Crohn's and Lupus
New to the site, new to lupus. Have had Crohn's disease for 12 years. I'm 27 and just diagnosed with lupus via positive blood test results. I have had arthritis with bad swelling in joints, loss of range of motion, pain, so swollen it feels like my skin will split, red, bruised looking. I just ache all over. It is hard to walk and move around. I also have a rash-little red, scaly bumps all over my neck, chest, torso, now on my face. My eyes itch so bad I want to claw them out. They are red and runny, feels like gritty stuff in my eyes, sometimes blurry vision b/c of it. I'm completely exhausted, which I'm used to from Crohn's. I have an aunt with lupus and my docs hope this was caused from a medication called Humira I took for Crohn's, but stopped b/c of the positive lupus tests and symptoms. Still waiting to get in to see a rheumy. I am not sure this is medication induced because I have had a lot of these symptoms for years, though I know autoimmune diseases can present with similar symptoms. Right now I'm managing with pain pills when I can't take the pain anymore or can't walk b/c of it. Anyone else have medication-induced lupus? Does it go away eventually? Quite frankly, I'm not sure I can deal with this AND crohn's.
Welcome to WHL.
Sorry to hear, that you have been dealing with Crohn's and now lupus.
My friends son has Crohn's and that alone is enough to deal with.
Did you check, if Humira is one of the meds, that causes drug induced lupus?
I don't know much about DIL, but I think, I have read somewhere, if the drug that caused the DIL, is taken away, the symptoms will go away. I could be wrong though, but someone will be here soon and have a better answer for you.
I dont have any answers for you, but there are lots of people on this site that will have answers for you. I can tell you to keep your chin up. It does get better. Have faith that they will find something to help you manage. Meanwhile, hang here with us and let us help you keep your spirits up! Welcome and I will include you in my prayers. God bless you!
Medication induced lupus is supposed to go away after the medication is completely out of your system. Unfortunately I know that a lot of auto-immune dissorders come in groups. I have ulcerative colotis, but I don't know if crohn's is auto-immune. I wish you all the luck in the world and hope that your symptoms dissapear with the medication. I hope you found a new medication that works as well for your crohn's, I know that can be a problem when you find a med that works well for one thing and you have to stop it. I think there are a lot of people here who have great advice, and I hope you enjoy the site.
Thanks all. I'm not really sure Humira was still working for me anyway-my Crohn's has been flaring since at least June, probably before, so it was prob. time to go another route. Yes, Crohn's is auto-immune. It's the "sister disease" of UC, but it affects your entire digestive tract-from your mouth to anus where UC affects only the large intestine. I had surgery to remove my colon for UC, and hopefully "cure" it, then found out after that it was actually Crohn's. I honestly won't be super surprised if I do have lupus on top of this, but I hope not!
I ended up going to Urgent Care b/c I couldn't get into a rheumy till Tue. My eyes are driving me crazy. She said it looked like pink eye, but I know it's not. I've never had pink eye in my life, I am not around kids, I am a fiendish hand-washer and I am not an eye-rubber. Plus, the drops she gave aren't helping, but she did give me a steroid shot and some prednisone which is helping arthritis tremendously. Rash is still hanging on. Hopefully the rheumy will have some answers and solutions.
Keep us posted on what you find out. As was mentioned before, these diseases often come in groups so once you have one you need to make sure the doctors are paying attention for any others.
Well, like I said, I've had some of these symptoms for years, just never to this degree. I love the sun and I used to get tan, but one year I just started getting this horribly itchy rash instead. I've also always had arthritis, but never to the point that my joints would swell, turn red and blue, and I couldn't walk or bend them. These are also all symptoms of Crohn's as it can affect your joints, skin, and eyes, but then I have all the positive lupus tests and Humira can cause, "a lupus-like syndrome". It may just take them a while to figure it out. I'm not sure how long it will take this stuff to get out of my system since I've been on a weekly dose of it for 3 years. I've been off of it about 3 weeks. An old GI I still keep in touch with basically just said, "It can be very difficult to distinguish between primary lupus and drug-induced", so I may never know.
Also, this was a totally weird thing. I just moved from Oregon to TX. A group of friends went to the Oregon coast one weekend, and it is usually NOT sunny there. One day we were there it was, so I spent a lot of time outside. I had sunscreen on my face, but nevertheless got the worst sun/windburn ever! My face was completely red aside from where my sunglasses were. I also got violently ill that night-vomitting, diarrhea, and had to go to the ER for fluids b/c I got so dehydrated. That was kind of bizarre. The sunburn and that reaction. Could have been totally unrelated, but none of the rest of our (big) group got sick or sunburnt, so who knows. I know the sun can be a big no-no with lupus, but have any of you ever had a severe reaction to it like that?
I have very bad reactions to the sun. I always have though, they tell me this is because I have always had lupus it just didn't attack me til later. When I was about 18 I spent 4 days in the naval hospital from sun poisoning and severe burns. I was only outside about an hour and a half. What you had sounds like sun poisoning. Needless to say all the precautions in the world and I don't spend much time outdoors. If I get over heated it's even worse. I have to be very careful about my body temp. Oh, about the pink-eye remember that your immune system is compromised. You may actually have pink eye, we tend to pick up a lot of little bugs most people don't get.
You may have something there. I also get very "red-faced" if I get hot. And it will stay like that for hours. I have always been seemingly over-sensitive to temperature changes like that-my body usually feels very cold, esp. at extremities to ppl. who touch me, or like I said, if I get too hot I look like a big tomato! Also, bright lights. I used to curse the sun when I was a toddler when it would get in my eyes. "Mommie, why did God make the sun?" hahaha. But, seriously, esp. at department stores, etc. Florescent lights kill me. My aunt took me to get my makeup done or something for my 16th bday and looking at the lights for just a few seconds-couldn't keep my eyes open and they just started pouring with water. I dunno, I mean, it's always been little bizarre things like that you can write off as just your own weird little nuances, but when you start to see that pattern develop over your life it makes a little more sense. I really hope this rheumy can help me tomorrow and figure some of this out.
Thanks for your responses.
Good Morning Ladies,
I am not sure if either of you have had the time to read the thread on photo sensitivity or not but I think this may answer some of your questions about the sun and UV light. If nothing else it is interesting