I went for my DRs appointment this Morning with my family Dr. I told him I didn't want to go back to that nutty Rhummy Dr. And he agreed with me. He sent me for more Xrays, (which he got back this afternoon. They saw nothing except my left thumb has OA and I have heel spurs in my left heel) and he took some blood. He said that he feels that I have Lupus and not Rheumatoid Arthritis. He told me to go back on 5 MG of MTX (was taken off MTX a few weeks ago because of high liver enzimes) , 5 MG of folic acid and also go on 250 MG of Cellcept. He also told me that I could take the celebrex as needed. He said that I could get off of the prednisone. He said that "for now we will assume" I have Lupus...Right now I'm not real sure what I feel. I do have Extreme fatigue, usually after I have run all day. I do have the swollen joints and the muscle pain. But not much else that I've heard about that is part of the disease. What are some of the things, that some of the members of this board who have Lupus, might tell a person newly diagnosed with this illness?
Thanks, Lori
Lori,
so sorry for your trouble..... my aunt has lupus and she gets that butterfly looking rash on her cheeks and nose but most of her symptoms are alot like RA. I hope you find the right meds and get some relief really soon.
Hugs
Nano - I am in the category of "maybe its RA, maybe its lupus, maybe its rhupus, maybe its mixed connective tissue disease", so I have alot of empathy for you. Advice? You will have to be your own doctor and make the best decisions for yourself because as I can tell from your post, you are already beginning to get the conflicting information.
First of all, it's hard to even figure out what is going on because you are fatigued and worn out. I was initially put on MTX, folic acid and Predisone. I was weaned off the Predisone at five months on a hard weanoff and will never take that drug again. I have since been diagnosed with osteoporosis, which can be helped along by Predisone. It took 9 months for the MTX to begin to work where I could feel it, but I know it starts working immediately. I also have "inflammation anemia", which contributes to your fatigue symptoms, but that slowly started improving after the first year of treatment. This anemia is very common, so you might want to look into it.
I have a wonderful therapist to help with the depression, which is part of the symptomology, and I finally asked for and got on a muscle relaxant and pain pills which I take as needed. I take the muscle relaxant every night for sleep as I have discovered part of the fatigue is our disease working during our sleep hours and jerking us out of deep healing sleeps. That was probably the best choice I have made in drug therapy as the lifting of my fatigue was critical.
I am now also taking minocin and suggest checking out www.roadback.org. I don't quite get why you were put back on MTX if you were taken off it because of high liver enzymes when there are other choices, like biologics out there too. Would you be willing to share some of your blood work results - like your SED/ESR, or RA factor? I do alot of research on my own on the Internet and feel very strongly that each of us are a unique snowflake in this storm of autoimmune disease.
I wish you the best of luck and getting your head wrapped around the idea that you have a disease, and have to change your complete lifestyle the first year is tough going, but it does get better once you and your doctors find the right drug combination for you. Take care and we are all pulling for you in here. Cathy
Lori, I am so sorry. I know that there is huge relief when there is a rhyme and reason to what you are feeling. Be careful to do some huge research. Kind of have a plan that you may want to follow when you go back to the GP.
Take care and get some sleep.
angytvjunkie4, Thank you for your well wishes & hugs. I sure need them now.
Cathy, I guess the first blood test I had when this whole thing started was at the end of July. My Anti Nuclear AB was 135. This is the test that concerned my family Dr. The only test I have to compare that too is one from Dec 2005, the Antinuclear AB came back negative then. And has until this year . The other one that came back positive (no values, just positive) was SSA (RO) antibody. My SED rate was 4 and the Rheumatoid Factor was 20.0. Drs office said that by Friday hopefully my blood test should be back..... I also asked Family Dr why he would want to put me back on MTX. He said he wanted to start me on much smaller dose to see how I would do. Then I'm supposed to take the Cellcept 250 MG everyday too for the Lupus.... I told him I know I have this swelling. And it seems to be getting worse. When I went in to have my physical the end of July, my right ankle had been swollen for a month by then. Then the tops of my feet swelled, and still are. Then my right hand and wrist. Now my left is swelling. And the fatigue just seems to come out of nowhere. Its a so overwhelming tired. But I don't have the butterfly rash, or the chest pain when you breath deep, I've read about in the booklet. I don't seem to be sensitive to Sun. I LOVE being outside. I spend as much time outside as I can..... I never heard about inflammation anemia. I'm going to read up on that, make sure its on my list when I go back to see the Dr, Thanks Cathy. Thanks too for the website. I'm going to do some serious studying of it. Thanks so much!!! Lori
Thanks Shelly41, I'm going to get off of here shortly and head for bed. I'm just wiped out. Tomorrow I'm going to start reading the website Cathy sent me and do some research. Then start my list of questions for my Dr.
Hi Nana,
Sorry you are going through this. I have MCTD/Lupus, Rheumatoid, Raynauds & Sjogrens.
Here are two links to find out more information. If you look at the "sticky" posts on top of the Lupus Board they have a lot of information.
Good luck!
Lupus and Mixed Connective Tissue Disorders - Index
Lupus - HealthBoards.com Message Boards
It's a long process sorting auto-immune diseases out. Or so they say... I hope you get your answers soon and feel better.
Thanks Debrakay, I will be checking out the links you and Cathy sent me today.
Thaks again,
Lori
Lori - good luck and keep researching. The blood tests you mentioned - I would read up on each one and what they mean, why they are taken, and what is abnormal/normal. I finally set up an excel spreadsheet for mine :) The swelling not getting better and spreading has to be alarming to you, especially since you are a runner, so get lots of rest, drink lots of filtered good water, and as Ellen DeGeneres says "Go back to the happy place". LOL You will find your answers, and you will build your team of good doctors. Take care Cathy