New Lupus Patient

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New Member

Date Joined May 2009
Total Posts : 4
   Posted 5/22/2009 1:35 PM (GMT -6)   
I was diagnosed with lupus two months ago, but I think I've had it for over a year and was not properly diagnosed.  I've had terrible headaches that start in the back of my neck.  I can't sleep on my sides because my carpal tunnel syndrome kicks in, I can't sleep on my stomach because I get a headache.  This began about 6-7 months ago.  I'm getting mouth sores now that come and go by themselves.  I have a rash on my hands (from my knuckles to my fingers) and on the bridge of my nose.  My upper arms itch like crazy.  I feel very tired and my muscles actually ache like I've been working out, but I haven't.  I went to see a Naturalpathic doctor and diagnose the Lupus.  He recommended a bunch of vitamin supplements like Omega 3, Antioxidant, SillyMarin, Kal Yeast Flakes and changed my diet to a vegetarian diet.  No meats, no chicken, just fish.  No dairy.  Now I drink Soy milk, eat rye bread, vegetables, salads, and fruits.  I also eat a lot of raisins, cranberries and nuts.  I'm feeling better, but I don't know if this is enough to combat my disease.  Please help me.  Oh, I have been to a Rheumatologist and she was ok with the supplements, she also gave me Ester C, Calcium + Vit. D, Carnitine, and CoQ10.  Am I on the right road? shakehead

Regular Member

Date Joined Oct 2007
Total Posts : 323
   Posted 5/22/2009 6:34 PM (GMT -6)   
Hello Nanes.
Welcome! I also have the rash, mine is on my face and arms, are you on any meds. plaquenil, preds. mtx. that's what a Rhumy would usually put us on. If you just started plaquenil it will take about 6 months before it starts working, then you should start feeling better. I think we are all on supplements it does help the body. As for the rash cover up as much as you can wear long sleeves, sunscreen. The Rhumy put me on amlactin, for dry skn, elidel for my rash. Hope you feel better soon! Take Care
Asthma,Lupus,H.B.P.,Dermatomyostis,Gastrparsis,Acid Reflux   
                Panic Attacks,Osteopenia,Thyroid  
  Advair,Diovan,Actonel,Prednisone on and off Eye Drops,VitaminD.     

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 5/22/2009 8:38 PM (GMT -6)   
Hi Nanes,

It's hard to know . . . what works for some, doesn't work for others. But it sounds like you have two medical professionals supporting your decision. It feels good to have at least tried the nutritional approach. "If" you do end up on some meds, you'll have the satisfaction that you've tried alternative approach.

Glad you found us. There are a bunch of really nice people on this forum.


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

Veteran Member

Date Joined Mar 2006
Total Posts : 2608
   Posted 5/23/2009 9:31 AM (GMT -6)   
Welcome Nanes,

I admire what you're doing. My best friend is a Naturopathic doctor and I get good advice from her, but I always run everything past my rheumy, just like you did.

By the way, I've heard or read that soy is not good for us lupies. You might ask your rheumy about that.

Good for you for eating well!

SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, arava, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex

Veteran Member

Date Joined Jan 2007
Total Posts : 610
   Posted 5/23/2009 11:14 AM (GMT -6)   
I agree w/Rosie. It's hard to know what works best as it can be varied between individuals. If naturopathic works well on you and can control your symptoms with good blood lab results, I guess it's worth it to try. For me, I am more confident with western meds.
DX SLE 1988; APS (Antiphospholipid Syndrome) Pred 10mg, Verapmil 40 mg bd (for migraine headaches), Cellcept 1000 mg;Omerprazole 40 mg; Warfarin; Calcium + Vitamin D 1200mg, Folic Acid 5 mg; Iron; Simvastin; Oxycontine 10mg; pregablin 150mg

New Member

Date Joined May 2009
Total Posts : 4
   Posted 5/24/2009 8:33 PM (GMT -6)   

Thank you all for responding to me.  All of this is new to me, and I feel kind of lost.  I've never been ill, or sick, just colds and that sort of thing, so, I'm not good with medicine.  I tried Plaquenil and about a week later, my rash flared up even more, It even started to spread to my cheek and my forehead, plus, I felt dizzy so my rhemy took me off it.  I was allergic to something in it.  She also prescribed Prednisone last week and I still haven't filled it.  I'm afraid of meds.  My naturalpathic doctor prescribed Maitake/crapake Extract, plus Creatine Powder with Whey, Green Tea with ECGC and Lipoic Acid for the pain in my muscles.  I bought the Maitake and I've been taking that along with all of my other supplements I mentioned.   

As for the soy, please tell me more.  I've been drinking only soy since March 2009.  My naturopathic doctor recommends it over milk.  Thanks again for responding.  I think it was a blessing from God finding you all and this forum.  GB. :-)

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