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New here. Dont know where to go from here.

Hello. I'm just looking for support. Here is my story.
I am 35. I was diagnosed at 15 after about 3 years of undiagnosed disease. 160lbs at 12 and 96 at time of diagnosis. Spent quite a bit of time in the hospital. Was on meds for a few years. Never gained back weight. Went off meds in early 20s. Used a lot of cannabis and went into remission. Have had no symptoms or need for treatment in many years over a decade. Was up to 220. (Overweight) down to 175 now. (My correct weight) Recently had a flare. Apparently I have some perforations. Anyway the gastro jumped straight into prescribing Humira. I had a 2 week course of antibiotics and prednisone. After doing research I'm concerned that other treatments were not recommended first. Also I found the doctor has received payments from the manufacturer of Humira.
Is it normal to go straight to humira given my long period of no active disease?
Could the doctor be incentivized to prescribe it?
Should I get a second opinion?

Just looking for other people's opinions based on their own experiences. Thanks.
 
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Also ill say I had one CT scan and the same doctor also immediately referred me to a surgeon, which freaked me out. After my follow up and I was responding to the meds she canceled the surgical consult. (Another in house doctor. Its a large multi specialty provider). This was also unusual to me.
 
I was diagnosed at age 15, 18 years ago, and I'm now a GI nurse as well. The most recent studies do lean towards starting biologics like Humira as a first line treatment. I don't know if any kind of compensation for the physicians that I work with for prescribing certain drugs. I have tried and failed Humira, Cimzia, and Remicade. I had a small bowel resection in 2016 and started Stelara as soon as the clinical trials for it were complete (was going to be part of the clinical trials but the gastroenterologists at university of Chicago said the dose would be increased once approved). Haven't had any diet modifications since surgery and have gained as much as 90 pounds at one point.....went from 125 to almost 215 at one point.

Definitely talk with your gastroenterologist if you have questions! A good one will be 100% open and honest with you! I'm lucky to work with two amazing ones!
 
Ok thank you. When I was diagnosed 20 years ago humira didnt exist. Moderate to severe crohns after other treatments fail is the indications for humira i was reading about.
The doctor told.me I would have to take it indefinitely which is also concerning.
 
Biologics usually don't last "forever", but taking them as long as they work is usually the route taken. You don't want the risk of having to lose a part of the intestines. You obviously have inflammation even if you might not have obvious symptoms at times. It is more scary not to do anything. If you read through the forums, you will find that many have been on biologics with utmost success. My son is doing really well on Remicade. It was a game changer for him. Because of it, he was able to complete university normally and now is working. Before it, he was very thin, had mobility issues as well (arthritis as a result of crohn's). I know it's scary at the beginning and almost everyone feels that way. Good luck.
 
Biologics usually don't last "forever", but taking them as long as they work is usually the route taken. You don't want the risk of having to lose a part of the intestines. You obviously have inflammation even if you might not have obvious symptoms at times. It is more scary not to do anything. If you read through the forums, you will find that many have been on biologics with utmost success. My son is doing really well on Remicade. It was a game changer for him. Because of it, he was able to complete university normally and now is working. Before it, he was very thin, had mobility issues as well (arthritis as a result of crohn's). I know it's scary at the beginning and almost everyone feels that way. Good luck.
This is my first post, so bare with me. I agree with Jo-Mom. I am 67 and was diagnosed with UC at the age of 16. Back then all they had was sulfasalazine and prednisone. Needless to say, I was on steroids for 16 years (in the beginning I weighed 87 lb....bad disease). After children I went in to remission for 15 years but that did not last. In my 40s I again had very bad disease now diagnosed as Crohns....steroids again started for quick relief. Remicade was a Godsend as I was able to get off steroids. It worked well but, .eventually I needed higher dosing and more frequent. So, I was switched to Humira for a few years, which worked well with methotrexate, until I developed a spinal cord demilinating lesion. They immediately took me off Humira. Back on steroids and Entyvio. Entyvio required every 4 wk. instead of 8 week infusions and now I've been on Entocort as well. Off methotrexate due to very high risk of death if I get Covid (I'm an RN as well with higher exposure risk). I am now in the process of starting Stelara and pray for good results.

My point is I have had this disease now for over 50 years and it has been significantly bad disease, moderate to severe, involving 2/3 of my colon with scarring of the whole ascending colon working on the transverse. I have fistulizing disease, have had erythema nodosums, pyrogangrinosums, eye problems, mouth ulcers, etc. Life altering as you all know...but we deal with it. I have never had surgery. Without biologics,. it would be different. I am being seen at the University of Miami. My doctor does not recommend surgeries unless it is emergent......Crohns disease just comes back. And she recommends starting with the biologic that has the best record of improvement (Remicade). New biologics are always being researched and yes they come with risk. But I have a life and my colon!
 
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