About to start remicade after humira stopped working…need advice

[Lucille]

About to start remicade after humira stopped working…need advice

I have a very unusual case of Crohn's disease. I was diagnosed a year ago, and immediately started humira. I had two colon ruptures (one emergency surgery to remove an abscess)before I was referred to a GI doctor. My case is unusual because although my ileum is narrowed, ulcerated, and inflamed…I have none of the other symptoms that go along with typical Crohn's.

I was on humira for about a year, but still had tenderness in the lower right side, my gastro doc. performed a colonoscopy and noticed things still didn't look good. I was put on entocort steroids (3-month taper), and am due to have my first infusion in a few days. I know its risky to let this disease go untreated, but when I have such few symptoms its hard to accept using such a strong medication.

I am (and was before with humira) scared of the side effects. I opted for humira because I didn't like the idea of having so much go into your body at once…luckily I was fine on the medication (no side effects except knee pain). Now I am worried about starting remicade, my doc. said its not any more potent than humira, but I am so nervous about the short and long-term affects.
Any information about remicade would b greatly appreciated!! It helps me to learn from other peoples experiences… I am very grateful to have found this website.. Also, is it common to develop antibodies so quickly to humira, and does this mean it might happen again? Any feedback would b great thank u...

 

[Linkdead13]

It took me a few years to develop antibodies to Remicadee. I had little to no side effects to it other than the dreadfully long infusion at one day. my pharma record is much like yours in reverse I started on Remicadee and ended up on Humira so it's good to know what to expect when my body finally decides to build an immunity to humira.

 

[Lucille]

Thank you for the reply… It is comforting to know that you did not have any bad reactions to remicade. My doctor wants to put me on another medicine along with the remicade (I think that is done to lessen the chances of developing antibodies), but the idea od being on another immunsupressent at the same time is to scary. Were you just on remicade, or did you have something along with it? Also, I have been wondering: I am experiencing knee pain (I had it off on while on humira and now again siince I started Entocort steroids…does Crohn's lead to joint pain or does medicine like steroids, humira, remicade.. cause pain in your joints like the knees and lead to joint damage???

 

[Lucille]

Oh and quick question: Linkdead13, what symptoms did you have when you grew resistant to remicade? with humira I had none… it was only through colonoscopy that I discovered it is still active. And what happens if we build resistance to both? what choices r left??

 

[24601]

I think it's probably a good idea for you to be on an immunosuppressant alongside a biologic to prevent formation of antibodies - studies have shown that it is prolongs the time you an successfully treat with these meds and as some people do develop antibodies quickly it is far better than the alternative of burning through these drugs before more treatment options become available. The studies show that the main benefit comes from taking a concurrent immunomodulator for the first 6 months you are on a biologic so that might be worth asking your GI about.

After Remicade and Humira, out of the biologics there are Entyvio, Simponi and Stelara - though they may not all be suitable for you. It's important to strike the right balance between being hopeful about the new treatments that are being developed but also maximizing the opportunities we have to treat with the currently available drugs - preventing antibody formation, maximizing dosage and frequency, using drug combinations.

Other than biologics there's also anti-MAP antibiotic therapy and the Qu biologics vaccine trial may have some promise.

It sounds like you've already had some pretty serious life-threatening experiences from Crohn's, even if it's hard for you to put that label on it because you don't have classic symptoms. So as scary as the risks from these meds may seem, they are in reality very low and much much lower than the risk from emergency surgery.

 

[astarks]

Lucille: I have to say, Remicade has been a miracle drug for me. I'm usually pretty exhausted for a couple of days after the infusion, and sometimes a bit of nausea at the hospital, but I had my doctor call in a standing order for Zofran, so now I can just ask the nurses and that takes care of it pretty quickly. I take Benadryl (50 mg), Tylenol (1000 mg), and Solu-Medrol (40 mg IV push) at the hospital as pre-meds to avoid a reaction, and so far I haven't had any issues.

I also take Methotrexate injections weekly for arthritis, and that's a bit nastier as far as the side effects are concerned. However, you might be able to take Imuran or something else that's a little less powerful as a secondary drug.

I have to agree with 24601 - even if you aren't experiencing traditional effects from the Crohn's (lucky duck!), it sounds like you have a pretty severe disease and the medicine is surely better than more surgeries. Give it a try! If it's really that bad for you, there are always other medications to try.

 

[Lucille]

Thanks everybody this information is so helpful. The reason I'm reluctant to using another immunosupressant, is because I have had cancer in the past (before any treatment began for Crohn's) This is the big reason I am so scared of going on any medication that suppresses the immune system. However, all my doctors agree that leaving my Crohn's disease untreated is dangerous (because when i am not on med I had a abscess and than almost one year later I had another rupture, the time of the 2nd rupture the surgeon gave me a 50% chance my ileum would need to b removed). I hope that people can stay on a medicine like remicade for long periods of time without additional med (hopefully longer than humira) and not develop antibodies. Fingers crossed!!! Hopefully my current steroid treatment although only for a few months will help. Thank u 2 everyone for sharing… I am feeling better about my first infusion although still nervous.
About arthritis and Crohn's… do more people with this disease develop arthritis because of the med we take or the disease itself can cause it?? just curious because my joints hurt especially now while on entocort.

 

[astarks]

I've never taken Entocort, so I can't speak to that, but as for myself, I was diagnosed with arthritis at the same time as my Crohn's Dx, before I had ever taken any medication. So, mine definitely wasn't a result of meds.

According to my rheumatologist, it is pretty common for people with Crohn's to have other autoimmune issues (like autoimmune arthritis). But, that doesn't necessarily mean that your joint pain isn't being caused by the medication. I would mention it to your GI, and if necessary they could refer you to a rheumatologist to look into it further.

 

[24601]

Joint pain can be a part of Crohn's or it could be another form of arthritis. But I definitely experienced more joint pain on prednisone than from anything else so I do think joint pain as a side effect of meds is possible too. Best to get it checked out by a rheumatologist.

Hope you can find the right med combination for you and start to feel better soon! :ghug:

 

[lgpcarter]

Good advice from 24601.

Remicade was my first biologic - I started it back in 2001 or 2002 and had well over 20 infusions before I decided to go off to get pregnant. A bad choice, in hindsight, but c'est la vie. I tried to go back on a few years ago when I flared but had an infusion reaction and I don't think it was working that well anyway. I had no side effects from the infusion or otherwise. It did miracles for my fistulas and had me in remission for 10 good years.

I have since done Humira and Simponi and while I did experience some improvement, they couldn't quite get me into remission. This sort of sounds like your experience with Humira. You will sometimes know that you are developing antibodies because of a reaction to the medication at infusion (like I had with Remicade) or because you notice the effects wearing off in between doses.

You can get joint pain with Crohn's, as it can cause joint inflammation. See here for more information about other health issues with Crohn's.

 

[Lucille]

Im so glad that medications like remicade have been able to work for you for several years….Have any of you had success taking medications like remicade/humira for long periods of time without taking an immune suppressor at the same time????
And is it possible to have bad reactions to remicade when your body builds resistance to it???

 

[lgpcarter]

I started off taking Imuran with the Remicade, but dropped the Imuran after a few years. Think it was the Remicade that really worked for me, not the Imuran. I am also quite terrible about remembering the take pills, so that was part of it!

It is possible to have anaphylactic reactions to Remicade at the time of infusion, but they are quite rare. Some doctors choose to medicate with some combo of Tylenol, Benadryl and/or Methylprednisolone to lessen the chance of infusion reactions. I experienced some flushing, a little chest tightness and shortness of breath. Keep in mind, though, that I had had MANY treatments, had stopped and restated treatment a couple of times (insurance issues) and had tried to start again after 3 years off the drug.

Off all the biologics I have been on, it is the one I felt most comfortable on.