Need advise on workable low carb diet

Posted , 12 users are following.

i have had PMR for 2 1/2 yrs and down to 5 mg pred. Also taking 7 2.5 mg methotrexate to supposedly help me lower the pred ( dr says "humor me and please try this" ) along with folic acid. Had one flare trying to drop to 4 with slow dead stop method, so now trying 1/2 mg drop. My frustration is my weight. I always ate healthy and was never over 135 lbs at 5'7". Now almost 25 lbs over weight. Tried 2 wks doing Paleo diet but barely lost 1/2 lb. Need to hear suggestions from this learned group. Pred still the culprit despite being on such low a dose?

Thanks in advance.nyour forum is a god-send!

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  • Posted

    Why on earth is he concerned at 5mg? I really don't understand why they want to introduce another set of potantial side-effects for someone who has already achieved a pretty low dose!

    Anyway - it is possible that you have achieved the aim of your reduction: the lowest dose that manages the symptoms as well as the starting dose did. Even with methotrexate you may not get to zero pred if you have PMR (that is rather than maybe another very similar arthritis that responds to mtx). MTX doesn't replace the pred, it just maybe gets you to a lower level and many doctors feel it should only be tried for patients who struggle to get to single figures or who have repeated flares. Since the main cause of repeated flares is trying to force a reduction I don't actually see the point - why not just go about it in a rather more gentle manner?

    But - that rant is over - to the weight problem. Over the last 3 years I have lost about 19kg while still on pred. Partly it was due to changing from the Medrol that had led to the massive weight gain to Lodotra, a form of prednisone. I had originally been on prednisolone and hadn't gained much weight - but I had gained weight in the 5 years I had PMR without being on pred and not being able to exercise and eating as normal. The prednisolone just made the weight redistribute to my middle, the back of my neck and round my face. But most of it has been omitting carbs. Low carbs means a very slow but steady weight loss, when I eat more carbs than usual I don't lose anything, 6 weeks of travelling all over the place has resulted in a 4lb weight gain, half has already gone in 2 weeks now I'm back to my normal diet.

    When I say very slow I mean about 1-1 1/2lb per month much of the time, sometimes it's better but not often. That was when I was fairly limited at what exercise I could do - I spent 9 months on crutches and it took a long time to build up from there. Now I can walk for a couple of hours at my own pace - although hills are still a bit of a problem! So your 1/2lb in 2 weeks was actually not bad - especially since you have to remember that to start with you have a change in fluid retention as your body gets used to a different diet. When you are on a low carb diet - and paleo is fairly low carb isn't it? - first of all you are burning up the glycogen stores in your muscles. Once that is gone your body will start to burn the body stores of fat for energy - but first it has to be got rid of.

    Any time you eat carbs that glycogen store is replenished and you will tend to retain water too - so if you were eating quantities of fruit, then you were eating carbs, some are worse than others. Apples, pears, bananas and grapes have a fair bit of carbohydrate - berries far less. The same applies for root veggies - sweet potatoes and squash and even carrots soon add up the carbs.

    I like a blog called Diabetic Mediterranean Diet blog by Steve parker, a doctor. It has all sorts of info and ideas. Sometimes he makes me blink - like when he gave a recipe for spaghetti bolognaise using spaghetti squash - but added sugar to his meat sauce! My meat sauce has meat, tomatoes and herbs, maybe a splash of wine. SUGAR? What on earth for - he said it was because the tomatoes were sharp! The answer to that is cook it longer - Italian Nonnas would cook it for a couple of hours at least! But in general he has good stuff. 

    I also combined it with Michael Moseley's 5:2 diet (search, you'll get loads of stuff online and his book is pretty good too though not essential) to start with and found that really re-educated my appetite and made eating a lot less much easier. It was about portion control - because while low carb will achieve a lot, when we are on pred there are other factors at play. One lady I know didn't lose a pound until she stopped pred - and then lost about 60 lbs without even trying!

    My typical day's diet is no breakfast, just 3 or 4 large mugs of British tea with milk (low fat not skimmed). I have lunch at about 1.30pm and dinner about 7.45pm. That means I have 17 hours fasting every day if you discount the breakfast time milk. I'm not a breakfast person so it doesn't bother me at all - and if we are in a hotel and breakfast is included I eat it - eggs and bacon or the like. Not toast or pastries! When I do - I don't lose weight!  Lunch is a massive bowl of salad leaves, a few cherry tomatoes, maybe a bit of cheese, dressed with dried herbs, olive oil and vinegar. Dinner is fish or meat and another big salad or grilled vegetables. I don't refuse to eat carbs - I don't eat bread or stuff regularly but I do eat them occasionally and if I want an ice-cream - I live in italy - it's summer, I have one. But not one every day.

    The aim is to keep useable carb below 50g - but you have to count it all. Salad leaves are very low in carb, but tomatoes aren't carb-free and whatever it is other than meat, fish or eggs will have some carb. Some cheeses have some carb - you have to check. But in general once you know what is what it is quite easy - while you are at home and able to control what is on your plate. You have to read labels - and absolutely NO processed food which can have sugar and starch where you wouldn't believe it! Why do sauces need sugar? Why do they need to be thickened? It will mean a lot of cooking from scratch - but it doesn't have to be complicated.

    Good luck - but don't be impatient. For the first month or so you may not see a great change in your weight. Some people hang on to fluid and take a while to lose anything and then lose it in a big dollop. Others lose steadily and slowly and others lose a load in the first few weeks and then get stuck.  PMR teaches patience - and the tortoise beat the hare remember!

    • Posted

      Thank you, Eileen for your words of wisdom, as always. I guess I am not surprised for you to say that 1 1/2 in two weeks isn't bad, just discouraging. Paleo diet is lo lo carbs, no dairy, some fruit and nuts and loads of veggies. I so missed some cheese and my steel cut oatmeal! Here we are at the height of our crop of tomatoes and corn...my favorite things of all! Not good for lo carb! I will check into the two diets you mentioned - thanks for that. 

      The Rheumi keeps pointing out that in his experience, his PMR patients usually have this disease not last past 2 yrs, otherwise they have RA or similar disease and were misdiagnosed. He has been hinting strongly that this is the case with me. But the elephant in the room is - so if I can't go below 5 mg of pred, what's the plan - just drop it anyway?! Well, I just smile sweetly and plan to change Drs if that's what it comes to. 

      Tell me what Silver is referring to when she talked about rye bread😋 and porridge. Did I miss something?

      Once again, many thanks to you. Enjoy what's left of summer!

       

    • Posted

      There is no reason not to eat cheese - on paleo maybe but not on low carb! Full fat natural yoghurt is also not too bad - not sweetened versions. You can eat tomatoes in moderation - I eat a lot, cherry tomatoes and nuts are my snacks! 

      Sorry about the oats! Rye bread isn't wheat and some people think that means it doesnt have carbs in  - maybe that confused her. No - I never mentioned then as being part of a low carb diet. 

      And while the weight loss is slow - that is by far the best way to lose the weight. If you lose weight too fast you end up all wrinkly! 

      Your rheumy is wrong about 2 years - we've had a few people claiming that on the forums. they are WRONG! German rheumatologists accept it can last an average of 5 years - since some DO get over it in two that means there are some for whom it takes longer. The US figures quoted are about a quarter get through in 2 years - but are at a higher risk of relapse. Half take 4 to 6 years and the other quarter take longer, maybe even need pred for life. 

      There is no point forcing a patient off a 5mg successful dose of pred just to allow the retun of the pain and stiffness. Most sensible doctors appreciate that 5mg of pred that works is better than messing about with other drugs that don't and allowing a major flare to develop. At 5mg there are minimal side effects - and after 2 and a bit years it is really good. 

      Find another rheumy to keep in reserve - if you are in the US that speaks to their pocket! No patient on 5mg pred, no income from consultations...

  • Posted

    Thank you Roda4445 for asking a question I've been meaning to for a while. I can cope with the other areas of PMR so far but the weight gain is something else. I look forward to my skirt falling down but right now I feel as though I'm more likely to go pop and burst in the supermarket!😳😳😳

     

    • Posted

      Hi Silver - think we all are wrestling with the uglies with unaccustomed weight. I don't recognize my own legs when I look down at them. And the chest and stomach!😁 unlike many of you, I don't have the hump on the back of my neck, I have fatty tissue in between the collarbone! (They did an ultrasound to make sure it wasn't a growth)!

      Nice  to commiserate with others...that's why the forum is great!

    • Posted

      I have that fatty tissue between my collarbone to.  Thought I was wierd because it wasn't the hump on the back of my neck.  My necklaces get stuck one side or the othersad  haha another gift....
  • Posted

    Thank you to EileenH for your advice. Did you say porridge which I love is ok? I like rye bread so will buy some tomorrow. I know what I am supposed to do but doing it is something else. I think I need to look out the gaffer tape for my mouth. 😀😀Alas, tiredness and pain, though both have greatly improved, leads one to comfort eat on carbs! It is, of course, jam time here and I've just made a load of raspberry jam and rhubarb chutney as we had a glut of rhubarb. Not a good idea!
    • Posted

      No - both porridge and rye bread are carbohydrates - if you want to use a low carb approach they must be restricted. As must your lovely raspberry jam and rhubarb chutney. Sorry!

      There are many sites with information about low carb eating and they, together with a scales, is probably the way to start. You have to learn which foods are carbohydrates - it is something that is second nature for me and I do realise that people without a medical-scientific background probably do struggle a bit about what foods are what food group.

      Anything that is made with flour or other grain products is carbohydrate - wheat and variations of wheat, rye, barley, oats are all carbs, Just because wheat is wholegrain or organic doesn't alter the fact it is carbohydrate. Gluten-free is not carb-free - in fact it is generally very dense carbohydrate and will have sugar added to help the taste. Low fat products also have sugar and stuff added to make it taste better.

      Fat is no longer the enemy - you shouldn't eat massive amounts, that isn't good either, but it isn't something to avoid at all costs and it helps to fill you up for longer. So does a meal with a decent amount of protein  But it is not healthy to eat just fat and protein - but your carbs should be things that are bulky so they fill you up: vegetables that are grown above ground and salad leaves, cucumber, peppers and so on.

      You will find that when lunch is an omelette and a salad you won't feel hungry a couple of hours later and there won't be the same need to comfort eat on a doughnut. Once you start to lose a bit of weight - or more to the point, your waistbands are loose, the reward gives you an incentive.

  • Posted

    Hi Roda, like your name...

    Here is my experience and I'm on 7 mg at month 9 of PMR. Still in 50-70 % pain depending on time of day and usage of muscle.

    As per doctors orders, no flour, no rice, no grains, no dairy, no starches (potatoes), no legumes/beans, so just meat, veggies and a little fruit in mornings with protein.  3 egg whites for breakfast so I can take my drugs! 

    Hard to get fat in diet, I use avacados, olive oil, almonds.

    the anti inflammation diet supposedly.

    Live lost 19 lbs, from 134 to 125, 5'5"

    A friend of mine was on Pred and gained big time weight. She said no one told her how to eat, she ate lots of salt too. 

    Also, I read Pred atrophies our muscles, so I'm seeing  my muscles in legs get quite smaller, so I'm working strength training a few times a week. And I ride stationary bike for 25-30 min. Easy, 4-5 days a week.  Mainly for circulation.

    Ive now developed dry mouth and no taste, so eating is just a nessessary thing and since I cant taste wine, boo hoo!!!  I image I'm going to lose even more weight. Having no tastes...ha, was it an unconscience desire??? Ugh.

    Really go for lots of protein and yummy veggies and serve over spinach, or kale or other dark green leafy veggies, it will help fill you up and not be craving sweets NOR flour products.

    And don't eat late.  Did you never have acid reflux with the Pred? I do now, but I'm just now taking probiotics because no one told me I should (doctors). 

    good luck. 

    • Posted

      Meant 144 to 125, ugh, still occasional brain fog! Didn't want anyone to think I'm math dumb...smile 

      love all Eileen is saying!  I'm enjoying reading this...wink 

    • Posted

      If you have a dry mouth be extra vigilant with mouth hygiene! Otherwise your teeth may suffer.

      If you have 70-90% of the original pain you are probably on too low a dose of pred. You are supposed to achieve a 70% REDUCTION in the pain levels with the starting dose of pred and then aim to maintain that as you reduce the dose. To be at 7mg after 9 months of PMR would generally be felt to be rather optimistic. 

    • Posted

      And 125lbs at 5'5" is a low BMI - 21 near enough. You do NOT need to lose any more weight. Even at 144lbs you were in the healthy weight range with a BMI of 24.
    • Posted

      You give me hope! Your diet is basically Paleo with no legumes,carbs, dairy,etc. just very slow for me.

      i really feel for you with the loss of taste.mis that pred related?pray not!

      Sure is a way to loss weight tho. No tasting wine a real bummer tho!

      yes, developed acid reflux and have been taking Prilosec, until I read the NY Times article about its possible connection with heart attacks. Which Probiotic do you take? I know that they vary a lot .

      know what you mean re: muscle atrophy. really feel it going up the stairs, esp when I'm carrying things. Achey!

      many thanks for your input. Happy Summer!

       

    • Posted

      Acid reflux try this, MrsO's remedy, which worked for me and others.

      One organic lemon, one minute in microwave (doubles juice) squeeze, divide jiuce into three, drink with water three times a day, preferably either before of after your meal.

      Acid reflux - gone.

    • Posted

      Rheumy recommend a probiotic pill of atleast 12 billion active cells and as many of the "lacti....." Possible in ingredient list AND a refrigerated pill form!  It have a take 3 times a day with food, kind of a pain...good I now stay at home. Otherwise, difficult!  

      found study that that out of 146,000 people on prednisone 600 lost taste. 

      Im testing a new thing for me acid reflux...this morning I drank 12 oz (sorry USA units) water, took my thyroid pill (must be on empty stomach for one hour), drank another 12 oz water with pill...

      late breakfast (hour later) and took my Pred. Did NOT feel acid reflux flutter!

      i forgot at lunch to try this.  Will try at dinner.  I had endoscopy Tuesday and since my sphincters ok, I will refuse to take PPIs! I tried them twice and no chance.

      good luck Roda, keep in touch, sometimes just being able to complain about our diets seems to help...ha, why is that?!?! wink 

      Emis Moderator comment: I have removed product/company names as we do not allow repeated posting of these in the forums. If users wish to exchange these details please use the Private Message service.

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    • Posted

      ok, see my message is being moderated...dang it.  Ok, not supposed to recommend brands, sorry.  But I wish they could just strike that and still post my response. I'm too tired now to write.  But can say, refrigerated probiotic and lots of lacti... Ingredients...12 billion. 
    • Posted

      you are right!  I'm having to brush 3+ times a day, atleast 3 min. Have a timer. I'm using dry mouth toothpaste which has been MUCH better than regular. And have a dry mouth rinse. And yes, flossing every day.  So in MANY ways this PMR/PRED is making me get in to healthier ways (think I was hitting wine a bit too much too).  But yes I fear harming my teeth and gums.  Padada recommended water at my bedside to sip on too. That helps. But doctors recommended sour sugar free candies, ugh! They just make me hungry! 

      Thanks for mouth concern.

      Oh, and I'm not 90% pain, yikes, more like 50-70. Sorry if I mislead at some point. I think one time I complained of the pain here more than usual. Was having a pitty me day I guess. 

       

    • Posted

      Fermented foods are all the rage here so I experiment with new foods every week as I can buy them at our local farmers' market:  curtido, kimchi, various kinds of sauerkraut, all very delicious and add variety to a diet that looks like it should be based on little more than leafy greens these days!

       

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