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trentity31
03-18-2009, 08:51 AM
Hello my name is Kris and I have decided not to take steroids for my lupus. I can not take any pain meds either because they all just make me sick,sick,sick. My doctor tried them all and i just could never take any of them before i was in the bathroom. For my skin flares i try to keep out of the sun which is not easy in FLA, and use vitamin E oil on skin. Helps some but they still flare. There just seems to be another way to deal with the pain and fatigue other than steroids. I took them when i had cancer years ago and the result was not good. If any one has any suggestions for me to talk about with my Dr. please write me i am open to all options!!!

Have a Blessed Day
:yes:

mountaindreamer
03-18-2009, 07:15 PM
hi trentity,

sorry about your cancer. my daughter fought breast cancer 2 years ago, and the steroids and immunesuppressents made her extremely ill also....was a horrible time in our lives.

i am also sorry to tell you that i have not been able to find any alternative treatments. like someone posted here, "if anyone had an alternative treatment or cure, we would all know about it, use it, and feel better."

many of us use diet to help with flares....avoid beef, acidic foods, chocolate, and caffein. Many of us take omega 3, vitamin d, and calcium to help with flares. We use sunscreen and wear hats and long sleeves to avoid exposure to sun. Other than these, i am not aware of any real solutions.

so sorry about the pain med effects on you. hopefully your dr. and help you find something that works.

tasha
03-18-2009, 10:46 PM
unfortunately mountaindreamer is right. what most of us wouldn't give for something other than steroids! i would sign up first thing tomorrow morning if there was an alternative treatment...

you're damned if you do and you're damned if you don't... but chances are you're more damned if you don't...

jenniferlynn
03-20-2009, 04:05 PM
I am planning on asking my doctor about DHEA. I have heard and seen some things that look positive for lupus patients. We (my doctor and I) have a great working relationship and he is willing to try just about anything to make me feel better. I will call his office tomorrow and let you know what he says...I have already purchased mine, but I don't like to take things without letting him know.

I just finished a 3 week course of prednisone and I am trying to not take it as well!

Are you taking the plaquenil at least? That really protects your organs for you even if it doesn't make you feel better - and we all need organs :)

ssingh
03-23-2009, 09:47 AM
I have wasted lots of money on trying different things like homoepathic medicine and put me in the hospital once.

Danica01
03-24-2009, 03:27 AM
I have tried so many things from infusions and even acupuncture and I never found relief with any of them. Have you tried tramadol for the pain???? It is another pain medication but it is supposed to not be so hard on your system......just an idea. I wish I could help you right now. I bet you are just struggling trying to find something that works for you. I will continue to think about things you could try. I know someone already mentioned vitamin d but I am not sure if they mentioned magnesium.........diet is huge so you might also want to start there. hang in there and just keep talking to all of us and you will find your answers and you will be comfy again:-)

Saysusie
03-24-2009, 12:47 PM
You should know that the steroids we take for Lupus are not as aggressive a dosage as is taken for cancer patients. Also, There are many different types of steroids and they all have different effects on the body.

Steroids used for Lupus are also corticosteroids (synthetic drugs that closely resemble cortisol, a hormone that your body produces naturally). In Lupus, these steroids work by decreasing inflammation and reducing the activity of the over-active immune system. They are used to treat a variety of inflammatory diseases and conditions.

Corticosteroid medications include cortisone, prednisone and methylprednisolone. These steroids are the main treatment for certain inflammatory conditions, such as Lupus.

Steroids used for cancer help destroy some types of cancer cells and can make chemotherapy more effective. Common types of steroids that are used in cancer treatment are hydrocortisone, dexamethasone, methylprednisolone and prednisolone. Methylprednisolone and prednisolone (Prednisone) are also used for Lupus, but in much lower doses than used for Cancer. The dosage for cancer depends upon the type of cancer and the severity of the disease. However, a general idea of dosage for treatment of cancer in adults starts at about 100 mg per day as low dose; 100 mg twice/day as moderate dose; and 60 mg 4 times/day as high dose.

The dosage of steroids for Lupus comes in tablets of 1, 5, 10, and 20 milligrams (mg). It may be given as often as four times each day, or as infrequently as once every other day, or at any frequency in between. 10 mg per day or less is generally considered a low dose for treating Lupus; 11 to 40 mg daily is a moderate dose; and 41 to 100 mg daily is a high dose.

So, steroid treatment for Lupus is not nearly as aggressive as the treatment for cancer and, therefore, the side-effects are not as severe. Also, as I mentioned earlier, they are one of the main treatments that have had success for the symptoms of Lupus.

I understand your trepidation, especially sincy you've used steroids before in the treatment of cancer. But, please discuss its use thoroughly with your doctor, weigh all of your options and consider the ramifications if you do not use them. Do all of this before you make a final decision about the use of steroids in the treatment of your lupus.

Peace and Blessings
Namaste
Saysusie

Danica01
03-25-2009, 01:13 AM
Saysusie,

I love it when you answer questions! I learn so much from you and everything you know! Thank you and I just wanted to let you know that you have made a huge, positive difference in my life!!!!!!!

AyahsClan
03-25-2009, 01:37 AM
I know how you feel. I hate meds period, but have had to make the hard choices as a quality of life and life itself issue. I have found many alternative methods if I can maintain the self control needed to stay on it. Here is a list that works for me, but may not work for others. One MUST carefully research everything they eat, do and take. This helps me but may not help everyone;

Organic vegetarian diet with 75% raw foods. Any raw fruits and vegetables that look appealing. Our bodies will often tell us what it needs if we listen.

Milk Thistle tea daily. (I've taken it for years to heal liver disease)

Traditional Medicinal brand "Breath Easy" tea for pulmonary problems.

Anti-inflammatory foods on a daily/weekly basis; Wild Atlantic salmon (NOT farmed or any other type fish due to high mercury), organic blueberries, 8 glasses purified water daily (distilled is best), raw organic nuts seeds olive oil, fresh garlic, calcium & vit D 4 hours away from steroids, green tea, tofu, organic old fashioned oats - may be eaten raw with soymilk.

Avoid all sugars and fructose, fast foods, chips etc, hydrogenated oils, refined grains of any type, dairy products, fried anything.

When I follow this religiously I am at my best. My problem is I have an eating disorder that gets triggered easily when I have to focus constantly on food. One of my daily battles. I try to take nothing stronger than naprosen for pain but sometimes I have to do norco, it is a step above vicoden. My pain levels are much more manageable when I stay on my diet.

Danica01
03-25-2009, 03:15 PM
That is a very healthy diet and good for you for staying on it. you are right, if we listen to our bodies it will tell us what we need. I always walk through the fruits and vegetable isles the most at the supermarket and I will get everything that sounds good! I go home and I have fresh and healthy food to snack on!