Increased appetite

[Seagees]

Diagnosed with PMR about two months ago, anyone with tips on how to cope with increased appetite ? On 20 mg of pred a day. Thank you.

[PMRpro Ambassador]

Hi - yes, one of the common side effects and one that really needs to be controlled to avoid putting on too much weight! I was very lucky in that I had had carb cravings BEFORE I was put on pred but within a couple of days that had disappeared.

However, many people have found that cutting the amount of carbohydrate you eat also helps with the hunger. Pred changes the way your body processes carbs and can lead to raised blood sugar levels and, sometimes, even diabetes. When you eat carbohydrate, especially the sort in snacks and cake, your blood sugar rises fast, your body releases a large amount of insulin thinking it is having to deal with a big meal and so the blood sugar level falls rapidly, overshoots where it should be and your body craves something sweet again. If you eat much less carbohydrate and what are called "complex carbs" if you do eat any it tends to reduce these blood sugar spikes and falls.

Good things to keep ready-prepared in the frig are carrot and cucumber sticks, hard boiled egg or slices of chicken or meats. Not large amounts of the latter of course but a rolled up slice of cold chicken is easy to eat. I always have a large bowl of cherry tomatoes sitting on the side board and snack on them. Often once your mouth has had something crunchy to munch on it forgets the hunger pangs! Slices of apple are also useful - but try to keep your intake of fruit moderate because there is sugar there too.

Another thing that helps is to drink plenty - and obviously unsweetened drinks. I drink black tea with a squeeze of lemon juice and fruit or herbal teas in the winter and water in the warmer weather. Often you think your body is telling you that you are hungry but really you are thirsty. If you feel hungry and go and get a drink first it also gives your body time to forget it was hungry. Be careful about using artificial sweeteners because your body still produces insulin because it registers "sweet - must be a sugar rush coming". Too much insulin is part of the cause of both overweight and type 2 diabetes because the cells become immune to its action and don't deal properly with the sugar.

Some people have found going to diet classes has helped them even manage to lose weight on pred. Make sure the class leader understands the problems of pred and that it is appetite control and not putting on weight that is more important to you than losing weight - some are very good about it. My way has been to cut carbs and it made a big difference.

And another thing - if you have been on 20mg for 2 months it is high time to start reducing your dose of pred. Members of the rheumatology department in Bristol keep their patients on the starting dose they use of 15mg for 6 weeks, then move to 12.5mg for 6 weeks and then to 10mg for a year. You really should be on the way down by now - and as you lower the dose the hunger problem does improve.

Their management plan for PMR is in this paper which was written to help GPs (I assume your GP is managing you?) in diagnosing and managing PMR:

rcpe.ac.uk/sites/default/fi...

Good luck

[Seagees in reply to PMRpro]

Thank you, very helpful. Yes dosage is being controlled by Doctor, tried reducing to 17.5 for two weeks, pain worsened back to to 20 blood test next week. Thanks again.

[PMRpro Ambassador in reply to Seagees]

Did the increase in pain come immediately you tried the 17.5mg dose? Or did it take a few days to start? Some people can't tolerate too large a drop after some time on pred and suffer steroid withdrawal pain - that is the pain that starts immediately. There are a couple of reduction plans wheer you spread a 1mg decrease over a few weeks and they have enabled a lot of patients to reduce without problems. There is one on a thread on this forum which is the one I worked out by trial and error, have used it for the last 2 years and which has enabled me to get from 15 down to 4mg in that time - which I had never managed before trying to go from one dose to the next overnight. I've been on pred for 5 years - so it is high time I was on something low! We used to think it was only at low doses such a plan was needed - and then realised there were lots of people struggling even at 15 or 20 mgs so we have been suggesting it earlier in your PMR journey.

A similar plan from another member of the forums is being used by a consultant and he has found the concept works well - as we knew it did!! We used to think it was only at low doses such a plan was needed - and then realised there were lots of people struggling even at 15 or 20 mgs so we have been suggesting it for earlier in the PMR journey.

healthunlocked.com/pmrgcauk...

[rosalinda in reply to PMRpro]

What good advice. I had GCA and PMG and have come down from 60mg to 1mg of pred over a period of several years. I joined Slimming World 6 months ago and have lost nearly 2 stone and am now at target weight. Basically, their advice is the same as yours and it has worked for me and I haven't been hungry and snack on a slice of chicken or veg sticks or a few crab sticks. Just lost 1 lb most weeks but it worked. Having reached target weight two weeks ago I have added in a few sweet things as looking after grandchildren for half term this week and biscuits etc. are in the house and feel tired and listless. Am back on track today and hope to feel much livelier once I am eating properly again. I haven't put on weight, but am feeling sluggish.

[PMRpro Ambassador in reply to rosalinda]

Thanks for another suggestion - have you any more? I was casting around for other things. I get through about a kilo of cherry tomatoes a week - just as well I live in Italy where they are rather cheaper than the UK! I have never lost more than about 1lb a week but it has mostly been in the right direction.

And I too notice I don't feel as good if I give in to temptation and eat something carb-y when out for a meal - however much I enjoyed it at the time!

[Hidden]

Hi Seagees, i have joined a diet club as i have put nearly a stone in weight on,in last 2 wks i have lost 2lbs.

not a big loss but i was very happy that at least i didnt gain weight.and if i can even maintain weight i will be

happy.It can be so hard when we feel so hungary but its about making the right choices,and the odd treat

is ok to.And drinking water is helpful,its finding what works best for you sometimes trial and error.

Take care.xx

[Seagees]

Many thanks, that is very helpful.

[epsharp]

I was diagnosed with PMR/GCA in Oct 2013; started at 60 mg of pred, now tapered to 7.5. My rheumatologist said on last visit the goal for my next visit in 3 mo is to get to 6 mg, possibly 5 mg. I have gained about 25 lbs - more like unappealing fat pockets everywhere - (~1.8 stones). I've been too sedentary (understandably) this past year and it shows. My doc recommended to start slowly with walking and arm exercises and follow a Mediterranean diet to lose the excess weight. Before this crappy illness came on, I had lost 28 lbs walking 3 & 5 mi using the Leslie Sansone "Walk-Away-The Pounds" videos on YouTube. There are several 1 to 5 mi versions. Time to start again!

[allotment-lover]

I don't know if I have been lucky, but I have lost weight without trying since getting on to about 5mg Pred from a start of 50mg. I put on about a stone and have nearly lost it all - my appetite just is not so big. I used to be SO hungry, I would lie in bed thinking about what was in the fridge! So do not give up hope. I also lost that horrible lump of fat under my chin.

Good luck.