is it lupus? need your help

Hi there, sorry that you've needed to come find us here at the lupus forum. I have a friend who has crohns disease and she was treated with remicade and she got drug induced lupus from it. They began to treat her lupus with prednisone and methotrexate and was able to clear up the lupus.

She is currently on humira and using weekly is showing that drug induced lupus is starting again. She's in a position where she need to make choice as to do it weekly and deal with lupus and lessen her crohns. Or do the humira less often and have less or no lupus symptoms but worsening crohns. It's a very hard choice to make. Hopefully, she'll see this post and can give you some information about it.

It seems once you have one auto immune disease you can get others. I've got both RA and Lupus, plus fibro. I recently found out I have T-cell LGL Leukemia. This is a leukemia that's common in RA and auto immune disease patients.

Lupus isn't DX'd on just labs, you must have at least 4 of the 11 symptoms of the disease to get the DX and treatment. Lupus can look like a lot of other diseases and it's know as the disease of a 1,000 faces. I can say I've had lupus since I was 23 years old maybe younger, and I didn't received my DX and didn't begin treatment for 13 years after they first mentioned it to me at age 23. I was 36 years old when I found out I had this disease. It took my Doctors 13 years to say yes I have lupus. Some folks are lucky and get a DX right away and others are like me and wait for many years before getting help.

Lupus patients vary greatly from each other. Some are mild in cases and can get by w/o medications and others are very severe, (like me) and I've responded to nothing and I've tried everything but Gold injections. If you go to the lupus foundation on the web they will have the list of symptoms and like I said you must have 4 of 11 to get a DX and treatment.

Other than the labs you listed, they also look at you inflammation markers, and your complements. I would suggest, if you haven't already, start a journal that lists all symptoms that you're having. Put in the level of pain, the intensity of it, what you were doing, etc. These types of journals are very helpful to our Rheumys. Also, if possible take photos of any rashes, swollen joints, etc to show them too.

I hope this helps some, check out the lupus foundation and then feel free to come back and ask as many questions you feel you need. Hopefully, you don't have both of these awful disease, but if you do, I pray that your Doctors can get you well really fast. Take care and welcome to the lupus forum.

Hugs,
Barbara

Hi there,

I have had  Crohn's disease for 34 years.  Approximately 10 years ago, I was on Remicade infusions for it and I developed Remicade induced Lupus.  One morning I had pain in my right knuckle, and the next day it was in my left shoulder.  It seemed to jump from one side of my body to the other becoming more severe each time.  I remember I couldn't get up and down off the toilet, I couldn't lift my right arm high enough to pour water into the coffee maker.  I went to the rheumatologist and she increased my prednisone to 25 mg and added 25 mg MTX.  That was the only medication that would help with the pain.  It took about one year for my bloodwork to return to normal, and at that time I started Humira.  I have been on that for almost 6 or 7 years (I lost track), but now my ANA is positive again and I do have some joint pain in my hands, but nothing like before.

I hope you feel better soon.

Julia

 

Glad to hear that you're beginning to feel better. I'm sorry that you've been unable to use the MTX due to lung issues. It sounds like the prednisone did the trick though.

I will continue to pray that you continue to improve and feel back to yourself real soon. I'm glad that we were able to provide some help.

Please take care and come back if you have any more questions.

Hugs,
Barbara