06-15-2005, 11:54 AM
Just wanted to share some info that may help. I met with a woman who has had lupus for 17 years - has been through all the standard treatments and had these suggestions for me. (spelling might not be bang on)
Indol Carbanol 3 - helps regulate hormones especially the "bad" estrogen
Omega 3-6-9 - also a hormone regulator but has a bunch of other benefits
Sterolins - Plant Sterol - also known as immune care
DHEA - She swears by it for increased energy and sex drive
Adrenal Sense (by Lorna VanDerhaag) - adrenal gland supplement
These things may be helpful if you think your lupus has a hormonal/adrenal gland problem origin. (I think mine does) I am trying these things one at a time to see if I get any relief.
Also - I am on Enbrel (RA biologics drug) have been for 6 months and my joints have been much better. Other Lupus symptoms are severe though so it doesn't seem to be controlling the whole disease, but for those of you whose main symptom is pain - Enbrel definitely helped reduce my pain (and prednisone dosage from 30 to 15mg)
hope this is helpful - try to live well . Just remember that everyone has something that they deal with either physical, mental or both.
08-10-2005, 06:48 PM
Just thought I'd offer up my two cents worth on using supplements to help ease symptoms. I checked with both my GP and Rheumatologist about using herbal, mineral and amino acids supplements to treat my lupus and RA symptoms and both gave me thumbs up on it as I am not currently on any prescription meds ( at least, until I see the nephrologist next month and have my biopsy done). Here's what I found works the best for me:
* L-Lysine 500mgx2 daily. This really does wonders in controlling fevers and general icky, flu-like feeling. I notice serious results after the first two or three days of starting it. I've also noticed that after about a week of taking it every day, I don't have as much problem with skin rashes and photosensitivity. I still can't go sunbathing :P but find that I don't get that horrible nausea and feeling like I'm going to pass out just from walking half a mile to the supermarket and back.
* Multi-vitaminx2 recommended dose daily. I have almost no apatite when I'm having a flare up, so I don't eat and this makes fatigue worse. Making sure my body isn't deprived of necessary vitamins and minerals really helps with fatigue problems. But my GP warned me that I have to take a multi that has no or very low level Potassium. It took some work, but I found a great multi supplement w/o Potassium in a health food store. But it was quite spendy. About $18 for 100 pills.
* Calcium+D 600mgx2 daily. Both my GP and Rheumatologist recommended this because the heightened risk of joint damage from my RA
* Herbal Anti-Inflamatory/COX-2 inhibitor. x4 daily. It's a mix of a bunch of herbs and natural foods including Ginger, Capsicum, Tumeric, Scullcap, Feverfew, Green Tea, Nettle, Willow bark, Rosemary, etc. This one was spendy too. About $17 for a bottle of 30 pills. The particular one I bought was by a company called Source Naturals and labeled under the name Inflama-Rest.
* Glucosamine & Chondriotin w/ MSM 1500mg x3 daily. I was a bit reluctant to start taking this because I was wary of all the hype around it, but my brother swears by it, so after getting a green light from my doctors, I decided to give it a try.
* Iron 65mgx2 daily. I'm severely anemic so Doc has me take double the daily rec dose. Its helps my fatigue and stops the weird bruises that I get when my RBC/Hb is too low.
* St. John's Wort 300mgx2 daily. I'm a firm believer in STW. I'm experienced it's positive effects to many times to be skeptical any longer. I double up the dose when I'm going through a particularly stressful time. GP warned though that it could cause IBS or related problems if you take too much.
* Melatonin 3mg when needed. I have bad problems with insomnia every few months and taking one tab a couple of hours before bedtime really helps.
* Acidophilus 10mgx1 daily. When I'm having a lupus flare, I notice that I tend to have trouble with yeast infections. Taking this has completely stopped that problem
The good thing about taking all of these supplements is that when I'm dilligent about it, I am able to control my symptoms to the point that they're hardly noticeable. And most importantly for me, I'm able to manage my pain very well without the use of NSAIDS or any sort of OTC or prescriptions pain killers (which don't manage my pain so much as they render me unconscious so that I'm unaware of being in pain :P).
The negative - I take more than 15 various pills through the course of an average day and it gets tiresome after a while. The cost of the individual supplements is an issue as well, since I can easily spend over $100 each month and they are not covered by insurance.
I wouldn't suggest that a naturopathic approach is the best thing for everyone, but it does really work well for me. :)