Medically Induced Lupus from Remicade / Infliximab

[Luciana]

37 year old Woman with Chrohn’s Colitis.
Diagnosed at the age of 14.

This post is about Infiximab / Remicade / Lupus / Azathioprine / Imuran / Humira / Oxycontin / Arcoxia

I started infliximab / remicade in November 2017, after being hospitalised with a severe flare up of my crohns. I’ve had 3 infusions so far.
Prior to this incident i had been off medications for 8 years, (I have yearly colonoscopies and check ups, because i almost had surgery in 2005) and i like to think that i managed to control my Crohn’s Colitis with diet, exercise, meditation, probiotics, juicing, fasting etc. But after a stressful divorce last year i got severely depressed and my crohn’s came back with a vengeance.

I was amazed at how quickly and well the Infliximab / remicade was working and i was regaining my strength after many months of feeling extremely weak.
But after my last infusion a few weeks ago, my body started to ache. It was a mix between muscle pain and joint pain. It got worse and worse each day to the point that unless i take a strong pain killer (oxycontin) i can’t walk or do anything. Even my jaw bones hurt. But the pain medication sometimes makes me throw up, so i only take it if i really really have to do stuff and move around.

Turns out i have developed Medically induced Lupus!!!
It sounds terrifying. But it certainly explains the extreme pain.
The doctors say it might take months for it to pass?!

Luckily my Crohn’s seems to be in remission, after the 3 infusions that i received. But the Lupus is in full effect.

We have discussed introducing Azathioprine / Imuram. (i've taken it before, for about 3 years and it worked very well)
I know that it takes a few months for it to start working.
But the doctors say i still have infliximab / remicade in my system to keep my crohn’s in check. But of course i’m slightly worried. The doctors don’t want to put me on Humira because they say i might have a bad reaction like i did with Infiximab / remicade. And if that is the case, then i don’t want to take it either.

Today i was also given a new pain killer called Etoricoxib(Arcoxia) to take every day, it is suppose to be anti inflammatory as well, but it comes with it’s on set of side effect of course (like erythema,acute generalized exanthematous pustulosis, drug induced pretibial erythema)

I am looking for any kind of advice on what to do in my situation.
Any comfort is welcomed because i am so exhausted by this journey.

Thank you so much for reading my lengthy post. I am sorry i could not make it shorter. Thanks in advance for your advice.

Kind Regards
Luciana


P.S

I have a few questions for the community:

1/ Do you take Azathioprine / Imuran? If so, how much do you take? How is it working for you?

2/ Have you had or do you have Medically Induced Lupus?!
How have you dealt with it?

3/ Do you have to take Oxycontin or any similar opioid pain killers?
Or what to you take to manage pain?

 

[ronroush7]

I am sorry that the renovate brought in lupus. I take Imuran every dsy. My dosage is 50 mg. My disease is active right now. I am also on entyvio and lialda for the crohn's disease. I have been put on oxycontin for pain after surgery.

 

[cmack]

Welcome Luciana,

I'm really sorry to hear that you are struggling right now, I hope your condition improves quickly. I am here if you ever need to vent, or just for some support. I have had morphine, demerol and oxycodone for pain and after surgeries.


Best Regards,

Chris

 

[my little penguin]

Tagging Maya142
Just because one drug induced lupus doesn’t mean another will
Ds had allergic reactions to remicade after 8 months
But no issues at all with humira over 5 years in it

There is also cimiza /Simponi/entivyio and Stelara for Crohns
Entivyio abd Stelara are not anti tnf

 

[Maya142]

My daughter developed drug induced Lupus on Entyvio. It was awful - really miserable. She had horrible joint pain and fatigue which lasted for 3-4 months, unfortunately. But the worst of it was 2 months and after that she got better steadily.
She has been on MANY biologics and only developed drug induced Lupus on Entyvio. It is actually rare with Entyvio but common with Remicade.

But it's not common with any of the other of the biologics.

 

[Luciana]

Thank you all for your time!!

I have another question

If you were give a choice, what would you take?
Biologics or Immunosuppressants?

And why?


I have only heard of the biologics Remicade and Humira.
But i see there seems to be many others on the market too?

 

[my little penguin]

Once you hit the point where you need a biologic to control things
You typically need another one after since immunosuppressants are a lower level drug
Most use methotrexate in kids now
Not aha/6-mp since they now know these drugs increase the lymphoma risk much higher than biologics

In Ds case biologics make such a difference
Since remicade queued well
You may want humira
Entyio isn’t recommended by pediatric GI for Crohns kids
Unless they have failed all other options
Simple because it works better in UC patients

 

[Bufford]

I took Remicade and had to go off after the 3rd infusion due to lupus like side effects and a whole host of others including pounding heart beat, pain, feelings of fear, depresson and that the glue for my colostomy would not stick to my skin. It took a full year to recover back to normal.
My GI recommended trying Entivio but I declined due to my miserable experience with Remi. I have been on several treatments, AZA was probably the most effective. I take nothing except for the Salofalk enema, and take Turmeric herbal in powdered form in a glass of water on an empty stomach between breakfast and lunch. The Turmeric has been wonderful.
At my age I will not go near any of the treatments unless I get into an uncontrollable flare which has not happened in several years. It could be that the Crohn's responds slower as one ages. My take on the treatments are to use them only when absolutely needed, in my experience some were good at knocking down the flare to encourage remission.
The side effects are the body's way of telling you that the treatments are doing damage. How much damage is hard to say, because on one hand the treatment may be doing more good than harm. For others it could be doing more harm than good. The patient has to make the final decision whether to go through with treatments.
I can honestly say that I am doing much better by controlling diet, pain, and stress. Using as little medication as possible to take the load off of the liver and kidneys.

 

[ronroush7]

I took Remicade and had to go off after the 3rd infusion due to lupus like side effects and a whole host of others including pounding heart beat, pain, feelings of fear, depresson and that the glue for my colostomy would not stick to my skin. It took a full year to recover back to normal.
My GI recommended trying Entivio but I declined due to my miserable experience with Remi. I have been on several treatments, AZA was probably the most effective. I take nothing except for the Salofalk enema, and take Turmeric herbal in powdered form in a glass of water on an empty stomach between breakfast and lunch. The Turmeric has been wonderful.
At my age I will not go near any of the treatments unless I get into an uncontrollable flare which has not happened in several years. It could be that the Crohn's responds slower as one ages. My take on the treatments are to use them only when absolutely needed, in my experience some were good at knocking down the flare to encourage remission.
The side effects are the body's way of telling you that the treatments are doing damage. How much damage is hard to say, because on one hand the treatment may be doing more good than harm. For others it could be doing more harm than good. The patient has to make the final decision whether to go through with treatments.
I can honestly say that I am doing much better by controlling diet, pain, and stress. Using as little medication as possible to take the load off of the liver and kidneys.

Hope that is true about the disease slowing down as we age.

 

[Luciana]

Hello everyone!
Just a quick update.

After my last post i ended up in the hospital again for a week.
Because i woke up one day and i couldn't move at all.
Had a lot of pain in my body, but it felt different from the Lupus, and i felt an inflammation in my joints and heavy head. like something bad was about to kick off.

So i went to the hospital and they kept me there.
Said i had both Lupus and an active Crohns in my joints.

I have started Humira now.
So far 2 injections and no bad side effects!!! Feeling a little stronger everyday.
I also take 5mg Prednisone on the side.
So not sure what is doing the works. But at this point it almost doesn't matter.
Feeling better is an amazing feeling.

But the stiffness from Lupus remains. But the inflammation from Crohns has dissapeared.
I think? It's hard to know what is what anymore.

My plan is to stay on Humira till September.
And then start a CBD oil treatment to try to leave biologics behind me.
Where i live the Humira is covered by my health insurance, but the CBD is not.
So it's quite expensive and you have to do it yourself.
Maybe in some places it's the other way around?

I appreciate so much to get feed back from you guys. I'm very happy i found this place.
Makes you feel less alone.

Wish you all a beautiful day

Luciana

 

[cmack]

I wish you the best, Luciana. I hope you keep getting good results with Humira.

 

[Maya142]

My daughter took several months to recover from drug induced Lupus. About 3 months I would say. So the stiffness should go away eventually. She found the severe joint pain and fatigue also went away around the 3 month mark.