What are the best meds for Dil and it takes off pain in joints beside prednisone

[Raquel suarez]

I have Crohns for the past 3 years is being hell. Went into septic attack 2013 due to prednisone masking diverticulitis infection.

Then had to wait to be seen April till November with a picc line too. Finally they did the surgery, they took my large intestines out along with a piece of small intestine and piece of rect one ovary and tubes. seems them is being pain all the way had ulcers in small intestine then they gave me humira (?) but my body didn't take it so now they start me on remicade. After the 2nd dose I started with terrible joint pain, the 3rd one it was worse and my GI told me to go to rheumatologist cause it was problaby arthritis. He did blood test last week to check and he just call me today to tell me I have positive lupus. He think is DIL (drug induced lupus) and he gave me prednisone last week 10 pill and they work perfect, pain is almost gone but he's going to speak to GI to get me off remi and I just had it yesterday my 4th one .

I wonder if anyone takes meds for it I dont want to take prednisone cause that it's why everything started with me, anyone out there taking meds for DIL.please let me know . Thanks

 

[Catherine]

Welcome To the forum.

By DIL do you mean drug induced lupus. It should go once the drug causing the lupus is ceased.

 

[Walt]

Welcome To the forum.

By DIL do you mean drug induced lupus. It should go once the drug causing the lupus is ceased.

With all due respect & kindness to Catherine,
in fairness I must share my view on the other side.

Remi gave me D-I-Lupus also.
"should" is a guess
for me, that guess has thus far not proven true.
Sorry if that is not what someone wants to hear.
Believe me, it is not what I want to hear.
(fingers crossed for better luck moving forward)

Speaking only for myself, from my actual real-world-experience:

There are a few common ways to look at it.
I choose to consider & weigh these few views.

-what the world-wide-web says about drug-induced-Lupus

-what doctors in general say about DIL

-what my own personal doctors, GP, GI, rhuemotologist say about my DIL

-what my blood says about my specific situation

-the physical truth being uniquely inside this body just always, no escape

I am sorry to say that as much as I love the hope & optimism in
Catherine's response to this question - that it magically disappears!
It has not disappeared for me.

Please everyone, if you can add value to this informed discussion,
we are few in number with IBD + DIL
I would love to gather more data in one place.
Share what you know, and please also share if you have experience with it.

As for me, I believe...
"argue your limitations, and you get to keep them"
and so feel reluctant to put negatives on my health out into the universe.
All positive thinking aside for a moment,
since Remicade manifested formally diagnosed drug-induced-Lupus in me,
my body has never been the same.
I would like it to be the same.
But sincerely, the drug messed-me-up bigtime, and I am not the same.

your thoughts welcome,
in peace & joy
Walt

ps
sometimes you want to be nice but need courage to be honest.
sometimes you want to be positive but need to talk real

 

[catisonthebeach]

I am on Remicade for Crohn's and in full remission. However, I now have drug induced lupus. My joint pain at one point was so severe I could not get up off my couch. Prednisone settled the joint swelling and pain but caused my sugar levels to be high, and gave me thrush. I was started on plaquenil and hope that it will control the joint swelling and pain. My gastroenterologist does not want to stop the remicade as it is the only drug that worked for my bowel and I am in full remission. In two more weeks I will be off the prednisone. Has anyone else chosen to stay on remicade despite the drug induced lupus? What drugs if any controlled the joint pain and swelling?
Cathy