbit.
They are about £50 (ouch) mine is on loan from the Leeds research into PMR fatigue project. When I hand it back I may well invest in one. Like slimming clubs it keeps you at it.
I am certainly more of my activity since wearing mine. I have paired mine to my phone and I can honestly say it has been a godsend!!
You can change your target (steps, water drunk etc) so once you are comfortable you can push yourself a bit more.
Keeps me motivated but I am still unable to lose weight even though my Zumba classes are now 4 times a week!! And still on 5mg.
Be careful about over-dooing it though. When I first started on steroids and got my mobility and energy back I joined a gym, went swimming every other day, went for walks etc because the pain and stiffness had gone. The underlying condition was still there though, and I think I may have damaged my shoulders with the strenuous swimming. I remember being surprised it was so difficult to get out of the pool afterwards as obviously my arm and leg muscles were exhausted.
I could do none of the above anyway tangocharlie, walking on the flat and bobbing about in the swimming pool has been my limit. Pacing is the watchword, hence the gradual increase of the steps. I have not been as disciplined as you about diet. I am a fiend for chocolate and creamy things. Might as well blow up and be happy than blow up and be miserable. 😋
Hi SheffieldJane, I say that dark chocolate is anti inflammatory along with red wine. A wonderful diet!!
With PMR I was never able to get out of the pool unless there were steps - not a ladder, that was as bad! But I couldn't do it at the beginning of the class either so it wasn't exhaustion!
Interesting, same here, as there weren't any steps only ladders it was very undignfied having to ask for a pull or push to get out so I gave up!
I changed gym as I was able to do less and less - and went to one with a warm pool which had aquafit classes every day Mon-Fri as well as wonderful Pilates and yoga instructors. Those girls kept me upright and mobile for the 5 years I had PMR without being on pred! Had they not had steps - they'd have got the hoist out for me!!!!!!
DorsetLadyPMRGCAuk volunteer
Hi tangocharlie,
If you are still getting some pain, which you cannot attribute to anything else then maybe your PMR has not completely gone into remission.
Just monitor things for a while, and, as you say if necessary take a very small dose of Pred. Obviously you don't want to go back on it, but for the sake of the odd mg there's no point in being in pain. Side effects are virtually non-existent at that level, so don't be a martyr!
Having said that, when you come off Pred all the normal aches and pains come back, including some you didn't have pre Pred, so sometimes it's difficult to work what each pain is! Plus it takes your body time to get back to pre-Pred - as I said to someone yesterday after almost nine months mine's nearly there, but not quite!
You might have to work a bit if you still have weight issues, but if you feel better in yourself you will have more energy to do a bit more exercise. I found, like many others, really cutting down on refined carbs etc helped.
Good luck.
I generally follow a low GI/low carb low fat lifestyle and rarely have any sugars or even drink so hopefully it will start to come off slowly, you say it took 9 months. I just assumed it would come off as rapidly as it went on but when I've Googled it the answer seems to be as you say, that it's a very slow process of getting back to normal. I think I do still have a bit of PMR but the rheumy (Dr M, who I think some of you at PMRGCAUK know, is an expert on the topic) still says it can't be PMR because I'm too young. Nonetheless, to me, pains in neck, shoulders, hips, legs and feet are textbook PMR especially as they are obviously responsive to steroids. She still thinks it's arthritis though none of the descriptions I've read seem to match what I've got. I think you're right that taking a very low dose of steroids is better than being really uncomfortable. The stiff hands is a new one I didn't have pre-steroids. Thanks for your help.
Hi again,
Think you're confusing 2 posts if written recently. I've been off Pred for 9 months, but I lost weight whilst still on them by just watching what I ate.
CelticPMRGCAuk volunteer
tangocharlie, good news about being in remission, and I'm sure you will also have some more good news as time goes on about weight loss. However, unless we're very lucky, it doesn't always just fall away on it's own but needs some input from us as well. If you can concentrate on reducing the amount of refined carbs in your diet that will help. Although you have done well to get off the steroids, various hormones will still be trying to get back to normal so the body still has a lot of sorting out to do. It can take up to a year or so for our bodies to totally recover after coming off steroids so you would be wise to continue to take special care of yourself - it's still early days in remission and those muscles will still object if you suddenly expect them to go into overdrive and do all the things you did pre-diagnosis. If you take it easy, hopefully, the pain and stiffness you are experiencing will resolve. Stay well.
Thanks very much for the advice and encouragement Celtic x
Hi Tango Charlie
I am down to 9mgs, and really fed up with extra weight. I am walking more and have joined slimming world, and lost 5lbs in 3 weeks. Not a huge amount but already feel a little less bloated. I leave out the carbs on this diet and work manly on lean meat, veg, fruit etc. However, just going to be weighed in makes me try harder ....... even if I lose 1lb a week, over that will soon be a stone.
I had two stone to lose really, I had already lost 2 or 3 lbs but needed more support, so overall a half stone this month.
Good luck.
Well done that's brilliant. I went along to SW a few years ago and they told me there was no point joining as it was virtually impossible to lose weight on steroids and I'd be wasting my money! Might go back to them now.
You just have to tweek it slightly- I don't have any pasta- a tiny amount of whole meal slimming bread or rice if craving but keep the carbs down. Weight loss is slower but a loss is a loss 😉
There are some ladies on the LupusUK forum who have been losing weight using SW while still on pred. But at least your group were well aware of the problems while on pred!
PMRproAmbassador
I lost 36lbs while still on pred, in fact I was at 15mg when the weight loss started - but not just out of thin air. I cut carbs drastically - if I eat more than a minimum of carbs I lose no weight a bit more results in weight gain. I would like to lose a bit more - but that's been the story most of my life!
I have had a similar experience. On a very low carb diet, I have managed to slowly lose some of the Prednisone weight (very slowly). The minute I eat normally again though, I start to quickly gain! So I am trying to keep motivated to stick to the diet until I can get off prednisone, although it is hard.
Thanks for that, I guess I really need to focus on every mouthful and be determined!
Hi there. I have now been on pred for over two years. I have put on very little weight. Being aware of pred making me hungry, I am careful what I eat. At the end of the day weight increases or decreases depending on what you eat. Pred cannot put weight on by itself. My diet is fairly low on carbs and fat and I find that keeps my weight stable around nine stone.
Best wishes from Liz.
Hi Liz, unfortunately yes it can, Pred is famous for creating truncal weight gain, and I also have the classic Cushingoid moon face. I have an overhanging slab stomach which is unlike other types of fat. My weight went on rapidly soon after starting on steroids 5 years ago, over a stone and a half in 3 weeks, even though I follow a low GI, low fat lifestyle. A further stone went on similarly rapidly two years ago after I'd got the steroids down to 5 but then had to go back up to 10 due to a flare. I'd have had to have been eating like a hamster round the clock to put on so much weight in so short a time! You're one of the lucky ones and hope it continues for you. Thanks for the tips.
So sorry. I didn't know that you could put weight on from the pred alone. That is so unlucky. Maybe I wasn't on the steroids on such a high dose or for such a long time. I haven't had the moon face so maybe my dose has been much lower. Hope you resolve your problem soon.
Best wishes fro Liz.
I went on the 8 week blood sugar diet whilst still on 12 mg prednisolone a day. Mainly to deal with the steroid induced diabetes which I had contracted.
I lost 2 stone and the diabetes! I am currently on 10 mg a day but maintaining the new weight.
So I would say yes, if you are off steroids then you will lose the weight. Try the diet.
Thanks, I'll do some research I've been doing the 5:2 for a few weeks and that's invented by the same guy I think, Michael Mosley. BSD looks a bit more flexible which might help me to stick to it.
I found the 5:2 helped me reassess portion size very well - and then I started low carb which worked better for weight loss. If I eat carbs - no weight loss 
Forgot to say, I had no exercise at all to contribute to my weight loss. I am unable to walk.
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