Pred again: Hi I have been diagnosed with PMR... - PMRGCAuk

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Pred again

24paula profile image
8 Replies

Hi

I have been diagnosed with PMR again and put back on prednisone I really did not want to go back on the steroids I had a awful time 2 years ago when I was put on them, I gained 3 stone I just could not stop eating!!! We talked through everything with my consultant and I agreed to go on 10mg and I need to see him in 3 weeks. I have still a stone to lose to get me back to before taking the Pred and then I need to lose quite a bit of weight to get to a healthy weight, I just don’t want to pile it on again!!!this morning I joined slimming world on line and I have started the diet, I did SW years ago and lost but I do feel calories is better but I have not got the energy to stand and weigh all my food out, at least doing SW it’s only very few foods that need weighing out, just wondered if anyone else is doing SW while on Pred? If so how you doing?

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24paula
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Koalajane profile image
Koalajane

I list 3 stones by cutting carbs

PMRpro profile image
PMRproAmbassador

Hi - and welcome back.

There have been people who used SW with varying degrees of success when on pred. At one time SW was very carb-centric and that simply doesn't sit well with pred because of the effect pred can have on carb metabolism. I believe there is also a low carb option that seems to be better though.

What we usually advise is cut your carbs - because that achieves more than one objective. Pred makes your liver release random spikes of glucose from the body stores in muscle and liver. They can lead to very high blood glucose levels and the body releases a lot of insulin, expecting this spike to be followed by a full meal which has to be processed. But there isn't one and the blood sugar level plunges to a low level and that triggers the carb cravings so you eat something that will bring the BG back to normal. Eating the carbs triggers more insulin and a rollercoaster gets going of up and down BG levels and constantly wanting to eat something. Removing the dietary carbs helps smooth that out. It also reduces the risk of developing steroid induced diabetes and weight gain which can both also derive from the release of so much unneeded insulin. It really does work - I lost 35lbs while still on 10-15mg pred.

24paula profile image
24paula in reply to PMRpro

Hi

Thanks for the reply I really did not think I would be back here so soon, it’s good to know you can lose while taking pred, yes I think it’s the earlier version of SW the red and green days where carbs are limited, the new plan you can eat as much as you like of them.

Did you limit yourselves to so many carbs? Were you on a high dose ? Thanks for explaining the above, I now understand how the carbs work, but no one tells you!

I will keep a eye on my carbs now, I don’t think I could cut them out but I could reduce them.

PMRpro profile image
PMRproAmbassador in reply to 24paula

The things to avoid are processed foods - baked goods have loads of sugar in them and ready meals and the like have sugar hidden where no sugar belongs - added sugar and careful with fruit which may be healthy but has a lot of sugar.

I and SnazzyD had to get down to very low levels of carbs to lose, maintaining is easier, but it depends on the person. The amounts of carbs you mentioned to Miserere woud have been more than she and I could manage and lose - there are some carbs in all veggies and most dairy products and it all counts so there is no cheating. But once the weight comes off it is encouragement to persevere.

I find this website really good for learning what it's about

dietdoctor.com/low-carb

It costs nothing if you don't want to join, , there are recipes and tips all over the place on the internet and once you learn the things not to eat it is easy to adapt. You can cook similar food for others in the family but they get potatoes or rice, you just don't take the carbs. Another advantage I found is that not eating carbs made me far less hungry and I automatically ate less after a couple of weeks.

Miserere profile image
Miserere

I lost weight whilst on Pred by following a very low carbohydrate diet. Worked perfectly and I now eat this way all the time - no weighing of ingredients, just an awareness of carbohydrate content.

24paula profile image
24paula in reply to Miserere

Hi Miserere

Thanks for you reply, it’s good to know that you can lose weight while taking Pred, did you have a number of carbs you stuck to, been trying to lose weight for years but carbs I really don’t understand, the SW red days which I did years ago your only allowed so many carbs like 2 slices of wholemeal bread from a small loaf, and potatoes it’s 7oz if I remember right, I have always done calories and done well on that but of course doing that you can just eat nothing but carbs, so i thought SW would be good, it’s just getting the right foods in to eat, which I am finding very hard, I did my shop Thursday but still not got everything.

How long was you on Pred for? I’m just hoping I’m not on it to long it’s not just the cravings it’s the tiredness and I just don’t feel like doing anything, even a trip to the shops is a effort by the time I get back I need to sit down and have a nap, well I will give it a good go , at least I know all my trying may not be in vain now.

Miserere profile image
Miserere in reply to 24paula

I have been on Pred for 2.5 years because I flare 3 times - always between 7mg and 5mg. The dr advised initially to reduce by 1mg/month but I have now found that once I reach 7mg I need to go much more slowly - so .5mg on one of Dorset Lady's slow tapers and stay at that dose until you feel comfortable. Between 5 and 7mg is often where your own adrenal glands have to start working again after they have had a rest because you are taking steroids which means they didn't need to work. Sometimes it takes a while for your adrenals to stutter back into life, hence the need to reduce more slowly once you have reached the lower numbers. But, we are all different - this is what I have found.

You can try Michael Mosley's books or look for Fast 800 or Keto 800 recipes online. He promotes a Mediterranean diet with few carbs. I no longer eat bread/potatoes/rice/pasta. I make cauliflower rice using the food processor and courgette spaghetti etc. I really don't miss any of the stodgy stuff now. You can also look at Dr Sarah Myhill's (UK) PK diet or you can look at Ken Berry's (USA) videos/podcasts as he uses the keto diet and sometimes carnivore. There is a Facebook Group run by Richard Mathews (Canadian) in which you can find an awful lot of information if you go to the 'files' tab. He follows Ken Berry as well as others across the pond. I've never regretted the move to low carb - I was diagnosed as prediabetic not long after I started Pred and diet is the way that I quickly got my blood sugar numbers back to normal. Many other things have improved as well - but I've been doing this so long I can't remember what !!! Good luck and don't worry - this group offers wonderful support with so much experience from members. I've found it so helpful.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to 24paula

As Miserere comments -link to tapers -

healthunlocked.com/pmrgcauk...

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