Next step after Sulfasalazine?

[Jonsey88]

I've been on Sulfasalazine for around 12 years now and have been at the max dose for at least 7 of those years. I'm currently in a flare up (due to a colonoscopy) and am on Prednisone (40 mg tapering down every 5-7 days). I am interested in what type of drugs would be smart to mention to my doctor next. I am potentially interested in Remicade. But i'd have to look into the costs, etc.

My Short rundown:

Diagnosed at 9 years old. Thought I had Crohn's. Rediagnosed with mild/moderate Colitis throughout my entire colon.

Meds I have been put on:
Pentasa
Salofaulk
Cipro
Imuran/Azathiorpine (became nauscions and had headaches so I stopped this)
Prednisone (3 times during 3 different flare ups).
3000 MG twice daily of Sulfasalazine - The one I am currently on but feel it is doing nothing.

I'd love to hear about some treatments you are using with your mild/moderate Ulcerative Colitis. I have not had surgery (thankfully) and am sure it is not as bad as some of you have it out there. I can't remember a day in the last decade where I was ever symptom free for a day.

Also, I constantly get anxiety whenever not around a bathroom. Does anyone else get this? I feel this is more my stress than pains in my stomach sometimes. Do any of you take anti-anxiety meds too at all? Just curious.

 

[7vNH]

Since you can get "advice" on the expensive and dangerous drug therapies easily, I won't go there.

Something that is very likely safe and certainly cheap is low dose naltrexone. The down sides are that it can take 12 weeks to start working, you might find it hard to get a traditional doctor to prescribe it, and having your name associated with this drug, which at full dose is used for opiate withdrawl symptoms, might not be good.

Since you asked about anxiety meds, well this is not one of those, but people have reported success with bupropion.

Another possibility is FMT. If this is a new term for you, it might be shocking, but the idea is sound, and there are some early papers suggesting that if someone else's gut micribiota is introduced into the UC patient, remission is achieved for various lengths of time. This procedure is offered in the US only to fight a bacterium that resists all known antibiotics, so not done for UC. But the rest of the world hasn't blocked the procedure. The down sides are you need to find a donor, and you would be on the experimental edge, which has risks.

 

[7vNH]

You have not noted if you experience distal or pan, but if distal, another idea that is lower risk and not too expensive would be mesalamine enemas to get you through flares.

 

[DJW]

Hi and welcome. If paying for meds is an issue check out the Trillium Drug Program. The link is in my signature. I got my paperwork from shoppers drug mart.

Remicade runs about $4,000 per dose.

 

[Inwe]

Even though I have Crohn's, not UC, my doctor tended to lean towards meds geared at UC because of where my Crohn's is.

I see that you live in Canada so there are lots of payment loop holes and help for paying for expensive medicine. Ask your pharmacist *they tend to know a little more than doctors) about any programs available. I live in Saskatchewan and that is what I did. In Sask, you can apply for a provincial health plan that will cover tons of drugs (based type of illness and ability to pay). They currently cover 99% of costs (and then I can submit the 1% to my insurance and they pay 80% of that!) This SAVED MY LIFE when I was on Humira and Remicade.

I would avoid anymore 5ASAs. When one fails, the others tend to as well. You can try methotrexate too but that is used more as a supplement to other drugs. You can also try Humira which is in the same class of drugs as Remicade.

Most docs will try with the biologic (remicade, humira, etc) after you fail "lower level" drugs. I had allergic reactions to Remicade and Humira didn't work.

You can also look into 3rd phase trial drugs. This is what I am on and it has CHANGED my life 100%. Drugs in the 3rd phase are extremely safe and have been tested for years. Another bonus is they're free :3 (excluding travel costs and what not)