How many meds are there for crohns?

There are lots of meds. What about stelara? It's a biologic like remicade and Humira, BUT... It has a different mechanism of action. It's not a TNF- alpha blocker. Instead it blocks inflammation through Interlukeins 12 & 23. I've been on it since April and it's working pretty well for me. I failed remicade after 6 years, Humira did nothing for me but I took it for 2& 1/2 years. I took Cimzia for 2 years, can't take simponi because it makes my psoriasis flare, so now I'm on stelara. If that fails doc will try vedolizumab (?). Have you ever tried 6mp or Imuran? They are essentially the same drug but Imuran turns into 6mp in the body. They are immunosuppressants, but they work. Lots of times if you're having a hard time getting into remission the docs will prescribe them in combination with a biologic. I've taken remicade and 6mp, Cimzia and 6mp, and I'm currently on stelara and Imuran.

There's also methotrexate, a heavy duty drug, but successful in helping achieve remission.

You're not out of options. You just need a doctor who knows a little more about the drugs. Remicade has a mouse protein in it and that could be what caused your reaction. Cimzia doesn't have that and neither does any of the others (probably why you did fine on Humira). So, don't be scared to try the Cimzia. That being said, once you fail or build up a tolerance to a TNF-a blocker, you're not likely to have a remission with any of the other TNF-a blockers. It's possible, but they are all so similar that it's not common. That's why I suggested stelara because it works differently.

You could also try Tysabri. Some docs won't prescribe because years ago someone who took it got a crazy brain virus and died. Serious stuff, but.... The FDA has since reevaluated everything and deemed it safe for use.

Anyway.... I know it's frustrating, but my suggestion is to consider asking your doc about Cimzia with 6mp or Imuran OR try stelara.it really depends on how active your disease is right now.

I hope you find what med works for you! Keep pushing til you get what you need!

Stef

Entyvio (vedolizumab) would probably be the next one for you to try. You can try Cimzia but I wouldn't hold out too much hope if you have failed two other anti-TNF's (Remicade and Humira). Stelara is still in clinical trials for Crohn's and is not yet FDA-approved for it, so my guess is you'd get a lot of insurance push-back. It's possible to get things off-label, but not without a fight.

If you want to go non-biologic, the standard options are Imuran, 6-MP, or methotrexate. All of those can take several months to start working, however.

So you're not out of options yet. There are also alternative options still available to you, and maybe even enrolling in a clinical trial. I did run out of options over the last year and ended up with an ileostomy, the last thing in the world I wanted to do. And you know what? I've gotten used to it, I'm feeling great, and I don't need to "bathroom map" everywhere I go anymore!

I don't think you have exhausted all your med choices yet. I think there's vedolizumab, stellara and cimzia to try, in addition to imuran, 6mp and methotrexate. I think it is very tempting to think that this disease can be controlled with just a very strict diet because all the meds are so scary, especially when you are dealing with the side effect of one the meds.

A co-worker's husband is recovering from an emergency surgery to remove 2 feet of small bowel and dealing with a temporary stoma because he felt normal on the SCD diet that he followed strictly for 4 years for crohns. One day he was fine, next day he was in for emergency surgery.

Not trying to ruffle anyone's feathers here. Just sharing something that happened this past week that could help someone in making choices. Crohns is such an insidious and variable disease that no single thing works for everyone, and no choice is easy.

My co-worker told me they went with scd because it seemed to work and they were scared of the side effects of the big drugs. But the side effects of just trying to manage this disease with diet are also pretty scary.

I hope this post doesn't cause a cascade of diet versus drug arguments. All I wanted to point out is that the only choices you have with crohns are hard choices. All of them are perilous and scary and none are guaranteed to work for you, but most of us find a balance of diet and drugs to help us carry on.

I hope you recover from the remicade reaction soon and find your magic crohns remission cocktail soon.

PV, I agree all the choices are tough ones. What you wrote I am sure is factual. SCD is not easy, so for a person to put that much effort and then end up with surgery is really tough.
It is my opinion, that if you go the diet route, and you continue to have pill cams and colonoscopies that you know if there is damage being done. Would you agree? (Please note, I am also not trying to get into a diet vs drug fight, but rather trying to have a respectful conversation, just as PV said.)

There are three other options that if they work have little to no risk.
One is LDN, another is fecal transplant. Folks are having great success with both. The scientific research is increasing re both and the results are very good.

Additionally the doc who got a noble peace prize for being on the team that discovered that stomach ulcers can be cured with the right combination of antibiotics, believes the same about Crohn's. I forget his name but he is working with Crohn's folks in Australia.

The big drugs freak me out. So right or wrong, I would try the fecal transplant and the doc in Auz, before taking the big drugs ( I already take LDN). If they did not work then there would be no choice.

I have been getting a colonoscopy and pill cam every 2 years and so far (knock on wood) my guts have been perfectly clear.

Hope you make the right choice for you

Healing thoughts

Dave

I think it's totally legit to be scared by the drugs. Also, pred is serious biz and is about as scary as it is helpful, which is even more scary. It really does suck that some people have no choice. I wish things were different for all of us.

Agree, I would do just about anything not to have uncontrolled Crohn's including taking the big drugs, but I will try everything else first including fecal transplant.

That is interesting that pred was good for you mentally. Perhaps it might make sense to find a drug that gives you the pred boost, but is not pred.

I come from a family of shrinks. A ton of depression and other mental challenges are caused by chemical imbalances but somehow folks attach a negative stigma to needing help. I hope you find something that really works for you

Dave