Can anyone advise on weight gain/loss?

[DebbieF1603]

Asking for experiences with reducing weight whilst taking steroids please. It sounds frivolous when compared to our respective pain and discomfort but I am really struggling with the weight redistribution/gain. I remain sporty and exercise each day but I cannot shift even a pound and am extremely uncomfortable with how I look and feel. Can you please let me know at what level of meds you were able to see some reduction in weight. I know low carb is good but after all the morning’s exercise I could eat a horse by lunchtime. I really really don’t want to get any bigger.

[yogabonnie]

HI! I asked about this very question and got lots of wonderful replies you could check this out while waiting for replies to your question! healthunlocked.com/pmrgcauk....

[Insight329 in reply to yogabonnie]

That was a great idea, yogabonnie, to direct Debbie to your post. There was a lot of good information in that discussion. Your brain is workin' mighty fine.

[yogabonnie in reply to Insight329]

HA! my brain is SO prednisone bad... I forget things in the middle of a sentence and walk into the room and WHAT was I here for... so I am DELIGHTED to read your post!!!!!

[PMRpro Ambassador]

If you cut carbs - the craving for food reduces and anyway, a big plate of chicken and leaves doesn't have much in the way of carbs! You can eat loads.

I lost 35lbs using low carb while I was reducing from 15 down to 10mg - all the pred weight and a bit more I had gained during the 5 years I had untreated PMR which very effectively stopped me exercising. I could barely walk!

[Pongo13]

I usually follow slimming world. However, currently I am eating healthily and for good health. (Kefir, avocado, nuts and seeds, smaller amounts of carbs). I have three meals a day, never snack in between, don't drink alcohol and steer clear of sugar (choc, cake etc). If I do have a cake, say, then I wake up starving in the night! So far I have lost a little weight, not much, but I rarely go on the scales. i am in the zone and hoping it lasts! Good luck to you, there was a lady recently interested in setting up a buddy system for losing weight if that interests you but I cannot remember her name.

[SnazzyD]

Eat that horse as long as it is protein and lots of lovely veg raw or cooked. A bit of dressing is nice. Lots of lovely spices to avoid the salt. There’s carbohydrate in things like carrot and peas so you’re not going completely carb free, just not having the empty carbs that just mess with your blood sugar and often don’t give you many nutrients.

[Hidden]

Lost about a stone going down from 15mg to 10mg over past year. Low carb. That's not no carb. I have replaced pasta with edemame/soya bean noodles. Have fibre rich seeded bread so net carbs lower. I make my own crackers from chickpea flour..low carb again and flavour with your faves. I like chilli cheese caraway combinations. I don't eat meat but can see how if you do having chicken or fish with veg and/or salad would help. I have made use of a book supported by diabetes UK that has portion sizes and carb and calorie content of everything from muesli to big Mac. Nice and easy.. .shows a picture of each portion size with grams of carbs and calorie content. Book called carbs and cals by cheyette and balolia. I was total carb head and havent noticed eating less or fewer carbs. Good luck!!

[Hollyseden in reply to Hidden]

That book looks interesting. Must look it up Thanks Poopadoop

[DebbieF1603]

Thank you all. I was sort of hoping that, in addition to the 'obvious' carb reduction there might be some miracle level (of pred) at which the weight might start to reduce. I'm at 9mg at the moment and just about to start another slow reduction.

[DorsetLady PMRGCAuk volunteer in reply to DebbieF1603]

Hi Debbie,

Don’t think there’s a miracle level of Pred re weight loss, but once you get into single figures I think it helps. Not sure if it’s your adrenals working again, or whether you have a bit more energy and that helps, or whether below a certain dose of Pred other hormones come into play, so hang in there it will happen. And try and stop thinking about it!

[DebbieF1603 in reply to DorsetLady]

Thank you. You are a star as always.

[DorsetLady PMRGCAuk volunteer in reply to DebbieF1603]

⭐️!

[Hidden in reply to DebbieF1603]

Oh and even rheumy said to make sure good fats consumed I.e don't go fat free. If anything I have increased olive oil and eat plenty of nuts. I love my cheese so have that. Reckon need the calcium and fat.

[Hidden in reply to Hidden]

Ps. I have been doing v slow and steady. I want a realistic way to continue losing weight and then maintaining. I have been fighting against pred and insulin which everyone says is hard to lose weight with. I suspect that people might think can eat more carbs and use insulin as new found helper to eat higher carb.

[Mary63]

I am the ‘buddy weight loss person!’ We are a small but (im)perfectly formed small group, who are all trying to lose the weight we have gained since being diagnosed with PMR/GCA and being on prednisolone.

No rules for the group, just a weekly email to say how things are going on a Monday each week, and ideas and encouragement.

I am at present going down from 9 to 8.5 mg slowly this month, and was diagnosed two years ago (PMR).

I was a sporty tennis person, and can still play when not injured, especially since I retired because of PMR last summer. At present recovering from a knee op, so not burning much in the way of calories at the moment.

Despite this have lost 6 1/2 lbs since Christmas.

Please anyone who would like to join us, just send me a private message including your email address and you can join in too!

All the best

Mary

[Hollyseden in reply to Mary63]

Wow to that weight loss 👏👏

[KinnearD in reply to Mary63]

Do you include those of us newly diagnosed and changing eating patterns attempting not to gain weight?

[MaryWR]

I was down to about 5mg when I went on Michael Moseley’s Blood Sugar Diet. I lost two stone in eight weeks, which is the maximum time recommended. I then went on to his suggested Mediterranean eating regime and the weight has stayed off. His book is an interesting read and backed by plenty of research data. The rapid weight loss is frowned upon by some but it gives results which is so motivational. It is the only thing which has worked for me over the last three years. Good luck!

[SheilasPMR]

Believe me it is NOT frivolous at all! I was not able to shed the weight ( about 35 lbs) until l was off Prednisone but thankfully most of it came off with little effort once I was off for about 6 months.

[Sandy1947]

I eat all day long! Mostly protein and vegetables. Not too much fruit, no alcohol, no bread, cookies, cake. 2 squares dark good quality chocolate under 5g sugar. Small, constant meals up until bedtime. Pred has caused a cereal addiction sometimes twice a day...oatmeal, grits, small amounts of low sugar muesli or granola mixed in. Portions are not big. Can’t seem to shake that carb craving. Mostly full fat dairy. Retired from being a financial advisor in urban school districts since PMR appeared (June) so life is more sedentary. Gym daily. Lost a few pounds since start of PMR. Only weigh 107, 5’2”. I’m a bit hyper and Pred has intensified my edgyness!

[AliDeJ]

Hi Debbie,

I lost over three stone in four and a half months and feel so much better. I've shared this before...

Almost a year on high doses of steroids and another 14 months to go…

I feel so much better after switching to a low carb diet and taking more exercise. I avoid high cholesterol products as my family are all cardiac cases but do allow myself some creamy blue cheese and eat lots of protein. Every day I kept saying "I must lose weight!" but was totally confused about the best way to go about this. I LOVE bread and pastry and potatoes and spicy rice, and couldn't imagine keeping off them. I felt quite revolting at my son's wedding- 3 stones heavier than I should be and people started telling me I had gained weight. I am sure my weight was contributing to my general ill health- and it was getting worse so this is what I did:

Cut all foods containing processed sugar. No sweets, no puddings, no biscuits, no cakes, no exceptions.

Cut out bread, potatoes, white rice, pasta.

Focused on what I COULD eat! Vegetables and protein, fish, chicken, cottage cheese etc.

I have porridge for breakfast (no added sugar, 2 fl oz oats with 6.5 fl oz semi-skimmed milk), or a huge slice of honeydew melon topped with whole milk natural yogurt, or sometimes half a banana and bran flakes.

For lunch, a home-made veg soup (big bowl!) packed with different vegetables or a huge mixed -coloured salad with chicken or cheese or tuna. So much salad that I feel really full. Adding a few walnuts to the salad, olives and grapes also made me feel full.

For dinner I eat the same as my husband (protein and veg) but have a chunk of broccoli/cauliflower instead of the carbs he has on his plate. We eat green leaf veg every day and lots of fish or chicken. I have certainly increased the amount of protein that we eat now. I do eat a little brown rice, but I don't like it much! For dessert: Baked apples are great stuffed with cinnamon and a few raisins or I have more natural yogurt and honeydew melon! The thing is I am not trying to cut calories, just starchy chemicals.

I snack on nuts and dried prunes or one square of Lindt Excellence 70% choc if the need is great. Also sticks of celery and Houmous. I drink grapefruit juice or orange juice with a meal.

Then I go for a 20 minute walk around our block. Very fast and very aerobic. In fact I must look rather funny, like a cartoon person with their legs going very fast. I try to walk everywhere now instead of taking the bus. Even on days when I am very very tired from the GCA and PMR. I like to think of the good it is doing my vascular system.

The wonderful thing is that the carb cravings stopped after a few days of cutting out sugar and carbs and eating lots and lots of veg and protein. My tummy was "Quiet"- not calling out for food, and I had more energy. I had noticed that a breakfast of wholemeal toast with marmalade and marmite made me TIRED! Really sleepy at 9 a.m.! I am not gluten intolerant.

I am so thankful to have lost 3 stone in 4 months. That's 2 to 3 pounds per week. Sometimes it seemed no more was coming off, but it did, strangely in fits and starts. I really recommend the low carb approach. I find thinking about the foods I CAN eat rather than the ones I can't, helps. Also I have come to view processed sugar as a nasty chemical which my body can't cope with very well.

Hope this helps. Just do it...consult your doctor first though.

[DebbieF1603 in reply to AliDeJ]

Fantastic. Well done you ... and thank you for such a comprehensive reply. I will try again to reduce carbs. I do have a healthy diet and I exercise a lot but I need a magic trigger and I think carb reduction will be it.

[JanetRosslyn in reply to AliDeJ]

Inspirational! Well done AliDej!!!

[Poppy_the_cat]

One way: Candida albicans ( Thrush) weighs a great deal in the body. Candida demands that we eat Sugar. Beat the Candida back into submission, and you will lose weight. Two pronged attack; Flucanazole, anti fungal, prescribed from yr Dr, a 4 week course, one tablet per day... Combined with brewing your own Kefir, which is live Probiotic. These probiotics fight the Candida in our gut, that is weakened by the Flucanazole...and as the Candida does off, the beneficial bacteria from the Probiotics take over their space. A win-win situation.

I have lost a great deal of weight on this regimen; gone from a near 18 size to about a 14+ in 8 weeks.

I make coconut water Kefir (live Probiotic) because I am cow diary intolerant. It tastes something like Perry!

If you want my kefir instructions, just PM me with your email and I shall bounce them back to you.

Poppy the 🐈

[Hidden]

I havent tried these yet but use gram flour for crackers. Thought I would put it up then try it as low carb "bread" alternative.

bbc.co.uk/food/recipes/chic...

Or French version...

thekitchn.com/how-to-make-s...

[1Purplecrow]

I discovered that avoiding the white carbs (pasta, bakery,etc) and eating the colored ones, (carrots, fruit, peppers, etc) helped me lose pred weight, and curbed my carb craving.

Good luck, Jerri

[Jeanfkelly]

Hi - I too, like yoy, had increased appetite & wanted more food, even when I was full up. I turned into an eating machine whilst on 60mg Pred for 15 months due to resistant & recurrent GCA. I was advised by 2 consultants & my GP NOT to try & lose weight whilst on steroids as I was doomed to fail. However I had put on nearly 7 stone! and knew I had to do something so I set about limiting cards, all in between meals & had "acceptable" snacks for emergencies in the fridge - cooked cocktail sausages, celery& Low Philli., sugar free jelly & also had good quality exciting fruit available - mango,kiwi, paw-paw etc.

I the started to reduce VERY slowly 2.5 per fortnight if all was well. I think reducing helped at certain points in the process. The weight came off slowly.

Then I had help from a family member who came to stay & kept me on a VERY low carb regime - I only had porridge for breakfast - everything else was carb free. I lost 1 stone in 2 weeks on this.

I have 1 stone to go & I will have lost all of the steroid weight for this time - I was still trying to lose steroid weight from a previous episode of GCA. So far I have lost 6 stone in 2 years and am on 15mgs Pred.

My GP is delighted ( & surprised). My consultants are gob-smacked & I am over the moon.

It's been hard at times but the snacks in the fridge, meal planning & having someone to remind you of why you're doing this/cook an odd meal for you/encourage you etc seemed, to me, essential.

All the very best to you & if you want to ask more, please don't hesitate to contact me.

Jean xx

[Hollyseden in reply to Jeanfkelly]

Wow Well done you! That's inspiring to hear how well you have done.

[PMRpro Ambassador in reply to Jeanfkelly]

I need to borrow your family member!

[DebbieF1603]

Absolutely awesome. Thank you for your inspiring story.

[granofthewest]

I too struggle with weight. Having remained the same weight for many years have put on 7 pounds since end December. On pred for 3 months, PMR since Autumn 2019. It does seem frivolous to some and so grateful to be pain free lnut the thought of gaining weight each week upsets me. Already o low Carb diet and exercise daily. Trying Kefir yogurt daily at present as read fermented food helps good digestive bacteria, just to see if it helps.