10-19-2008, 10:42 AM
My name is munish, my wife she is having lupus for the past almost 4 years. she is 25 years old. She got this thing after our daughter's birth.
Her doctor has tried all kinds of medications, but nothing is working really good on her. The doctor first stated with prednisone, plaqunil and imuran. after a while when imuran wasn't working doctor changed to cellcept.
In the meantime because of the side effects of plaqunil she got catracts in both her eyes so for that she had to get surgery on both her eyes last year, and then there is hair loss, fatigue, amenic etc.
This feburary again she had a flareup and the doctor increased her prednisone to 60mg. but this thing is reducing her bone density.
The question that i have for this forum is that should we continue with medication or should we look for a cure in some alternate medication. if yes has anyone benifitted from that.
10-19-2008, 11:07 AM
Welcome to the forum. I am sorry to hear about what has happened and is happening to your wife. I would be afraid to even try the alternative treatments as they can be dangerous big time. You have people on the net that are stating that they have a cure for Lupus by using herbs etc and it is a lie big time. My Rheumatologist seriously warned me about these sites and told me that unless he tells me that there is a cure, there is no cure etc. I feel bad that the Plaquenil messed her eyes up as that is one of the top of the line medications for Lupus. I am hoping that they can come up with better treatments and soon for Lupus. There will be others that will come on here that may have better answers then I can give you. Please keep posting ok.
10-19-2008, 11:08 AM
You have definitely come to the right place for support and advice. I'm new here myself so not really qualified to give you any advice but there will be really helpful folks along soon who will be a mine of info I'm certain.
Sending you every good wish
10-19-2008, 11:45 AM
Hello and welcome Munish,
Many of us hear are dealing with hair loss and reactions to our medications. Most of us take our medications till they no longer work then we go back to the doctor and have changes made to the amount of the medication or try a different drug.
I do not know very much about alternative natural treatments but I would suggest that if your wife wishes to try these that she tell her doctor that. She cannot mix treatments. If she's going the natural method she must make sure that her current drugs are out of her system.
Plaquenil for example can take six months to build up in the body before any benifits are seen. It takes just as long to get it out of the system.
She should ask her family doctor for a referal to someone who can guide her in natural medicines. As Kathy said there are alot of fake cures out there. She needs professional guidance.
Feel free to look around the site and ask any questions you have.
I'm sure one of other members will have more information for you on natural treatments.
In the mean time please know that you and your wife are welcome and we are glad you found us. :)
10-20-2008, 11:29 AM
Welcome...first of all thank you for researching it...your care, concern is admired.
As Kathy said...There is no cure. If there was, we all would not have met here.
I think...gosh, there just has to be something else to fix me...just has to be. Denial. I toyed with my medicine, stopped...restarted. I believe without it I would be worse, because it helped me when I felt I was already at my worse. There is always worse and there is always better.
Who is to know what is our worse or our best...the unknown keeps me taking my prescribed drugs because I know the possibilities, the mights, what may come...with better days being at the top of my possibility list.
Me, I can't advise or suggest alternative medicines such as 'herbs', 'drinks"...as the whole, the one regime to health. Some can indeed supplement, such as fish oils, B-Complex....with prescribed drugs but as SITC said, only under doctor's supervision.
For me, I dose with the prescribed drugs, fish oils, B-complex...And exercise, eat fresh, no preservatives, avoiding processed foods...fatty foods, white stuff...sugar..things that come in a colorful wrapper. I prefer fresh, clean. Not a hard line lifestyle, just one all ...healthy or not should adapt...
Being that way coincides with my beliefs about obtaining, maintaining health before being diagnosed, or before my symptoms became worse without drugs. I am not a vegan, nor a vegetarian...but I don't just eat anything and everything. And things I do eat, cooking method is important... I believe food plays an important role in managing the flares...all food groups.
Managing stress, alternatives...acupuncture, massage...saunas, spa treatments, heat and cold therapy, Epsom salt soaks....yoga, stretching, walking....
Munish, I don't think you will find the answer, a cure here, but you will find ways for your wife, your family to cope...emotional support, experience with finances, applying for disability, modifying lifestyles...love, humor....spiritual support, a place to feel safe, ways to help with obtaining remission, being understood....but a cure. I don't think so...sigh. I truly wish there was, I'd be buying it.
10-21-2008, 09:32 PM
I am so sorry to hear about the difficulties that your wife is suffering due to this disease. You've already been given good information about alternative medications; for the most part - we stay away from them! Sometimes, they can be more dangerous that the disease.
Everyone has given you excellent advise and I can only ditto what they've said. Our medications are often changed and/or dosages are changed depending upon our symptoms (an no two persons have the same symptoms in the same degree), our tolerance to the medications, and the severity of our disease.
We can discuss several medications used to treat symptoms of Lupus and/or the co-existing diseases if you like. Let us know if this would be helpful to you and we'll be happy to provide information about them for you.
We are here to help you in any way that we can. I'm glad that you found us and that you decided to join us.
Peace and Blessings