Where to go after Biologics?

[Jer]

Ok, so once you fail all the pills and step it up to the next tier and then fail and then move up to biologic's and those all fail, what's the next option?


I've run most of the meds out there since being Dx'd in 2004. Remicade was the best treatment for me, I was great for about 3 years, until it stopped being effective.

Humira was aweful, bad allergic reaction.

On Cimiza now, doesn't do any good........at least no horrible reaction though.

Doc brought up Stelara and I guess he's going to try and get that approved through my insurance.

Other than that, there are no trials open for me right now, Tysabri is out because I tested pos for the JC or whatever.

He keeps bringing up surgery, but that's not something I'm willing to do. We're doing another Colonoscopy this coming Weds, but the last one showed very substantial amount of my intestines infected, so that would be a major surgery. No dice on that, not doing it.

 

[kiny]

There are a lot of treatments outside of the realm of immunosupressants that are viable tools for crohn's disease, antibiotics and intravenous immunoglobulin are used more in Europe than in the US it seems. I think they'r eviable solutions if you have a doctor willing to do extensive testing to see if they could be of use to you, you can't give antibiotics or IV immunoglobulin before extense susceptibility and immune tests have been done, but I think they are worthwhile avenues. It's my opinion that people who don't respond to infliximab or humira anymore have more going on that just crohn's, they have often either strictures, bacterial overgrowth, mycobacteria, hormonal unbalances or severe nutritional deficiencies. I think it's worthwhile to get a doc who isn't affraid to do a lot of testing instead of testing CRP and calling it a day (frankly what most GI do).

Just my 2 cents, but currently beyond humira and infliximab there are no raods that lead anywhere unless you get a GI willing to consider other things than immunosupressants, other immunosupressants are vedoluzimab and anti-interleukin medicaiton and they are frankly extremely dangerous and experimental medication which is blocked in many countries out of safety concerns.

 

[kiny]

Doc brought up Stelara and I guess he's going to try and get that approved through my insurance.

That's one of the interleukin blockers, not to scare you or anything, but no one has a clue what this medication does, once you start directly blocking interleukin it will have a lot of effects on the body that won't be directly clear until years after the medication has been used. Many hospitals here refuse to use anti-interleukin blockers.

 

[Clash]

Several members on here use LDN. There is a subforum for LDN and other treatments like fecal transplants, stem cell transplants. I don't have any experience or in depth knowledge of any of these but they might be something to look in to.

 

[Dukeis]

How long have you been on the Cimzia? Just wondering if it has had time to work.

 

[Jer]

How long have you been on the Cimzia? Just wondering if it has had time to work.

5 months.

 

[Dukeis]

That should be enough time for that to work if it was going to I would think.

As Clash suggested people have had luck with those treatments.

 

[nogutsnoglory]

There are also promising clinical trials showing the use of drinking whipworms (through a trial not on your own)

 

[kammrm]

Hi Jer
I asked that same question not to long ago. Where do I go if Cimzia doesn't work. I just don't know. I thought it was working well, I was on it for 9 months before I had a flare.

Someone told me about low dose naltraxene, I think it was mentioned above too. I'm going to keep watch on that one.

 

[Kev]

Over 5 years living a good life thanks to 4.5 mg of LDN. Look at the info on it, compare it to your other options. Weigh the risks and the benefits. Personally, I give thanks each and every day that I heard about it here, then had a doctor willing to trial me on it back then.

I shudder to think where I'd be if it hadn't come along. If it worked for me, I see no reason why it wouldn't work for the majority of other sufferers.