I have SLE and have been researching herbal and homeopathic remedies for lupus for the last year. There's not a whole lot of information out there (even less than there is for traditional, allopathic medicine), so I'm asking for your experiences. I have completely abandoned allopathic medicine (the last drug I weaned myself from was prednisone and that was stopped completely in early December). The meds weren't helping the symptoms enough to balance out the negative side-effects (like almost dying from pneumonia the first time we tried an immuno-suppressant). I live in Maine and the nearest doctors with any real experience dealing with lupus are in Boston.
Anyway, I am a vegetarian, health food freak, hippy, granola, etc. and have always trusted Mother Nature to provide what I need, so I decided that I will not treat this dis-ease differently. I do not advocate others stopping medications, I'm just sharing some other options. These natural remedies MAY be compatible with allopathic medicines (talk to your doctor), I wanted to test them out with a "clean slate" to see what the effects are.
I have not come up with the correct formulas yet, and expect it will take over a year of self-testing before I do. But, here are the statistics: less than 10% of all lupus sufferers will go into remission; of those who do attain remission, over 50% enjoy that remission for decades. Most remissions that have occured, happened using natural remedies not drugs. And, everyone who has a formula is selling it at exorbitant prices. I intend to share my research freely (like I said, I'm one of those hippy, granola, peace & love to all types). To be clear, I am not trying to find a cure, I'm trying to stimulate full remission.
So, here's what I've learned so far:
Chamomile tea: stops the formation of IL-8 (a tissue destructive hormone), can be used frequently with no known side effects, especially helpful in the evening as a sleep aid
Codonopsis tablets: decreases formation of antibodies that target DNA in healthy cells, recommended dosage 1 gm, 3x daily
Feverfew capsules: relieves inflammation and pain in joints, recommended dosage 1000 mg/day while symptomatic
Hawthorn tablets: relieves fatigue from exercise or exertion, recommended dosage 100-250 mg, 3x day
Hoelen tea: regulates immune system to stop inflammation, protects kidney tissue, recommended dosage 1.5 gm, steep in hot water for 20 minutes, 1 cup 3x day
Licorice glycyrrhizin tablets: relieves pain and inflammation, increases effectiveness of steroids (especially prednisone), should be taken with lots of potassium to combat potential liver problems, recommended dosage 200-800 mg/day (start with lowest dosage), when first beginning use for 3 days on 1 day off rotation, then slowly move to 6 weeks on followed by a 2 week break rotation to allow the liver to cleanse without reducing effectiveness, DO NOT USE DGL variety of licorice at any time, for any reason
Milk Thistle Silymarin gelcaps: cleans and protects liver (always use when taking licorice), still working on recommended dosage, there is a tribe that deals only with this herb
Stinging Nettle Root (NOT leaves) capsules: stops arthritic inflammation and pain, may prevent further tissue damage, recommended dosage 600-900 mg/day
Tripterygium tincture: retires tissue-destructor T-cells, much more potent than steroids and cyclophosphamide, still working on dosage
Astragulus: immune support, recommended dosage 500-1000 mg/day
Other helpers:
Fritillaria syrup for coughs and colds (eases symptoms of cold without flaring symptoms of lupus
Black Currant oil 500 mg 2x day (still working out the specific areas this helps)
Vitamin E is important so eat lots of nuts and seeds (better than supplements)
L-Carnitine supplements help with fatigue
Avoid all vegetables in the night shade family (tomatos, eggplant, etc.) and also avoid alfalfa at all costs. Alfalfa increases production of ANA. Being a vegetarian health food freak, this was the hardest lesson of all for me.
What I haven't found anything on is a good remedy for the butterfly and other rashes and that pesky Raynaud's (an especially miserable symptom for someone living in Maine--especially this time of year).
As you can see from the list above, I have focused a great deal of my early research on combatting fatigue since that and constantly swollen lymph nodes are my most debilitating symptoms, especially since returning to a full-time job 3 months ago. My neurologist can attest that I have an extremely high tolerance for pain, but I'm making that my next priority in research.
Before using any of the remedies I have listed here, I recommend that you 1) talk to your doctor to see if they know of any potential interactions with your current meds (and don't accept a shrug and "guess it can't hurt"--that's clear indication they have NO experience in this area and you should contact a Naturopathic doctor with these questions); 2) research the potential side effects of these remedies and any possible links they may have to any substance you are allergic to using the web, a book from your local library or health food store (most have house copies you can view), or ask me for more specific info; and 3) find a reliable vendor for the products--some guarantee potency, etc. and some of these items can be hard to find.
Sorry this is such a long post, but it's a lot of info and I tend to be long-winded. I'd love to hear opinions, experiences, etc. either here or in my other lupus tribe, LIVING! with Lupus.
A couple of helpful websites:
Free homeopathy software (be sure to choose the new 30-second model): www.abchomeopathy.com
American Association of Naturopathic Physicians: www.naturopathic.org
Anyway, I am a vegetarian, health food freak, hippy, granola, etc. and have always trusted Mother Nature to provide what I need, so I decided that I will not treat this dis-ease differently. I do not advocate others stopping medications, I'm just sharing some other options. These natural remedies MAY be compatible with allopathic medicines (talk to your doctor), I wanted to test them out with a "clean slate" to see what the effects are.
I have not come up with the correct formulas yet, and expect it will take over a year of self-testing before I do. But, here are the statistics: less than 10% of all lupus sufferers will go into remission; of those who do attain remission, over 50% enjoy that remission for decades. Most remissions that have occured, happened using natural remedies not drugs. And, everyone who has a formula is selling it at exorbitant prices. I intend to share my research freely (like I said, I'm one of those hippy, granola, peace & love to all types). To be clear, I am not trying to find a cure, I'm trying to stimulate full remission.
So, here's what I've learned so far:
Chamomile tea: stops the formation of IL-8 (a tissue destructive hormone), can be used frequently with no known side effects, especially helpful in the evening as a sleep aid
Codonopsis tablets: decreases formation of antibodies that target DNA in healthy cells, recommended dosage 1 gm, 3x daily
Feverfew capsules: relieves inflammation and pain in joints, recommended dosage 1000 mg/day while symptomatic
Hawthorn tablets: relieves fatigue from exercise or exertion, recommended dosage 100-250 mg, 3x day
Hoelen tea: regulates immune system to stop inflammation, protects kidney tissue, recommended dosage 1.5 gm, steep in hot water for 20 minutes, 1 cup 3x day
Licorice glycyrrhizin tablets: relieves pain and inflammation, increases effectiveness of steroids (especially prednisone), should be taken with lots of potassium to combat potential liver problems, recommended dosage 200-800 mg/day (start with lowest dosage), when first beginning use for 3 days on 1 day off rotation, then slowly move to 6 weeks on followed by a 2 week break rotation to allow the liver to cleanse without reducing effectiveness, DO NOT USE DGL variety of licorice at any time, for any reason
Milk Thistle Silymarin gelcaps: cleans and protects liver (always use when taking licorice), still working on recommended dosage, there is a tribe that deals only with this herb
Stinging Nettle Root (NOT leaves) capsules: stops arthritic inflammation and pain, may prevent further tissue damage, recommended dosage 600-900 mg/day
Tripterygium tincture: retires tissue-destructor T-cells, much more potent than steroids and cyclophosphamide, still working on dosage
Astragulus: immune support, recommended dosage 500-1000 mg/day
Other helpers:
Fritillaria syrup for coughs and colds (eases symptoms of cold without flaring symptoms of lupus
Black Currant oil 500 mg 2x day (still working out the specific areas this helps)
Vitamin E is important so eat lots of nuts and seeds (better than supplements)
L-Carnitine supplements help with fatigue
Avoid all vegetables in the night shade family (tomatos, eggplant, etc.) and also avoid alfalfa at all costs. Alfalfa increases production of ANA. Being a vegetarian health food freak, this was the hardest lesson of all for me.
What I haven't found anything on is a good remedy for the butterfly and other rashes and that pesky Raynaud's (an especially miserable symptom for someone living in Maine--especially this time of year).
As you can see from the list above, I have focused a great deal of my early research on combatting fatigue since that and constantly swollen lymph nodes are my most debilitating symptoms, especially since returning to a full-time job 3 months ago. My neurologist can attest that I have an extremely high tolerance for pain, but I'm making that my next priority in research.
Before using any of the remedies I have listed here, I recommend that you 1) talk to your doctor to see if they know of any potential interactions with your current meds (and don't accept a shrug and "guess it can't hurt"--that's clear indication they have NO experience in this area and you should contact a Naturopathic doctor with these questions); 2) research the potential side effects of these remedies and any possible links they may have to any substance you are allergic to using the web, a book from your local library or health food store (most have house copies you can view), or ask me for more specific info; and 3) find a reliable vendor for the products--some guarantee potency, etc. and some of these items can be hard to find.
Sorry this is such a long post, but it's a lot of info and I tend to be long-winded. I'd love to hear opinions, experiences, etc. either here or in my other lupus tribe, LIVING! with Lupus.
A couple of helpful websites:
Free homeopathy software (be sure to choose the new 30-second model): www.abchomeopathy.com
American Association of Naturopathic Physicians: www.naturopathic.org
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Maine
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