Question about carbs

[Dontwannabesick]

I know we should limit our carb intake in order to minimise weight gain, but I'm getting the impression that carb consumption can also have an adverse effect on the disease and how we feel. Is this the case?

[SnazzyD]

Hello, personally I feel rubbish if I eat a refined carbohydrate more than once in a week. When I was on high dose Pred it was even worse because my body completely overreacted with the insulin and gave me a low blood sugar later. This was because it was already dealing with the Pred’s effect of making the liver produce more glucose from its stores. As a rule the body doesn’t like high glucose level in the blood which is why insulin is pumped out in large quantities when it happens. If high blood sugar wasn’t a problem, diabetes wouldn’t exist. There’s a lot of research to show that high blood sugar fans the flames of inflammation and makes infection resistance lower.

[Dontwannabesick in reply to SnazzyD]

Thank you. I think I need to be more careful!

[SnazzyD in reply to Dontwannabesick]

Once you’ve really cut back, the same treats don’t have the same appeal, so it’s not all torture! I did allow myself two small glasses of dry white wine per week; the gal’s got to have something!

[PMRpro Ambassador]

Depends on the person. Simple carbs cause spikes of blood sugar - and sugar is very pro-inflammatory so for some people it can feed the inflammation. I often say to people who ask if gluten-free or this-free or that-free will help that they need to try. None of it made the slightest difference to me as far as I could tell - except carbs make me gain weight! Not directly an influence on the PMR but important nevertheless.

[Dontwannabesick in reply to PMRpro]

Thank you

[Marijo1951]

When I started taking pred I gave in completely to the ravenous hunger and this continued for a while until I found I'd put on about 20 lb in weight - and I was overweight to start with. I haven't eaten any added sugar since the beginning of October apart from one bite of a mince pie on Christmas Day which seemed so disgustingly sweet I couldn't eat any more. How my taste buds have changed, since I could easily have swallowed 3 or 4 the year before. Fortunately I've always loved veg, salad and fruit as well as chocolate and cakes. And I tend to agree with you - not only am I losing weight but I also feel an awful lot better than I did not so long ago, and I think my much improved diet is partly responsible.

On the subject of veg, I had golden beetroot and purple carrots in my veg box this week - the reverse of normal. I had some for dinner tonight and it felt very topsy-turvy although delicious...

[Dontwannabesick in reply to Marijo1951]

Thank you

[enan-illuc]

Dontwannabesick,

I am no medical expert but I personally feel carbs do have an adverse effect on the PMR/GCA and add to weight gain from the Prednisone. I feel much better when I do not have a lot of carbs. I hope this helps.

[Dontwannabesick in reply to enan-illuc]

Thank you. I do think I'm more headachy after too much indulgence, but I'm also on methotrexate, so not sure.

[maria40]

I think the carbohydrates which should be avoided by everybody are those which are refined and processed. Vegetables, good wholemeal bread , wholegrain unprocessed cereals and pulses are much less harmful, if harmful at all, when part of a balanced diet.

[nickm001]

Balance diet is always better then any diet that exclude things. I have not noticed personally any difference and consume lots of carbs, but in a natural, unprocessed form. There needs to be a balance between activity and caloric intake. After 3+ years of PMR, my weight has not changed much and stayed between 71-73Kg. The only time I gain weight was during the period when I had my bike in for repairs for 3 weeks. For each week that I missed biking, I gain almost 1 Kg/week, but it all melted away after.

[PMRpro Ambassador in reply to nickm001]

Yes - but you are able to exercise and don't have a weight problem. Many who can't ride a bike or do other such exercise need a different approach. And anyone who has a blood sugar problem definitely needs to restrict carbs,

[GerriMc in reply to PMRpro]

That’s spot on PMRpro. Carbohydrate is the body’s preferred source of fuel. If you are an athlete, you load up on carbs before an event so that there is a quick release of energy. If you are sedentary or cannot exercise, your body has no outlet for the carbs consumed and stores it up and you put on weight.

[nickm001 in reply to PMRpro]

It is not my intention to dispute what you stated, but to point out another option. We are all different. I tend to believe that I am not the only one with PMR that can exercise. If you look at stats from general population 27% of men and 18% of women between age of 18 and 64 are active and exercise ( US stats). Since majority of participants here are woman that number for this group is probably closer to 20%. It would mean that almost 1 in 5 were active before PMR. It is EXTREMELY important for those to start any kind of activity as soon as possible to stop and prevent muscle wasting. Activity impacts person physically and mentally, makes you stronger and also helps with pain and stiffness. Those who exercise don't need to avoid carbs , and in fact should not change diet at all.

When I found this site at the beginning of PMR, I could hardly make 100 yards walk. There was one person, old timer, who pointed out that he does biking and it can be done ( Dan38655). He was the one that gave me encouragement to start. This is why I post about exercise. It is important to know that we can have our life back.

lastly small clarification.. you wrote " but you are able to exercise and don't have a weight problem" would be more correct to say

"but you are able to exercise and that is why you don't have a weight problem"... That was the main point of the post.

[PMRpro Ambassador in reply to nickm001]

And I only pointed out that there are a lot of people on the forums who CAN'T exercise as much and if you looked at the profiles here I think you would find a lot of people who are over 70 or with other medical conditions that preclude riding a bike! There is a lot of discussion about approaches to exercise with a heavy emphasis on things that people who can't walk can try. Personal history also has a part in it - I have never been used to riding a bike because I didn't live in places where it was a safe option. I also have back problems that led to be being told NOT to ride a bike.

[piglette in reply to nickm001]

My father mentioned some research for people over 80 and exercise. Apparently even staggering out for a few minutes walk made a world of difference to just sitting. Even doing yoga in a wheelchair improved people’s well-being. Frightening that so few people actually exercise from what you say. Of course it depends what criteria they mean by exercise, two hours in the gym daily??

[nickm001 in reply to piglette]

Your father is correct...I have read about some experiment in which they gave weight training to people in 80's and 90's and in just 6 weeks their strength doubled! Basically any amount of activity is better then none.

[piglette in reply to nickm001]

Even just getting out of your chair every half hour they reckon helps.

[GerriMc in reply to nickm001]

I wouldn’t disagree with any of that. I was a runner and a rower. When PMR struck, I kept up my sport. However as I reduced my Pred dosage, I was hit with severe fatigue which I found very hard. I also had problems breathing wherever I pushed myself. I certainly haven’t given up and exercise when I can. So, yes, if you can, do exercise but if you can’t, don’t expect to be able to eat the same as when you are exercising.

[nickm001 in reply to GerriMc]

I do know what you mean. I felt the best at 6mg and below that I cannot push as hard as I used to. It just takes too long to recover. Currently on 3 ->2.5mg level.

I use Polar HR meter and record every exercise session. Another thing that I noticed is that my breathing becomes very hard at the beginning of the exercise (first 5 min or so) while my HR is lagging and not responding as quickly. Later on (10-15min) heart catches up and it is much easier. I had to adjust pattern in the exercise to accommodate this new condition. The reason I am explaining this is that you seem to have similar response " problems breathing wherever I pushed myself" - and the solution might be longer warmup with gradual load increase. I have pretty much adopted low intensity exercise as a norm ( about 60-70% of max) and then HIIT session once a week with 5x ( 60sec high/90sec recovery ) pattern.

[GerriMc in reply to nickm001]

I use the Fitbit charger 3. Yes I need a longer warm up too. I got to 3.5 mgs last October but following a spider bite, I got cellulitis which caused a lot of problems. I had to go back to six and am now reducing slowly again. Well done on getting to 2.5! 👍🏼

[nickm001]

Any activity that uses large muscle groups will do... biking swimming, and pretty much anything that rimes with it will do :). I would love to live in the place like where you live, because my passion is mountain biking. During summer it is not unusual to bike down the slopes of sky resort and use lift to get back up again. Remember Michdonn? He is 80+ and active ski instructor ( and he also bikes too), although this season he had injury and is on sideline.

[PMRpro Ambassador in reply to nickm001]

I skied with PMR and pred too until injury and other factors persuaded me it was time to stop. I'm not disagreeing - I'm just saying not all of us can.

[MhairiP]

I certainly felt better when I reduced carbs, and I didn't gain weight (in fact, I lost some). I suppose the proof of the pudding would be to stuff myself with carbs to see how I feel... but I don't want to - I'm pretty sure I'd feel lethargic and stodgy!

[Dontwannabesick]

Prior to GCA diagnosis I was walking 3 miles twice a day with my dogs. Prednisolone at 65 mg took away the strength in my legs. I love my walks, but when you are reduced to shaking wreck, who, to most people appears to be a staggering drunk, you need to acknowledge your new status. I have gained very little weight. The reason I asked my question is that I suspect carbs contribute to my headaches and nausea etc. I push myself to do as much as I can, but when your legs say 'enough,' and your hands and feet go into spasm you have to accept that there are limits and these are as a result if steroids and mtx etc.