When to give up on Remicade

[aloe]

I've been on Remicade for about 7 months. Got a colonoscopy and MRI after 6 months and they showed that the Remicade hasn't been effective. The stricturing in my small intestines is about the same as it was when I started. I had one fistula when this all began. It's still there, and in the last month a second one appeared.

Throughout the last 6 months I've had several intense infections...a staph infection, an eye infection, and now a rash all over my hands.

I'm taking a month off due to the eye infection. My doctor wants to add Imuran or 6MP to the Remicade when I go back on.

I keep wondering if that will only increase the side effects. I also wonder what the chances are that would really make a difference.

My doctor wants me to try the Imuran and Remicade combo before switching to something else like Humira, but I'm discouraged by the Remicade and side effects, and am tempted to ask to switch to Humira. But I know once I stop Remicade, I can't go back if the Humira doesn't work either, so I'll probably follow her advice.

Does anyone have any thoughts on what I should do next? Thank you.

 

[McM17]

I've been on remicade since June 2013, and on its own I didn't notice a difference. When I was put on Imuran as well I noticed improvement really quickly! For me, it was worth it.

I think I was on remicade alone for five months before I added the imuran.

 

[aloe]

Wow! That's great to hear. Thanks for your post!

 

[Clash]

My son was on Remi alone for about six months but symptoms would return before the next infusion, we upped the dose, shortened the schedule and finally at about month month six we added methotrexate and that was when the symptoms resolved. But, C has never had infections as side effects nor has he had fistulas, his CD is located in his terminal ileum.

 

[Novice]

I thought it was dangerous to take the remicade and Azathioprine together..... Not trying to cause alarm but my doctor wanted me off aza asap when starting the remicade....

I hope you find something.
I'm curious what the rash on your hands look like, I had a reaction to my last infusion (days ago) I now have a very mild rash on my hands my mum thinks I'm exaggerating lol I'm not worried but I know what my skin usually looks like and this isn't it's norm!

 

[Amanda89]

I'm currently on remicade and aza together as it has a higher success rate. I think it's quite a common thing in the UK to take both together if you have moderate to severe crohns.

 

[rrhood1]

I'm on a combination of Remicade, Methotrexate and Sulfasalazine for all the symptoms. In my case they had to add others to take of all the problems. I'm in remission now.

 

[aloe]

I really appreciate everyone's responses. My husband and I are feeling much more hopeful now.

Novice, I'm trying to figure out how to post a photo of my hand. I uploaded it as an attachment, so we'll see if this works. I thought it was poison oak for months (I get that pretty often), and went on Prednizone. It went away, but kept coming back. It was in different places on my body, but now just on my hands. Now I'm using Clobetasol cream twice a day to try and knock it out, and it is looking better. This is faded compared to a few days ago when the red was more purple. They don't think it's a reaction to Remicade, but it doesn't quite fit with anything else like excema. I was told Crohn's can go into your skin, so that is a possibility (I hope not!!). They biopsied my finger (that's the band-aid), so I should know more in a couple weeks. It could also be allergies.

 

[Novice]

That def looks like a reaction to something.... I can see why u thought it was poison oak! Crohns can do all sorts of nasty stuff to any part of your body lol any time something feels off I blame crohns now hahaha!

Let me know the biopsy reaults! It def looks sore and much worse than mine, mines almost like hair follicles growing. Tiny pin pricks. Def not as sore looking as yours steroid cream is helping mine clear up! Hope something helps yours too!

 

[kel]

I hope I don't come off as an alarmist, but I feel the need to inform you of my remicade experience.

I received remicade every 4 weeks for almost 1 year. I had my levels tested after a few months and they were appropriate. I never felt like I was getting better and would get constant sinus infections and go for months with fever, fatigue etc. Also my perianal fistula only seemed to get more and more painful, whilst draining and bleeding 24/7. My GI told me I should continue taking it even though I said over and over it wasn't working. I was given antibiotics to take and ended up being on cipro and flagyl for maybe 8 months total in that year. At the start of the summer my blood pressure and heart rate were very elevated for several weeks, it did not seem to concern the doctors so I was to continue taking the antibiotics+remicade. They also wanted to increase the dose to 10 mg/kg. By june I had sepsis and spent 8 days in ICU in what was by far the most miserable state I have ever been in. They drained out a massive abscess that had formed in my pelvis. I did not consider at the time I was lucky to survive. I just wanted to go home.

Given that it is not working for you, and you are sick constantly I would consider strongly pursuing alternatives. This may involve finding a new doctor.

Best of luck.

 

[aloe]

Thanks Novice. The rash actually doesn't bother me at the moment. The Clobatesol (I think that's a steroid) cream has helped. It just looks bad. I've dealt with poison oak for so long that for me this isn't bad lately in comparison, since it's not itching or oozing. But still, I want it gone, whatever it is!! I will report back when I get the biopsy results.

Thanks for your input Kel. Yikes. That is horrible, and I will keep it in mind. I can't say my experience has been anywhere near as bad as that. My fistula, which has a seton, has continued to drain, but is not painful. The new one that just presented as an abscess was painful, but the pain is gone after the 2 weeks of Cipro and Flagyl. I don't have much faith that will get rid of it, since it didn't work for the last one, but it does seem to help temporarily with the pain at least.

I actually haven't been sick all the time, but just got a cold a few weeks ago. It lasted about the normal duration of a cold, though I've been tired since then. My energy is returning in the last few days. I caught it from my husband, and he was much sicker than me, and got a lung infection.

The staph infection was weird. Before I ever started the Remicade I had a sore spot in my inner thigh, and it felt like it was down deep. I showed the area to the doctor, and she couldn't pinpoint it as anything because nothing on the surface was visible. (I wonder if it was visible on an MRI, but never asked). After being on the Remicade for a few months, it surfaced as a boil. They treated it with antibiotics and I put hot compresses on it, and that reduced it, but once off the antibiotics the lump got big again. I had to have it drained and more antibiotics, and that resolved it. My holistic doctor/acupuncturist told me that staph can hide down deep like that for a long time, and my theory is the Remicade made it worse and brought it to the surface. But who knows? Either way, although the process to get rid of it was not fun, I'm glad it's gone at least, and I can't fully blame the Remicade because I believe it had gotten in there somehow before I started it.

I have had some positive results which might be due to the Remicade. I was also diagnosed with Endometriosis, and I've always had really bad cramps. They get better with one Ibuprofen, so the doctors have just said that's the best way to deal with it, and that my Endo must be pretty minor if that's all it takes. Ever since the Remicade I haven't had any cramps.

I also haven't had any stomach aches or diarrhea at all since starting Remicade, and seem to be able to tolerate more different kinds of foods without causing stomach distress. I was feeling very hopeful that it must be working because I've felt so much better in that way. So after a few months (but before the eye and staph infection) I was praying the colonoscopy would show good results, because I didn't want to go off the Remicade. It was just so discouraging to learn it wasn't doing what we hoped.

I certainly don't want to be getting more infections, which I was worrying might happen by adding the Imuran. And I don't like the increased risks. But I am leaning toward giving it a try now.

My doctor is the fourth one I've switched to, and was recommended by my last doctor as the best Crohn's specialist in the region. She seems very knowledgeable, and is attentive to my situation, so I don't feel ready to switch to someone else, because I don't know where else to go. I think if I insisted on switching to Humira she would okay it, but just would prefer I try a few more tweaks with the Remicade, and I can see her reasoning.

It was my choice to start with the Remicade instead of Humira. She's just following protocols that seem pretty standard to add Imuran if it's not effective enough. I think if I'd reacted to Remicade as badly as you have, she would probably have wanted to take me off it.

I get it every 8 weeks, and we haven't changed the dosage or frequency yet, so that would probably be another thing she would want to tinker with before having me go off it if the Imuran doesn't help. But I don't know.

 

[aloe]

I got the results back on my biopsy, and the diagnosis was unclear. It's a rash. They know that much! They said it's a sign of underlying inflammation, possibly from Crohn's, or they said even a sign of cancer. I don't have any other symptoms of cancer, so I'm guessing it's a byproduct or related to the Crohns. They don't think it's a side effect of Remicade.

 

[ronroush7]

I was on Remicade for a while. I was having trouble with the expense. My doctor put me on Cimzia which worked for a little while. After my resection, I went back on Remicade for a little over three years. So, I think some people can go back on it."

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[Novice]

Strange. Crohns does cause some weird things to happen. I wouldn't be surprised if that's the cause.
I've lost count the number of times I've been freaked out thinking something new and scary was guna be diagnosed and Nope is just ask down to crohns!