Hello, my name is Brandon and I was just recently diagnosed with lupus on Tuesday November 21. 2006. My doctor put me on plaquenil and pretinazone, i have to take plaquenil the rest of my life as far as i know, and pretinazone for 42 days (2, 21 day perscriptions). Also i am taking calcium and a multi-vitamin and then a baby aspirin to thin my blood. Now also i would like to add that i am only 19 years old and a little freaked out about it but nothing to worry about i just would love some responses with anything that i can do to make my life more normal and not have any worries because i love being in the sun and playing sports is lupus going to effect me? and thats not all i want answers on anything anyone can tell me will be greatly appreciated.
I know this is a lot to deal with, especially when you're already making so many big changes from being a teenager to being an adult. There are a lot of members in our group who are closer to your age, and I'm sure they will have some advice about school and sports and managing a social life with lupus.
I'm afraid the sun may be an issue, and it's definitely something you need to think about. Many (but not all) lupus patients are very sensitive to the UV radiation found in sunlight. It can cause rashes and skin lesions that can leave scars, and can also trigger a flare up of your lupus symptoms. This is called photosensitivity. Many of the medications prescribed for lupus can also make you more prone to sunburn, so you have to be doubly careful. Staying out of the sun during the peak UV hours (about 10:00 a.m. to 2:00 p.m. in most parts of the world), using a high spf sunscreen religiously, and wearing a hat or cap to protect your scalp, are all important to protect you from too much exposure. Some patients are very sensitive and even a few minutes outdoors without protection may make them sick. This reaction doesn't have anything to do with sunburn, so you can't assume that a tan or being darker-complexioned will protect you - it doesn't. You can also buy special sun protective clothing, but most of it is fairly pricy. If you ski, remember that the sun reflecting off snow will intensify the UV exposure, so be super careful. As for other sports, a lot will depend on your own energy levels, and how much joint pain you have. Sports that put a lot of stress on your joints might not be a good idea, but you really need to talk about this with your doctor. A lot pf lupus patients enjoy swimming and water exercises that seem to help the joints.
I don't want to overwhelm you with too much information. But there are always people here daily to answer specific questions, or just listen if you need to vent. Welcome!
The best advise I personally can give you is to take Lupus seriously. Which I did not for the last ten years. I didn't take care of myself as my doctors told me I should. I thought I knew better. I was young with a lot of pride. There were only three things I was told I needed to do...stay out of the sun, get a lot of rest, and don't get stressed. I did none of these. I have been a single mom for the last 10 years. I only used sunscreen and didn't stay out of the sun. I let myself get tired and stressed out. I've paid dearly for it this past year.
Take really good care of yourself and respect your condition...learn to live WITH it. You will get a lot of good adivse here. I wish I had found it sooner.
Glad you could join the group. I read another post that you had left about suppliments for weight lifting. My recommendation is that you do not take anything without first discussing it with your doctor. Some suppliments can actually have adverse side affects because of your other medications. Also, if you have any kidney damage as a result of the lupus, high amounts of protein powder can cause additional stress on the kidney. Always, talk to your doctor.
Since you are already probably under stress from school, you need to make sure to get plenty of rest. I would not recommend a heavy duty weightlifting routine. Trying to bulk up stresses the body and you don't need that. I think that moderate weightlifing to help keep the muscles toned and active would be a better idea.
Also, if you haven't already, make sure to educated yourself about lupus. Do you understand all of the test (blood and urine) the doctor(s) ran and what they mean? Do you know if your heart, lungs or kidneys have been affected? Has the doctor mentioned any dietary restrictions, such as sodium or potassium? If so, stay away from fast food and talk to a nutritionist about a healthy diet.
Lupus means educating yourself and a lifestyle change. It can be tough at first (I have been craving McDonald's). But, eventually, the changes you make become a habit. There are a lot of good people on this site with great ideas and plenty of experience. I encourage you to continue to ask questions and let everyone know how you are doing.
I was diagnosed at the end of October. I was in the hospital for two weeks in November for a kidney biopsy and chemotherapy treatment. I have been staying with my parents while I recuperate. So, my mom is getting educated on what I can and cannot eat. I am on a low sodium, low potassium diet. At first, I thought, this sucks. But, I have received a lot of good recipes and food ideas and things are looking a lot better.
Hope this is helpful. Hang in there.