Remicade Reactions after 5 years???

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Dee
Regular Member


Date Joined Feb 2003
Total Posts : 120
   Posted 7/26/2009 10:48 AM (GMT -7)   
Hi All,

It has been a long time since I have been online here. Lucky for me I have not needed to post. However, I am looking to see if anyone has had a similar experience?

I was diagnosed with Crohn's in 2002 and I am 38. I have been on Remicade for almost 5 years now and have never needed pre-meds I would have a little itching and cold limb at the iv site but nothing more then that (unless I was on Steroids, then I got horrible Migraines). I have had joint and muscle pain for years and my doctors have always said it was just Crohn's induced arthritis and had me on and off steroids until I refused to take them anymore (make me REALLY loopy). Then the infusion prior to my last one, I noticed more itching in the arm at the infusion site not just at the iv site but the arm. I brushed it off as just from sitting for two long the nurses didn't seem concerned. Then with my last infusion the itching was so much worse and it traveled right up my arm like the trail of my vein. By the time I got home I noticed that the arm where the iv was located was swollen and still itching. That night I took benadryl before I went to bed. When I woke up the next morning I was in so much pain from head to toe. I took benadryl each night for about 4 nights. The swelling went down and the pain got better but did not go away completely.

I talked to both my GI and PCP and they both had the same reaction of Huh oh that does not sound good. So they both agreed that I have the Prometheus test done. Now I had this done about a year ago because of increased pain after Remi and all tests came back normal... The results of the last test showed that it could not give a positive or negative and my PCP took that as a positive test and said that my serum levels were elevated. My PCP told me Friday that he would call my GI and they would talk to decide what to do. I have a fantastic PCP and he never has a problem with telling me what course he thinks I should take and with this he would not and said he wanted to talk to my GI. I am a bit nervous as I have another infusion coming up on Aug 15th.

After all of that LOL I wanted to see if anyone has developed a reaction to Remi after long term use? I see a lot of mention of it after the first few infusion but not after long term use? I am wondering what my chances are of staying with Remi? It really has helped me maintain for such a long time and I am afraid of what will happen if I go off. I have had no need for additional meds for almost 3 years and it has been fantastic since when I was first diagnosed I was taking 15 pills a day!!! I do not want to go back to that level!!

I would appreciate any in site you may have.

Thanks,
Dee


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 7/26/2009 2:42 PM (GMT -7)   
First up, don't despair, as it may be possible to bump you over to Humira if they decide you can't take the Rem anymore.

I can't offer much personal insight on the other issues, but hope that one of the others will be along to comment shortly.

I'm sorry you're going through this.

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's


Aimee =)
Veteran Member


Date Joined Jun 2004
Total Posts : 1020
   Posted 7/26/2009 2:57 PM (GMT -7)   
Yes, I reacted after 2.5 years on it. I was doing SO GOOD on it but started to not respond as well. Like, I was starting to get symptoms, we had to bump the infusions to every 4 weeks and that didn't even go well, etc. Finally I started to react to - increased heartrate, throat swelling, face/neck flushed. It was during the infusion.

Long story short, PCP ended up admitting me to the hospital - I thought I had the flu, after six weeks of it, saw him and he wouldn't let me leave in my condition. Tests confirmed I was in a major flare. I was given Remicade again in the hospital and reacted again.

Saw a new GI in the hospital (that I see now regularly) who said I had built antibodies to the Remicade over time and thats 1) why I wasn't responding anymore and ended up in a flare and 2) why I reacted.

I went to Humira - worked wonderfully, and I don't have to sit for an infusion all day!

GI said it's very common for people to build antibodies to these types of meds after longtime use. I would meet with the GI about trying another drug. Can you tell if it's still doing it's job? Or are you having symptoms as well?

lilcrohnieUK
Regular Member


Date Joined Dec 2007
Total Posts : 414
   Posted 7/27/2009 2:42 AM (GMT -7)   
Were you on steroids when you had your other infusions you didn't react to? Maybe that could be whats making the difference? as I'm an episodic user I get a shot of steroid and antihistamine before my infusions as I'm a higher risk of reacting (I refuse actual steroid treatment because of the mental side-effects but find the one shot doesn't seem to do too much harm)

 
 


Dee
Regular Member


Date Joined Feb 2003
Total Posts : 120
   Posted 7/27/2009 5:28 AM (GMT -7)   
Thank you for your responses!

I have been doing some reading and seems that Humara and Imeran (sp?) are things that people have switched to. I have to check on the pharmaceutical of those as I did a drug trial study when I was first diagnosed (I was desperate at this time for ANYTHING to help me) and I had a reaction with the first injection. As like many people it took so long to find the right combination of meds to keep things quite. I have felt very lucky that I have found it and sad/frustrated that I might have to start all over again.

Amiee - So far my Crohn's is still relatively quite. Right now I am still able to eat ANYTHING I want which I have only been able to do on Steroids (lol non stop though). I am starting to see some early signs of changes though, I am losing more hair then usual and some bouts of D but I am still maintaining my weight.

lil crohnie - The last time I was on Steroids was about 4 years ago and when I combined the two I had horrible migraines and it heightened all of the other normal side effects. I was down for the count for at least 2 or 3 days after each infusion. However that was with regular doses of steroids. A single shot of steroids is interesting. How did they know you are at high risk for reaction? Did you have the Prometheus test or did you react before?

Thank you ivy for your kind words.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/27/2009 6:12 AM (GMT -7)   
I agree with LilCrohnie, maybe you should first try getting the steroid and Benedryl combo before you infusion and see if that helps. If not, then I think its time to look for another med, you could have developed antibiodies to it. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

lilcrohnieUK
Regular Member


Date Joined Dec 2007
Total Posts : 414
   Posted 7/27/2009 6:48 AM (GMT -7)   
I've never actually reacted (touch wood) but I only have infliximab.remicade every so often - one or two doses to calm induce remission and then I'll only have it again when I flare up so I've been for periods of 2-3 years between infusions and so that significantly increases your chances of building antibodies and reacting as opposed to having regular treatment every 8-12 weeks. its not the ideal way to be given infliximab and I doubt any doctor would prescribe it in that way now but back in the day it was how it was given here and so I've kept to that regime rather then having it regularly which in my opinion I'm happy with as I don't believe in medicating unnecessarily especially if one dose keeps me symptom free for long periods of time.
 
I really think that maybe give the remicade one more chance with the pre-meds as it can be such an amazing drug. One shot of steroid shouldn't be enough to cause many side-effects, I really hope you find a way that works for you!
 
 


Iram
Regular Member


Date Joined Jul 2003
Total Posts : 145
   Posted 7/27/2009 10:59 AM (GMT -7)   
I believe giving remicade as when needed is the UK method. In the US, once you start on these biologics, you stay on it until you develop antibodies to it. That is the method of treatment. And it is also my understanding that eventually we will develop antibodies or develop allergies, so at that time you switch out to another biologic. The other method is to go back to say remicade after a long-gap and see what happens. Now, this drug has not been around for such a long time, we haven't fully explored the long-term implications of these biologics. But, there are at least three medicines now currently available for treatment for CD, with remicade being the oldest. There is the expectation more drugs will be approved in the future with Tysabri already in the market, and Simponi has just arrived.
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