Just been Diagnosed with GCA

Thank you groovy-chic.....My head is all over the place at the moment. Just wnt to be pain free but am worried about the side effects of the steroids :-/ xx

Thank you for your reply EileenH & Thank you for the links, I will have a look at them. I am already following the slimming World regime & intend to keep going with that & hope it will help :-) xx

Eileen, I am up at 4 a.m. at the Pacific Northwest area here in America and reading the posts because I cannot sleep.  Like you said....."don't lie in bed and toss and turn".  So sorry to read about GCA and the horrible headache and eye problem it can cause.

On Monday my GP put me on 30 mg of Prednisone for severe back/girdle pain, and after 5 days the pain started to get less.  30 mg is high for me and I cannot sleep well.  He said it would take at least 1 month to feel better and being able to walk without pain and to adjust dosage as I feel.  I know, I need to do this VERY slowly.

I was on 10 mg of Prednisone before the flare.

Thank you for all of your great advice and knowledge you give to this website as you are a patient yourself.

Erika

Hello EileenH - I am trying to avoid putting weight on with the Prednisolone, finding it difficult. Been on 15mg for 10 weeks and now just starting slow reduction following the Bristol plan. Only just started to see an increase in weight and an increase in appetite. I was very interested in what you say about carbohydrates. Could you please explain what processed carbohydrates are. Am I right in classing bread and pasta as processed carbohydrates. Also I have started to get a slight moon face. Will this disappear if I am successful in reducing the steroids. I have to be careful with my weight because I have type 2 diabetes. Any help with this problem would be greatly appreciated. 

Hello again EileenH - I am now a little more confused about carbohydrates. I have just seen simple carbohydrates mentioned on a post.  What are 'simple carbohydrates'. Could you explain for me please.

Some people describe them as anything your granny wouldn't have recognised! Yes, bread and pasta would be included, plus cakes, sweets, snacks, cereals - all those packaged goodies in the supermarket and in the baker's window. I don't bake or make meals that use pastry for example. I eat meat, poultry and fish - bought fresh from the butcher and the fish counter - and lots of vegetables, particularly leafy ones that are grown above ground. Root veggies and fruit actually contain quite a bit of sugar so should be restricted. It has been relatively easy for me as I am allergic to something in wheat so I'm not tempted too much and have been used to cooking from scratch for years - you would be amazed where wheat comes in!

However - I could eat rice, polenta, crisps and wheat-free goodies such as rye bread but I do notice that as soon as I eat more than a very small amount of any of those I don't lose weight and only when I cut them out almost completely does the weight come off. Gluten-free doesn't help by the way - the substitutes for wheat in them are very calorie/carbohydrate dense and there is a load of sugar - just like any other manufactured stuff. This sort of diet should also make controlling your blood sugars easier - if you are lucky you will need less medication if you are on any. I'm sure you do restrict your carbohydrate intake anyway don't you? Pred is a problem for many diabetics as it changes the way our body processes carbohydrate and can make it difficult to control blood sugar levels. Does your doctor allow you to check your blood sugar levels regularly? Some don't but it is important to know what foods make things difficult for you.

Yes, the moon face will go once you are able to get to a lower dose, for some people it will go quite early, others have to wait to below 5mg - as with anything else in PMR we are all different. 

Exercise is also important - I know it is difficult with PMR to do much but doing as much as you can without making yourself exhausted is important. Many people find they can manage aqua aerobics at a gentle level and otherwise keeping getting up and moving a bit is exercise too and helps avoid the stiffness. Trying to walk for half an hour a day is a good aim - you will find it gets easier. Some people are very lucky and are still able to walk quite a lot or ride a bike. Others are almost housebound even on pred but no one should feel they must be able to do something just because someone else does.

Simple carbohydrates are just sugars - they are made of one or two molecules, are broken down very quickly by the body so raise the blood sugar level fast. They occur naturally and examples are table sugar, brown sugar, powdered glucose, honey, jams, marmalades and jellies, fruit juices and sweets and soft drinks. Perhaps the most important in bought foods nowadays is corn syrup - the amount used in baked goods especially has increased a lot in recent years. It is cheap and makes the food moist and keep for ages - allowing a long shelf life. The fructose in it is very bad for us and probably is a cause of Type 2 diabetes by causing cells in the body to become insulin resistant.

Complex carbohydrates are also known as "dietary starch" - substances made of lots of sugar molecules joined together like a necklace and sometimes forming branches. It takes the body a lot longer to break them down to get the energy from them so it takes longer for them to reach the blood as glucose. You find them in green leafy vegetables, whole grains and food made from them, root vegetables and beans and peas.

OK? Is that a help? Just ask if you want anything more explained.

Thanks for your reply EileenH. I do test my blood sugar periodically. That was one of the things I was insistent about when my Diabetes was diagnosed because as you say it is important to know how I react to certain foods. Recently I have not been quite as well controlled so I really need to get things under control before it gets out of hand. I will certainly try, as you suggest,  to keep to just fresh meat and fish and veg. Cutting down the fruit will be hard, I really love fruit. I don' t have much of a problem with exercise as I can still manage to use my walking machine but I just have to use it much slower now and obviously not for as long. Thanks for your prompt reply. Knowing that help is so readily available on this site does take some of the stress away. 

It's almost certainly the pred that is messing up your control but you are aware of it and that is half the battle. I think Nefret also had control problems at higher doses - I'm sure she will have some suggestions if she is around. 

Thank you EileenH for the Carbohydrate explanation. Everything is much clearer to me now. I hadn't heard the term 'complex carbohydrates' either.When I was diagnosed with Type 2 Diabetes in 2008 I was given some leaflets by my GP but not much help relating to diet. I have managed to control my weight and my Diabetes very well up to now with diet and Metformin just twice a day but it is evident I am going to have to be much more strict now that I am on the Prednisolone and keep off the carbohydrates altogether. Thanks again.   

I despair sometimes about GP advice to newly diagnosed diabetics! One lady was told she couldn't have blood testing equipment, it was totally unnecessary as the HbA1c was a far more accurate assessment of BS control. Well yes - except if you don't know what your BS is doing you can't get it right can you? She "borrowed" her husband's stuff and was finding BSs well into the 20s - after a "healthy" breakfast of cornflakes and skim milk. It all improved a lot after we explained what was good and bad about carbs. 

Good luck with your diet - you obviously have the basics sorted :-)

Yes, I agree entirely with what you say Eileen. My grandmother had Diabetes and watched her diet carefully and lived a good life until she was 84. On the other hand my brother in law didn't do anything to control his diabetes with diet and he suffered dreadfully and had a very unpleasant death. I have also heard many people say they are discouraged from testing and told to rely on the HbA1c result but it is too late to change things once you get that result if it is high, if you see what I mean.Much better to keep a check as you go along. Also it gives me peace of mind and I don't get anxious before my six monthly test. It certainly isn 't easy and I do allow mysef treats on special occasions, like my grandaughters recent 21st birthday party and when I go away on holiday. I had to ask my GP to refer me to a Dietician. She told me that my diet was fine but I had to watch my portion size. Even she did not explain to me about carbohydrates. Thanks again Eileen. 

My husband's speciality involved a lot of work with diabetics - once they had got to the amputation stage. He would come home and tell me about a patient who'd arrived looking about 20-odd years older than him - but was actually 5 years or more younger! Gangrene is not a nice way to go.

I see exactly what you mean - how you can improve an HbA1c level without knowing what your day to day sugars are doing is a mystery to me.

That piece of birthday cake on one day isn't going to kill you - but a piece every afternoon might well do so!

GM70, as EileenH says gluten free is a waste of time, another thing against it, in UK anyway, is that the bread anyway tastes disgusting, I think. If I were a celiac I would just give up bread. I suppose because celiacs can get gluten free products on an NHS prescription is why they eat the stuff.

That's what I did ptolemy! UK bread isn't worth the effort anyway IMHO! But the pasta is fine - just double the price ;-) But most gluten-free cakes and biscuits have the most appaling calorie counts - shame sugar is gluten-free I suppose!