My daughter has been trying to wean off steroids over the last year but when ever she gets below 10mg she becomes unwell so the consultant puts her back to 40mg and we start the wean down program again.
He has said for her not to go below 20mg now with Covid been such risk. She normally has monthly reviews with her mepo injection but I am giving that at home now and will not see the consultant for 3 months. I have noticed her ‘moon face’ and weight increase. Obviously at the moment all I’m concerned about is keeping her healthy but should she take any supplements or prescription while she is on a relatively high dose of steroids for a longer period to protect her bones?
At 18 she is unhappy with her bloated face and weight gain.
Thanks in advance
Written by
dawnhaycock
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I have photos of me as a bean pole kid, then the steroid years start, age 10, and the photos show the moon face and weight gain. I worked hard throughout my teens to keep my weight down and in turn it helped the asthma.
It's only since I headed towards the menopause that GPs have mentioned bone protection.
Calcium, magnesium and zinc as a combo together with Vit D3 are inter-dependent for good bone health. Obviously a well balanced diet and exercise is key. Weight bearing exercise (such as walking) helps bone health throughout our lives. We have a physio in the family and daily walking is the greatest thing we can all do for our body strength, balance and longevity.
A good diet in youth lasts a lifetime. A diet of junk food, especially fizzy drinks, depletes bone strength. And that includes carbonated water. We also have a nutritionist in the family!
Thanks, all good tips. She is in the highly vulnerable group so is unable to leave the house for walks. She enjoys baking which is lovely but not so good for the waist line !! I think we might just have to go with it and stay well and worry about the weight gain when this is all over.
Snap! I was on lock down before it officially started and on oral steroids. I do go out for solo walks as it's quiet where I live. Some yoga stretches may help - loads available on YouTube. Just to keep supple.
Hi! You had me worried saying that fizzy water can affect bone strength, as I drink quite a bit of it. I did some research, and discovered that water isn’t a problem - it’s caffeinated fizz, and particularly cola, which also contains phosphorus, that isn’t recommended. Even then, the studies suggested a limit of 5 per week, rather than a complete ban. The Mayo Clinic has a round up of the research. PS Sorry I didn’t reply sooner - it’s taken me till now to work out how to search the community...
I wish your daughter well. I have managed to get of steroids by changing inhaler. The inhalers have steroids in them but my inhalers could not control my asthma so i have been having steroids for last 3 years. maybe your daughter could get medical advIce to try different inhaler. I am using Fostair 200 pressurised inhaler and have not had steroids for 3 months. As for COVid19 then yes maybe your daughter should continue steroids to keep her safe.
Hope your daughter is ok ...I was advised by my resp nurse to up Steroids while covid going on...I take a calcichew every day and an aledronic acid once a week to help with side effects of steroids xx
I am so sorry to hear of your daughters problem I had a problem with coming down the steroids back in the 70s and early 80s then in 89 my consultant put me on 10mg Prednisolone a day, of course my weight shot up but my breathing and asthma were fine,, since then I have had occasional trips to A&E with my asthma, the last trip was last October, so I am keeping my fingers crossed, 71 years living with asthma has had its ups and downs. Hope your daughter keeps well all the best for the future.
I was in a very similar situation I was 18 and on high dose steroids (am now 20 and off them). It made me really upset to see weight gain so I completely relate to that.
It took about 2 years to get off the steroids. Every time I got down to 15/10mg I would end up getting much worse and almost always needing hospital. In the end I ended up literally decreasing by like 2.5mg each time which took ages but worked for me!
I unfortunately did have quite a few problems with it, made my bones weaker and I had a unfortunate stress fracture from running after (trying to loose the steroid weight)
The moon face does go down significantly! I’ve been steroid free for several months now and my face has shrunk significantly!!!
Thanks, when she is on a higher dose, say 30/40mg she comes down 5mg per week but from 20mg she drops 1mg every 4 days so as you say takes ages then when she gets around 7mg she ends up struggling. She went on the mepo injection which we hoped would get her off steriods but although she has been a lot better it hasn't really been the miracle we were hoping for.
Can I ask if you had any tests or anything for your bones?
I was 13 when I first had a course of steroids, and similar to your daughter, I hated the side effects and weight gain. By the age of 16, my asthma was so uncontrolled, I was spending more time in hospital than at home (I had to do my 'O' levels in hospital). I was stuck on 20mg and every time I tried to lower it, I ended up in hospital again. I had a fantastic consultant in those days, and he very patiently helped me to reduce down to 10mg over a period of about 2 years. I reduced I mg at a time every few weeks, making sure I was as stable as possible before I dropped another 1 mg. I'm still on 10 mg now, many many years later. I do have bone density scans every year although the latest one was cancelled due to the virus.
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