Hello from a newbie
I just came across this site and registered and just wanted to say hello.
I was diagnosed with hemolytic anemia and other blood problems in 1991 and officially with Lupus in 2000. I had things under control for a while with nutrition. Over the past few months things have been flaring up again and over the last month the you know what hit the fan. So, I'm back on Prednisone, Placquenil etc. I'm also doing nutritional stuff and would be interested in talking to anyone about that aspect of keeping the Lupus in tow.
I am a salesman. I guess I have to say that as that's how I make most of my money. I'm also an actor but that's been in check recently. The only thing you might have seen me in is a Honda commercial.
I guess I am lucky as I have an awesome wife who understands what is happening and works with me to get a handle on this. Having support is major.
I hope I can not only get more support here, but more importantly, give what support I can. This site seems to be geared toward that, trying to keep things positive.
Anyway, enough of my blabbing........Hi!
Hmmm....wonder if I've seen that honda commercial!
I too have relied on supplements and nutrituion to help me stay healthier. I have been on plaquenil for a couple years, so far have been able to avoid prednisone. Other than basic multi and B vitamins, I take
fish oil twice a day
800 vitamin D
400 vitamin E
and mixed with a bit of water in the morning -
ground flax - about 2 tablespoons
turmeric - a teaspoon
ginger - ditto
cinnamon - 1/2 teaspoon
cocoa powder - 1/2 teaspoon
Yes, that's an acquired taste, but I'm sure the turmeric plus the flax and fish oil have had a hand in reducing pain and increasing my energy. the cinnamon is for cholesterol, but helps with pain as well.
You're fortunate to have a wonderful support at home - it can make all the difference.
Welcome to the board and hope you'll be posting often!
Welcome to our forum and to our family. You are very lucky to have an understanding and supportive wife. Sometimes having someone like that can make the difference between suffering with this disease or surviving with it. Things can be so much more difficult when your loved ones are uninformed and unsupportive.
You will find everyone here to be understanding, informative and comforting.
Thanks for the welcome!
Thanks for the welcome. I am very glad that I found this site.
Yes, it does make a difference having someone in your corner. It makes a huge difference.
I really like the feel of this site. Everyone seems to care which is a very cool thing!
Better Late than Never
I registered last week but it took them a week to get me up & running so I wanted to answer you so here it is although a little late. Your situation sounded alot similar to mine.
Before I was diagnosed I had gone with several doctors and couldnít figure what was wrong with me. I decided to go to a nutritional doctor and I was doing really good for about 3 years. Then I started having problems again and my nutritional doctor had moved long distance and I went back with my regular doctors. First was the dermatologist then she referred me to see the rheumitologist until I was diagnosed with Lupus. I was under control with Prednison on and off. But when I got pregnant with my first son my lupus flared up 3 months after I had him. I was really bad I was taking strong doses of Prednison and Placquenil which didnít seem to help. Then a had a blood transfusion because my anemia was getting really bad and on top of that my kidney started to flare up so I was referred to a nephroloist who recommended the chemotherapy (cytoxan). I did it for about 6 months, that was the worst the doctor wanted me to continue for 1 Ĺ to 2 years but I couldnít handle it and I told the doctor I was feeling ok and my test were a little better.
Finally I had my lupus and kidney flare up under control for a while. Because of the side effect (gaining weight) of the Prednison I told my doctor I didnít want to be in anymore. The doctor didnít agree but I am not the type of taking medication for the rest of my life even if it was a low doses.
I was trying to do the same nutritional stuff I did before but it didnít work as well this time for me. I was sick once a month for about 2 weeks that my lupus will flare up again. I was tired at the end of the day and sleepy all the time with very low energy.
About 2 years ago. I started working with an acupuncturist that put me on Chinese Nutritional Herbs and it has made a big difference. Anytime she noticed that I was starting to get sick she would give me a combination of the nutritional herbs and I wouldnít end up getting sick. It sort of surprised me because I noticed I was getting better the next day instead of getting sick for two weeks & I wasnít missing work. Overtime my test results are getting better each time I go. I havenít had a lupus flare up for almost 3 years. The Chinese nutritional stuff really worked for me.
Thanks! I love it!
I will definitely look at that aspect. It's one nutritional avenue I hadn't really checked out yet.
My viewpoint is that the medical doctors can do what they do to keep things under control but it will be a nutritional or alternative method that will actually handle things. What you are telling me validates that. I am also reading a book by Flyod H. Chilton, Phd. called Inflammation Nation. It has some really good info on how inflammation occurs and a diet to help prevent inflammation. I haven't finished it yet but so far so goo.
I also appreciate the info on Cytoxan. I'm going for a kidney biopsy on Tuesday. The nephrologist is talking Cytoxan or Cellcept. I know I will end up on one of them and I really don't want to take the Cytoxan.