HI. just ONE question please......

I have good days and bad days we all do and some people get remissions that can last years you just have to follow doctor's orders, not overdo, and listen to your body.

It can get better but you have an overlapping connective tissue disease that seems to be mixed connective tissue disease...like I have.  There is a specific antibody that needs to show up to formally diagnose it and that is probably why you have uctd instead.  If you have an overlapping disease it can be more complicated than just lupus alone.  Every case is unique just like lupus alone.

Same difference as far as treatment.  The key is to have early and aggressive treatment.  What controlling meds have you taken? 

My case was extreme, very complicated, and life threatening.  I was a quad (due to polymyositis, lost 40 lbs of muscle in a week) and things looked glum to start 2006.  Today I am able to downhill ski, play golf, tai chi, hike again.  In my case I lost (the cells were destroyed) a significant amount of muscle cells but 4.5+ years of PT and working out has restored part of my active life again.  Doesn't sound like you have had any muscle loss or maybe you just didn't mention it. 

by the way, I am almost 70 so you have a significant advantage in your age to recover.  If you are not satisfied with your treatment I suggest getting a second opinion...make sure it is from an experience doctor who has treated lupus and other AI diseases.

Good luck but don't despair.  It is a tough battle for most of us but I am an example of someone who has been reborn...almost literally.

Bill

Hello. I just got home from day at doctors and dealing with insurance.

Yes, they said it is Mixed connective. again today.

They had told me that the IVIG was going to get covered and today that changed. They want to start Rituaxin (sp). I don't know if anyone here has tried that?? I am going to ask the question on a new topic as well.

Bill, the medications i started Plaquneil over a month ago. (400 mg)
Evocax (stopped. started again)
Colchcine -(started on friday with relief for my chest area......finally)
IV solumedrol- (last week a total 100 mg day 5x for week, which they would push daily through an IV needle. they wanted to start a 3 days steroid pump but could not get to veins)
Amitriptylline (started again end of last week)
Lyrica- 100
Restoril - 15 mg
medrol - (around 30 mg)
Potassium (20 MEQ, which started 2 weeks ago)
Dipyridamole- (stopped)

other herbs, vitamins, etc- brahmi, 7-keto (dhea), Co Q10 (400mg), Sumenta (400 mg), Triphala,

(i think that is it)

I am wrecked. I wish my family were here for me. I feel so alone. This is the only place I talk about this now. (i know i have to accept it. they have not been there since i was 13. i was taken out of home then. i went through both spine surgeries with no family either this past 5 years)

Bella, hope you feel better soon!!! : ) !! and Yes, Lupus does suck. i have been in inhumane pain for 5 years now. non stop. and the diagnosis for me seems to keep getting worse. (this whole thing sucks)

Thank you both for responding. If you can think of anything else, that would be great.

Tomorrow is my surgery for the IV port. i am nervous. (i can't help but think there is something else going on)

I agree with redrose, once you get on the medicine that is right for you, things should improve dramatically from what you describe. I went 3 long years hardly able to walk from joint pain, couldnt lift my arms above my head to wash my hair and had to get help sitting down and getting up from the toilet my pain was so bad. Now we finally found the right medicine that treats my symptoms (pain medicine never helped) and my pan level is only at a constant 3 or 4. Sometimes it gets worse...sometimes its gets better but by golly, I will take this over the last 3 yrs of my life!

Don't give up! Sounds like they are trying to figure something out. I have not tried Rituxan. We were gonna try that and Cytoxan together but at the last minute my rhuemy didnt want to do that since there has not been a lot of trial with the two drugs used together! I would give it a shot! I have heard great things about it and I will pray you can find some relief from your pain!

Also, don't worry about asking questions. You should have been on here when I first joined!!! I know I asked so many questions but at the time...i wasnt being taken seriously by my family so I had no where else to go for support or even anyone to talk about it! So the lovely people here helped me so much! Then eventually my family figured out how serious things were and started supporting and encouraging me!

I'm in the same boat as you. I often wonder if I will ever have another good day again. I often feel so alone and there are days we are, just remember that even in that we are together. E-mail me anytime. I'm 33, and in shock that I feel so old. You are in my prayers.