View Full Version : Hey im new.
01-22-2010, 09:28 AM
Hey im an 18 year old Male, diagnosed with SLE at 17 but have had symptoms of it for some time now. In my case it has effected my kidney and i am leaking some amount of protein. Ive also had to ride that prednisone train like alot of other SLE patients. I started on 75 mg Pred and its really affected my life, but hearing lately off the net that i may be able to get off this drug and try out a new drug like 'plaqenil' or something gives me some hope of losing the fatigue, terrible moon face, and mood swings. My beautiful girlfriend found this site and from what ive seen its really positive and chirpy considering its an illness site. So thought id give it a go.
01-22-2010, 11:06 AM
Welcome, we are all here for one another. Take it slow and Enjoy Life to the best of your ability.
01-22-2010, 09:30 PM
Are you Jessie's boyfriend? If so, she's a keeper! She obviously cares a great deal.
Welcome to WHL. Feel free to read, learn and ask questions.
01-23-2010, 01:42 AM
Yes I am Jess's boyfriend Gordon =]. She told me shes been talking to you before. Your right she definately is a keeper but im worried i will never have the energy to do things with her again. Or have my normal face..which getting off prednisone should fix ive heard?..But anyway thanks for the reply.
01-23-2010, 10:53 AM
Welcome to our family! I am glad that Jessie introduced you to us and that you decided to join.
How long have you been on 75mg of Prednisone? Has your doctor talked to you about weening off of it or reducing your dosage? Usually, our doctors will recommend some of the steroid sparing drugs so that we can reduce our Prednisone dosage or get to a lower maintenance dosage. If the maintenance dosage of prednisone is greater than 10 mg per day, some of the following steroid-sparing drugs can be added to your regimen: Low dosages of methotrexate (Rheumatrex), Imuran, Cytoxan, Cyclosporin, and Cellcept. Perhaps you can ask your doctor about the possible use of one of these drugs in order to reduce your Prednisone dosage.
Plaquenil and Prednisone are the two standard treatments in Lupus. Plaquenil is an anti-malarial drug that has anti-inflammatory properties. It can also be used as a steroid-sparing drug. However, plaquenil is a cumulative medication and can take weeks to months before significant results are seen. It is for this reason that it is generally given with Prednisone. Many have also found that Plaquenil helps to alleviate some of the debilitating fatigue.
You can work closely with your doctor to discuss your options for your treatment regime, it may take some time and several experimentations with different combinations of drugs. But, hopefully you will find a treatment regime that works for you. In the meantime, we are here to help you in any way that we can.
Peace and Blessings
01-23-2010, 11:11 AM
I know exactly how you feel. My husband is, and always has been, a very athletic man. He broke records in the Butterfly stroke on his HS swim team. Today, at 53, he bikes 6 miles each way to his classes and is working on a PHD. I've never been athletic, and I've always felt that I slow him down. However, like the old story of Jack Sprat and his wife, we've made it work. If you and Jess are willing to be patient with each other, it will work for you, too. BTW, we met when we were 17 and 18.
SaySusie is right, as usual. Work closely with your doc and ask about steroid sparing drugs. There is a fellow on WHL called ScubaGramplit who is going through the steroid taper right now. You might want to have a conversation with him.
Good luck to both of you,
01-24-2010, 05:26 AM
Thanks for the advice. Me and Jess certainly will be patient together untill we finally reach peace.
01-25-2010, 08:53 AM
WOW, jessie is wonderful....so glad you have her on your team. My lupus diagnosis and sudden "right turn in my life" resulted in my divorce. My husband did not think he could make such a drastic change in his daily activities. He was quite selfish, but also he did not understand the magnitude of the disease. Well, time went by, he realized his error, and quickly came back into my life. We did not remarry, because i am choosing to stay single, but he is here every day for me, and helps me have a few laughs along the way. I am thankful for him, and his sincere concern for my health.
Like Marla's husband, Jim is very active, goes to the gym every day, and has an incredible amount of energy. We have found a happy medium....instead of climbing mountains like we used to do, we now go for gentle walks through beautiful parks. When he goes skiing, i go with him and sit in the lodge cheering him on. It is not an easy transition, but I know you and Jessie will work through this....together, nothing is impossible.
welcome to our family.....i look forward to getting to know you and jessie.