Question for long-time sufferers

Is the progression of mainstream drugs:

1. 5ASAs
2. prednisone, Uceris
3. 6MP, etc.
4. Humira / Remicade

?

My GI doctor wants me to start Humira and I don't want to take it. He didn't recommend 6MP etc. I recently got it under control with 2 Uceris, 5mg prednisone, and 4 Lialda. I still had to go a lot (maybe 5 - 6x per day) but they were 80% formed. Then I ate a large cookie at the cafeteria and had a big blowout and downhill from there.

Couple days ago I drank some beer and that was a big mistake. Diarrhea all night and all day. Just now trying to get it under control again.

I know you aren't supposed to take steroids like Uceris and prednisone long term. Whenever I taper back the diarrhea returns. But I don't want to take the next step up the mainstream drug ladder - Humira.

I have done FT and will start again soon - this time 30 days or longer. My donors aren't super reliable and my schedule is bad. I am also going to get a prescription for LDN next week. Considering medical MJ but I need to fly to Oregon to get that.

Please post your thoughts - thanks!

Well all of the UC drugs are safer than long term steroid use, so your hesitation to use Humira is kind of hypocritical. Those other treatments should be considered add ons to the mainstream drugs, not used in place of. I would start on 6mp and try the MJ and FT, then maybe move to Humira/Remicade

iPoop said...
Prednisone/uceris are by far the most dangerous uc drugs, they are rescue medications for limited, temporary usage only as long-term usage causes irreversible damage such as osteoporosis, glaucoma, and type ii diabetes.

5-6 bms a day, while an improvement, still states you have severe uc inflammation. So, 6mp and/or humira seem like quite reasonable treatment suggestions.

Why are you so against them?

Btw having a single cookie or beer isn't going to send you into terrible downwards spirals. Hindsight is always perfect, 20/20 vision and we try to connect anything to the cause, when in reality those things were just coincidence.

I have read the side effects and long-term consequences of all the drugs, including 6MP, and I want to avoid putting that in my body if I can. I understand prednisone is bad too and I want to get off that. I'm on 2.5 to 5mg per day prednisone for the past few months.

I have triggers. If I look at something used for sale, like on craigslist, my system gets stimulated. If I eat rich food, my system gets stimulated. There is no doubt that eating the cookie did it. Or the cup of Starbucks I had few months ago after not drinking any for a long time - within minutes my system was stimulated and I had a big blowout, then more diarrhea the rest of the day.

I'm sure that there is a lot of inflammation because I am currently getting blood every time.

I try to keep it under control through diet (not much help, except avoiding rich triggers), supplements (haven't seen any difference) and drugs (which like everyone, I hate.)

Unfortunately drugs are a requirement for uc patients. Everyone here would prefer not to take drugs for uc, but for the majority it is a requirement regardless of our own personal preference of being natural, avoiding putting chemicals in our bodies, etc. Personal ideology and reality are often two entirely different things. I've tried many diets and supplements and they've done absolutely nothing for me.

The weighing of risk versus benefit is an important one. Many drugs have side effects. However, the benefit far outweighs the risk. The odds of bad side effects from humira are less than one percent, while the benefit is 60+ percent of patients have improvements in their uc symptoms.

Prednisone can be dangerous when taken long-term. Short, infrequent usage is fine. Prednisone can be a life saver in severe flares.