- Joined
- Jul 10, 2018
- Messages
- 1
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
Wendy
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?
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
Wendy
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?
