Three months on pred, now at 9 mg, loss of appetite now occurring. Has anyone else lost appetite?

[darkred]

Three months on pred, now at 9 mg, loss of appetite now occurring. Has anyone else lost appetite?

[agingfeminist]

I don't remember getting loss of appetite at 9mg but certainly have had that problem at lower doses. Sometimes feel too tired to prepare a meal or eat. BUT I treat food like medicine. I set certain times and don't think about whether I am hungry, I just eat. I have dropped breakfast and eat lunch at 12.30 and dinner at 7.30. NO snacks just two meals. I do make sure those meals are nutrient packed (protein, loads of different vegetables). Sometimes I make my own beans in tomato sauce, enough for 3 days...then have them on toast with eggs or cheese on the top. Make very thick soups...full of vegetables and lentils/beans (liquidize) ..put yogurt/cheese on top. I sometimes find that once I have forced myself to eat a couple of mouthfuls I actually feel hungry and the rest of the meal is easier to eat. It is those first few mouthfuls that are difficult. Hope this helps. Please be in touch if the problem continues. You might want to raise it with your doctor.

[darkred in reply to agingfeminist]

Wow, I get misty, knowing that a kind soul took the time to give me such a complete answer. All wonderful suggestions and I see you have a lot of self-discipline and creativity with your meals and your schedule. Funny thing, I'm actually getting a little hungry, reading about the things you make. I do agree with you that food is medicine and wise choices can prevent a need for most pharmaceuticals. I think part of my situation is that pred affects the stomach, and I'm trying to avoid proton pump inhibitors and other such meds that can contribute to osteopenia. I do avoid most prepared foods, such as one gets in the frozen food section and, in the past, have spent a lot of time cooking. I used to enjoy wine with dinner and that always helped my appetite. Now, I generally "pay" if I have alcohol, which is probably very common when on prednisone. I thank you for your generous answer and I hope you don't mind my telling you that I admire you.

[agingfeminist in reply to darkred]

your reply is exactly the boost I need today! I also stopped alcohol once on pred. I never buy anything ready made...it is a lot of work but at least I know it is worth eating. I am lucky I can order online from my local supermarket so don't use any energy going shopping. Cooking is one of my physical exercises (though I use a food processor for chopping vegetables for soups etc and also use frozen vegetables) along with vacuuming! The pred has left me physically very weak. Life continues to be a daily battle...you sound like you are someone who can do the daily battle...in the hope of an easier future!

[Wouldlovetorun in reply to agingfeminist]

Hi agingfeminist!I found your reply very helpful.

When and how do you take pred? I also don't want breakfast but have had to eat it to take pred. I don't take omeprazole.

x

[PMRpro Ambassador in reply to Wouldlovetorun]

Even just s spoonful of yog or a piece of cheese is enough for most people.

[Wouldlovetorun in reply to PMRpro]

Thank you🤗

[Gossiplady in reply to agingfeminist]

Hi agingfeminist! Many thanks for your advice about eating. I was stupid enough last October to go into my supermarket without a mask, very quiet, got 3 items, out in under 10 mins and within 48 hours developed Covid. Vile for 3 weeks, but still not interested in eating. So I will take your advice.

[agingfeminist]

Now I take my pred (only 3 mg) at around 1 a.m. with spoonfuls of plain yogurt (at 1 am or=e 2 am because it is the best time for low doses, when you are trying to get the adrenals to switch back on). I haven't ever taken omeprazole. Larger doses (40 mg-10 mg) I took immediately following an evening meal...luckily it never kept me awake.

[Wouldlovetorun in reply to agingfeminist]

Thank you! Would 5.30pm be a reasonable time to take pred and how would I go about changing the time? I'm reluctantly tapering and at 12.5 mg (took it this morning with breakfast)and to drop to 10mg on Sat for 2 weeks: then more tapering 😬. Should I wait until Saturday and change the time and dose in one go and take it at 1 am?

x

[PMRpro Ambassador in reply to Wouldlovetorun]

As you get a bit lower, taking pred in the evening isn't as good for encouraging adrenal function to return.

The other problem with evening dosing is that the bulk of inflammation is created in the body in the early morning so taking the dose in the early evening may not be as effective. Just switching from breakfast to 1am in one go is easy enough - all that is likely to happen is a good days than to effectively a single slightly higher 24 hour dose because you took it early.

[Wouldlovetorun in reply to PMRpro]

Thanks 🤗

[HeronNS in reply to Wouldlovetorun]

Personally I'd not make two fairly significant changes simultaneously. I think that a drop of 2.5 mg at your level is too much, especially as you're tapering rather quickly. You'll find a big difference between 12.5 and 10 even if previous tapers have gone smoothly. It's recommended not to drop by more than 10% at a time. 2.5 is 10% of 25!

Which do you think would work best for you? Keeping your current dose for a few more days but trying the new time? And if all goes well, then tapering? Or tapering to see how that goes, and changing the time a few days later?

(In my experience I have usually taken pred in the morning, but for at least a year I was taking it at 2 a.m. and found it very helpful for the stage I happened to be in at that time, which was recovery from a major flare. Nowadays back to breakfast as I want to encourage adrenals to stop being lazy! Been on pred since 2015, starting at 15 mg. I never tapered by more than 1 mg at a time although in early days, between 15 and 10, I was able to go rather quickly.)

[Wouldlovetorun in reply to HeronNS]

Hi HeronNS 🤗Thank you for writing.

I don't want to taper but would prefer to go up to 17.5mg instead 😩. It's rheumy telling me to.

2 reasons for change of time: I would like to skip breakfast and would find it easier not having to eat a tiny bit to swallow meds and to see if taking pred at 1am would make a difference in how I feel.

I've gained weight and have the beginning of moon face🙃 so I really want to cut right back on how often I eat.

I think its too big a drop too.

Do you think stick with normal time and taper for now? Today I had breakfast, no lunch and dinner at 5.00pm. I read from a lady on here that glucose spikes between 3-7 hours, so decided to skip lunch to help the glucose.

My goal is to get to OMAD and lose weight. Its hard though.

🤗

x

[Wouldlovetorun in reply to HeronNS]

What a very long time to have pmr💐 What dose are you on now? And how are you feeling?

Hope its been a good Tuesday 🙂

x

[HeronNS in reply to Wouldlovetorun]

I'm tapering from one to one half mg. Next step will be from half mg to zero. Yes, a long time, but the median length of time before remission is actually close to six years. I feel well, but of course age is taking its toll! Could probably stop pred altogether, based on no symptoms, but am a bit concerned about the adrenal function, so taking time getting to zero. It improves all the time, so it's just a question of continuing to exercise my PMR-strengthened patience muscle!

[Wouldlovetorun in reply to HeronNS]

Very well done!💐Fantastic news🤗

x

[Wouldlovetorun in reply to HeronNS]

It makes good sense now you have got me thinking about it more... do the taper on Saturday and stick to meds and breakfast for a number of days; miss lunch and eat dinner at 5pm. Then see how I feel 🙂

[HeronNS in reply to Wouldlovetorun]

So you want to take more pred not less; do you have symptoms? If you do, no one should be telling you to taper. I wish doctors were more sensible.

My daughter, a registered dietitian, told me to eat a little protein whenever I had carbs, as that apparently helps to smooth out the sugar spikes.

Better to eliminate "white" carbs rather than skipping meals. That means refined cereals, added sugar and, if you can, reducing even natural carbs from some vegetables. I cut out practically all grains, except very small helpings of rice. Not having a particularly sweet tooth anyway I didn't have a problem with that, and continued to eat fresh fruit and vegetables, except white potatoes. It didn't take too long before cravings went away. I think when we crave certain foods it's actually our gut microbiome which is asking for that food. I started all this dietary stuff in June 2015, and in February of 2016 discovered I was craving ------kale! It was astonishing to me when I changed my diet to discover how much wheat I'd been eating. Had no idea! Salada became my new best friend as it involved a lot of chewing. I happen to like breakfast, in some ways it's my most important meal of the day, but switched from a big bowl of cereal to 1/3 cup raw pumpkin seeds (for iron and protein) two eggs, an orange and, of course, a mug of tea with milk. So breakfast became a high protein meal rather than a high carb one.

When I took pred in the wee small hours I had a small helping of plain yoghurt ready to have with it.

[Wouldlovetorun in reply to HeronNS]

What a pmr journey you have had. Good advice indeed about carbs and sugar.

I too am careful.

Thank you for your reply and support. What a great place we have here to meet and chat. I find it an important part of my day to read these posts and value all the historical ones too: such a wealth of experience and good advice.

I hope you get to zero soon and your pmr never comes back again 💐

Thank you again 🤗x

[PMRpro Ambassador]

Before going on to pred I had had carb cravings - and as soon as I started pred they stopped. I know - NOT the usual way round. My daughter finds the same.

I think agingfeminist has hit the nail on the head - at lower doses there is a distinct "I can't be bothered" when you are on your own that feels rather like lack of appetite, The diagnostic point it whether you happily eat when food is put in front of you by someone else!

And if she lived closer - I'd invite myself round ...

[Wouldlovetorun in reply to PMRpro]

Thanks PMRpro🙂Hope you're having a lovely morning and feeling well.🤗