New and confused
For 15 years I have been living in pain and annoying day to day complaints from head to toe, there always seems to be something wrong with me! Just before Christmas I had a Lupus diagnosis by a very rushed, running behind GP... He chucked a prescription at me and told me to look it up on the net!(Thats how it works in the Uk) So I did! CONFUSION or what!! I am scarred to go back to doctor now, because he put me on an anti malaria drugs which made me very sick. I am so scared about what he may throw at me next! STEROIDS???? I don't want to be on medication for the rest of my life. I don't want to be sick either! I have a very successful business and two new ones just starting.... What's going to happen to me? Is my life over? I don't know the truth about Lupus... Everything I read seems to say something different.
Has anyone had success with any alternative medicine, if there is a chance to do this without drugs Im there.
Im so confused!:grumpy:
Welcome to our family. I am sorry to hear that this diagnosis has cause you so much confusion and fear. I hope that you will be able to get some answers and alleviate some of you fear by coming here often.
The reason that you read something different about Lupus everywhere you go is because Lupus affects us all differently. No two persons have the same symptoms and the disease does not progress in the same way in any of us. Also, the disease itself changes within us. Lupus can be a slowly evolving disease whose symptoms come and go and/or new symptoms just appear.
One of the most frustrating things that we do to ourselves is try to find concrete answers about this disease. This search will only continue to cause you frustration and fear because there ARE NO concrete answers when it comes to Lupus. It is a very individual disease and the only thing that you can do is to try to get as much information as you can regarding the way that your Lupus is affecting YOU!
You should know, however, that some things are pretty standard. One being that Lupus is a chronic disease. This means that it is not going away and will be with you for the rest of your life. Based upon this, it is important that YOU DO take your medication. As I mentioned, the disease can progress slowly. So, if you take you medications, you may be able to prevent some symptoms from worsening and/or other symptoms from occurring at all. Here is another fact..if you do not take your medications, Lupus can be a fatal disease! I am really not trying to scare you, but I do want to impress upon you that fact that this is a disease that cannot be ignored.
Plaquenil (the anti-malarial drug) is the closest that we get to a standard first line treatment for Lupus. It is a cumulative drug and can sometimes take weeks to a month before you see the real benefits. Unfortunately, for many like you, it can cause nausea. Often, when this occurs, your doctor will lessen the dose and/or prescribe a corticosteroid. Now, please know that these steroids are nothing at all like anabolic steroids that athletes take, so there is no need to fear them for that reason. But, corticosteroids do have their own side-effects which many do not like. But, often it comes down to suffering the symptoms and/ or damage of the disease or putting up with side effects. If you are still unable to tolerate Plaquenil, there are other anit-malarial drugs that can be used or your doctor can prescribe some of the immuno-suppressant drugs. However, you might want to find a doctor who is not rushed and who will take the time to listen to you.
Having this disease DOES NOT mean that you life is over. What it does mean is that you life has changed. You now have to make accommodations for the disease so that you will not suffer flare-ups. The major part of managing Lupus is avoiding these flare-ups where your symptoms get worse, you are more tired than usual, achy, feverish and may have internal organ damage. This means that you will have to make some life-style changes like: avoiding exposure to the sun and fluorescent lights, eating a healthy diet, resting when your body is fatigued, exercising daily (non-jarring exercises), and taking your medications as prescribed.
You can have a relatively normal life with Lupus, especially if you take every effort to take care of yourself and avoid flare-ups. Please know that we are all here to help you in any way that we can. We are here to give you support, understanding, information and to let you know that you are not alone. Welcome to our family!
Peace and Blessings