I was diagnosed with systemic lupus more than 2 years ago. It was a great relief at that time because I knew something was wrong with me for years. Finally I was able to confront the disease that had been plaguing me for years. It was a rough go for the 1st year as the doctor worked to find the medicine combo i needed. Things improved after the first year however the doctor didn't do anything to educate me on lupus. I just started seeing another rheumatologist because I changed insurance. I have several other medical problems such as COPD, urinary retention diverticulosis and just diagnosed with lymphedema. Now I'm not so sure that Lupus is the correct diagnosis. I have tried to read as much as I can on the topic which has done little more than confuse me on the subject. So many diseases out there that the symptoms are similar to Lupus. Can someone please direct me to to quality resources to help me educate myself on the topic. I dont want to be taking unecessary medications that i may not need. I dont want to stop taking meds if Im going to go back to feeling the way I was years ago. Im now taking Prednisone, hydroxycloroquine and methotrexate for the lupus. Also i have seen there may be a reaction between Metoprolol and the hydroxycloroquine and need more info on that.View Thread
I started on 20 mg prednisone daily after 3 months went to 10 mg daily, then 3 more months went to 5 mg, down to 3 mg next month and 2 mg next month and the last month was 1 mg dose. Now im off prednisone all together. There are times when i still hurt badly but not constantly like it was to start. The prednisone does help but can do quite a bit of damage to your body over time. I have a stand by supply for the worse times but rarely use them as i don't want to shorten my life any more than it already is. Hang in there and do the best you can do, Maybe you can ask your doctor for a stand by script so you can get them when things are at there worse.View Thread
My heart go out to you! I know exactly how you are feeling. It is a rough road to say the least. I had symptoms for years before I was diagnosed. I also lost my career in 2007 which I started in 1982. I wasn't diagnosed with systemic lupus til 2011. From 2011 to early 2012 was very tough but things slowly got better as the meds were tweaked and we found the right mix. Im not saying that everything is fine now but life has become more normal for me. Most importantly you must remain positive and never give up. Then educate yourself as much as possible. This is a great place to start but its only 1 tool in the toolbox. The more tools you have the better you can do the job. Good luck and remember we are all in this together. Feel free to continue to post on this thread and get to know the people here.View Thread
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