Doc is letting me pick my treatment; Which one?

[TommyBones]

28 year old male
Symptoms for 2 years now
Dx'd January 2015: Crohn's, terminal ileitis (with complication)
Steroid dependant: Budesonide 1 year & counting
Thiopurine Refractory: Aza, 6MP (they don't work)
Doc says I have an aggressive phenotype of Crohn's
Minimal 'D', never bled, no nausea, lots of pain & cramping, 2nd barium CT is next week to determine disease progress, I guess.

I've been referred to an IBD specialist and he wants to continue 6MP for an additional 1 to 2 years while starting new treatment. I get to pick what I'm going to get. Still no talk of trying Pred, probably because the Budesonide works, to an extent.

My fear is that the next med will not work like everything else, and also that I'll run out of options. I know I have to start somewhere though. Being a young male I'm also afraid of lymphoma. Doc says with 6MP, even stopping will leave a permanent higher risk factor for the L. Make sense? Why continue the 6MP if it's not really working though? Is this for preventing antibodies? I'll take the combo if I have to, I just won't like it.

So, which drug makes sense? Which would you pick?

-Remicade
-Humira
-Entyvio
-New Antibiotic - forgot the name, clinical trial I think-must prove ulcers are present
-Other trial drugs could be an option too
-Any others to consider?

I have access to my blood work if that would help at all. Thanks for any help.

 

[lgpcarter]

I suspect continuing the 6MP is because of antibodies, yes. Or because he thinks it is having some benefit. I am just starting Entyvio, so don't know if it will work for me yet, but it is less effective for Crohn's than colitis for sure. It is the drug of last resort for me.

Stelara is another option not listed there - it did help me, but not enough to get me into remission. I was on it for a year with no side effects.

Hard decision, with the lymphoma risk. Remicade worked very well for me for a number of years, so that would be my pick, but hard to separate my experience from your situation.

 

[KarinaP]

Hey Tommy... I'm sorry to hear you're having a hard time with your treatment but I guess we all go through some rough times until we reach remission.
My previous doctor didn't make decisions, she would mention one or two names, make suggestions and it didn't work well because I made choices based on my fear of the side effects... in this case I opted for Entyvio instead of Remicade. And the results was a fistula with a horseshoe abscess. At the end, I had to switch doctors, had to have two procedures done to place Setons, Cipro and Flagyl to control the infection and just started Remicade because it's supposed to be the best drug for Crohn's with Fistulas.
And sadly all drugs we take will have some side effects... you just have to keep a close watch on your health.... my case I had two basal cel skin cancer within 10 years of treatments with Imunosupressor (first Imuran and then 6MP) but I did reach remission with them....
Just so you know, I don't have diarrhea. I have joint pain, feel bloated all the time, very constipated and now have one fistula.

Anyway, good luck and you will feel better soon!

 

[Justanothercp]

My crohns sounds similar to yours: not really an issue with diarrhea, more an issue of stricturing for me. I have had one resection. Currently I take Lialda, Budesonide, Remicade and supplements, it's kept me not symptoms free but functional for a long time. My md feels better to take chronic Meds than try to go off and end up cutting out more gut.

 

[Mr chicken]

Ds is 11 and was dx at age 7.
So I understand not wanting to run out of meds
Most Gi used mtx plus biologics
Vs aza/6-mp plus biologics due risk of T cell lymphoma is better with mtx
Ds has been on remicade as well as humira
Both have pros /cons
His crohns is similar no d barely bleeding
Lots of constipation
Remicade and humira helped with his crohns
He did have two reactions to remicade after 8 months and had to stop
Humira is more painful :takes longer to work but still works like remicade sorta.
If joints are an issue then biologics like remicade/humira plus mtx
Are pretty standard treatment to take care of arthritis ( Ds has that as well)
I don't think the other one handles arthritis


Good luck

 

[TommyBones]

Thanks for the replies and the perspective check. It's interesting how different this illness is for everyone, as well as how it's treated and what's effective.

So far I don't have ulcers or fistulas, sometimes I fell like there might a restriction, stricture, this may just be in my head though. If the CT shows bigger problems I'll try Remicade first. Otherwise I'm thinking of starting Humira, and 'saving' the Remicade for darker days. I'll ask if MTX will make more sense than 6MP. I don't have insurance approval for anything so I'm still many weeks away from starting anything.

The 18 full pages of info on the trial drug came in the mail yesterday : Rifaximin. Haven't researched it yet or read the papers but it would require starting without any treatments, which the pain would be too much and I need to work, and requires another colonoscopy to prove ulcers, which no one wants to do. I'm putting this one to the side.

Thanks again, I hope you're all feeling well.