Lupus

My friend has it and she has to stay out of the sun and eat lots of veggies. Look it up on line and you will probably get a lot of advice. She keeps her drapes drawn all the time and only goes out in the evening. I know that's not much help.

Hi J.,

I have Systemic Lupus Erythematosus ( SLE ). There are a few different kind of Lupus. I'm not sure what kind you have, but I'll be glad to talk to you about it. Just send me a message and I'll answer any questions you have.

P.s. I also have 16 years in the medical field.

R.

Hi J.

I too have Lupus. Have had it for over 8 years now. It's a hard one to diagnose and effects no two people alike.

The very best advice I can give you is to get "RESTFUL SLEEP" and to pay attention to what stresses you out and try to avoid it, if possible. Lupus attacks the weakest part of your body. A Positive Attitude will really help you. Sounds a little lame but I promise you, after eight years of this, I have found it to be true. I have two awesome doctors who keep me positive and relatively healthy, (my rheumatologist and my kidney specialist). But most of all, God is the mightiest power I have against this disease. Do you have SLE or discoid lupus??? If you ask me any specific questions I will do my best to answer you.

A little about me: I worked for 30+ years in the medical field, had to go on disability in 2004, which was the very hardest thing I've ever had to do. I am a divorced mother who raised three sons by myself, so I always worked a job and a half, and was constantly on the go with my boys. With Lupus you must be selective about what you do. Pick the things you really enjoy the most and DO THEM! Please contact me should you have any questions. I would be more than happy to help you like I have been helped in regard to this darn disease. Good Luck J.!! And God Bless you and your's.

Food advice: Stay away from sugar substitutes please!! Also deep fried foods and most of all, RED meat! Learn to love vegetables especially the green ones. The docs tell me to limit tomatoes from my diet but that is one vegetable I don't believe I will ever give up. Fruits are great however, he tells me raw, frozen but not canned. Breads and sweets are also limited. Water, water and more water is what my doctors have ordered. A good multivitamin is okay but if you eat fresh vegetables and fruits you will get the minerals and vitamins that you need. I went through the vitamin/mineral and detoxing which was recommended to me by a nutritionist, which ended up causing more problems than helping. My doctors frowned on the detoxing especially. Both told me that your body has a wondrous detox system all its own and I found that eating the right vegetables and fruits, poultry and fish have helped me immensely.

Also, stretching exercises and walking (if possible) helps a lot. But, honestly, restful sleep is the key!

Lupus, as I'm sure you know, is an auto immune disease. RESEARCH ALL YOU CAN. If you control your diet - plenty of vegetables, protein and some fruit, ELIMINATE processed food, preservatives, dyes, etc.... exercise and get on an EXCELLENT (NOT over the counter) multi-vitamin, I've seen EXCELLENT results and even "no longer considered to have Lupus." I've had clients with lupus.

I'd also try doing some ionic foot baths/cleanses and/or some detoxing. There are many forms of detoxing and you should be able to find one that fits your personality type. I'd be VERY surprised, if you did all that.....that you wouldn't notice a definte difference.

Hi J.
I am in nutrition and we have had wonderful results with such issues and treating it nutritionally. If you are interested please let me know I would be more than happy to talk to you about it.
S.

I was diagnosed with SLE around 16 years ago while I was in college. I was fortunate and had an early diagnosis and I was able to get my symptoms under control. I took Plaquenil for years and the only thing I had to do was see an eye doctor every 6 months b/c it could affect sight. When I wanted to start a family I was not having any symptoms and went off the Plaquenil. I have been off the meds now for almost 7 years and haven't had any problems. I'm always on the alert for any signs and I don't get a flu shot because a friend of mine got one and that triggered a flare up. I have talked to my doc about it and he actually has MS and understands and is okay with it. I make the rest of my family get them. Sleep is key - which is difficult with three little ones, but I do what I can. I know I'm lucky because mine has been very mild. Don't panic and find a good rheumatologist - they will be your best friend. I actually switched after I had my first child because I just didn't feel he supported some of the decisions I was making (ie breastfeeding and having more kids). The second one I went to was much nicer. She has moved away and I admit I haven't seen one in over a year, but feel that I know my body and if necessary I will go. My family doctor has the ability to run baseline blood tests if needed. Anyhow - good luck!

Hello J., I am 37 and have had the lupus dx for about 7 years now. I was recently dx'd with a condition called Hashimotos Thyroidits it is basically hypothyroid caused by my body attacking itself, which is what lupus does. Our immune system is overactive and goes after even the good tissue/organ. I have been on plaquenil off and on over the years. I have woked in ophthalmology for 15 years and in my experience have never seen anyone have to stop the medication because of any damage to the retina. I am back on the med now, after I had my 2nd child 20 months ago, my symptoms returned. Most of my problems had been joint pain and fatigue all systemic, the plaquenil does work for me, in addition to aleve. I recently saw a rheumatologis for follow up since I started back on the meds. She ordered alot of other labs, mostly to be sure the liver and kidneys are functioning well. and they are. I would suggest the most important thing is to have a good rheumatologist and doctor. Keep a log of your symptoms and share them with these doctors. I do not know what your symptoms are or what they are going to do for you but I wish you the best. Patience is the key here because these symptoms mimic so many other kinds of auto-immune things. It took me over 5 years to receive a dx. T.

Good Morning,
I too have lupus. ____@____.com. After three midiagnoses. It's a very weird disease in that it turns your immune system against you. I myself do not take the drug that they reccommend (plaquinil) just because the side effects are much greater than the actual effects that I experience. I in no way suggest that for anyone else, you have to know yourself and your body to make that decision. I have to say that the disease is managable. You just have to operate in your life with a fuller awareness!!! You can do this, I would love to hear from you anytime!!!
Hugs,
D.

My mother has suffered from Lupus for 20+ years. It is an auto-immune diease that is best managed by a rheumatologist. There are some maintenance drugs, no cure. Many of the drugs have unpleasant side effects (like liver problems). My mom has been on prednisone for years and she'll never be able to get off of it. She also says "everything in moderation." Get involve the Lupus Foundation (www.lupusfoundation.com) - its a great souce of support.

Good luck to you!

Dear J.,
Sorry to hear about your diagnonsis. I know of lupus because my neice has it. I don't want to scare you but it's not good. She has already lost her kidney and has had several chemotherapy treatments,right now she's in a wheelchair because she was in the hospital so much that her muscles gave out and she's going to therapy. She also has to get dialosis. I guess it's all about keeping up your immune system, once that goes down then the lupus comes out. I wish you all the luck. As for my neice she's taking it one day at a time.

J., I do not have the diagnosis yet, but have most all of the clinical symptoms. I do however, have a diagnosis of Antiphospholipid Syndrome which many Lupus paients have. Learning all that I can is keeping me alive. Funny, I was a trained paraprofessional in the schools working with children with multiple diabilities. I was in the classroom when I had a stroke and was diagnosed a few days later. I do belong to the on line Lupus foundation of Ohio. I also belong to an international support group where I am proactive in my health and in helping others as I am able. Were you diagnosed based on symptoms? There is no blood test that proves Lupus, though Lupus anticoagulant is often mistaken as a diagnosis. This is actually one of the antibodies tested for with Antiphospholipid Syndrome. If I can be of help, I'm happy to.
D. T

It depends on the severity of your illness. My mom had lupus and I'm no doctor, but I am somewhat familiar with the symptoms. My mom's lupus was very mild and it didn't affect her everyday life much. For her the most important thing was sleep. I know she was quite tired a lot of the time but never complained-my mom is so awesome! Just be sure to schedule enough time for yourself-getting enough sleep will be important. Maybe you're already doing this. Best of luck. It is a manageable disease.

my aunt has lupus, it attacks your immune system & internal organs as if they were infectous to your body. there are quite a few treatment options to consider. you can google "lupus", havard medical university & the cdc have good references on it. there are also different types of lupus, you should ask your doctor to be specific if he hasn't already. hope this helps.