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From Remicade to... Simponi or Humira?

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Posted 5/31/2014 2:07 PM (GMT 0)
Saw my GI doctor this week. He says that I've dealt with my awful pains long enough, and that he would recommend I try switching to Humira or Simponi if the pains are as bad as I say. He says it is possible I'm reacting to the mouse protein part of the Remicade. He has had good results with patients switching from Remicade to Humira if they were already responding to Remicade he says.

I know Humira is supposedly all human made, but how about Simponi?

Thoughts overall?
Posted 5/31/2014 2:13 PM (GMT 0)
Simponi is also a fully human (not humanized) antibody, so there are no mouse regions on it.

For people who have had success with Remicade, the switch over rate when antibodies develop is very good, so in your case, you should see similar results. Here is a study that is probably of interest for you:

http://www.ncbi.nlm.nih.gov/pubmed/20145610

Specifically: In HACA-positive patients [people with antibodies to Remicade], change to another anti-tumor necrosis factor (TNF) agent was associated with a complete or partial response in 92% of patients
Posted 5/31/2014 2:16 PM (GMT 0)
If I were you I would hold out for Vedolizumab. It has already been approved by the FDA as of May 20th and should be available for use almost any day now. It has a great safety profile (better than any other biologic) and better success rates than either Remicade, Humira, or Simponi.
Posted 5/31/2014 2:19 PM (GMT 0)
I agree with Gary actually. Save Humira and Simponi as a last resort!
Posted 5/31/2014 2:30 PM (GMT 0)
I also agree w. Gary. I would wait for Vedo.
Posted 5/31/2014 2:33 PM (GMT 0)
Vedo is so close!

Might just be your miracle :)
Posted 5/31/2014 5:58 PM (GMT 0)
I agree wait for vedo....I'm not responding to remicade so vedo is my next step.
Posted 5/31/2014 6:16 PM (GMT 0)

embersglow1 said...
Vedo is so close!

Might just be your miracle :)

could be your miracle also...
Posted 5/31/2014 6:37 PM (GMT 0)

Somedude said...

embersglow1 said...
Vedo is so close!

Might just be your miracle :)

could be your miracle also...

Subtle! : p
Posted 5/31/2014 9:55 PM (GMT 0)
kinda my thought too dude !
Posted 5/31/2014 10:14 PM (GMT 0)
personally I had great luck switching from Remi to Humira- granted, while my final end result may not be what you're looking for, Humira kept me in pretty good shape for about 2 1/2 years. Far better shape than Remicade did! It's easy, it's cheap (compared to Remi), & I had zero side effects. I don't know that much about vedolizumab, since it's not anything I need to know about anymore! But, if your insurance will cover it right off the bat, & if what everyone on here seems to think it is (miracle wonder drug), maybe try it.
Posted 6/1/2014 1:08 AM (GMT 0)
Thoreau:

Please keep us advised of what you decide and how it works for you.   I too am considering asking the doc to switch me from remicade due to the muscle and joint pain.  If you check out the entyvio site (www.entyvio.com) they give some details - like they are monthly infusions, but only 30 minutes.  They also have an assistance program already set up.  Hope this helps your pains.  A number of people on a crohns site I look at also complained about the muscle and joint pain and told of how it stopped when they quit remicade. 

Posted 6/1/2014 3:50 AM (GMT 0)
Hey everyone. Thanks!

Marauder... thank you for your reply, that was exactly the kind of answer I was looking for. The link looks like it is more towards those that have built antibodies to the drug I think from briefly looking at it. I don't have antibodies according to the test, just awful pains... :-/

The one thing about going from Remicade to Vedolizumab is that I wonder if the progression for the insurance company would need to go through the others (Cimzia, Simponi, Humira etc...) first or not. Definitely something I can find out.

Somedude had a great point for Embers... it might be a great ace in the hole for you Katie!

Even though I have these God awful pains from Remicade, the antibody test to Remicade showed no antibodies. I figure this is a great thing, meaning I'm probably a person that can maintain my lifestyle on the biologics if I find one that didn't hurt me.

Happyday... did the people that you read about on the crohns site find that another biologic worked as well, but didn't have the pains they had with Remicade? Are your pains really bad? I have found that taking two tylenol and two tramadol together an hour before I get out of bed, and six hours later, gets me through the day pretty well. I supplement with heat occasionally, too. I have an electric blanket I turn on me in the morning when I take my pills and go back to bed for an hour while they kick in. This together works great for allowing me to rise and shine as a happy camper.
Posted 6/1/2014 4:08 AM (GMT 0)

Thoreau said...
Hey everyone. Thanks!

Marauder... thank you for your reply, that was exactly the kind of answer I was looking for. The link looks like it is more towards those that have built antibodies to the drug I think from briefly looking at it. I don't have antibodies according to the test, just awful pains... :-/

The one thing about going from Remicade to Vedolizumab is that I wonder if the progression for the insurance company would need to go through the others (Cimzia, Simponi, Humira etc...) first or not. Definitely something I can find out.
.

Glad I could help!

Just wanted to clarify one thing: the fact that you havent developed antibodies is not important for the purposes of the study. The presence or absence of antibodies doesnt affect the efficacy of other biologics. The purpose of the study was to see whether switching to a new TNF antibody in people who responded to another one would be effective, and the results show it was. So, since you are responsive to Remicade, it means that you will likely be responsive to Humira as well. : )
Posted 6/1/2014 4:11 AM (GMT 0)
Okay... I get it now, thanks!! I just misunderstood it and wondered if it didn't apply. Seems I would need a more technical understanding than my brain is allowing at eleven something at night, lol.

Thank you again, sincerely.
Posted 6/1/2014 11:40 AM (GMT 0)
Having just read up on tramadol (niece was prescribed a short dose), I'd want to get off of those as soon as possible Thoreau! .. they seem to be very addictive!

I know you gotta do what you gotta do to feel well, but Remi really should not be causing such pain!

Hope you can find another solution soon and get off the pain meds and start feeling WELL again!
Posted 6/1/2014 2:46 PM (GMT 0)
Thanks Canadagal. The Tramadol isn't nearly as addictive as something like Hydrocodone. I have read up on it some and I really didn't gather that is very addictive, but I could be wrong. I don't have a very addictive personality except for striving to succeed in work and such, and have noticed that any time I didn't have pain I was able to stop the Tramadol cold turkey. This only happened once, but for a month my body was so busy fighting mono that it forgot about fighting the Remicade and I felt great without the pain meds. Then mono was gone and the pains started again! :(

I'm looking forward to trying a new med soon for UC. An other thing I've noticed is that my heart rate is significantly higher on a regular basis than it should be... which I think follows along with my body's reaction to Remi. I think it'd be very good to come off the med soon... just waiting until the timing is a bit better in terms of life if I were to flare badly.
Posted 6/2/2014 2:01 AM (GMT 0)
Thoreau The people on the crohn forum did not have any more answers than those on this forum as to what to do when remicade causes too much pain.  Some people taking humira complained of the same thing.  A number of people talked about how they had drug induced lupus.  Having read your posts, the pain I have is probably as bad as or worse than what you are experiencing.  Occassionally i will take meloxicam (mobic).  Sometimes it helps and sometimes it doesn't.  I have tried tramadol many years ago for fibromyalgia and did not like the way it made me feel wierd. 

I share your concerns and fears - remicade seems to have controlled the UC, but the side effects may be as bad as UC.  Besides the pain and fatigue, I also have constipation.  If I quit remicade, then I understand you can not go back, as it will not work.  That leaves only humira, cimzia, simponi and now possibly entyvio.  But they all seem to have potential side effects.  What I would really like to do is stop all meds.  Since I was well over 50 when diagnosed, I still wonder if I really have UC, or was it just something that got so bad because of the initial drug they gave me - Apriso.  But of course I am afraid to stop the drugs just yet. 

Sorry for rambling like this.  Its been a bad couple weeks.  Good luck with your decision making.  Will be watching for your posts.

Posted 6/2/2014 2:37 AM (GMT 0)
I wouldn't stop the drugs. That could be a very huge and uncorrectable mistake. Sometimes a treatment change is in order but if you're doing well I very strongly believe in "if it ain't broke, don't fix it". I am not a fan of biologics but I think Vedolizumab is the best thing to come around in a very long time. It seems fairly side effect free.
Posted 6/2/2014 12:24 PM (GMT 0)
I switched from Remi to Humira and it didn't help me. I started to flare badly while on it.
Posted 6/2/2014 4:02 PM (GMT 0)
You know, I've red through his thread a few times, and it's pretty interesting. Everyone says to hold off for Vedo...and I really have to almost laugh a bit, but not at everyone...at the situation.

I am on Simponi,. and it's really not doing so well for me. I jumped right over Remi and Humira to it, and I guess in a week my GI will decide whether to back track to Remi or go right to the Vedo. I just found it so interesting that all of us jumped right to Simponi because it was such a 'new' drug because it had almost zero side effects and almost zero antobody history, which trust me, it does, and we were all so happy....I feel fine 'drug wise' on it, it's just not clearing me up as fast as we would like....it's taking it darn slow time at it.

Now, there is a newer drug, Vedolizumab, and all of us are jumping at THIS chance to go and run with it...and it doesn't even have the years of profile that Remi and the other associated biologics have. I was the first one to accept Simponi because of the other biologics TNF safety profile, but this one...I am not so sure about. I'm not saying I would not take it, but there is a lot of unknowns about it that still make me worry a bit.

I just find this all interesting that we all pin our hopes on these things so fast...am I am just as guilty as the rest of you....I'd probably still do it with a lot of reading. It's just an interesting conundrum to watch is all.
Posted 6/2/2014 9:34 PM (GMT 0)
Hello Everyone,

This thread is interesting to me because my GI and I were thinking about me starting a biologic. He has mentioned simponi and remi....I thought simponi was supposedly less harsh? But now I'm hearing from you guys that thats not the case? I guess they are all pretty much the same? I hate this disease...
Posted 6/2/2014 10:37 PM (GMT 0)
I think the reason everybody is excited about it is because it's actually the first biological specifically designed for IBD....unlike the other ones that were mostly designed for RA and so are much more systemic.

Yea it kind of sucks to ion our hopes on this latest thing (and in a year we'll pin our hopes on the next latest thing). But....as time goes by for some of us this IS the last hope, and there were good results in trials for it. I'm hopeful...i have to be, because the next step for me is surgery unless this holds me until the next big thing...
Posted 6/2/2014 10:37 PM (GMT 0)
I think the reason everybody is excited about it is because it's actually the first biological specifically designed for IBD....unlike the other ones that were mostly designed for RA and so are much more systemic.

Yea it kind of sucks to ion our hopes on this latest thing (and in a year we'll pin our hopes on the next latest thing). But....as time goes by for some of us this IS the last hope, and there were good results in trials for it. I'm hopeful...i have to be, because the next step for me is surgery unless this holds me until the next big thing...
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