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Prednisone and weight gain......

Posted , 16 users are following.

Marla0415
Marla0415

I have gained 20 lbs since being on Prednisone. I was watching what I ate closely at first trying to keep it from happening. Then it just seemed to come on me. . Since at the time I had no real idea about the duration of PMR and being on steroids I thought in a few months when it's over and I'm off Pred I'll get the weight back off. Well now that I know that I could be on these steroids for quite some time I'm wondering if it's actually possible to get the weight off even though I'm still on the Pred. Has anyone had success at this. I'm at 20 mg currently and know it will be a long process to reduce since I've already attempted 3 x and had to go back up even higher than my initial dose.  I've read Pred actually changes your metabolism.  The PMR battle can be discouraging and then to gain the weight too makes it more so. Any comments and thoughts are appreciated from my fellow PMR cohorts!!!

1 like, 87 replies

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  • Sheilamac_Fife
    Sheilamac_Fife Marla0415

    Posted

    Seriously cutting the carbs seems to be the only way. PMRPro has done it successfully. I'm still battling with it I've gained fair bit more than you but maybe over a longer period. Started steroids in July 2014.

    i have managed to stop the gaining so far far on this attempt to really cut the carbs! I know it works cos I lost nearly a stone first time, but the carbs crept up again!

    • Marla0415
      Marla0415 Sheilamac_Fife

      Posted

      Yes I have been on steroids since July 2015 so likely the diff in our weight gain. I just know I don't want it to gain more so that is why I wanted to hear others experience and formulate a plan for myself. Thanks for your input. 
  • Daniel1143
    Daniel1143 Marla0415

    Posted

    Managed to control my weight with a very strict diet.  There are a number of auto-inflammatory diets on the web.  I have gone gluten free in an attempt to cut carbs and other inflammatory foods.  Secondarily, no sugar which means I've had to say goodbye to a lot of things I love.  Basically, I've changed everything.  Has taken a lot of discipline but the alternative is worse.  
    • Marla0415
      Marla0415 Daniel1143

      Posted

      I admire your discipline as I know what it takes. I've battled weight issues before so this is not my first walk in the park however with the prednisone on board I wondered if I would have it approach it differently. I actually went gluten and sugar free last June before starting the Pred trying to find relief from the pain by myself. I know they both promote inflammation and 
  • EileenH
    EileenH Marla0415

    Posted

    As Sheila has said, I put on a lot of weight with pred and have lost most of it by drastically cutting carbs at the same time as I was switched to another form of steroid. I had put on some weight with PMR and no pred since I couldn't exercise as usual, that redistributed with pred though I didn't put on much more and then I was switched to methyl prednisolone. Cue massive weight gain and all things Cushingoid within a few months!

    I tried the usual diet stuff under the local hospital dietician but really struggled so started to experiment a bit. I tried the 5:2 fast diet and that certainly helped reeducate my palate with regard to portion sizes and within a few weeks I was far less hungry even on the other non-fast days. I added in drastic carb cutting and the weight just went - very slowly, but it went steadily. I noticed I lost weight when I didn't eat much carb, any time we had visitors or I did have carbs (because I love polenta so I eat it occasionally or we went for a pizza) I didn't lose as much or didn't lose at all. The carbs definitely did make a difference. At first I couldn't walk much, I was on crutches with an achilles problem, but the weight went slowly and as it went I was able to start walking more too. Every little helps. I managed to lose 18kg originally but 2kg went back on for no apparent reason but I have stayed stable. I'd like to lose more but am a proper shape - no midriff pred tum, no hump, no fat face (just wrinkles, you can't have it all ways!).

    I like a blog called Diabetic Mediterranean Diet by Dr Steve Parker - got lots of good info and ideas there. The new improved adapted Atkins diet is good for recipes too - that is the basic idea, and it allows some carbs. I normally eat no processed carbs at all and what carbs I do eat are veggies and salads. I don't however refuse to eat carbs altogether - I eat half a roll occasionally, I have an icecream if I want one or a slice of cake, though like the 1/2 roll, a slice of cake from a cafe always means at least half to be taken home for another day! I simply don't want as much. I never feel hungry - except after I've eaten more carbs than usual. Blood sugar rises, body makes insulin, blood sugar falls and body thinks it is being starved so tells you it wants more!

    There are others who have also lost weight in the same way, some have avoided putting on weight in the first place. One lady did lose a decent amount of weight with WW but with the diet clubs you must be careful to find a class leader who really does understand how pred affects the metabolism, many don't. They tend to set goals that you can't fulfil and that leads to getting down about it.

    • EileenH
      EileenH

      Posted

      PS - I don't think gluten-free is necessary other than you achieve low carb by removing grains from your diet. I don't eat wheat as I have an allergy to something in the structure of the grain - I can eat rye, kamut and spelt, and I do, just not much. Gluten-free products are very calorie and carb dense so avoid them - they have even more junk in them than any other processed carbs, 

      But once you read your labels you will find LOTS of hidden carbs, especially wheat and sugar, in everything! I eat freshly prepared veg and salad, fish, meat and cheese. I avoid root vegetables as they tend to have a lot of carbs - it doesn't matter what the source is, starch turns to sugar in the body and ends up as fat on your hips, tum and bum! And pred encourages it! I don't refuse to eat them - I just eat very small amounts.

      Contrary to urban myth we do NOT need carbs to survive - the body is very good at living without carb.

    • Marla0415
      Marla0415 EileenH

      Posted

      I went gluten and sugar free last June before starting Pred. Anything to try to stop the pain. I continued even after being diagnosed. I started baking with almond and coconut flour but even too much of those things make you gain. I recently went 6 weeks totally grain free, stopped eating gluten free products altogether, no potatoes or rice and only had two small almond flour muffins in the am but no change in my weight at all. I was however snacking on various nuts as well as cheese which although are good for you still are calorie dense I think along with low carbs that I may have to track calories awhile to find some success. I've always had success with WW but not sure I want to go that route now with the PMR. Thanks for the feedback Eillen. 
    • Judyg
      Judyg EileenH

      Posted

      Hello Eileen,  

      can you please tell me what form of steroid you now take, I have piled on weight, and have the moon face and do not look like me anymore.

      bad enough having GCA and PMR without all these horrible steroid side effects!  

      I can then request from G.P. A possible change in meds, and hope for the best! 

       

    • EileenH
      EileenH Judyg

      Posted

      If you are in the UK you won't be able to get it - unless you go privately and pay the full cost yourself which is up to about £100/month depending on the dose you are on. It is only approved in the UK for use in RA and even there they have just issued instructions to restrict the use. It is availablein the USA if your insurance will pay (I assume0 since I know someone is on it.

      It is called Lodotra in Europe and costs about £25 for 30 pills whatever the dose is. It is called Rayos in the USA - and costs full price up to about $2,000 for 30 pills! 

      It isn't just the change of formulation - it is hard work and discipline in what you eat that helps make the difference. Nothing comes easy in this world... confused

    • Judyg
      Judyg EileenH

      Posted

      How very true that is, as I don't have private health insurance it seems prednisolone it is. 

      Thank you for your response and knowledge.

  • Daniel1143
    Daniel1143 Marla0415

    Posted

    Went Gluten free as part of a try-anything strategy.  None of th docs seem to know anything about PMR other than "no known cause; no known cure." And for all the talk about prednisone, methotrexate and other meds, none are cures.  Only masks. I am one of those who had no increase CRP or Sed rate, so I have always wondered whether it could be something else.  Trying Gluten free in the event it's a gluten problem.  On a Lyme protocol in the event it's a disguised form of Lyme Disease.  And by going Gluten free, I am forced to avoid the carbs I love: bread, beer, cake, cookies.  As I told my general doc, I am grasping for straws.
    • linda17563
      linda17563 Daniel1143

      Posted

      So are the doctors, they don`t seem to know much more than we do....and certainly not as much as Eileen!  She has the knowledge, and has also been there (still is) and done it....how mant doc`s can say that...it would be a different story if a few of them experienced PMR.

       

    • EileenH
      EileenH Daniel1143

      Posted

      I have normal blood markers too - hence the 5 years not being diagnosed! I was gluten-free at the time - it was the only way to avoid wheat in the UK then and eating wheat makes me ITCH! But it didn't stop PMR appearing!

      And before you ask - I know it is wheat that is the problem rather than just gluten because I ate UK gluten-free rolls that were made with "washed wheat starch" which is gluten-free but makes bread that is almost normal - and reacted. It is obviously something in the structure of processed hard/durum wheat - I can eat spelt, kamut and Canadian soft wheat (the stuff they use for French bread) without a problem. Even the NHS website says that this is now a recognised thing and there are people who can eat French baked goods - which I had realised while on holiday with a friend on a canal boat. He'd done the shopping before we arrived - and despite knowing I don't eat wheat and being a doctor hadn't put 2 and 2 together. Just as well I am not coeliac because I'd have starved - it was a long way between shops on that particular canal! I decided to risk itching and took extra antihistamines which help a bit - but I was fine!

      I prefer to use the word "manage" than mask. Inflammation is inflammation and it causes problems - pred reduces the associated risks of that unmanaged inflammation.

    • EileenH
      EileenH linda17563

      Posted

      Some of the best doctors we've met have had a family member who had PMR or GCA or met patients early in their career who had lost vision with GCA. They care and do understand much better than the average.
    • Marla0415
      Marla0415 Daniel1143

      Posted

      Well my Sed rate and CRP although elevated are not nearly as high as some I read. I love the carbs too of course so just have to resolve myself to life without much of those too. My sis has had ulcerative colitis for 20+ years. Prednisone is used in that case too along with other rx's. She was getting nowhere and finally turned to the Specific Carbohydate Diet to heal her gut. It's very very restrictive. I always told her I don't know how you've done that. She said "when you are sick all the time and it has taken over your life it motivates you !" Now I understand that statement full well!!  She was the one who encouraged me to go sugar and gluten free to see if it would help me. We weren't talking about weight loss however but reducing inflammation. 
    • jeannae68307
      jeannae68307 Daniel1143

      Posted

      I was sero-negative for four years with all the symptoms and got an upper respiratory virus and the labs turned positive.  I, too, was repeatedly checked for Lymes.  I am desperate like you looking for a strategy.  I've just added adrenal support, pantothenic acid, and curcumin.  Here's hoping.
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