Weight loss whilst still on steroids ?

My 13 year old daughter has wegeners granulomatosis - diagnosed August last year - she is now on 5mg of prednisolone and is struggling with her weight gain.

Am trying to help as much as I can & have suggested we join slimming club for extra help & support - however am worried that however hard she tried she may not be able to loose weight whilst still on steroid albeit a low dose - thing is I don't know how long she is going to continue with steroids - I plan to speak to consultant about it ASAP but wondered if anybody out there had any feedback

It's heartbreaking & just feel really helpless !

12 Replies

oldestnewest
  • Hello Bailey24

    I have CNS vasculitis and was diagnosed in sept 2011. I was on 60mg of Prednsolone but now down to 9mg. I put on 4 stone in weight. I felt awful. I had never been on a diet in my life. Last year I joined "Slimming World" and I have now lost three and a half stone! There is no pressure and they are very good with youngsters. I would definitely suggest you give it a try for your daughter. I wish her luck - stay strong. Lorraine x

  • Wow well done !!

    Slimming world is the club we have decided to join actually - thanks for your reply you have spurred us on :) x

  • It is difficult for a teen isn't it - my 14 year old granddaughter spends a lot of her life on high dose pred for severe brittle asthma and absolutely balloons every time. Normally she is as slim as her mother who is a positive stick insect (UK size 8 on a fat day)! Nome takes it in her stride mostly and when some foul boys at school wandered past and commented she had a riposte and her class mates absolutely hammered them. I was surprised the school hadn't been more proactive.

    However - I am still on 5mg of pred as is another friend (we have polymyalgia rheumatica) and we have both lost a load of weight since we have been reducing from about 10mg. She did WeightWatchers and I have done the 5:2 diet plus reduced my carb intake quite considerably. Something in wheat makes me come out in a rash so leaving out bread and stuff is never a problem but I also restrict all carbs - by doing that I manage about 2 pounds a month, sometimes a bit less depending on how "good" I was. Slow - but steady. Lizzie on WW has done really well too.

    It can be done - so very good luck! I think the key is to explain to the group leader so they don't set unreasonable goals - that was a major problem for me with Rosemary Conley in the early days of PMR when I put on weight because of inactivity. I didn't put much on with pred at first, it redistributed to my midriff, but I was switched to Medrol and that was hell on earth. I've lost 35 lbs in about 18 months.

  • I managed to lose weight on 40mgs for over 3 years through attending SW. They have a plan for teenagers. it's really good a nd they have consultants that whom you can speak to about her individual concerns.

    I was told that I would put on over 4 stone which would have been almost 40% increase...I lost a stone abd have kept it off through healthy eating..... it's worth having a look.

    teenagers have it hard anyway, my son is 14, so any help....btw my friends daughter who is 13 attends and she is on multiple meds for epilepsy and brain injury.... she loves it because it gives her some control in her life x

  • There are some very good replies all ready which I know you will find re-assuring and supportive in that you can eventually control the weight gain however it is difficult initially

    5mgs is a relatively small dose & is in fact the same as I'm on for the same condition after being diagnosed last year - I've been told that I will be on them for at least a further 2 years along with my other medication to keep it in remission

    I would suggest that you talk to your Consultant about your concerns & they will likely refer you to a Dietician for some help

  • Hi. I have vasculitis and possible SLE. I have been on high dose prednisolone for one year and 6 months. When I was hospitalised at Christmas they increased my dose even more and I put on almost 3 stone in one month. Although with my condition, I am currently unable to exercise, I have managed to lose over a stone in one month through dieting. It definitely is possible, just it is more of a challenge because of the prednisolone. Like many others, I used to be a size 6 and could eat absolutely anything and not put on any weight ... Being on prednisolone has certainly changed this! I hope that all these positive replies help to keep your daughter staying positive. Good luck to your daughter. x

  • I'm confused about the reasons for weight gain when on steroids, since it seems to vary for different people and for different reasons.

    I was diagnosed with Churg Strauss Syndrome last April and started on 30mg. Now, 11 months later I am on 15mg and struggling to get below that at present. Since I'm a Type 1 diabetic on insulin (for last 44 years) I have to control how many carbohydrates I eat since this has to be covered by fast acting insulin. So I eat about 100 grms of carbohydrate a day and this has not changed since taking steroids, since I have not felt any hungrier.

    So what has happened to my weight ....? There has been no weight gain (BMI is still 24) but what limited fat I have has been redistributed in the usual places ... fat face, front of stomach and lump on back of neck. Conclusion: prednisolone at these levels does NOT put on weight in my case, but would have done if I gave way to eating more carbs. So the answer is not to give way to eating more carbs when on steroids.

    Any comments ...?

  • I think it is a very individual thing. I have been on high dose steroids for nearly a year and haven't put on any weight. Part of this has been ongoing jaw/ facial pain which makes it difficult for me to eat lots. I haven't had any redistribution of my body fat either or a round face. That doesn't mean that these problems don't exist.

    I think the point is that Bailey24 is trying to support her daughter in any way she can. It's really difficult being a teenager without having illness, meds and weight gain to worry about. It sounds like slimming world or similar is the way to go and provides a supportive environment.

    I am a parent too and can understand the heartache when your child is unwell. Good luck, I am sure with the right help and support your daughter will overcome this.

  • Thanks for your reply - you are spot on same wave length re worries & concerns for my teenage daughter .

  • I'm sorry to hear that your daughter's been hit by this illness and I wish her the best of health and luck for the future. I pleased she has been able to reduce her steroids to 5mg in such a relatively quick time. We all pile a little extra weight in the winter anyway, so she might drop a few pounds now and with the lighter nights maybe it's time to get a bit more active? My teenager joins me for walks and has joined a couple of sports groups. He isn't particularly sporty but he does enjoy his food and there's a lot to tempt him, at school or home. My son enjoys to indulge a little and exercise to help maintain his healthy weight. There is so much pressure on our kids and their body image...13 seems very young to go to a diet club.

    Anyway, good luck what ever you decide, I really feel for you both.

    P.S. weight watchers has always worked for me in the past and is easy to do online and has apps, Facebook and Twitter, so you could avoid the 'fat club' in the community hall, which might be more fitting for a younger dieter.

  • I have wg and am still on10mg steroids but lost 3 stone with weight watchers aubnd have not been able to excersice just encourage her and perhaps seek help from dietician at gp or hospital if she doesnt want to join a health cl

  • hi there, last year i had a recurrence of wg and was put on 30 pred, it was gradually reduced to 5mg which i am still on. it is impossilbe to loose weight when on a high dose as you just want to eat and eat and eat especially sweet things like biscuits and we are talking like a packet. at 5 mg she should find her appetite back to normal, this happened to me, i joined slimming world bought some of their books which have very good recipes in them and have lost the weight. good luck xxx i was told by my renal dietician that scrambled egg whites are very low in calories but the protein in them stops you being hungry. if you want to shift weight extra quick you can replace one meal with this- scrambled egg white on toast.

You may also like...