Hi all, hope everyone is keeping safe and well throughout these crazy times.
Totally unrelated and very minor in comparison to everything else that we are all going through right now, but I have been on prednisolone now on and off for 3 years and usually very high doses given to control the inflammation in my body. It has made me gain over 3 stone in weight and I just feel uncomfortable. I was wondering how long after coming off do you go back to normal? My face is so round and the fat/ water retention in my neck is uncomfortable at night time when I lay down.
I’ve never been fat, nor do I eat badly. So the weight gain has predominantly been steroids and also the fact my appetite has increased so I eat bigger portions perhaps than I would have usually. I understand exercise is obviously a given, but if anyone else has been in this position could you please put my mind at ease, that this will go, if so how quickly roughly before my face goes down to a normal size?
Also if you have any tips on shifting water weight whilst still on 15mg of steroids (I have 3 weeks left before I stop them thankfully)
As I said, In the grand scheme of things this is minuscule but personally for me, the weight gain has been a really horrible, uncomfortable side effect - would appreciate any advice / helps !
Big love and well wishes to all xxx
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PM193
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Your question isn’t minor, it’s the kind of question this forum is for 😊From personal experience the weight didn’t go on it’s own after stopping, I had to diet to lose weight after coming off pred.
Sorry i was only short term but i was so hungry all the time so if on it for a long time like you have been it must be difficult Not any answers for you sorry but someone else probably will hope you can get off it Pred soon
Hi, your question is very appropriate. Like you I was slim, fit and healthy before RD, I put on 3 stone whilst waiting for a diagnosis . I have been on oral prednisolone for over 2 years, varying dosages. I put on another 1 stone since taking it. Baricitinib, curbed my appetite, so I decided to make a huge effort to try and get rid of the weight. The 10th of April this year, will see a full year of trying to loose weight, and I've shifted 3 stone 2 lbs.
I eat around 1200 - 1300 calories a day, all fresh food, freshly prepared. I use 100 calories a day for something that I really want (half a scone, several rice cakes...whatever) and sometimes have a wee treat 150 - 200 calories, at the weekend. I don't drink any alcohol or eat any sugar.
The weight has come off, as it has gone on if that makes sense. The belly fat went on first, I'm struggling to get it off now. The moon face was a later development with me, it came off early in the weight loss.
My rheumatologist warned against trying to loose the weight more quickly than I am doing, and advised to make sure I was taking enough protein to try and mitigate muscle loss.
She is surprised by how much weight I have shifted. I find when I'm ok ish health wise the weight comes off. When I'm unwell it becomes harder to shift. Strange.
The exception being a recent bad bought of tenosynovitis, I was losing around a pound every 3/4 days.
It will come off, but it us slow going. Good luck.
I understand it is going to be a slow burner, because of the amount of weight I’ve put on and how stubborn belly fat can be. It used to just be my legs and face, now it’s just piled on all over and really suddenly I feel huge.
My face is always the first to show, people always know when I’m back on steroids because of my round face.
Well done you on losing the weight that is an incredible amount of weight to lose in a year too so kudos to you on that! It makes me hopeful too. I’m hoping wirh exercise also, I will shift this weight fairly quickly, if it takes me a year then great. But even if I can shift the majority and still have half a stone / stone to lose in a years time I will be happy.
I am now on tocilizumab so I’m hoping the steroid use will calm down a lot. I’m sure it will. So I’m hoping in 3 weeks once I’m off steroids I can begin to really lose some stones!
Thanks again for your reply and once again, congratulations on your weight loss journey I bet you’re really pleased!
I'm just waiting for tocilizumab to arrive, around 2 weeks I've been hold. Baricitinib is not working for me. I'm on 20 mgs prednisolone a day too keep me going 🤞
How long have you been on Baricitinib? Have been on it for 5 months or so. It’s not really working well enough to control my RA. My inflammation levels are high, as well as my white blood cells and my platelets too. Am in pain every day and I have been on Prednisolone)20 mg/day) for nearly 2 years. Have been trying to slowly reduce but hit a problem when on 16 mg/day. So back on 17 mg/day. I have put weight on my face, my abdomen, hips and thighs!!! I think I won’t be able to come off the steroids. Depressing because I also have osteoporosis.
I've had a really bumpy 6 months with baricitinib, with umpteen dosage changes 4, alternating 2/4, 2 mgs and now I'm taking either 2 or 4, self choice under rheumatology approval.
It does work to a degree, I certainly have less tenosynovitis, my main issue just now, on 4 mgs than 2.
But on 4 I am plagued with minor, but constant infections....herpes simplex, athletes foot, fungal belly button, oral thrush that will not go away. I've had hand, foot and mouth disease and an ulcerated throat on a number of occasions too.
I've also been on oral prednisolone throughout , everytime I try to reduce, the tenosynovitis rages.
But, I have not managed without prednisolone on any other bDMARD or DMARD either.
Hi, I was over one to two months to get rid of moon face once I stopped completely. The only thing I’m left with now are wrinkles under my chin because of the fat pad I had there. It’s a great feeling being off them, they change your whole face. Best wishes coming off them x
Not a silly question at all you have to be so careful when you stop taking them.
As when I came off steroids after being on them for 5 years, I lost weight dramatically I suddenly lost 2 and half stone over a couple of months and everyone told me how awful I looked and thought i had something sinister wrong with me.
My face looks so thin now as i also had the moon face for years.
I felt my body crashed losing too much weight to quick.
I to was on high doses and had been constantly on them for about 3 years. I liked the energy part but like you hated the weight gain. I was completely off them right after Xmas. It took a long time to taper off them. I have lost 10kg to date. The first month took care of the moon face. I watched what I was eating and cut out all the alcohol. I would like to loose another 9kg. Just a word to earning the first month I was constantly running to toilet even at night. I must have been retaining a lot of fluid. I’m in Ireland and am in my fourth week of isolation so it’s difficult to keep the routine up but I’m trying. The best feeling is to see my clothes getting to big. Good luck.
Honestly everyone all of your answers have been so so helpful!
It’s reassuring to know that the moon face will be first to go as that is the part that is the most distressing for me! The rest obviously will follow with diet and cutting calories. Thank you all sooo much for your replies. Can’t tell you what a relief this all is!
For me, weight loss was quite difficult because prednisolone made me ravenous! The only way I could control it was by eating a lot of low calorie foods and drinking a lot of water so that I was full. Once I began tapering off of prednisolone, I made a concerted effort to reduce my portion sizes (which had balloooned) and this helped me to get back to my 'normal' weight. Good luck with it all, PM193!
It is difficult I know. I put on 14 Kg despite my best efforts at controlling my intake. I seemed to have no 'full up' signal and felt constantly hungry while on high doses.
Since coming down to a maintenance level of 5mg, it has been a long slog of controlling my calories. I can't do much exercise compared with what I used to do, although my daughter points out I'm a lot more active than most people of my age. It has taken about three years to get back to within 2Kg of what I think of as my 'normal' weight, so I'm almost there. My face went down quite quickly after the first 4-5Kg of loss.
I hope that helps and doesn't sound too depressing!
I had high dose for months for kidney failure it did'nt work but I looked like Mrs Blooby, it took about a year for the weight to drop off. I did'nt diet and tapered off slowly. So don't be too worried its not a problem but be patient.
Hi, I was just reading your post regarding weight gain... this was also my worst nightmare and like you say, in the grand scheme of things it seems so minor. I feel bigger every day! And I haven’t really eaten any more than usual, it is really getting me down, in 3 weeks I’ve gained 1 1/2 stone, my face, neck and shoulders are huge!
I’m still on 20mg so it’s going to be some time before things get back to normal! Also this morning, I washed my hair and two big handfuls of hair blocked the plug hole.... am I going to be bald as well!!!
Hey lovely - so sorry you’re struggling with this too it is really hard but don’t be too hard on yourself, when you come off the steroids the weight will go. I’ve come down to 12.5mg and I have noticed a small shift, but not a lot yet, but even that small shift has given me hope!
I’ve heard that lowering sodium intake and making sure you’re eating potassium rich foods can help with the water retention. How much longer are you on 20mg for?
I haven’t noticed hair loss personally, but I have noticed my face has gotten fuzzier and I had awful teeth sensitivity alongside the water retention and weight gain.
Don’t panic, I think as you come down on the steroids the side effects slow down too, if you’re really worried though definitely speak to your specialist.
Hi, that gives me hope, I know it shouldn’t bother me, but sadly it does☹️I’m on 20mg now, going down to 15 tomorrow then reduce by 5 in two weeks!
My face is definitely fuzzier and my front teeth were really sensitive to cold drinks last week too, I haven’t seen a rheumatologist yet! It all started for me in December, was diagnosed at end of January, unfortunately my first clinic appointment was cancelled 2 days before lockdown was announced, not sure when it will be rescheduled for! I’m not too worried, just seems that I’m experiencing most of the side effects.... lucky me!
Thanks for your reply, it’s good to know it’s not just me😂
I had high dose of Pred. for AKI and yes it put on weight. It took a fair while to come off but the moon face went first. You must come off slowly it took me months so 15 for a week then 10 then 5 then 4 then 3 , then 2 then 1 each week. I did not diet so be patient it does happen but its slow. I don't know if dieting will help as the AKI meant I could not do the exercise I would have done before. I got back into pre Pred. clothes after about a year I suppose or thereabouts.
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it is really hard but don’t be too hard on yourself, when you come off the steroids the weight will go. I’ve come down to 12.5mg and I have noticed a small shift, but not a lot yet, but even that small shift has given me hope! 
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