Lupus Support Group

Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.

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DEFINITLY LUPUS NEED ADVICE

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I know it's been awhile since I've been here. Just trying to pull myself together after the news...after all the doctor's and all that I have been through for the past 2 yrs, I have found a doctor that really knows her stuff. She wanted to rule out any possisibility that all my problems weren't something else causing all the pain and past liver problems resulting in the sirosis....Got the news Monday....Definitly systemic Lupus...truely a blow and alot to soak in. She has started me on Predisone, and Imuran and Hydrocodone. She wants me to loose weight (fun) and take a yoga class for exercise and stress relief. I cried for an hour when I found out the Azathioprine (Imuran) is a chemo theropy drug. This is scary stuff. The only comfort coming from it is knowing I'm not crazy. The nerve conduction study was so painful and it showed all the nerve damage and arthuritis in lower back (now I have to go back for one on my neck to see where the headaches are coming from--not looking forward to that). The bone scan showed "hot spots" in my shoulders, hips, legs, ankles and feet. I am overweight and have battled it all my life...I'm 190 pounds now, but the only way I've been able to lose it in the past is starving myself(which the doctors in the past tried to say had caused the liver damage). I know the prednisone increases your appatite (just wonderful)..Anyone have any advice on a good weight loss program?? Thank you...Wendy
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Talk to your doctor further about an appropriate exercise routine, taking into consideration your limitations due to the nerve damage and arthritis. Don't get anything started until you have something specific from your doctor. Once you do get something specific go to a gym that has a personal trainer so they can teach how to exercise in safe manner so as to avoid injury.
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Thank you so much,the people here are a godsend. I've gotten some of the best advice from just browsing. It truly is "Daily Strength"! Wendyjo
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Ask you MD about swimming. Low impact and does a great job on the cardiovascular system, if you have a gym with a pool or a YMCA around they may have rates for pool only.
I lost 5 pounds in three months swimming. Slow loss yes but a steady loss--they say that is the best kind.
Try drinking a cup of water before each meal about 6 oz. It fill you up so you do not eat to much and keeps you hydrated if your not a big water drinker.
Good luck....DJM
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Yes good advice re swimming and that glass of water before meals.Also if you can do some walking that is a goodoverall exercise also.Slow weight loss is the best! marilyn
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I found that the Weight Watcher's point system really, really helped with the weight. I felt full all of the time and the food you can have is phenomenol...even a glass of wine! I have just started some Yoga & Tai Chi via VCR tapes and I like the low impact and results I am getting...plus they are very stress relieving. The walking is a great idea...if you have a dog, it is more fun!
Rosemary
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A good program is weight watchers. Portion control, lower salt, lower sugar. More calories burned off then taken in.
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Metabolics is a good program...I've known ppl that have doen it and lost a good bit of weight ad still ate very healthy.
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Hiya wendyjo.i am also systemic. trust me the Azathioprine is a very reliable drug although it is a chemo based drug it is definatly worth taking. i was taking it for the best part of a year. The predisone is a good steriod aswell as it reduces swelling. although it is a steriod as long as you dont give in to the hunger and stick to your normal diet. you shouldnt gain much weight. best of luck to you i know the news scares you, it did the same to me. but you have all the support you need on this forum.. we are a team :)
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I lost 84lbs by checking the fat in EVERTHING I ate,you would be shocked at how it can be so much higher in just a slice of bread from one brand to another.If you look you will see that a lot give you the fat content,but unless you really look it can be for a 100grams when you think it is the whole thing.
Weight Watchers is very good,as I have spoken to someone who works for them and their counts,fat,caloires,ect are spot on.Good luck,loosing weight is a life choice not a whim,if you can accept that you will do it.By the way I had to do it with NO EXERCISE due to my health,it took about 1-2 years but has been of for 6-7yrs now.Watch outfor the little devil in your head that says "go on one won't hurt".You have a lot on your plate at the moment,"no bunn intended".I wish you all the luckin the world,am here if you need to talk.
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MY SISTER AND I BOTH HAVE LUPUS AND SHE IS ALSO ON THAT CHEMO DRUG. AFTER ABOUT 3 MONTHS OF GAINING WEIGHT SHE HAS FINALLY GOT IT UNDER CONTROL. SHE SAY'S ONCE THE MEDS GET INTO YOUR SYSTEM THEN YOU CAN FEEL THE DIFFERENCE AND YOU CAN DO SOME WALKING. SHE HAS BEEN WALKING LATELY IN THE LATE AFTERNOON WHEN THERE IS LITTLE SUN AND NOT SO HOT. MAYBE YOU SHOULD JUST GIVE IT TIME TO GET IN YOUR SYSTEM THEN YOU WILL FEEL THAT YOU CAN DO MORE WITH YOUR DAILY ACTIVITIES.
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I am not sure about Imuran being a chemo drug...my husband has Chrohn's (yeah isn't that odd...I have SLE and he has Chrohn's BOTH autoimmune and both diagnosed within the last 3 years), but he has been on it since 2004 and has little to no side effects except that it keeps his Chrohn's in remission. He has not gained weight and does not swell...He takes it in conjunction with Asacol...He has done very well on it. He is on 100 mg a day. Anyway....I hope this information helps...

I do know that my doctor mentioned it if the addition of Quninacrine to the Plaquenil did not put me in remission. So, hang in there and hopefully you will not have any side effects from it either. They did add dexamethasone to my regimen and I have noticed a slight increase in appetite, but nothing I can't handle.

Hugs....

Diane
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