Corticosteroids-dependent: time to go with immunosuppresants / biologics?

Hey there,

OK, I want to share my story and to hear from your experience, as I have a dilemma. I was diagnosed with Ulcerative Colitis 10 years ago with quite a bad flare that got me hospitalized for a month; with high doses of corticosteroids I reverted it back and had little activity / stayed in remission during almost 8 years (I had a periannal fistula that got active from time to time and 2 medium flare-ups during that time, controlled with corticosteroids). 2 years ago, however, 2 flare ups reverted with high doses of corticosteroids (60mg during 2 weeks + the stepping back process), last year 3 mild flare-ups controlled with medium? doses of corts (30mg ,40mg and 30mg) and this year...well, now getting back in remission from a flare after taking high dose corts once more time (45mg 2 weeks, 60mg 1 week as 45 was not enough, and then -10mg each week; now I'm with 20mg in my way to slowly get rid of them).

I became corticosteroid-dependent, meh.

Some more notes:

> During this 10 years I've been treated with mesalazine. During lots of time with the highest dose (4.800mg) but my GI tried to lower the dose to 2.400mg after some of my flare-ups. Maybe we shouldn't this last time (no regrets, though).

> Before my last/current flare I was 4 full months clear of corticosteroids and totally in remission.

> I have a healthy life style: no stress, healthy diet, use of probiotics, mild exercise...

> Though I was initially diagnosed as UC, last colonoscopies and some other indicators (the fistula; not always rectal bleeding on my flares, but really bad abdominal pain; low iron even without bleeding) suggest that at least it's an indeterminate colitis and could be crohn's.

My GI suggested that probably I'd need to take an step and go for immunosuppresants or biologics cause I can't keep taking corticosteroids that frequently and with that doses. I fully agree with that. I went for a second opinion and they suggested the same.

However, here's my dilemma:

A) What if I tried one last time to keep on remission with my previous life-style / meds plus a bit of help before going into immunosuppresants / biologics?

- I quitted smoking tobacco one month ago; I thought it was helping but probably not (I was without smoking during year and a half during my remission 4 years ago and I was great at that time) so it may help now stay in remission if I actually had Crohn's?

- Go for MMJ: CBD Oil plus few THC income somehow (vaping or smoking). I smoked when I was a teenager: actually I got my UC/Crohn's active months / one year after I quitted smoking (probably not related, but).

- I'll keep taking probiotics (vivomixx, plus kefir), maybe add new supplements I'm not taking now (D vitamin, glutamine, fish oil pills).

B) OR should I follow my GIs suggestions and go for immunosuppresants / biologics?

I'm open to both paths and probably will follow my doctors suggestions but I just want to hear experiences on breaking corticosteroids-dependence with MMJ / Probiotics / Supplements / Healthy lifestyle (plus my non lowering dose of mesalazine). Do you think that would be possible / worth to try before stepping up on meds?

What's your thoughts?

Thanks (and sorry for the long post)

Mikel

I only used Mesalamine enemas in one of the flare-ups years ago.
It didn't seem to work too much, though I can't say now, I used them along with prednisone.

I'd totally also add them to the prevention pack if they could help to keeping me in remission.
Are mesalamine enemas also used for remission, not just in flare-ups?

Thanks!

Yes, I wpuld go pn immunomodulators and/or biologics. A remission should last at least 2 yeara. Flaring 3 times a year means you're not well managed. Mesalamine isn't that effective with crohn's (mesalamine treats shallow inflammation like uc, Crohn's is deep tissue inflammation beyond what mesalamine can reach).

I've been on remicade and 6mp since 2012, achieved a remission and no side effects.