I totally feel you Freelee. I was on Prednisone and gained 60 lbs while on it. But I've been off for 2 years and can't get the weight off. No diet or exercise seems to help in any significant way.

My personal belief is that the issue is that we have wasted muscles and that is slowing our metabolism down to a crawl. I would love to find something that would "reset" my metabolism so it functioned more effectively.

I also have a fatty liver. I was told it was from the medications. Also my cholesterol is too low. They told me to eat fish but I don't eat fish.

:( im sorry! yes it is common with the meds. I was only suggested a high protein , low carb , low cal , and low fat diet :) it seemed to worked for me but everyone is different!

Hi there Freelee. The weight thing is so difficult. I have been on a diet since June and it's slowly coming off. For me it's a combination of diet and exercise. I was on holiday in Turkey in June, saw a picture of someone I did not recognise on my boat and was shocked to realise it was me. It's not easy but I don't want to be that woman and can sacrifice food to not be her. For you, I think you may be carrying some fluid as you say your legs and arms are swollen. It would not hurt to check it out. Best wishes to you. Autumm

Hi Freelee, I am not a doctor. Here are my issues - I have DM and an autoantibody that causes fatty liver and accompanying chronic kidney disease. My CKD causes swelling in my arms, legs, and most notably in my fingers and around my ankles. My swelling is not big so I am not on a diuretic to remove excess fluids.

At this point, my Cellcept is working well to control my liver and kidneys from progressing too fast. I have mild swelling at this point in my belly area called, "Ascites" from the liver disease. My stomach is not big enough to need aspiration to remove fluids yet.

I watch my diet by eating a lot of green veggies to keep my blood sugars in range. I also drink plenty of water. When my blood sugars, sodium levels, and blood pressure drops lower then I drink Gatoraid which has been helpful for me to support my kidneys.

I must be careful with my fatty liver to watch my blood sugars. I try to keep my sugars in normal range to avoid the possible development of diabetes.

I also watch my blood work on calcium and potassium levels. (You will notice that the complete metabolic panel blood test run by the rheumy is a liver and kidney check. AH HA!) If my calcium and potassium levels are too high then kidneys are not filtering well. I must also avoid sodium (salt) to keep sodium scores lower if possible.

In my case, I watch blood sugars and take my blood pressures. I like the Joel Fuhrman Super Immunity diet which has been very helpful to me. I drink a lot of water daily. I try to keep sodium (salt) levels lower if possible.

Keep in mind that every person is different. It is a good idea to ask the doctor about diet that is appropriate for you to keep the liver healthy as possible.

Best Wishes.

Meow,

Hi Freelee.

When I got PM, I weighed 180, which was healthy for my body type.

Then I was given Dexamethasone, which increased my weight to 251.

I switched to Prednisone, and my weight came down to 210.

After a year on Prednisone, I am still at 210. Could be the Pred, but I have Fibro & Diabetes 2. Could be those and the meds I take for them.

Good luck with your weight loss.

Purr.
BK

Thank you everyone for all your responses, which have been most helpful. I always have some feeling of guilt for being overweight like it is from what I am eating but I am not eating much at all or unhealthily. Your responses have made me realize that my actual health issues are the cause of the fluid and weight gain. I am now trying to drink more water, cut out the sugar I drink in tea and am in the middle of tests for kidney/stomach/liver concerns.

Hi freelee - I had a photo taken the other day and it was truly a horrible one! I looked puffed up and not how I felt I looked which I thought was OK. This has spurred me on to try and eat healthily but my Consultant says it is hard to diet when on steroids and MTX. It is an uphill struggle what to do.

Hi Amber. The 'puffy' look is definitely the steriods. When I finished them that went away. You are doing so well and nearly there. Slowly, slowly by the late Springtime you will get there. Best wishes. Autumm

Thanks for the comments Autumm - down to 5 1/2 mg steroid at the moment. What a slow job this tapering is. Still determined to beat this condition - while that strength is within me I will keep on like many of the rest of us. Take care and have a lovely Christmas - best wishes to all.

Hi Amber. Very well done. It doesent matter how slowly you go, it only matters that you get there. You will be really pleased when you get down to 5mgs and below. The MTX seems to be finally working at the right dose for you. Wonderful Amber. Onwards and upwards !!!! Autumm