Diet and Prednisone
I came to visit my sister in NYC as she has moved here. I arrived 28th February and within a week I developed rashes on my fingers. I couldn't go out as the weather was bad and the cold cut into my rashes. I loss weight as I didn't want to eat, I was tired, I couldn't sleep at night, I was bed ridden alot of the times as my legs really ached. I went to see a dermatologist who took a bi-opsy and blood tests. I was then referred to a rheumatologist. Who prescribed 40mg of Prednisone. After 10 days of taking this drug I developed seizures and steroid pyschosis. I changed my rheumatologist as the first one did not respond to my sister's calls when I ended up in ER. This guy was scientfic but didn't have the human side nor did he tell us the side effects. The second rheumatologist took me off the Prednisone and put on Plaquenil, Naproxen, Calcium, Citrate+D, one a day womens multivitamin and Prevacid. My weight has always been 112 lbs (7 1/2 stone). Since developing Lupus have gone down to 98lbs (7 stone) . I have lost weight and hair.
I read about the Lupus diet book and it seems alot of people gave up dairy and became vegans. However my new rheumatologist said I should eat everything but have a low-fat diet. Has anybody else changed their diet and if so, has it made a difference?
I am still stuck in NYC as my UK insurance has not given me the go ahead to travel back to the UK so this is an added worry since the payments so far exceed $25,000.
I hope the information here will help others in particular the bad experience I had with Prednisone.
dear coco, (sorry about the spelling :? )
i'm so sorry you had such a hard time and had the run around with all the doctors. i'm sure you wanted to have fun with your sister and not be stuck, in pain and lost in a big cold city.
i have a very bad reaction to steriods and no one told me it could happen, i had to call everyone to get a answer. then i posted it online and the great woman on this sight helped me understand what happened and told me to hang on because it would pass, and it did.
i really changed my diet out of pure desperation, and it helped alot.
i cut out refined sugar, white flour, red meat and dairy. it was hard at first but i live in a city that is very healthy so i have alot of choices in restraunts. i still let myself have a treat now and then but 80% of the time i eat well. mostly in has helped with the flu like stuff and the fatigue.
let me know how you are doing, i would to support you as you get back on your feet.
Thank you for replying. So what do you eat? I have lost so much weight and need to gain weight and also work on my energy stores - I feel tired whenever I have my flares which now has started again on my second week of being on Plaquenil. I am a vegetarian and have been for a long time.
When I first noticed my lupus like symptoms I had rashes (like bruises and discoloration) on my finger tips/toes and then on my legs . I hadn't a clue what this was. This happened almost 4 weeks ago now and you can imgaine how I felt. I lost all desire to eat and consequently my appetite rapidly declined.
I was rushed to ER because of seizures and it seemed like I was in a different world - I was being child like (although I am almost 40!) and waking up saying strange things - I guess this was because of the heavy dosage of Prednisone.
I have now got rashes on the back of my fingers and it is tingling and sore, I also had some under my chin and my neck joints in pain. I will be going to my rheumatologist on Monday
Any help on the diet side of things would greatly be appreciated.
Thanks alot !!
i'm glad your getting to the doctor so soon. most of my doc's say diet will not change anything, but thats western doc's for you. all the eastern doc's say much can be helped by proper diet. i eat lots of veggies cooked every way. lots of smoothies, whole grains, and fruit- ton's of water, fresh veg juice. even when i feel totaly un-hungery, i make myself drink a protien shake, it gets me on my feet. goats milk and yougart are great to.
let me know what the doctor says!
I had a reaction to a medication we don't know if it was prednisone or one of the other drugs I was on. I had burning in my chest and neck and was very very dizzy then I broke out in a burning rash. Of course the doctors didn't say it was a med. reaction. But I took myself off drugs and all those symptoms went away. I am also a veggie and it helped me when I was first diagnosed and still seems to help. I'm trying to cut out sugar. My daughters a diabetic so we don't have too much in the house anyway. I hope you are on your feet and feeling better New YOrk city is a great place to be.
How long ago before you came off the drugs?
I have been on drugs 19 days now. I am finding the tablets make my stomach acidic. I also find it makes me sick and sometimes hard to eat. I cannot afford to loose any more weight.
2 days ago I have started crushing the tablets and started having it with soya milk, which seems to have helped.
Sometimes I wonder, we have lupus but why do we have to suffer? Is it not enough we have this disease? Do we have to go through itching, pain etc as well? It is so unfair and scarey at times.
I am glad I have found this web site. It really helps to talk and also get support from every1 here.
Wishing you well.
I was on meds for the last two weeks. I felt so bad taking the 23 pills a day, I took myself off all of them. I'm tired, some pain but I feel so much better. I went to a naturapath yesterday and had some tests and am going to try the natural way. Hey coco I read somewhere lately that soy might not be good for people with lupus. I can' t remember where, but you might want to check it out or read up on it. I took two weeks off work and am now working half days. I hope you are doing better. It is a miserable disease. I'll let you know how the naturapath goes when I get on something. Take care...sss
Coco I don't know where that comment about your mom came. I didn't type it...wierd. sss
what did the naturapath say about diet and lupus? did you get a good feeling that they had hope dealing with people like us?
hope you well,
I went and guess what they took blood. I couldn't believe it, that didn't feel "Natural". But he knew tons about lupus and ph level and the immune system. So he waits for the blood work up, I go back on Friday and get the "treatments". supposedly I will have more energy, feel better, attitude and affect will also be better. I'm crossing my fingers (except that it hurts to do that). Since off all drugs I am tired but doing o.k. I am working about 4 to 5 hours a day. I come home and that is all I'm doing. My husband is doing everything else right now and the kids are being helpful, but I hate not being able to walk, or go out with the kids, or see friends, or work full time. Luckily I have tons of sick time so its working out o.k. at work, and when I'm home I answer my emails and make calls. But I need to be at work. :P I hope you are feeling better. I'll let you know Friday what he says. My fear is after seeing my blood he'll say keep dreaming, I can't do anything for you!! but I hope not.
Take care and feel better, stacey