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

    Hi Roda!

    Someone told me that you don't start to loose the pred weight until you're off it altogether!!!! I'm not happy either!! I've been tapering successfully from 20mg to 10mg at present, and I continue to gain weight! Although weight gain is much slower if you cut out bread, potatoes and pasta!!!,,, plus all the nice things in life that make life worth living! Hahahaha ie, cakes, sweets and chocolate!

    Hope you are not too disappointed by all this.

    Best wishes

    Andrea x

  • Posted

    Why did he want you to humour him, down to 5mg in two and a half years is pretty good going and once on 7.5mg and below your adrenal glans start to wake up.  Some Consultants like to leave you on 5mg for about 6 months and then start slowly and I mean slowly dropping 1mg at a time.

    Methotextrate comes with its own side effects.

    I lost 6 stones once off pred, it disappeared so fast I lost a skirt in a supermarket one day. 

    • Posted

      Where you wearing the skirt at the time lodger??? 😳😳

      Id be very happy if I could even loose 2 stone after pred!,,,, but more would be a bonus!! X

    • Posted

      Pred astonishes me.  I lost 1 1/2 stones during my PMR journey - others, like you, put on stones.  Now I'm down to 5mg I have started gaining weight again - only 3 or 4 pounds, but still!!!!
    • Posted

      Thanks Lodger for giving us hope!!  Can't wait for the day I lose a skirt😉.

      Did you have any weight loss at lower doses or were you completely off pred?

      Did you do the hole carb thing and what about exercise🚴🏃💃?

      Thanks,

      Diana🌸

       

    • Posted

      These U.S. Docs have a thing about pred... I will not allow him to bully me if my slow drop of 1/2 mg does not work. I'll keep in mind the 6 mo at 5. Thanks...esp the pic of you loosing your skirt! Can't wait for the day!
    • Posted

      The skirt falling off in the supermarket is my dream.   I've

      been on Pred for a year and half....got down to 4mg and then

      had terrible bout of sciatica and sed shot back up to 60.

      bummer......gained about 30 lbs and I actually eat pretty healthy.

      Just had blood done and total cholesterol is l61 which is

      pretty good for me since can't take statins.   I don't eat much

      (an occasional cheeseburger) red meat, haven't had a steak

      in years and do my best with the veggies.  I can no longer

      fit in any of my clothes.  I've bought a couple of things to

      tide me over but this looks like its going to be a long haul.

      Lucky you........off the pred.  I'm jealous

    • Posted

      No, never did the whole carb thing, but I have never used sugar.

      I did drop my pasta, rice dishes etc - and I missed them.

      I ate pure dairy products, % fat or sugar yoghurt with a teaspoonful of Manuka Honey.

      Like Eileen snack on cherry tomatoes (love the little pompadora's), kept cucumber (wrapped in foil keeps longer in fridge) when I was hungry, cut an inch of it and tucked in.  (Cucumber has amazing properties, in fact you can survive in the desert as long as you have cucumber, it contains water and loads of minerals - and it is great to clean mirrors).

      As I never ate breakfast, I had to learn to eat a slice of toast to take pred.   I had a peice of fruit with cheese for my lunch and then chicken, fish and veg for dinner.   Except on Saturday I had my fish and chips (I never ate the batter, I don't like it - but I love the taste of the fish deep fried - anyway the birds love the batter).  On Sunday, no way am I giving up my roast dinner with yorkshire puds and roast potatoes.  But they were the only food I ate on those days.

      I was known as the 'Brandy Queen' as I used that as a pain-killer (brandy developed by Medieval Monks as a medicine).

      Could not drink my red wine  or G&T - hated the taste of both.  But the occasional white wine was OK.

      Oh and yes I was wearing the skirt, it had an elasticated waist and it just slid off, I was quite surprised and it was then I realised the weight was slipping away.  I am still not slim and the medics have said - I will be luckyif I ever get back to where I was.   They were right, I eat less than ever and still don't lose an ounce.   C'est la Vie  - life is great, GCA still in remission and I can still see.

      Who cares about weight  I don't but I do understand a whole lot of people do and I do so hope they achieve where they want to be  - if not smile - the people who love you, love you for being you, not what you look like but who you are.

       

    • Posted

      meant to add and if they don't like you - it is their loss smile
    • Posted

      How I envy you your Sunday roast.  I've never quite made it with Yorkshire puddings, or baked potatoes for that matter!

      We haven't been to England for 3 years and once I asked my husband what he missed most and he said "Sunday dinner".  Poor man!

    • Posted

      Funny isn't it - don't miss that at all! But I did roasts when we lived in Germany, you just have to use slightly different cuts. I do roast chicken here - we get at least 2 meals out of one and then I do it with roast potatoes. I have done roast beef and lamb but can't be bothered. The hotel in the village does perfectly good Braten - no roast potatoes though!
    • Posted

      One chicken does twice for us too.  Then I boil the larger bones to make a stew.  

      Roasts, Yorkshires, etc - sooooo much work!!  My poor husband!  

    • Posted

      Thank you Lodger - you made me laugh out loud when I read about your skirt! You cheered me up on a "down" day...........
  • Posted

    Hi Roda,

    My PMR history is similar to yours although I had to go to 10mg of pred after a flare in January. Now at 8mg and will reduce .5 mg from now on using DSNS method.  My Dr. Wanted me to try methotrexate but I'm going to Italy and refuse to give up a glass of wine or two when I' m there. He suggested I take Paquenil instead???  I decided not to take anything other than the pred because I don't know if it really shortens the time PMR goes into remission.  At 5mg I think the side affects are not so bad.

    As far as weight gain, it drives me crazy and also gets me down. I was active and fit till pred and now feel like a fat old lady.  I do find that cutting carbs and doing some walking or cycling every day does make a difference.  I'm not as disciplined as some of the members of the forum but try to cut out sweets, breads, pasta (that won't work in Italy😬) and rice. I have potatoes and a piece of toast or English muffin occasionally.

    I'm sure you'll hear soon from the pros here on the forum.  It is truly a great source of info and support.

    Good luck with your continuing decreases and always remember slow and steady wins the race.  I guess we also need to accept that big is beautiful for awhile to😉.

    Hugs, Diana🌸

    • Posted

      Hi Diana - you made me chuckle - yup, me the fat old lady at 69! This is so discouraging! Whoops -.no one told me not to drink wine! I'll have to read up on that! So my guess is you haven't lost a lb? Drats! Thanks for the smile! 😘 Roda
    • Posted

      I actually have lost 5lbs but still a 19lb gain from where I started.  I think at lower doses you might have more luck. I've asked Lodger about her experience.

      Do check into the wine thing. When I told my Dr. I was going to Italy he said "well, we can't have you on that then because you can't drink wine while you're taking it".  I had heard that before so never looked it up because I wasn't going to take any more meds anyway.

      Cheers🍷,

      🌸

    • Posted

      It all depends on the doctor and some are happy for their patients to have the odd glass of wine as long as it isn't on the day of the mtx/next day. 

      I don't understand why a doctor would want you to try any new drug just before you were about to set off on a foreign holiday - go when you are stable on current medication and you know you have minimised the chances of things going pear-shaped.

      I started to lose weight at 15mg - but it did also involve a change of corticosteroid as I've explained in my epistle below (probably, never know with this site these days!). I'm not losing significantly more or faster at 4 or 5mg but I am still losing weight slowly. The first to go was the swim-rings and the fat face - both of which make you feel much slimmer as your trousers/pants are suddenly enormous around the waist! I haven't lost anything in the way of clothes in supermarkets - but I have gone from a 34H bra size to a 32F. And there are a lot of trousers now rolled up and put in another cupboard. I shall have to buy stuff next summer - and some I'm wearing isn't for external showings!

    • Posted

      I'm staying steady with my current meds.  No decreases until I'm settled in for  a couple of weeks after the trip to Italy.  

      I'm hoping the extra walking (done cautiously) will help shed a few lbs. The great wine and pasta won't help that cause but I'm going to try and be good😕.

      Do you have any tips for me on what to see in Northern Italy. So far we only have plans for 3 days in Rome and we're staying at an Agriturismo for 6 days after that so we can explore the hillside towns.  No return ticket so we're not stuck to any schedule.  Want to see Cinque Terre and the Amalfi Coast at some point.  

      Hugs, 🌸

    • Posted

      Sensible girl!

      That's not north - that's central Italy by my standards! If you are going in the direction of Venice do consider an excursion into the Dolomites. I live on the northern edge but they are a World Heritage things and utterly utterly beautiful and awe inspiring. The food is not what you'd describe as slimming though. All of Alto Adige/South Tirol is wonderful with good food and amazing wines...

      Funny how everybody associates Italy with just pasta and pizza! I eat wheat-free and low carb anyway - Italy is the easiest country in Europe to do that! They know what is in their food, they cook wonderful meat and fish and it's up to you want to have alongside it. I live here - I want to see Cinque Terre and the Amalfi coast! My friend spent 2 weeks near Sorrento in the spring - they loved it. We have a camper van - not ideal for either but I'm working on himself. There are campsites close to train stations for Cinque Terre. Sorrento may have to be a hotel ... 

      When are you coming?

    • Posted

      You enjoy yourself while in Italy and have some wine and

      some great pasta dishes......You only live once

    • Posted

      Our friends grandson is in the World Climbing Championships in Arco for the next 2 weeks and the famiily have been travelling around the area and said it is absolutely amazing. We have an open ended ticket so may add that area to our very long list. 

      We arrive in Rome the morning of Aug 31st.  We have rented an small apartment for 3 nights so we can take the 1/2 day tours of the Vatican and Colosseum and poke around as much as I'm able.  We'll be flying out of Rome so can if we miss things we really want to see we can plan on being there for an extra few days. I'm already looking forward to resting up a bit at the farmhouse because we'll be there 6 nights.  Going to learn to make pasta!!  After than we don't know yet.  Flying by the seat of our pantssmile

      Guess I better not carry on or I'll be getting in trouble for going off topic!!!

    • Posted

      Thanks Faye,

      You're right...  we never know what tomorrow will bring so enjoy while we

      can.

      Hugs, Diana

    • Posted

      We've stayed on the campsite opposite the Arco climbing "wall" - literally a wall of stone. It is amazing!

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