untreated lupus?

How long can a person with moderate symptoms go without any treatment?

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When you say moderate symptoms what are you exactly referring to? Fevers, joint pain, rash, etc? No way should anyone with lupus go without treatment. Every case is different though in terms of severity. Were you diagnosed and are they giving you anything?

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Symptoms: joint pain (which is what lead me to go to the ER in March), extreme fatigue (but have a hard time sleeping) I get hot alot, but never a fever, and I get a canker sore in my mouth and eczema on my hands and feet and chest pains on and off especially when I have been really tired, and I go through nausea and vomiting when I am really stressed. Which has been alot lately because of my life issues. Through out the years I would get eczema on one spot on my left foot, it has gotten really bad this last few months, I have gotten lesions in other areas, and all those factors were clue me into me knowing that I was going to be feeling good through out the years. I have been told Lupus by my GP in April cause of the lab work...High ANA, high SED, c-reactive, anemia and low vitamin D. So I don't have anything to treat lupus at all, as I said I lost my insurance May 1 of this year, and i am in a county where it's hard to get help with insurance. So I am moving to a different county this week. It's very frustrating and scary.

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I too thought I had "lupus light" and went unsymptomatic for quite a few years to the point where I was taken off plaquinel. Then two years ago I got a really nasty peridontal infection followed quickly by two bad flues within months of each other. From there, things went down hill really quickly. Rashes on my face,hair loss, fatigue, painful joints but I still wasn't getting it. Finally, in November two years ago, the flare hit and I had a vascular hemmorage into the lungs and bronchia and began coughing large amounts of blood. I almost didn't survive as it took them 6 days to stop the bleeding. That was over a year and a half ago and I feel like I am just starting to get back to where I was before all this began. The thing is is that I should never have been taken off plaquinel. I will be on plaquinel for the rest of my life as it stabilizes lupus. I am still on prednisone which I hate but the dosage is low enough to tolerate. Now I realize that all these factors that led up to the flare were strong indicators a flare was coming but it would not have been as bad if my doctors had recognized the systems and started treatment. You really need to advocate for yourself in the medical system. And this is the Canadian system! Good luck to you.

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I have been wondering this exact thing. Four weeks ago, I took myself off all my prescribed meds and started a vegan diet with vitamin and mineral replacements e.g magnesium for muscle pain, vit D (as I was severely low), probiotic etc...
I can't say I feel any better, but I don't exactly feel worse either. Mind you, Elizabeth's story scares me a little and I am wondering if I am messing with something I actually know little about (despite my hours of research). The two rheumatologists I have seen really haven't been very helpful aside from prescribing and the drugs they gave me made me feel much worse in a way. Every thing seemed to have side effects that would then be counteracted with another drug. I ended up taking so many pills every morning that my husband thought I'd rattle when i walked! I'm scared of plaquenil, or anything for that matter that cannot be explained. I know prednisone is a life saver for us lupies and I'm figuring that if/when I get organ involvement, then that will be the time to use it. I hope Í don't sound as foolish to you as I am sounding to myself........

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Thank you for your responses everyone. Well I am not moving now, but working on it once again. The thing i never talk about is the chest pains I get in the left side..Its an intermittent pain that comes and goes, and varies in severity. Sometimes i felt like I was about to have a heart attack. I take aspirin and it seems to help, but I am thinking it maybe time to have it checked out, but i will have to make another er visit as I don't have a doctor....so here we go...

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I'm so sorry for all your going through. Its so frustrating I know. There's no way u can apply for SSI so u can have health insurance? I have the same pains in my chest n they did all kinds of tests n they came back ok. So I'm not sure if its the Lupus or Stress. I know for me I'm just so stressed. With 3 daughters n a husband to take care of its rally hard. I have to push myself everyday. I wish u all the luck in the world. Hope everything works out for you. Oh n if u ever need to Chat or vent this is the right place.

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Here is a website for you to look into www.lowdosenaltrexone.org. I have gone off all my lupus meds after treatment with LDN for 4 months. The treatment is very inexpensive, around 20 bucks a month with no insurance. I ALWAYS have prednisone around just in case I begin to flare. I only use steroids when symptomatic.

I would not advise absolutely no treatment, this disease can cause too much systemic organ damage.

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I have a few comments to make about some of your postings. I'm on my Xoom so it takes too long to type with one finger. If I don't get on my computer tonight I will tomorrow for sure. I hope I don't forget!!

Tiffe-You CAN'T wait to take meds unless you get organ involvement!! That is a HUGE mistake. You certainly don't want to develop something serious or life threatening because you weren't on the preventative meds. Not a smart thing to do. I don't know if you have children, but if you do develop severe organ involvement imagine how your children are going to be affected. It may be too late. Please take your meds. If you're having issues with side effects talk to your rheumy. K
Take care

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Tiffe-one more thing....lupus kidney involvement is silent. You won't have symptoms until it's advanced. If your getting blood and urine tested then your doc will keep an eye on your labs. Get back on your meds girl!!!

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Hi Dee,

I'm sorry I'm just responding to your posting. I am really bad about checking the site often enough. Can you apply for Medical Assistance/Medicaid? If not, is there a clinic locally? Some have sliding scale fees based on your income. Do you know what pattern your ANA was? Speckled? Nucleolar? Homogenous? etc? Honestly, you need to be on Plaquenil if you have SLE. That will help decrease the risk of organ involvement. Some drug companies will give you meds free if you qualify. It all depends on the med, your income, etc. You have to apply though directly through the drug company. You can get the drug company's name for the specific drug being prescribned by your pharmacist. I'm not sure as to how much Plaquenil would cost out of pocket, but it does come in generic. If you need me to help you find out numbers for a particular med I will do it. Just let me know. K? So what is going on now with you since you posted your response a while back. I hope everything is okay. With Lupus too your labs should be checked at least every 3 months. Lupus is silent when it comes to kidney issues so the only way they're going to know is by testing your urine and blood. Well, take care and let me know what's been going on. I hope you can get some help.

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Elizabeth,

Sorry to hear that the nit wit doctor yanked you off of Plaquenil and you had all of those issues develop. That is horrible. I will NEVER stop taking the Plaquenil. I'd be too afraid to stop it. I hope that things are better for you now. I'm going to post a link to the group about some Lupus info.

Take care

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Just posted a link for you gals to check out. Dr. Petri at Hopkins is the one who is giving the info.

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Dee Wood - I can't stress enough how much you need treatment. Especially plaquinel which does stabilize lupus. I have been told that with my flare, if I had been on plaquinel the flare might have happened, but it would not have been so severe. I am now left with emphysema. The thing about plaquinel is that I have taken it off and on for years and never had significant side effects whereas with prednisone I can go on for hours about the side effects (although I do know it saved my life). I don't understand the US health system. I thought that with the new health care Obama brought in, that treatments and medicines would be easier to access. Please understand that I am not criticizing anyone; I just don't understand how it works. What I take is officially called Hydroxchloroquine Sulfate. I take 100 mg a day which is probably the dosage for the rest of my life. I believe that you can access cheaper generic plaquinel through Canadian pharmaceutical companies on line. Take care.

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I got my labs from the Hospital and this is what they say....and YES, I still have no insurance or meds... ANA 1:640...Homogeneous ABM (whatever that means) My Psycharitrists says that means that it has NO definate orgin....WBC 13.1, MPV 6.6, ANC 9.1, trace blood in urine, and trace Leuk Esterase (whatever that means) SED rate 34.....so

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Dee,
A homogeneous ANA pattern is found in Lupus or MCTD. Your psych doc means the homogeneous pattern isn't specific for one disease. At least I think that's what he's referring to. You have an ANA level that is clearly positive. Your Sed Rate is also elevated which indicates inflammation. Do you have protein in your urine? Apply for Medicaid if you can or see if there's a local clinic. Have you seen a rheumatologist or did your psych or primary care doc order the labs? You need to be seen and managed for what's going on. The Lupus Foundation in your area may be able to assist/help you. If you can't find one locally call the Lupus Foundation of America. They may be able to give you some contact info. Ask them to send you out some brochures/info about Lupus. Anyway, you need someone to manage and treat your issues to prevent something serious from happening. I hope you can get some help soon.

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I have had protein in my urine, as well as trace blood. I do know that today it is rainy and my joints are achy....I also know triggers which are stress and too much physical acitivity....Thank you for your advice. I called the Lupus foundation last week also. Very confussing. I have read somewhere that Lupus usually cause low white blood cell count, and mine is always high..not too high, but still high... Thank you..

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Dee
Not all Lupus patients get a low white blood cell count. Our white blood cells tend to increase with infections, etc. Please let me know if I can help you to understand anything that's confusing. You can send me a private message too. How much protein was in your urine?

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