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Prednisone and weight gain......

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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!!!

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  • marygabel
    marygabel Marla0415

    Posted

    It is a challenge! Originally, like you, I wasn't so worried as I didn't think I'd be on pred this long. I did all of the weight I gained but recently was told that the way I did it was too hard on my weakened immune system (I was doing a 2/5 fast, which I loved, but I've stopped). The same person told me that I needed to deal with the underlying infection causing the inflammation through diet to strentghen my immune system. He said that, while chronic pain is damaging and, therefore, pred serves a purpose, it doesn't address the underlying problem and, if we don't do that, we can be off of pred and still have our body at risk of further problems with PMR or something else.

    He said to start by eating lots raw fruits and veggies. He made it clear that I needed dark greens three times a day--way more than I had been eating. He said that once I starting feed my cells what they need, the cravings would diminish. I was surprised that in jsut a couple of days of eating this way, my afternoon cravings (especially for sugar) stopped.

    I discovered baby kale (regular kale was too tough and bitter for me) so now add a handful of baby spinach and baby kale to my morning protein shake (I found one that is whey with no fillers or additives), whole milk, fresh berries (I had been using frozen) and oats (or acutally an ancient grains cereal that is supposed to be cook, ground into flour in my blender). For lunch, I do a baby spinach/baby kale salad with lots of raw veggies in it and some form of protein. I do another salad with dinner. I was told that eating the raw foods first gets digestion started for the harder-to-digest cooked foods. He said to vary my grains--brown rice, qinuoa, oats, amaranth, etc., and to use lots of wheat germ and nutritional yeast (for B vitamins). Vary your oils to get healty fats, which also help you feel full from one meal to the next: coconut, olive, avocado, brazil nut, almond, grape seed oils. Stay away from peanut and canola (our bodies, at least in the US, are over-saturated on this). 

    The most beneficial fruits are berries, pommegranite, cherries and pinneapple. The high-sugar "desert" fruits are grapes, oranges, watermellon. Apples are good between meals: they are high in sugar but will get you to the next meal.

    I'm going to be seeing someone who does Quantum Reflex Analysis though muscle testing. He will test all the supplements I'm now taking to see what's working for my body and what not and will prescribe specific supplements to fill specific needs. I'll go back one a month for followups as the needs will change as my body starts to heal.

    I can't give you any testimonial on how this all will work or if I'll be able to keep the weight off without fasting, which I'm now convinced I must stop, but I thought I would share the information that makes sense to me.

    What was most helpful in this conversation was learning what to focus on eating rather than what to cut out!

    My best to you, Marla.

    Mary

    • EileenH
      EileenH marygabel

      Posted

      "The same person told me that I needed to deal with the underlying infection causing the inflammation through diet to strentghen my immune system."

      Not entirely accurate - PMR is NOT due to an infection. There is no evidence at all that it is an infection that leads to the immune system starting to attack your body as if it were an invading organism. Some claim to have identifed a couple of viruses present in the temporal artery in GCA patients but it isn't the case for all patients so it may be coincidence or there are different forms.

      In fact your immune system is out of control - pred and the other drugs used in immune dysfunction disorders are to damp down the immune system and dissuade it from destrying soft tissue so the last thing you want to do is strengthen or stimulate it. He is probably correct in saying that the pred doesn't deal with the underlying cause - except no-one knows what the underlying cause is beyond it is almost certainly results in an autoimmune problem. There is some evidence that the neutrophils (one type of white blood cell) are involved - and that fits with the pred effect as pred mediates its effect via neutrophils.

      The 5:2 fast diet is not true fasting - it is 2 days a week where you restrict calorie intake compared to the other days. 

    • Sheilamac_Fife
      Sheilamac_Fife EileenH

      Posted

      Thank you for coming along, Eileen, I was thinking that this 'person' didn't understand PMR. And of course you explained it way better than I would have. smile
    • marygabel
      marygabel EileenH

      Posted

      My rheumatologist told me this is not considered an auto-immune disease. He did say they don't know what causes it and that it may be a virus.

      There is something, and I have no scientific backing for this, it is completely a gut reaction--that disagrees with damping down the immune system at any rate. In auto-immune, it may be attacking itself, but it seems to me that just suppressing the immune system is akin to treating cancer with chemo that kills all cells, not just the cancer cells (which doesn't treat the cause of what was making the cancer cells grows and puts the stem cells into remission, to emerge again later, which is why so many cancers recur).

      We need an immune system, it just needs to be one that works well. Feeding it nutrient-rich foods makes sense. It does not make sense that we would deprive our bodies of good nutrition because we think it will feed an immune system out of control. This guy told me that I was eating pretty well through breakfast and lunch but that my dinner selections were starving my body from lunch until the next breakfast and that I need a steady supply to heal. He said whatever gains I made on my eating days were being undermined on my fasting days. Who knows who's really right? We ultimatly know so little. But, at least in the US, our medical system pays next to no attention to how to stimulate our bodies to heal themselves. It just looks at what drugs can take over function and ultimately leaves us getting sicker and sicker.

      That's my rant for the day! smile

    • FlipDover_Aust
      FlipDover_Aust marygabel

      Posted

      "My rheumatologist told me this is not considered an auto-immune disease. He did say they don't know what causes it and that it may be a virus."

      Is your rheumatologist for real? He actually said that?

       

    • Anhaga
      Anhaga marygabel

      Posted

      I don't think we want to dampen the immune system really, but we must stop it form attacking ourselves and so far we don't really know how to do that.  I came down with a shocking cold right after starting on 15 mg pred.  Since then, now going on for nine months, I have not been sick a single day (touch wood).  I don't think my immune system has been harmed by pred.  And no one is talking about depriving our bodies of good nutrition.  We just don't think it's our overactive immune systems which need feeding.
    • jeannae68307
      jeannae68307 EileenH

      Posted

      My naturopathic doctor said that she suspected it was a genetic problem with the HLA DR- DQ.  So I talked my regular doctor into ordering the genetic tests. Had them"done at a university hospital and I did have the genetic abnormality that predisposes you to lupus, myasthenia gravis, and PMR.  My father had PMR also. It is frequently triggered by an adenovirus which is exactly what happened to me.  Had an upper respiratory virus for six weeks, then the pain came with the elevated sed rate and diagnosis.  People of Irish, English, Scottish descent are predisposed to developing PMR I was told.  Hope this helps.
    • FlipDover_Aust
      FlipDover_Aust jeannae68307

      Posted

      That's exactly what happened to me - coupled with extreme stress at home. Thing is, I couldn't have avoided any of them!  
    • Marla0415
      Marla0415 EileenH

      Posted

      Eileen...how many calories do you eat on the two fasting days?
    • Sheilamac_Fife
      Sheilamac_Fife jeannae68307

      Posted

      It's our Scandinavian roots that does it for us northern Brits. These marauding Vikings are to blame as I regularly tell my Norwegian son in law.... 
    • EileenH
      EileenH Sheilamac_Fife

      Posted

      Sheila: Did you know that PMR is more common in the south of England than it is in Scotland? 

      Marla - My response about the 5:2 diet got snaffled - no idea why since I didn't think it had anything in it I haven't said before! Women are meant to stick to 500, men to 600 calories on the "eating less days". I don't use it at present, I just cut carbs, but maybe I need a few weeks...

  • JanSP
    JanSP Marla0415

    Posted

    As I've written before I've put on a tremendous amount of weight during this flare - 48lbs plus 10lbs. I didn't take off from the last flare when things started all over again. When I first started GCA with 60 mg pred in June 2009 then two flares plus PMR and a flare of that, I put on about 15lbs each time and was able to take it off. I don't seem to be eating differently but some docs told me I'm carrying alot of water weight. I do have to watch my sugar and carb intake as I have steroid diabetis when the pred is high. I used to be active and athletic and I can't stand being a little old (70) fat lady with very little breath to exercise. I'm on 25mg of pred now and this weight better start coming off soon. Being depressed doesn't help with the diet. With my moon face I don't even look like myself. 
    • Sheilamac_Fife
      Sheilamac_Fife JanSP

      Posted

      Oh, how I identify with your feelings! The little old fat lady of 70 with very little breath to exercise! That's me and as for what I see when I look in the mirror! 

      I just keep telling myself that it will pass. I won't die of it so must be patient. Trouble is some days, I am not!!

    • Marla0415
      Marla0415 JanSP

      Posted

      Like you and Sheila I can relate to not looking like yourself.  I have always been told i  didn't look my age.(I'm 65)...well since developing PMR its all caught up to me.  UGH!!  Even my hair has thinned since being on prednisone.   My doctor didn't affirm that thinning hair is a side affect when I asked her and perhaps it isn't the prednisone at all but the disease itself.  OR even something else entirely.  I just know it does not make me happy!
    • EileenH
      EileenH Marla0415

      Posted

      My hair went mad when I was switched to Medrol - but it all grew back again normally when I stopped it. The hair loss with that did also coincide with a major flare and other things going on - and it is difficult to rule one or the other out. Being ill can affect your hair dramatically.
    • Anhaga
      Anhaga Marla0415

      Posted

      Marla, same as me.  I've spent my entire adult life being told I don't look my age, and being pretty nimble and active although not athletic, so it's a horrible shock to suddenly not only look nearly 70, but to feel it too.  I noticed my hair thinning when I'd been on pred for a couple of months.  Now that my dose has been lower for two or three months (below 7) thinning seems to have stopped.
    • Marla0415
      Marla0415 Anhaga

      Posted

      Anhaga. Nice to hear the hsir thinning stops but I've a ways to go before I ever get my Pred reduced! What that means for my hsir who knows??? Who the heck called these "the golden years"!!!
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