Confused

[Quirkycrafter]

I was diagnosed with GCA in May 2023, put on 60gms prednisone and Adcal d3. This is now down to 18gms. I'm confused about diet, tea coffee inhibiting absorption of calcium and times between taking meds.

[PMRpro Ambassador]

Hi and welcome.

Diet - we recommend low carb to reduce the likelihood of weight gain and developing steroid-induced diabetes. How much you need to cut varies from person to person but all ultraprocessed foods, most processed foods and added sugar is a basic. Fruit should be limited - lots of carbs in some fruit.

The effect of tea and coffee on calcium is not written in stone - pred also tends to increase the loss of calcium through the kidneys and that is why supplements are recommended. Most important is separating pred and calcium supplements by at least a couple of hours as calcium tends to coat pred tablets and prevent the pred being absorbed. Lower in the gut, the presence of pred reduces the absorption of calcium from the gut. Separate them by 2-4 hours and the problem is solved. Pred for breakfast, calcium for lunch and dinner - some fat improves the absorption.

Other than that - you need to know what medications are involved to check interactions.

Is this what you meant?

[Fries in reply to PMRpro]

Hi PMRpro - is there some way we can let this advice be known more widely with medics throughout the country and patients? I have floundered since June with lots of these sorts of queries and want to help everyone. It is such a horrible illness (GCA and PMR). I also never knew that PMR is often linked with some people having both illness or developing it at a later stage?

I currently just have tea. Limit alcohol but have a small glass of wine on hols/breaks awayI have to be careful with my diet because I also have Polycystic Kidney Disease, osteoporosis, curvature spine spondylitis and have gained more conditions on the way - depressing!

I now try to keep to a low fat, high fibre, low or little processed diet, I cook more now! Fruit and veg. but will lower fruit intake now. If I have something that perhaps I shouldn't have I try and have one nice treat at each meal and other meals more healthy. Very difficult I know.

[PMRpro Ambassador in reply to Fries]

We do our best - and advertising the forum is probably the best path at present. The medics? Some are a lost cause!!!! Ongoing discussion with Prof Mackie in Leeds - but there is not enough money and the Goodies don't have enough time.

[Fries in reply to PMRpro]

Yes, I suspected that was the case. I will continue dipping in and out the forum -it could take over your life lol.

If I ever managed to get to the end of my journey and manage to at least rule out GCA once and for all - or near I will update the forum on my whole journey. At the moment I am doing it bit by bit.

I will continue to contribute to the Versus Arthritis charity too.

[DorsetLady PMRGCAuk volunteer]

This gives advice on Pred and Adcal timings -

healthunlocked.com/pmrgcauk...

PMRpro has replied on others

[musicalJ]

I agree with Dorset Lady that you need a degree in maths to work it all out. I was unaware that calcium could inhibit prednisolone absorption, so will need to stop eating cheese at the time I take the steroid. However, I was very conscious of the need to avoid inhibiting the absorption of calcium by having it too close to certain foods (ie most of what I eat). I have an additional problem in that I turn faint if I don't get enough to eat at the right time. So I have been eating oatcakes with a very small piece of cheese within 20 minutes of getting up, then taking my prednisolone, then having breakfast a bit over an hour later. Taking the Adcal-D3 2 hours after I finish breakfast and having lunch 2 hours after that. So I need a big enough breakfast to last 4 hours. I was finding that often I turned faint about mid-way between the Adcal and lunch, so spent ages trying to find things I could eat that would not inhibit the absorption of calcium. I came up with dairy products (which contain calcium) and bananas (which seem to enhance the absorption of calcium). Consequently I usually eat a banana late morning; if I go out I make sure I take one with me in case I need it. In the evening I take my second dose of Adcal 2 hours after I finish eating my evening meal; if I need supper I have it at least 2 hours after the Adcal. Things get more complicated on Sundays because I take Alendronic acid, which has to be the first thing past my lips and then nothing for at least 30 minutes. It says you have to leave 4 hours between the Alendronic acid and the Adcal... It's usually just under 4 hours, otherwise lunch would have to be very late - I take 10 minutes off the time either side of the Adcal. On Sundays I usually eat half a tub of cottage cheese about 10 am and then a banana about an hour later. As you say, it is all very complicated.

[PMRpro Ambassador in reply to musicalJ]

No - dietary calcium is OK, it is the large amount of calcium all at once of the sort that it is in a tablet that is the problem as it can coat the pred tablet. That doesn't happen with calcium in food. eep eating your cheese!

The only problem with a banana is the amount of carbs if you try/need to eat low carb.

[musicalJ in reply to PMRpro]

Thank you, it is a relief that I can keep eating my cheese and having milk on my cereal. Fortunately I do not have a weight problem; I was slim before becoming ill and lost 8lb in the first week of taking prednisolone. 8 months later I have regained 5lb, so still have a bit in hand.

[PMRpro Ambassador in reply to musicalJ]

I wish!!! I gained quite a bit in the 5 years of PMR without pred - inactivity due to pain and stiffness. I didn't gain with pred, it just rearranged itself, and I did eventually lose quite a lot but would like to lose more!

[potterylady in reply to PMRpro]

Same here!!!

[Louisepenygraig in reply to musicalJ]

I have problems with turning faint around lunchtime if I don't eat at the right time but this was happening before PMR. It's good to know I'm not the only one. It's not so much of a problem when I'm at home but pre PMR when I was out and about more I used to carry a couple of packets of sugar in my handbag. I take my pred with breakfast and the adcal with lunch. It was probably only through this forum I found out they needed to be separated. Before I was diagnosed with PMR, but probably had it, I fainted right out on a train and very nearly did a couple of other times. It was always linked to probably unknowingly pushed my body too far and either not eaten or over eaten!

[musicalJ in reply to Louisepenygraig]

Like you, I have had the problem with feeling faint for a long time. As a child, teenager and young adult I carried biscuits, later it was chocolate and then dried fruit. These days it's banana in the morning and oatcakes for the rest of the day. Sometimes instead of feeling faint I suddenly become very bad tempered, or maybe depressed, or just feel ill. Even after all this time I don't always realize immediately that I need food.