How bad can systemic lupus get?

Hi Lupy_Fib, Welcome to the group. Right now I'm not the best person to try to answer this question because frankly I feel like crap! More from my meds than from the lupus. In rare occasions lupus can be fatal. But I wouldn't worry about that too much. In other occasions you cvan go through times with absolutely no symptoms at all. It's not unusual for people to go through what you are going through It changes all the time. Even the weather can cause changes. Or new stresses in your life. new job, no job, new baby, no baby, new love life, no love life. Well you get the idea. It's a roller coaster. I don't think any of us know what our life will be like a year from now. All we can do is try to take care of ourself as best we can. Part of that is finding a group of people you can talk to that understands what you are going through. You will find that you have come to the right place here.
I'm sorry that you are having a rough time. I hope you have good doctors that are helping you with your meds.

anyway Welcome again Glad to have ya here!
hugs
carol

I am going to get a second opinion on May 31st. My present rheumatologist is not helping me very much. He tells me to take the Ultram three times a day for pain. I do take Plaquenil for my lupus. I feel I am getting worst and he just will not try any other medications to help me. The last time I saw him I told him I was planning on getting a second opinion. He did recommend the new rheumatologist to me. If I like the new rheumatologist I will be changing rheumatologist even though I have to go out of town to this new one. In April I had to have surgery called Cartoid Endarectomy for a clogged artery in my neck.

The surgeon told me if I had not had the surgery I would have had a stroke in a very short period of time. Today I had to have minor eye lazer surgery because of blocked tear duct. On June 8th I will have surgery on the other tear duct. I just feel like I am falling a part. I am not sure if seeing a new rheumatologist will help or not but I thought at least it was worth a try. All I know is I need to getting something done and I can not continue the way I am .

Lupy_Fib

Lupy, it definitely sounds like you need to see another rheumy. Last year I was in the same situation that you are in right now. My old rheumy was treating me with plaquenil and tramadol, which at first worked very well for me. Then over time, my symptoms got worse and worse and she wasn't willing to try any other meds for me. I suffered that way for almost a year and then decided I needed to see anothe rheumy. I went to a rheumy recommended by one of the members here and he said I had suffered long enough and put me on a trial of prednisone. I got a great deal of relief from prednisone and it has made a huge difference in how I feel. Of course prednisone has lots of nasty side effects, but for me right now it's been worth it. I really hope the new rheumy can help because there should be something he/she can try to relieve some of your symptoms. Take care

Hi Lupy, and a warm welcome. I'm sorry you are in a bad flare and hope your new rheumy will prescribe meds that will help you come out of it. What do you take now? Finding the right combination of meds has been a trial and error process for me as I suspect it is for most of us.

If your lupus has not caused too many problems for you and suddenly last year it got much worse, you probably are having what we call a flare. For most of us these flares come and go, but when you're in the middle of one it is very scarey because you don't know when or if it's going to end. That's where the meds become real important.

You mention having lazer surgery to open up clogged tear ducts. Do you have sjogren's? If not, that's something you should discuss with your rheumy.

Lupy, we all feel like we're falling apart from time to time, and that's where this forum becomes so important to us. When we feel that way we come here and gripe, complain, vent, and moan about what's going on and then our friends here, who know exactly what we're going through, give us the support that we need.

I'm glad you have found a new rheumy that you like. I've been to several and have finally found a woman that has helped me. Good luck with him or her. I believe with proper treatment and rest you will get past this flare. I pray that you will.

Thanks for joining us.

Pat

Hi Lupy, Oh yes your problem finding a good doctor is nothing new. Either you can't find one when you do they move or somthing. I had a awful rheumy. and it was 4 hour round trip to see him. I've been battle for medicaid so I can have more options. but that is a whole nother story. You are right though you need answers and you deserve good health care. Keep serching. Some people have gone through a half a dozen or so before they found a decent one.

Hugs
carol

Hi Lupy,

  Welcome to the forum. I agree with the others about the rollar coaster ride of lupus. We never know what hills, dips, twist and turns are ahead of us.

  I hope you find a new rheumy soon and get on the proper treatment to help you feel better. Please keep us updated and take care. You will be in my thoughts and prayers.

                                                                    Babs