Treatment for Lupus (Hair Loss)

I would be very careful about steroids. My neighbor carried her child full term and lost it. She was taking steroids. They told her she could never have anymore children and about 2 yrs later had a normal child. G. W

As I understand it, Lupus is an autoimmune disease. If I was facing an autoimmune disease I would run to a nutritionist and see if I could make dietary changes and perhaps some supplements to help restore my immune system.

I am aware of one doctor who found that when he treated his Lupus patients with a gluten free diet, 90% were healed. Autoimmune diseases like Lupus (and MS, RA, etc.) aren't ever "cured", but with proper treatment the symptoms can resolve. Here's an excellent research article on this topic:
http://www.pubmedcentral.nih.gov/picrender.fcgi?artid=175...
Tinyurl (if the above is cut):
http://tinyurl.com/a3qf6s
(this is one of the few out there where you can get the whole article for free, so I would suggest your friend save a copy and take it to her doctor). And this researcher is one of the top in terms of looking at the impact of celiac on the entire body and not just the gut. He was one of the first to identify the neurological connections. Note also, that the negatives of the steroids is very clearly highlighted.

There are 105 articles on celiac and lupus in pubmed (the archives of medical research), with 61 being published since 2000 and only the most recent really identifying the correlation. The human genome project helped to identify some of the genetic commonalities that have triggered the more recent research. An excellent book on the topic of gluten intolerance and other autoimmune disorders is dangerous grains, written by a well known allergy doctor (James Braly) and a celiac researcher (Ron Hoggan).

Celiac is the autoimmune disease associated with gluten intolerance. Your friend can get tested on her own at Enterolab: www.enterolab.com

Most docs know little about this as most were taught it was rare in medical school. It's only been in this decade that all the research has shown it's very, very common - the most highly undiagnosed genetic disorder. There are over 2 million people that have NOT been diagnosed. So, I cannot urge her enough to do this test -it's made the difference between very poor health and wellness for my family. It's also what led me to figure out other related health issues that the docs never would have considered.

I would also recommend your friend be tested for autoimmune thyroid disease. That could be the source of her hair loss. The doctors MUST test for thyroid antibodies (TPO and anti-thyroglobulin)and ideally should do a sonogram of her thyroid. If there are nodules, then that is a significant sign of autoimmune thyroid disease. I have it and so do my two sons (and we also all have celiac).

It is not unusual and is actually the norm rather than the exception for folks to have 3 or more autoimmune diseases. Several doctors and scientific experts that I know believe that celiac/gluten intolerance is the root. Research does show that the same genes are involved.

Steroids are only a stop gap treatment for autoimmune diseases and IMHO, the side effects can be worse than the diseases themselves, particularly when folks address the other autoimmune issues. It's very unfortunate that so many doctors don't treat our body as a whole system, rather most diseases are treated in isolation.

Natural remedies and good nutrition may help your friends lupus symptoms. I just got an email from someone who had reduced her symptoms. Contact me if you would are interested in natural methods to try.

N., I work with Nutritional Supplement Company, I have seen people get great result with Lupus, Fibromyalgia etc. with no side effects. These supplements are taken by pregnant women as their pre natal vitamins. Let me know if you would like more details.

I am a mom of 2, married and work from home.

A.
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Hi N.,
My grandmother was diagnosed with Lupus a couple of years ago and just yesterday I came across a Lupus foundation that I want to volunteer with... Anyway, the foundation may have some helpful information, support groups, etc.

Here's their info.
Lupus Foundation of America, North Texas Chapter
Address: 15441 Knoll Trail, Suite 190
Dallas, TX 75248
Phone: 49-###-###-####
URL: http://www.lupus-northtexas.org

Good luck to your friend! And she's very lucky to have such a concerned and caring person in her life that wants to help.

Hello, sorry to hear about your friend. Steroids are so very bad for you, except for certain things like rash or inflammation, then for a week or so.
I have lupus, and 5 other autoimmune disorders. They all have some things in common, mostly flu like symptoms, aches,pains,rash,etc. prednesone will cause weight gain, among other bad side affects.
The best, and safest treatment is an antimalarial medication called Plaquinil.I've been on it for 23 yrs, and have to have my vision checked every 6 months. I have lab work done about every 3 months or so to check organ functions.
There are several kinds of lupus, some worse than others.I'd suggest for you or your friend to go on line to Web MD.com and they list all the questions or answers you'll need. Not a good idea to get preg. right now. I started off with Rh. Arthritis.
There are websites on line with numerous support groups, to exchange information. Go to a good Rhumatoligist, and refuse prednesone.She will need to limit her sun exposure, and there is a clothing Line that has sun protective wear (discovered by NASA, 50% UVA UVB protection) "Coolibar ", also Columbia brand is good too. Expensive , but worth it.
From personal experience,the best patient is a well informed one.
Your Dr. may have your records,know some of your history but ONLY you know how you feel, and must convey this to Dr. in 6-15 minutes you have his attention.
My Dr.said it would be good if his patients become aware of their conditions, and what to look for or to expect.
Hope this isn't TMI (too much info), but its hard to tell how long she may have had this BEFORE diagnosed.
Hope it's helpful to you all in some way. KNOW your own bodies and what's normal for you may not be for others.
BF

Dear N.,
I have a friend who is symptoms free from Lupus by taking natural nutritional shakes. I will be glad to connect your friend with my friend.
I am Fibromyalgia symptoms free by taking the same shakes.Fibromyalgia disorder is similar to Lupus .
These shakes are safe during pregnancy and actually serve as prenatal vitamins.
Call me if you are interested at ###-###-####
S.

I have autoimune issues. The body makes all sorts of steriods during pregnancy. It was a total holliday from my issues. She may not need her medicines during pregnancy. This doesn't happen all the time, but my doctor said it does happen that autoimmune issues resolve during the 2nd and 3rd trimesters of pregnancy. Mine went away about week 11 or 12 both times.

Hi N.,

My son was diagnosed with the auto-immune condition, lupus, 11 yrs ago at age 9. It was very difficult to diagnose because the disease is commonly found in women and seems to be triggered by hormone spikes- it was not something they expected to find in a young, African-American boy with no family history! Initially, the condition was limited to his skin (Discoid lupus) and he had round patches on his skin and scalp and hair loss (of course with a boy this wasn't a problem). The disease eventually became systemic which is the more serious form because other organs can be attacked. He never was treated with steroids and his condition went into remission.

The best medication he took was Plaquenil which is actually an anti-malarial drug. He also saw a dermatologist and was prescribed fade creams, sunscreens and some kind of corticosteroid creams for the lesions. The hardest thing for him was to avoid the sun as much as possible (which was difficult in California). We also altered his diet somewhat by avoiding wheat products and he stopped using Advil (Ibuprophen) as these aren't good for a lupus sufferer (per my internet research). Your friend probably needs to get with a good rheumatologist or other lupus specialist. If she has a university hospital nearby they should be up on the latest research- especially about becoming pregnant because the increase in hormones during pregnancy may be a problem- not to mention the steroids. My prayers are with you and your friend, and just know that your friendship is her best medicine. God Bless...

N.,
I am so sorry to hear about your friend. I know God only puts us through what we can handle and this is probably His way of making her stronger. I know of a company that has products that help everything from arthritis, lowering high blood pressure or cholesterol to removing toxins. Your friend can go to www.testimonyinfo.com to read what others have to say about their products (just click on L then scroll down to Lupus). I take them myself and there is no others like them! If she would like to try them have her give me a call and I get her the products at wholesale. Have a blessed day.
Kim ###-###-####

As far as I am aware Lupus is one of many autoimmune disorders there are no cures for. Steroid treatment is meant to subdue the bodies internal attack on itself. Taking a great vitamin and food regimen approach is the most helpful beginning. She needs to speak with her OB for prepregnancy health regimens and knowing the risks before becoming pregnant.Good luck to her, she obviously is a great person to have such good friends.
K. @ The nestingplace

The medical community has nothing to offer other than syptomatic treatment. Treatment is generally individual, depending on symptoms and the degree of severity. The steriod treatment may not be needed at all times. Hair loss can be a normal side effect of the medications. I would encourage my friend to read every bit of available information on the side effects and the effects of any medication on pregnancy before continuing to take it while trying to become pregnant. A lot of medication do the most damage before one even knows that they are pregnant.
Many women are fortunate in that when becoming pregnant, lupus symptoms are not as severe or temporarily disappear; however, for others there is no change or it gets worse. Lupus can also be associated with clotting issues. It may be wise for your friend to make sure her OB is fully aware of her condition and it may even be advisable to seek advice from a doc specializing in high risk pregnancies. The medical community knows a lot about lupus and at the same time it is still a big mystery. She should proceed with caution!

N.,

There is a huge connection between nutrition and health, but that is one piece of the puzzle. Ridding your body of toxcity such as metals, pollutants are huge in addition to getting enough vitamin D from the sun are just another piece of the puzzle. I have many resources that I have used to get through my health journey and would love to share them with you. Please email me if you a interested at ____@____.com

She might try Shaklee's Nourishing Scalp Treatment to help with hair growth.

I don't have lupus but I do have a rare condition that was treated with steroids. I was on them with my first pregnancy and was told they are perfectly safe. I had no problems with them at all.

T.

N., I have Lupus also and the steroids is just one medication that I have to take on a daily basis. The permanent treatment for Lupus is medication. And trying to avoid stress. I know when I have a lot of stress around me I get really bad flares. Your friend should be more concerned with the immune surpressants and some of the other medications during preg. When she is ready to conceive she should talk to your doctor at least 6 months in advance so they can adjust or change the medication. Good luck!!

My best friend was diagnosed with Lupus about 8 years ago. Treatments vary depending on the type of Lupus. For research purposes, I ONLY recommend www.lupus.org. The other search engines can give some really frightening information which may not be accurate. However, the Lupus Foundation of America is the legitimate non-profit created for Lupus patients and friends/families of those diagnosed. I wish your friend the best.