Practical Weight loss advice whilst on steroids and MMF

[LalaH52]

Ugggghhh. Steroid weight gain has been a real thing and I was already “fluffy” before I started high dose steroids back in November. I’d lost 18 pounds when I started on prednisolone but that’s all gone back on (and probably some more but I’m too ashamed to step on the scales). Steroid hunger has been very real.

I started on 60mg and have been tapering down, the taper has been further slowed down so there’s a long while to go until I’m off the steroids, unfortunately.

I’m also on a titrated dose of Mycophenolate Mofetil (MMF) and won’t reach full strength (2x 500mg BID) until 4 weeks time.

I need to get back to losing weight again. Keto shakes were very effective in life before Pred and MMF. I had a severe gastric reaction in my original 3rd week of MMF - unclear whether it was due to high dose steroids or the increased MMF dosage but it resulted in increasing Omeprazole to twice a day and stopping MMF for about 10 days and the restarting it at a much gentler titration, increasing dosage every 4 weeks. I was advised that I wasn’t eating enough for breakfast to “ line the stomach” sufficiently for the medications and this may have been the cause of the severe gastric reaction.

Keto meal replacement shakes work very effectively for me and is my dieting first choice. I struggle with just eating in moderation. (Long story over the years) and so traditional diets are not easy.

However I really need to get back to losing weight and the steroid surplus as my clothes are telling me the truth. I’ve looked at time restricted eating/ intermittent fasting eating windows but this doesn’t work with the medication regime and the requirement to take the steroids and MMF with food. Keto shakes on their own aren’t sufficient either and I’m nervous about a repeat gastric episode.

I would really welcome any advice and tips about how to lose weight successfully when on steroids and MMF from anyone who has also been on either/ both drugs

[PMRpro]

Pretty much the only way to manage weight gain when on pred is low carb. Loads of us on the PMRGCA forum manage pred weight with low carb. You are used to that with your keto shakes but we all do low carb with real food as far as I know.

[LalaH52 in reply to PMRpro]

Yes, I agree. I’d read about low carb, no sugar or salt for weight management whilst on steroids. Have you had success losing weight, as opposed to maintaining, whilst on steroids? I really need to get back to losing weight as maintaining a gain isn’t where I want to be until I come off the steroids

May I ask what the forum name is that you refer to in abbreviated terms?

[PMRpro in reply to LalaH52]

PMRGCAuk is polymyalgia rheumatica and giant cell arteritis. Everyone with either in the UK is on pred, in the case of GCA at very high doses to start with.

healthunlocked.com/pmrgcauk

I lost 35lbs of weight I had gained first with untreated PMR because I was so limited in what exercise I could manage, that rearranged itself on pred but I didn't gain a lot until I was on Medrol/methyl prednisolone) and then it piled on. WIth switching to prednisone and a low carb diet I lost about 35lbs over about 18 months - weight loss while on pred is slow usually but it can be done. Some just need to remove processed carbs, added sugar and most fruits (lots of sugar in fruit even of it is healthy), some of us needed to be nearer keto levels of carbs. Unfortunately, getting into ketosis when on pred is very difficult as it triggers the liver to release random spikes of glucose from the body stores in liver and muscle. So all you can do is your best.

[LalaH52 in reply to PMRpro]

Gosh that’s quite an achievement to lose 35lbs on pred. That gives me hope! Thanks for the advice. Generally I’ve found that eliminating any processed/ refined carbs results in some weight loss. The keto shakes and a small protein and veg dinner yield a greater rate of return. That was before steroids. As you say, we can only do our best. I’m endeavouring to create a 28 day keto diet plan that can accommodate the medication regime and hoping there will be some positive results at the end of that.

[PMRpro in reply to LalaH52]

I'm not the only one on our forum - one lady lost 3st and reversed Type 2 diabetes, another lost 2st. There are others.

Good luck

[WinterSwimmer]

Have you tried taking MMF on an empty stomach as per the manufacturer's recommendations? I find this is the only way I can take it. Although it makes my stomach growl like crazy - if there is food in my belly I end up with reflux and worse.

[LalaH52 in reply to WinterSwimmer]

No. I have been expressly advised by the rheumatologist to take it with food. I am reluctant to ignore that medical advice especially since I had a severe gastric reaction previously where I had only had a keto shake and a hard boiled egg before taking the steroids and MMF morning dose. The gastric episode was a very, very painful spasm which was the worst thing I’ve ever experienced. I was given oral morphine to relieve the pain which worked very quickly.

I’ve not had reflux issues at all.

[WinterSwimmer in reply to LalaH52]

drugs.com/cellcept.html

[LalaH52 in reply to WinterSwimmer]

I’m aware thanks but I’ve been advised differently by the rheumatologist. I had a severe gastric reaction on an almost empty stomach after taking MMF and the steroids. The steroids need to be taken with food in any event. I really do not want to end up with another severe gastric reaction again. Been there, got the tshirt.

My original query is about weight loss advice, rather than medication advice.