Do foods contribute to the disease lasting?

[Ronswife]

I am on 5.5 years with prednisone for pmr and get rather depressed. My active life has changed significantly. My husband has been my savior but he is wearing thin and thinks my diet is my problem. I am at 103 lbs at 5 ft 3 inches. When it first hit I had no appetite and food tasted horrible. I was down to 98 lbs. and root beer and chocolate cake saved me. I stopped that years ago but foods taste strange to me all the time so I eat what tastes better. Like white bread and not grainy. I don't eat a lot of carbs or drink alcohol. I go with what works to keep on the lbs. I want to cook good food but I am so tired. I am sensitive to any chemical flavors in easy packaged foods and need to cook for myself more. Even when I know I need a salad I am too tired. I depend on my husband a lot to grocery shop and he tries to be available to cook for me. Does any one out there have these issues or know if I am part of the diet problem. I was so healthy before this that my GP MD said to keep up with what you are doing. I'm 72 now. I am offended my husband thinks I should eat like him. I love berries but they are too sour. He eats yogurt but I'm lactose intolerant. He loves grainy bread and can eat anything. I'm really not adding sugar to things either.

[PMRpro Ambassador]

Who knows? But there is no real reason why diet in general will make the disease last longer - unless something affects the immune system so directly which I doubt somehow, although never say never. The disease is an autoimmune disorder that creates inflammation - your diet may increase the amount of inflammation if you eat some things but that varies from person to person and you have to decide what affects you.

But I find some of your comments strange - I eat a lot of salads and vegetables, and that is because I find them far easier to prepare for me eating alone than a lot of other things. What is difficult about having a bag in the fridge of pre-washed and spun salad leaves? Or chopping up veggies to roast in the oven to go with your meat/fish? Here where I live there are large amounts of lactose-free dairy on the shelves - and all non-dairy products as eaten by vegans are dairy-free. It is the bacteria used to make the yoghurt that are important, not the base they use. And you can always buy a good pro-biotic.

I do understand your problem with foods not tasting as you want them to discouraging you from eating, my husband had a very restricted diet as a result of a similar problem, However, when the palliative care unit put him on a low dose of steroid he suddenly started eating a normal range of foods, including things I had never seen him eat before, because the steroid made him hungry! There were still things that didn't taste right and he rejected them still - but what he did was try other things he hadn't been eating and discovered a range of new items to widen the range.

[123-go]

Hello Ronswife. I felt so sorry for you while reading what a struggle you're having and would firstly recommend Kate Gilbert's book- 'PMR/GCA: A Survival Guide'.

I am going to concentrate here solely on your diet (I agree with your husband ) and make a few suggestions some of which you may not like 😏.

I can fully empathise with your 'food tasting strange' predicament which is how I was in the early stages and when a few mouthfuls of anything were all I could manage and my weight dropped by the day. Being too tired to cook will be familiar with many here. However, as you know, what you eat has a great bearing on your health and well-being and you do have to carefully consider your diet. I would be looking for easy, quick recipes and maybe you could spend some time looking on the internet for these. In your position I wouldn't rule out all carbs as long as they are healthy. Healthy fats like good quality olive oil and butter rather than spreads should be incorporated.

Homemade soups are really nutritious especially when low salt stock cubes are used. An easy way to make these may be using frozen veg to save all the washing and chopping. I'm not a fan of chunky soups and my blender has become a good friend. Add some lentils for extra benefits.

I would suggest that you introduce some healthy carbs into your diet which may give you more energy. Unfortunately, the white bread you enjoy contains a high proportion of sugar which is highly inflammatory (as are cakes and cookies and also items from the deli counter). How about toasting a slice of wholemeal bread and cutting it to make croutons for the soup?

Can you eat eggs?:

Omelettes with mushrooms or cheese: poached or scrambled on the dreaded wholemeal bread?

Oatmeal for breakfast with just a drizzle of honey to sweeten is healthy.

I don't want to go on and on but I have a feeling that if you make researching healthy, anti-inflammatory foods a small project for a few days you will come up with some ideas for simple but nutritious meals that you will enjoy and that will contain many of the essential vitamins and minerals you need. If you can plan a week's worth of meals it will save you the daily worry of what you're going to eat.

One last thing, you don't have to give up chocolate 🙂 providing it's 70% or more cocoa solids and that you limit it to a few squares a day.

[SnazzyD]

There have been some good ideas put already. Have you ever had your vitamin D level checked? A low level (easy to end up with) can make one feel low and rubbish and also is implicated in some studies to be contributory to autoimmune conditions. Do you take any mineral supplements along with vitamins?

[Hildalew]

Just picking up two points in your tale of woe - some of the people whose systems don't like cow's milk, find that goat's milk is OK. Goat's milk yoghurt is worth a try - and it has the added virtue of having more calcium in it than cow's milk yog.

Some berries are, indeed, very sharp especially if you have been used to a diet that, one way or another, has had sweetness in it. I just love berries with yoghurt but sometimes I have to add the tiniest drop of honey.............. If you're trying to cut out all carbohydrates, you won't want to do that but if not, just try a tiny, tiny drop of honey.

[oscarandchloe]

I have tried to cut out sugar completely, and limit other carbs to a little brown rice/couscous or extra carrots or pumpkin. I found that that a completely carb free diet didn't suit me as I felt jittery and weak which I presume was low blood sugar. I find that Truvia ( a sugar -free sweetener made from the stevia plant) is excellent for sweetening berries, fruit compotes, oat porridge etc. It has no chemical nasties in it and has almost no after taste when used carefully sprinkled on berries. I think you are in USA but I'm sure there must be similar there.I hope this helps - keep well.

[ImC_]

Ronswife, my heart goes out to you; you sound exhausted.

I am similar build to you - tiny bit lighter but an inch shorter. And I am 63. I didn’t give up any carbs when I started PMR and Prednisolone in summer 2020, because I don’t have a sweet tooth anyway so I don’t really eat cakes or biscuits but I thrive on porridge, bread and root veg. And what’s more I have a glass of wine in the evenings.

I only cook easy basic things though - a plain piece of fish simply baked in foil, a tray of chopped vegetables rolled in a little oil then into the oven and a bit of steamed broccoli - could you and your husband do that together?

Stick a chicken in the oven with some baked potatoes and microwave some peas?

Or just the baked potato with some tinned tuna?

Oh and a daily vitamin D pill, as already mentioned.

I recommend Diana Henry’s book, From the Oven to the Table reviewed as being “for bung-it-in-the-oven cooks everywhere” which accurately describes me. Most recipes are just about chucking things into an oven dish then having a sit-down until done. Lots of people like The Roasting Tin Cook Books too.

You might find some new flavours that work for you but without having to make much effort.

I have another condition (miraculously alleviated by Pred) which causes me to completely lose my sense of smell for long periods, so I do know about food not tasting quite like it should. It’s a drag.

Surely not everyone on Pred has to give up starchy carbs?

I hope you find a way though.

[PMRpro Ambassador in reply to ImC_]

Never mind steamed broccoli - have you tried roasting it? Roast cruciferous veggies are a revelation - especially sprouts

[Nextoneplease in reply to PMRpro]

I agree 😊 I regularly roast cauliflower segments in olive oil, lemon juice, fresh ginger, turmeric and a touch of chilli. And I love sprouts shredded and sir fried with garlic and chilli ….

[ImC_ in reply to PMRpro]

sounds great! I will try all of them!

[Sophiestree in reply to PMRpro]

with balsamic vinegar and oil - yum - oh and chuck some chick peas in if your carb quota will go that far...

[AdoptMeow]

Most people cannot understand what constant deep fatigue and pain does to us. Last week it was a major project for me to bake two potatoes, eat one for dinner and chop and fry the other with onions for lunch. Others have given good suggestions, so I will add a few more.

The eight essential B-complex vitamins are imperative for our health and meds increase our requirements. They keep our nervous and immune systems operating (including taste and smell), and form our hormones, enzymes, and neurotransmitters. Depression or anxiety is a major warning of deficiency. It is highly likely that you need B-12 injections because you can no longer absorb it from the GI tract. If you read about B-12, you will recognize some of your symptoms.

Healthy fats are needed everyday--olive/coconut oil, butter and cream if there are forms that don't aggravate the lactose intolerance, fish, meat, low sugar chocolate (at least 50%), and Omega 3s supplementation.

Limit grains, especially wheat, because they are high in sugar-glucose and select non-GMO products. Glyphosate is inflammatory and toxic. I watch carefully for organic items on sale.

Building the probiotic bacteria in your GI tract is another worthwhile effort because it improves your digestion and immune system.