How do you decide which drugs to take/not take?

I've been to alot of support group meeting and spoke with may Pharm-D and doctor. Everyone has different perspective on how to decide whether to take/not take certain drugs. Some decide based on the only the present moment...other thing long term. It's different for each of us depending on our situations

I'm one who thinks of long term benefits/cost. I don't see the purpose of taking a drug that will stop working, have a 50% chance of working, and can harm you with rare blood cancers and even death as a side effect. I don't live for the moment. To me that's too radical and destructive. I want to endure good long quality of life, not just life in the here and now. I think it has to do with the way I was raised....to be responsible for my decisions and take the consequence of those decisions.

At least it's nice to have choices and I'm open minded to even surgery. Just think being med free and not having to worry about a flare again. Of course there are other thing to adjust too, but it's amazing how we can adjust to make the best out of our lives.

So how do you decide?

Where I stopped was after 6mp didn't help at all but gave me bad symptoms (incredible fatigue, dizziness in hot weather, bruising and a skin cancer that was painful to remove). My doctor previously told me that"biologicals" were next as I had run through everything else med-wise.

I was afraid of even harsher meds. I stopped 6mp without telling my doctor to see if it was doing anything positive and was correct, it was not. Since I had some Balsalazide left I went back to that but it had not been helping either previously.

By coincidence my DH forwarded me an online article that stated that many people who'd been tested for celiac and were negative could possibly be "gluten intolerant" and have digestive problems. I had been tested for gluten and lactose years before with negative results. But I was between a rock and a hard place so decided to go gluten-free and see what happened. 3 days later my bleeding stopped . That had never happened before without enemas or steroids. And it never came back.

That was the beginning of my remission for the last year and a half. I still take Balsalazide but am considering tapering off slowly after a long-awaited vacation this coming August-September.

Everyone has to make their own choices. Remicade and Humira do help some people, it's just not where I wanted to go.

Its certainly a tough and a very personal decision. I did biologics for around 2 1/2 years because I wanted to buy myself time to find something else that would work without toxicity, other than surgery. It did buy me time to try human whipworm but in the end that never panned out due to, ironically, the severity of the GI side effects (side effects I didnt get from pig whipworm eggs- but that therapy was too expensive and ineffective to be worth it for me). I seem to be benefiting somewhat from LDN now along with SCD, turemric, glutamine, and probiotics, but if I have to go back onto prednisone then I will opt for surgery- I will not touch biologics again- I do consider them poison, but I do not regret uaing them to buy time, since they can be highly effective for a limited time and/or temporarily induce remission.

I have struggled with this myself. Unfortunately, the disease is such that sometimes, you just have no choice. My bad flares get bad so quickly and I lose so much blood that within a couple of weeks tops, I am in the hospital and needing or nearing needing transfusions. They don't give me an option of IV steroids when that happens. I am trying to keep things more even keeled now through diet, stress reduction and avoiding antibiotics, but it is just hard to know what the future will hold-and the "typical" maintenance drugs have not been enough for me. My GI wanted me to try the immunosuppressants, but I got so sick so fast that I did not have time to try them, since they take months to kick in and pred isn't enough to induce remission for me in those instances. There was just no way I could continue to lose that much blood everyday waiting to see if the meds worked.

Sure, I could opt for surgery. But I am not in a place in my life where that makes sense. And yes, there are risks involved with the biologics that I have taken and am on, but there is risk to a lot of the things I do and am exposed to in my life, and this one is a calculated one that for me is worth it. Truthfully, my remissions on biologics are better than post surgery results, from all of the accounts I have read. I know they are buying me time, but for right now that is what I want and need. I imagine that unless huge advances are made, I will eventually be having surgery, but given where I am in my life (2 young children and another on the way), the longer I can avoid it, the better. I HAVE to think about the here and now since I am there caregiver, and my husband works long days with a 2.5+hour commute each day. It isn't that I don't care about what will happen to me in the future, but I need to be here and well for these children right now.

Pred is one that I hope never to be on again. But unfortunately, it too is a necessary evil for some people with this disease. It truly depends on the individual.

I think it boils down to how sick you are (this makes a huge difference, honestly.), what you are willing to do in that moment to get better, how the medications affect you (for example, I have HORRIBLE side effects from pred, but non of note from biologics, aside from future risk), and what other factors are involved in your life that affect your decision.

Needless to say, it is highly personal and individual. There never has been, nor will there probably ever be, one answer for everyone.