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greatauntoftriplets

(175,742 posts)
Fri Sep 1, 2017, 07:54 PM Sep 2017

Can anyone tell me about Remicade?

I have a weird and extremely rare viral autoimmune disease of the skin that is affecting my right ankle. I've seen so many doctor for this that I've lost count. My current team has done a good job of shrinking the wound after nearly six months of treatment (I've been in treatment for this for 2 1/2 years, but with other doctors) that included a one week hospital stay and 6 1/2 weeks in a nursing home for infusions of the antibiotic Meropenem.

Right now, the doctors and the infusion center are getting my paperwork together and I should start treatment either next week or the week after. I've read up on Remicade, and the potential side effects. The prescribing doctor said not to worry about those, that they were unlikely. Still, I'm somewhat apprehensive.

Can someone who's had Remicade please tell me about what it's like to get these infusions? Any suggestions of what to take to the sessions, which will last about four years, including time after to make certain that I'm okay to go home?

Thanks very much!

8 replies = new reply since forum marked as read
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Can anyone tell me about Remicade? (Original Post) greatauntoftriplets Sep 2017 OP
seems like a lot of feedback posted on this site NRaleighLiberal Sep 2017 #1
Thanks. greatauntoftriplets Sep 2017 #2
Hi GAOT! hedda_foil Sep 2017 #3
Thanks very much, hedda. greatauntoftriplets Sep 2017 #4
Remicade Vanessa Rose Sep 2017 #5
I am sorry to hear that it made you so sick! greatauntoftriplets Sep 2017 #6
The best to you Vanessa Rose Sep 2017 #7
Thanks again. greatauntoftriplets Sep 2017 #8

hedda_foil

(16,375 posts)
3. Hi GAOT!
Fri Sep 1, 2017, 08:54 PM
Sep 2017

I just read the forum page recommended above plus this page which talks about wound healing with Remicade. http://www.crohnsforum.com/showthread.php?t=27872 and it's all about coins and ulcerative colitis. Take a look at the wound healing link because people are talking about whether it actually interferes with wound healing. I have barely heard of Remicade before reading this, so I'm anything but an expert, but ....

I'm so sorry to hear you've been having such a hard time with this.

greatauntoftriplets

(175,742 posts)
4. Thanks very much, hedda.
Fri Sep 1, 2017, 09:22 PM
Sep 2017

Happily, the severe pain this was giving me for a long time is now mostly gone except for an occasional twinge. After I got out of the nursing home in May, it stopped healing for a time because I was off the IV antibiotics, but using liquid antibiotics directly on the wound.

The usual treatment for this is prednisone, but I'm allergic to that.

The doctor who is ordering the Remicade is a dermatologist who used to be at Northwestern and has successfully treated this. The infectious disease specialist thinks Humira might be better, but is willing to give the Remicade a try. I'm monitored weekly.

We shall see, once the infusions start. I'll read your link right now and thanks for it.

Vanessa Rose

(14 posts)
5. Remicade
Fri Sep 1, 2017, 11:38 PM
Sep 2017

I was on remicade infusions for about eight months. My medical condition was very different from yours, so I don't know how it will work for you. It didn't work for me and the side effects were eventually life threatening to me. As you probably know, any biologic suppresses your immune system. I started experiencing extreme weight loss and severe migrating pain all over my body. I contracted a massive infection. My body was fighting it so hard that all nutrition I was eating was going toward the fight against the infection. I lost 1/6 of my body weight in six months. When I ended up in the hospital, I was severely malnourished, extremely anemic, had pneumonia, had a terrible infection in the sac surrounding my lung. And still had the raging infection. I ended up having surgery and two chest tubes. They were never able to diagnose the infection. Each doctor I saw prior to the hospitalization, told me that remicade was poison. It took me a year to get well. The remicade did not cause the infection, but it suppressed my immune system that whatever I got was able to take hold.

greatauntoftriplets

(175,742 posts)
6. I am sorry to hear that it made you so sick!
Fri Sep 1, 2017, 11:52 PM
Sep 2017

I did take CellCept (mycophenolate) for several months. It did give me a terrible upper respiratory infection. The prescribing doctor (not the one I am seeing now) took me off of it for about two months. During that time, the ankle wound became infected and it took a very strong antibiotic (the meropenem mentioned in the OP) to make that go away. At that time, I was also diagnosed with osteomyelitis, which is now gone.

As I said above, I will be closely monitored. Thanks very much for sharing your experiences.

Vanessa Rose

(14 posts)
7. The best to you
Sat Sep 2, 2017, 12:45 AM
Sep 2017

I hope the remicade works for you. Good luck. And the infusion part was easy. Took a couple of hours each time. I just took a good book to read.

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