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cradle
New Member


Date Joined Aug 2014
Total Posts : 5
   Posted 8/19/2014 6:26 PM (GMT -6)   
Hi, Im new to this forum and I have been recently dx with lupus although my doctor seems to think I've had for the past seven years I just started getting all the symptoms, bumpy itchy rash all over my body at first they were just tiny dots and now they like combined are pretty big the butter fly rash joint pain....all the good stuff:) I feel so depressed like my life is over I don't know how to live with this thing I need opinions how people live on the day to day basis knowing that at any given moment you can have a flare up?
With the treatment ( I am currently taking hydroxychlor and fluocinodine cream) how long do these rashes last do they leave any scars, does hot water also cause the flares up?
I was told that with lupus you can't stress need plenty of sleep and rest, well I'm a very sensitive Person by nature I can start crying with a snap of a finger, is that considered stress can crying cause flare ups?
and Also has anyone ever heard of "DIGESTACURE" ? read an article online cried for an hour.

Have you been told that your disease is incurable?
The Bottom Line: “The modern-day medical system will not train or permit the medical doctor (the MD) to address and conquer Autoimmunity (the root cause), responsible for over 100 autoimmune conditions including Lupus. The doctors are permitted to treat symptoms only. The root-cause, Autoimmunity, has become the “Protected Golden Goose” of the industry responsible for 85% of the revenue collected by the medical/pharmaceutical complex in total. If you would prefer Effective Root-Cause Healing read on, for the restoration of proper immune response and digestive function is indeed the answer and has been accomplished by hundreds of thousands to date

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 8/19/2014 8:43 PM (GMT -6)   
Welcome to HW. Sorry you have to deal with this mess, but if you needed support this is best place to come.

There is no cure for lupus unfortunately. Lupus is caused by our germ fighters going nutsy and attacking our healthy tissue as a germ. This causes the inflammation, swelling and organ damage.
The best a doctor can do for us is suppress the immune response of our germ fighters. Beware of anybody saying they have a cure for lupus.

Be sure to read our first thread on lupus.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 8/19/2014 9:36 PM (GMT -6)   
Your life is not over. Lupus can be very controllable -- of course it can also go wild without warning. But stick to what it is doing now, not what it might do. Worrying about it will definitely cause stress with can definitely increase your symptoms.

My lupus was once very bad -- total loss of my normal life due to cognitive dysfunction (bad brain!) and joint/muscle inflammation issues. Now it is quiet, and I'm mostly functional. There is no need to plan your funeral.

From your meds I am guessing you have already seen a rheumotologist -- if not, then that is the specialist you need to make an appointment with.

If the Hydroxychloroquine and the Fluocinonide Cream don't bring you relief, you may be treated with Prednisone (or other cortio-steroid). A third kind of treatment would be Imuran, Cellcept, or MTX. There are lots of optons to explore.

On a day to day basis -- just do the things you need to do to take care of yourself. 1) Get enough restorative sleep. 2) Eat regularly and reasonably. 3) Get daily moderate exercise. 4) Stay in the moment, do the next right thing, keep worry to a minimum, do not panic. 5) Take medications as prescribed. 6) Report promptly to your Dr with changes in symptoms/meds.

I have never heard of "digestacure" and I think the article you quoted is a piece of hogwash trying to sell you something and make lots of money but not help your health in the slightest.

Hope that's helped, let us know what other questions you have!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 8/20/2014 5:48 AM (GMT -6)   
Hi Cradle and welcome. It is overwhelming when first diagnosed, give yourself some time to digest what it means and adjust your mindset to deal with it as best you can. It takes a while, it's like mourning a bit. You have to go through the stages of grief, anger, frustration etc. At least that is how it was for me. Lupus is a scary word at first with scary implications but many people are living long and happy lives with this disease when it's controlled. Learning how to manage stress is one of the main objectives in my opinion and as a sensitive person I can attest that it's a challenge but it can be done!

As for online articles and claims of cures, I acknowledge the importance of diet and lifestyle with AI diseases but just as there is no magic pill for lupus there is no magic natural remedy or supplement either. It's good to research and learn about healthy living but you have to take things with a grain of salt. What works for one person may not work for another. The goal is to quiet symptoms and optimize your functioning with this disease. Part of that is giving it good fuel to run on, getting adequate rest, not sweating the small stuff and finding a really good rheumy who is well versed on lupus.

I have read so much about leaky gut etc etc and how digestion is linked to AI yadda yadda and while I see some truth to it and eating right has helped some of my symptoms I haven't been "cured". In fact some supplements/foods have made me sick or caused a flare. You have to be very careful and keep your doctor informed of any diet changes or supplements you are taking.

Elimination diets are good to see how your body likes or dislikes certain foods. Especially if you are rashy. I'm having some success with that so far. Nothing to scream from the rooftop about but some improvement is enough for me!

Hang in there and keep coming to see us. There is a wealth of caring individuals here who understand what you are going through. Hugs

cradle
New Member


Date Joined Aug 2014
Total Posts : 5
   Posted 8/20/2014 8:50 AM (GMT -6)   
Thank you everyone for the replies and the support I am really glad to have stumbled on this site, I am not planning on dying any time soon but it does fell like life has changed for ever, thank you all for the kind words they mean a lot I am currently seeing a Rheumatologist she suspects I was misdiagnosed seven years ago and that is why I'm having this bad flare up, I was wondering how long do these rashes last mine is red dots they itch I feel like its getting worst but my Husband says it's getting somewhat better no pain some joint discomfort the hair loss is really scary I feel like I'm going bold I don't exercise never did I have a 3 year old son so the stress level is pretty high, can someone tell me what things to avoid like hot beverages, blow drying my hair, hot showers ?

cradle
New Member


Date Joined Aug 2014
Total Posts : 5
   Posted 8/20/2014 8:57 AM (GMT -6)   
acquiesce: I know there is no cure but one could hope:) I did speak to my mother about lupus and heres what she told me, we are originally from Ukraine Odessa, and lupus has been treated and actually cured with alternative medications, she also said that in Ukraine doctors gave certain types of creams to help reduce pain and itching mean while neither my dermatologist not my rheumy has given me any creams to ease the itching , aloe doesnt help and gold bond has no effect either. My doctor also said to quit smoking, my question is this how can something so relaxing be so stressful I only smoke 2 ciggs a day does that still affect he lupus?

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2608
   Posted 8/20/2014 9:06 AM (GMT -6)   
Over time most of us adjust to a new way of life and don't let lupus define us. Like Lynnwood, I was very sick & bedridden for three years and today live a normal, though less active life. I've learned to live with pain and fatigue and know that I have to cherish every day. Taking care of a three year old is definitely stressful, even for a healthy person. My son recently told me, Mom, you make me realize how special my children really are. I hope you won't lose sight of that.

Yes, 2 cigs a day are bad for your lupus.

You've found a good place to connect with people who can identify with what you're going through.
SLE, fibro, renauds, restless leg?

cradle
New Member


Date Joined Aug 2014
Total Posts : 5
   Posted 8/20/2014 11:08 AM (GMT -6)   
PattyLatty, what type of lupus were you diagnosed with? and how long do the rashes stay ?
I look at actress Hale Berry who was also diagnosed with lupus at the age of 12 and yet she doesnt cover up from the sun her skin is beautiful and she stresses A lot??? how long until the lupus is in remission ?

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 8/20/2014 11:28 AM (GMT -6)   
I can't find any information on Halle Berry & Lupus, although she has had issue with diabetes.

In any case, Lupus does not always have any effect on the skin. My skin has never really been involved. Did your Dr tell you what kind of Lupus she/he is diagnosing?

What are the different types of lupus? said...

Several different kinds of lupus have been identified, but the type that we refer to simply as lupus is known as systemic lupus erythematosus or SLE. Other types include discoid (cutaneous), drug-induced, and neonatal.

Patients with discoid lupus have a version of the disease that is limited to the skin. It is characterized by a rash that appears on the face, neck, and scalp, and it does not affect internal organs. Less than 10% of patients with discoid lupus progress into the systemic form of the disease, but there is no way to predict or prevent the path of the disease.

SLE is more severe than discoid lupus because it can affect any of the body's organs or organ systems. Some people may present inflammation or other problems with only skin and joints, while other SLE sufferers will see joints, lungs, kidneys, blood, and/or the heart affected. This type of lupus is also often characterized by periods of flare (when the disease is active) and periods of remission (when the disease is dormant).

Drug-induced lupus is caused by a reaction with certain prescription drugs and causes symptoms very similar to SLE. The drugs most commonly associated with this form of lupus are a hypertension medication called hydralazine and a heart arrhythmia medication called procainamide, but there are some 400 other drugs that can also cause the condition. Drug-induced lupus is known to subside after the patient stops taking the triggering medication.


No one can tell you how long until remission -- Lupus is called the disease of 10,000 faces because every case is different. You can find out a lot about it at the website www.lupus.org.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

cradle
New Member


Date Joined Aug 2014
Total Posts : 5
   Posted 8/20/2014 12:26 PM (GMT -6)   
I have SLE and its kicking my ass.

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2608
   Posted 8/22/2014 12:10 AM (GMT -6)   
I have SLE. No skin problems as long as I stay OUT of the sun. My lupus symptoms began to slowly improve after about 5 years, tons of rest, yoga, a good diet, and more prednisone than I care to remember. (Plus a few other drugs). But as Lynwood just said, we are each uniquely different in the way lupus affects us. The main thing to remember is to take care of yourself.
SLE, fibro, renauds, restless leg?

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 8/22/2014 6:05 AM (GMT -6)   
cradle said...
acquiesce: I know there is no cure but one could hope:) I did speak to my mother about lupus and heres what she told me, we are originally from Ukraine Odessa, and lupus has been treated and actually cured with alternative medications, she also said that in Ukraine doctors gave certain types of creams to help reduce pain and itching mean while neither my dermatologist not my rheumy has given me any creams to ease the itching , aloe doesnt help and gold bond has no effect either. My doctor also said to quit smoking, my question is this how can something so relaxing be so stressful I only smoke 2 ciggs a day does that still affect he lupus?


Cradle, yes one can hope :)

Western medicine is so much different than that in Europe, China etc and it is unfortunate. It would be wonderful to see a blend of natural and pharmaceutical treatments for disease in North America. I think that is something we may see in the future. I know from experience that alternative treatments can help as I have been going for acupuncture regularly and have seen great improvement in my Raynaud's from it. I also believe that diet can play a huge role in healing.

I'm also intrigued by the research being done on marijuana and it's ability to naturally weaken certain cells in the immune system and it's anti inflammatory properties.

I don't dispute that alternative medicine helps, I just get my back up when people are selling "cures".

Interesting as well is that North America has an abundance of GMO foods that are not allowed in European countries. I wonder if there is a significantly lower percentage of AI diseases as a result.

Unfortunately smoking any cigarettes is a bad idea for anyone with lupus. Every time you inhale a puff of smoke you are taking in foreign chemicals that your immune system is going to respond to immediately and it can send it into overdrive.

Cool compresses/baths will help with the itching and keep the rash hydrated for speedier healing. Moisturize your skin and drink lots of water, it helps! I hope today is a better day :)
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