Hello everyone- I just, not even 2 weeks ago found out that I has SLE Lupus- right now they only have me on 40MG of Prednisone, 20MG of Lasix and 10MG of K-DUR, I was just curious if anyone has used,using or has heard of Lupocap? I didn't have Health Insurance before I got diagonosed- so not only do I have to pay for the 2 wk hospital stay, getting insurance is going to be impossible now b/c I've been diagonosed! I know I can't afford to keep seeing the rhuematologist that I'm seeing so that's why I was wondering about the Lupocap- its only like $90 or something for a 2 month supply I think!
The only thing that I know about Lupocap is that it is a herbal medication that claims to be a guaranteed treatment for Lupus. They have done THEIR OWN clinical study of their drug and, of course, have come up with excellent results. I could find no clinical studies done by the FDA or any other reputable medical researchers. When I did a search to find if the FDA had approved Lupocap, nothing came up!
As Lupus patients, we are warned to be extremely careful with herbal remedies. Before leaving your rheumatologist, I would suggest that you consult with him before trying the drug. In any case, be very careful and make sure that your doctors are on board with it before you use it.
Perhaps someone else will have mor and/or better information for you than I did!!
Peace and Blessings
According to the Lupocap website, the formula is based on traditional Unani (Greek) medicine, which originated in ancient Greece around 400 BCE. Traditional Unani medicine is practiced today in many Middle Eastern and Asian countries including India, Pakistan and Sri Lanka.
The website listed the ingredients, but not the exact proportions or formula. Even though the website claims that a clinical research study has been done, the results of the study are not available - the link doesn't work. And there is absolutely no reference to this product or formulation in the peer-reviewed medical literature.
Here are the ingredients, with whatever information I have about them.
Alum - is a crystallized double sulfate (also called a mineral salt). usually aluminum potassium sulfate. It is used in cooking as a pickling spice, and in herbal medicine to treat croup and other respiratory problems.
Black Salt - refers to a type of salt mined from salt mines in Central Pakistan - its chemical composition is mainly potassium and chloride. It is used in many Indian dishes just like regular salt although it tastes less salty because it doesn't contain much sodium.
Potassium Carbonate - is another mineral salt made up of inorganic potassium salts. I think its traditional use in ayurvedic medicine is to restore the alkaline balance of the body, but I am not sure.
Potassium Nitrate - is a food additive used as
a preservative and color fixer - it is often added to meats to keep them from turning brown. I am not sure what specific use it has in herbal medicine - although it is an ingredient in a Hindu remedy called Kshara parpati, often recommended for kidney stones. Potash (alum) and ammonium chloride are also ingredients in this compound.
Ammonium Chloride - is yet another mineral salt. It is an ingredient in the Hindu remedy mentioned above. It occurs naturally in volcanic areas as a residue on certain rocks, but is most often produced artificially, as a by-product of many indutrial processes. It is the active ingredient in many antiperspirants, and also used at many ski resorts to harden snow and keep it from melting. It is also used as an expectortant in some herbal cold remedies.
Piper Longum - is a spice also known as Indian long
pepper. It is used in many Indian recipes, and is also used in Ayurvedic (Hindu) medicine to treat asthma and respiratory infections.
Helmintholithus - I do not know what this is. The term Helmintholithus refers to a fossil-like mixture of sand and pulverized seashell
found on ocean beaches - I am not aware of an medicinal use.
Judiacus - again, I do not know what this ingredient is, and the company did not respond when I e-mailed them. Judiacus is a species of scorpion, so it may be a homeopathic form of scorpion venom, but I don't know.
Please remember that products such as these are
considered "dietary supplements" - THEY ARE NOT TESTED, MONITORED, APPROVED OR REGULATED by the Food and Drug Administration. It is the job of the Federal Trade Commission to monitor and regulate these products, and they are overwhelmed by the sheer number of things on the market. So these companies can get away with claiming almost anything unless they promise an outright cure. And for every legitimate product, there are a dozen scams. The Food and Drug Administration has a
series of articles on recognizing health frauds, but your own common sense is your best defense - If it sounds too good to be true, it probably is.
You should always check with your doctor before using any herbal or alternative product - there may be interactions with your current meds. In the case of Lupocap, there seems to be a high amount of potassium in the ingredients, whhich could be a problem for anyone with kidney disease or heart disease.
Since you don't have health insurance, you might be eligible to get your medications through a prescription assistance program. You can get more information at the Partnership for Prescription Assistance website. And be sure to talk to a financial counselor at the hospital - many hospitals have assistance programs for uninsured patients who meet certain income guidelines. You should also contact your state insurance department to find out your state's regulations about pre-esting conditions - some states require insurance companies to cover them. You may also be eligible for coverage through a state high-risk pool, which many states offer to patients who would otherwise be uninsurable. But these programs vary from state to state, so it's best to check with someone in your state about this.
Brain fog strikes again - in my earlier post, I meant to say the the FDA does not review or monitor dietary supplements before they are marketed to the public. Because most of the dietary supplements are technically classified as food rather than drug, the manufacturer does not have to submit products to the FDA before marketing them, nor does it have any legal obligation to provide the FDA or the consumer with the supporting evidence of the product's safety before the product is marketed. Once a product is marketed, the FDA does have limited oversight authority to investigate illegal products (products that may be unsafe or make false or misleading claims). But because the FDA has limited resources, it will rarely get involved unless there is an adverse event such as a death or serious illness. The Federal Trade Commission is responsible for regulating the advertising of dietary and nutritional supplements, including investigating fraud claims.
Many people assume that "natural" products are always safer than prescription drugs, but this is by no means true. Dozens of people died or were permanently disabled from taking ephedra, a "natural" ingredient in weight-loss drugs. And many herbal products may contain contaminants or other ingredients not listed on the label - any herbal product imported from China is suspect. So people have to be very safe and cautious, especially of a product advertised on the internet but not available in any reputable natural food store. That should definitely set the alarm bells ringing!