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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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#1 | |||
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Senior Member
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Hello all! This may sound like a goofy question, but those of us on Pred, how much weight have you gained?
I am always so flippin puffy and have gained a TON recently! Granted, I have been @ approx 60 for a yr now, but I still wonder why we gain so much - or is it just me? Thanks! Erin ![]()
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Erin . |
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#2 | ||
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Grand Magnate
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Erin, When I took Pred, I puffed up like a balloon. Some people are very salt sensitive while on Pred. One of the best things you can do is take added salt completely out of your diet and greatly reduce the foods with high sodium (like soups, anything canned, etc.).
Coping With Prednisone is supposed to be a good book. It may give you tips on what else you can do. Lower carbohydrates is good too. A high fiber/low fat diet works really well. Beans are good but only if you make them yourself! Beans in cans - or at Taco Bell - contain high amounts of sodium. Beans don't contain any fat. You combine them with some brown rice and it's the perfect meal (along with vegies). I hope you can taper at some point. You seem really on edge with your MG though. Stablizing seems more important right now. Salt is the enemy on Pred. Don't underestimate it. Even the smallest amount. Since I had it, I'm still salt sensitive and can't have hardly any. Annie |
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#3 | ||
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Junior Member
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The first time I took Prednisone for a long period (1 year), I gained 65 pounds.
I think half of it was fluid retention and was fairly easy to lose once I was back on my feet and active again. The other half is what I am still working on. Jenna |
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"Thanks for this!" says: | erinhermes (05-11-2009) |
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#4 | |||
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Senior Member
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Hi Annie! You just described most of my diet......ez and out of a can..... that is, if I make it.....Guess I just have to take a big girl pill and eat right from now on.........lol! The weird thing is I swell when I am exposed to HEAT = my face doubles in size.....Can't wait to get my pred down to a manageable level. That will be a great day! I drink plenty of fluids all day long and take sodium as well. My face also goes down after I've been lying down all day. My neuro just chalks it up to pred, but I still HATE some of the side effects. It could be worse. I always have to remember that. Stablizing my MG is the big thing right now......I can go from really, really feeling good to feeling like crap in a matter of minutes.......... Big hugs! Erin [/COLOR][/SIZE][/FONT] Quote:
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Erin . |
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#5 | |||
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Member
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When I am up above 30 mg of Prednisone daily for long term, in the past, I blow up in the cheeks, & neck area. I feel like the Blueberry girl on Willie Wonka ! I told the Doctor that once, got him laughing.
I go between 10 - 20 mg now, I try to keep it to 10, but when things act up, I go up to 20 for a few weeks, & ween down to 10 when I can. Erin 60 mg, for a year, wow, I have done the 60 mg for a few months before, but have weened down 40 than 30 stayed there for awhile. than managed to get down to 20, it was a struggle though, things kept acting up. You look great for being on 60 mg of Pred. , long term, how is your blood pressure, & cholsterol ? Hope you can get down on that ! Mary |
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#6 | |||
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Senior Member
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You should have seen me @ 80! I was on that for the longest time!
Right now I'm @ 30, but it was just tapered after the last IV IG - from 40 - my neuro tapered it so quickly before that I actually had a crisis, but overall I have been @ approx 60 for a year now! Your Willy Wonka comment was so funny! That was great! ![]() I get my blood work done every 2 weeks (b/c of the Imuran) and so far everything has been GREAT! Granted, I take a boatload of supplements, but they keep me in check. My blood pressure is great too! In fact, some days it's too LOW - go figure! Can't wait to hear from you! Erin ![]() Have a great night! Erin ![]() Quote:
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Erin . |
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#7 | |||
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Member
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erin, it's great you get your blood work checked often. When they had me on Imuran, & methotrexate, I had a problem with my liver, they had gotten me to high on the meth. I got into trouble. They just decreased the dosage, & I was fine. Strong stuff !
Prednisone , either we feel great & puffy, or weak & thin, If I need it to feel good, I take the weight, as I know it will take care of itself, what are we gonna do? Mary |
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#8 | |||
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Junior Member
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I know what you mean! I'm on gobs of steroiids and I look like an oompa loompa. I hate the bloated feeling! I also HATE the jittery agitated feeling I get. My doctor gave me Lasix and Potassium. It really helps get some of the bloat off. You might ask about it.
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#9 | |||
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Member
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Erin, before my MG, my weight was around 80 kg for 1.80m, I went down to 72 kg due to chewing and swallowing difficulties and I was on Pred since the beginning. After those difficulties disappeared, I stabilized at 76 kg, but when the steroids begun to act after about 6 months on the other symptoms, I went up quickly to 82 which is my present weight. But I have the firm intention to take the opportunity of our vacation in Sicily to erase that protuberant belly and go down below 80 kg…76 was really fine!
Maurice. |
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#10 | |||
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Member
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I have just been shopping at the Salvo's for jeans, as none of mine fit.
Iam determined to lose the weight I've gained (13kg) and fit into all my nice clothes again ![]() ![]() ![]() ![]() ![]()
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Outside of a dog, a book is a man's best friend. Inside of a dog, it's too dark to read. Groucho Marx |
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