Humira? Remicade? Pentasa? What to do???

[Iggie270]

Let me start off by saying I'm not the best at staying on my medication (that's an understatement). About 18 months ago I was put on prednisone along with my imuran. I was doing good for awhile, then needed to refill my imuran and had to get my labs done before they would refill it. I was busy with work and didn't get them done so I ended up stopping the imuran. Six months ago I started flaring, got back on the imuran, but it wasn't helping. After my colonoscopy 3 weeks ago they put me on prednisone and imuran again.

The dr told me that we need to do something else though.... Humira or Remicade... in combination with the imuran. They did give me the option of trying Pentasa again (didn't work when I was on it 10 years ago, but again, remembering to take pills multiple times a day didn't go well). I'm kind of at a loss. I don't know a lot about Humira and Remicade (and really, the dr asking if I have questions?! Like I know the right things to ask!).

I'm 30 years old. One concern is whether they will stop working eventually. 5-10 years from now? There are only so many treatment options, so I don't know if I want to take this step if I don't have to. My thought is, if imuran works (it has in the past when I have stayed on it), should I just go with trying Pentasa again?

On top of the concerns about whether I should wait to try biologics, there's the cost and fear of side effects and pain. With Humimra, I cringe at the thought of a syringe, and the pen doesn't sound fun from what I've read. The dr told me it's like a mosquito bite, but that doesn't sound true, lol. With Remicade, I'm assuming there will be costs for the IV, etc from the hospital on top of the cost of the drug (I'm in the US).

My dr says I have mild/severe crohns. I don't know, I have cramps and vomiting, but honestly didn't think it was THAT bad (could just be 10 years of experience talking...lol). My last 2 colonoscopies they were unable to see as far as they wanted because I was too inflamed. Only had 1 surgery, for an external fistula about 7 years ago I think. Not sure if any of that would affect people's opinions.

Any advice? thoughts?

 

[ronroush7]

Especially if you go on some drug like Remicade or Humira you have to stay on it. If you go off of one of these drugs and try to go back there is the possibility that your body could build up antibodies. If they put you on Remicade you could check out Remistart to help with the cost.

 

[Iggie270]

So, is the possibility of developing antibodies more of an issue with going off then back on it rather than from long term use? I'm more concerned with starting on biologics for the fear of exhausting those options now. I've always been worried about what I'm going to do when I'm 40, 50 and later if I've tried everything before then.

I don't think I would have a problem staying on them, doing injections every week or 2, or infusions every couple months. I have more of a problem remembering to take pills daily, especially on weekends. I just leave some pills at my office, so weekdays usually aren't a problem.

 

[Clash]

The problem with the mindset that you want to save the med for later is that uncontrolled crohns can cause permanent damage. The goal is to reach full remission and healthy bowel with no simmering inflammation that can cause problems that could require surgery.

There are members who have been on remicade 10+years for others it may not work that ling. Same for humira, a few years to other people lasting much longer. There are a number of other biologics in the pipelines and others that have already been approved such as cimzia, entyvio, stelara.

As far as cost both remicade and humira have patient assistance programs that are not based on your income. They pay your out of pocket expenses leaving you as little as 5 dollars a month to pay. With remicade there can be charges associated with having the infusion at the hospital IV lab as opposed to the GIs IV lab if they have one. The patient assistance program, remistart, didn't cover these extra charges of having it at the hospital.

Humira pen was painful for my son, the syringe less so. And even though he is living in his own apt so I do tend to worry if he is remembering to do his shot. Whereas with remicade it wasn't an issue since the IV was at his GIs office, also no extra visits for regular bloodwork since they'd just pull it before starting the remicade infusion.

 

[Clash]

There is a risk of developing antibodies to biologics but there is a higher risk if you come off a biologic then start back. So, that's why compliancy is important.

 

[ronroush7]

Some of these injections eventually wear out but maybe you can find the right mixture to last for a while .As far as pills are concerned for your other medicines, can't you keep some at work and some at home?

 

[JackG]

Iggie, I've had Crohn's for 34 years, starting with an emergency ileostomy before most docs knew about Crohns. I was reconnected six months later. For the most part since then I've been able to control it on Pentasa and a few other things. Had several strictures 5 or 6 years ago and was moved to Humira; now three years with no trouble. My work insurance (BCBS) covers Humira, and there's prescription help so I only pay $5 a month.

Full disclosure: Humira is $4000 a month for one pen every two weeks. I am in my 60s and when I look at what Medicare covers and what the supplements pay, retiring scares me. Everybody says there's aid. Also Humira is losing their patent protection late this fall and I hear generics might be coming. But I also read where it may not be that simple...