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Posted 10/2/2014 2:16 AM (GMT 0)
Hello. I've been thankfully in remission for a year and recently have not felt well- tired, fatigue, a little urgency, and extreme gas. My GI doc ran the antibody test for Humira and it showed my body is beginning to fight against Humira successfully. :(

Now, my GI wants me to switch to Simponi along with 6mp or Imuran. He is pretty proactive and aggressive with keeping me in remission which I like. He mentioned to me that if I take both new drugs together at the beginning that there is a better chance for my body not to fight off the new medication due to the confusion it will bring with both drugs in my system. I'm extremely not ready to do that and just start Simponi first alone and then if my body does not respond well enough to Simponi then add the other drug to it.

Does anyone have any advice or opinions on this??!! I would love to hear from fellow UC people.

Thanks!!

Ashley
Posted 10/2/2014 11:24 AM (GMT 0)
I agree with your gi, and I do this myself (notice remicade and 6mp in my signature). Generally, it is recommended that you use an immunosuppressive med such 6mp or Imuran along with anti-tnf drugs such as humira, simponi, and remicade. The reason is to make it less likely you'll develop antibodies to these medications.
Posted 10/2/2014 12:03 PM (GMT 0)
With your logic, why wouldn't you just stay on the Humira and add the immunosupressant to it now instead of switching to Simponi? You also forget the possibility that Simponi might not even work on you, whether you have antibodies or not. Just because you don't have antibodies doesn't mean it is going to work. Having said that, I also agree that in this case the GI might have the smartest plan, although there are no guarantees. This current path looks like a dead end though. What about Entyvio? It seems much more effective than either both Humira or Simponi while not having any dangerous side effects.
Posted 10/2/2014 12:24 PM (GMT 0)
Very good points. Thanks guys! I didn't even think about trying the additional drug with Humira. I'll have to check on that...

I just am really disturbed with the 6mp and Imuran side effects. I seriously can't make up my mind. One day I'm like "let's do this" and then the next day I'm like "hell no". I guess I'm just scared especially since I am starting a new job where I will be susceptible to so many viruses due to going in out and out hospitals and doctor offices all day long. I'm more stressed out about starting new meds than my new job. Thanks for the input. It is great to hear other views that actually take the medicine and can relate with me. :)

Ashley
Posted 10/2/2014 12:40 PM (GMT 0)
Curious, how are some people just on 6mp or Imuran and nothing else? Do these people just try them alone to see if it works? I guess my hesitation is putting my body on two very strong drugs without trying out just one first...
Posted 10/2/2014 1:08 PM (GMT 0)
SweetAsh, uc treatment seems to work best when multiple medications are tried simultaneously. 6mp/Imuran are much weaker drugs than humira is. So, if you are now on Humira there is no chance that 6mp/Imuran will be enough for you on their own.

SweetAsh said...
I just am really disturbed with the 6mp and Imuran side effects.

The side effects of 6mp/Imuran are really not all that different than the Humira you are currently on (e.g., increased risk of infection, a statically small risk of lymphoma 0.06%). 6mp/Imuran are used in much higher dosages for other illnesses, so be careful what you read about it. Uc dosages are far lower than for organ transplants an the side effects are therefore far less. Yes, 6mp/Imuran require regular blood monitoring at first. I did 1 week tests, then two week, then monthly, and now I am on every three month testing. The tests are necessary as 6mp/Imuran lowers your white blood cell count. White blood cells are the attack dog of your immune system and cause inflammation. If you have less white blood cells in your blood stream, then less inflammation can be caused in your large intestine (your uc). The tests are to make sure your white blood cell count doesn't fall too low. They also monitor your liver at first, and if there are any signs of trouble, they stop the 6mp/Imuran well before any damage is done.
Posted 10/2/2014 1:55 PM (GMT 0)
iPoop, thank you so much for your feedback and explaining that to me!! I have a much clearer understanding now. I hope and pray this new med regimen he is wanting to try will work since I know my med options after this are very slim. Thank you again!!!

Ashley
Posted 10/2/2014 2:21 PM (GMT 0)
I'm surprised you weren't on aza/6mp before humira though. I was under the impression that immunosuppressants were tried as monotherapy before biogics.

Don't be scared, those side effects that you've been reading about normally apply to people on much higher doses than you'll be on. Definitely not any scarier than humira.
Posted 10/2/2014 3:51 PM (GMT 0)
Thanks, Malaika! I was wondering the same thing too. :)

As of right now, I'm on Humira only and taking a crap load of daily vitamins (iron, d3, b12, c, biotin, magnesium, and the list goes on. :)
I'm on a gluten free diet and try to eat clean most of the time. :)
Posted 10/2/2014 3:58 PM (GMT 0)

SweetAsh said...
Thanks, Malaika! I was wondering the same thing too. :)

As of right now, I'm on Humira only and taking a crap load of daily vitamins (iron, d3, b12, c, biotin, magnesium, and the list goes on. :)
I'm on a gluten free diet and try to eat clean most of the time. :)

So annoying when you do everything right and it still doesn't work! Maybe you should try probiotics if you haven't already.
Posted 10/2/2014 4:17 PM (GMT 0)
Should have asked you before if you were on any other UC meds such as oral or rectal mesalamines. Did you ever try those or on any now? I'm not 100% sure that ipoop is correct in saying that if you are having trouble with Humira then Imuran or 6MP wouldn't be good enough for you by themselves anyway. That may or may not be true in all cases. The body is a very complicated thing and, in my opinion, in some cases, they could put you into remission even if biologics didn't. On top of that, apparently Humira did put you into remission, it's just that you are beginning to develop antibodies to it. So, who really knows what would have happened if you had tried Imuran or 6MP before Humira? Obviously you are at a crossroads with antibodies forming to the Humira so there is a lot to think about. You will eventually have to get off the Humira but adding oral or rectal mesalamines or both might be one part of a good plan that might help avoid going on too many dangerous drugs. Don't forget about Entyvio. It has the least side effects by far of the biologics and theoretically would not need to ad Imuran or 6MP to it.
Posted 10/2/2014 5:30 PM (GMT 0)
Many people are allergic or even non-responsive to Imuran/6mp etc (like myself) I'm on Humira all by itself due to that reason, I too have worries (what else is knew lol) about my body starting to have issues with the Humira as well and what possible route I would go if that were to happen but I guess there's really no sense in worrying about it until/unless I get to that point...gosh I just realized how hard I really make things for myself by worrying about the "what if's".
Posted 10/2/2014 5:54 PM (GMT 0)
I agree, pb4. I'm trying my best not to stress about it but I am a worry-wart. ;) I'm trying to remind myself to stay positive and optimistic with this disease! UC sucks!!
Garylouisville, I have tried the rectal mesalamines and they do not work. They actually made it worse. My body totally rejected them. I do need to start taking probiotics again. I will have to ask my GI about Entyvio. I haven't heard of it before.
Posted 10/2/2014 6:41 PM (GMT 0)
I was started on Humira as soon as I was diagnosed on June 1st. I started Humira June 27th. While I stopped losing blood after the second loading dose, there has been no change since then in any other symptoms. Tomorrow I am taking a blood draw to see how my body will metabolize Imuran, and assuming I can handle it, I will be starting that and Simponi on October 15th. My GI said if Humira was going to work, I would have seen something by now.
Posted 10/4/2014 11:16 AM (GMT 0)
Good morning guys! I have another question in reference to my UC that I hope you could shed some light on. Recently, I've been having off and on random discomfort in my left forefinger (achy pain when I bend it) and in my ankle (achy pain when I walk on it). It comes and goes. Usually, begins in the evening. It feels like inflammation..
I'm 31, so I know it is odd to get arthritis at this age, but I also know people with UC or Crohn's have a higher risk of getting arthritis. Has anyone experienced this and if so anything over the counter I could take to help?? So, odd. I feel like once I get one thing under control, something else pops up. I try not to complain because I don't want to sound like a broken record to my husband. It really sucks sometimes...
I start 6mp today or tomorrow or whenever I get the guts to take it. My next Humira shot is next week so I will continue my last dose of that before beginning Simponi. I was told it was best to take 6mp in the evening. My GI on the phone said to begin with 50mg, but on the bottle it suggests 75...I'm only 125 and not in any major flare so I think 5mg is best...

Hope everyone has a nice weekend and would love to hear back from you guys since you really know your stuff on UC!! :) Thanks!!!!


Ashley
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